As I tackle a mountain of laundry this morning and wait for yet another doctor's office to call me back, I got some random thoughts bouncing around my head. So pardon this word explosion. You might relate or not, which if that's the case, try not to take this as personal but rather educational. A teachable moment as they say.
Proving your autism street cred. Don't tell me as soon as you meet me that your aunt's boyfriend's sister once worked in a summer camp for special needs kids. I don't care. I know you're just trying to relate to me. I know it comes from a good place but please stop. Trying to prove how down you are to an O.G. ("original gansta" in case you didn't know) like me, isn't working. It's just drawing the line in the sand, driving us further apart. Let's pretend there is a game called "Six Degrees of Autism Separation". If your connection is that far removed that they may in fact been in a movie with Kevin Bacon, you're an "autism tourist" in my eyes. It's all cool that you can dig the culture but I know you're not a local okay? Feel free to ask me for directions but in no way am I the only map around here.
Let's all just agree that after a certain number of years you get what I call "autism tenure". This is not to say I know it all BUT being told that vaccines may cause autism isn't really news nor does it really help. My kid is 9. What would you like me to do with this information? Go back in time and stop it? (Which I wouldn't even if I could) Or the fact that I had a c section. Or older fathers have more autistic kids? Gee honey, let me go back in time and NOT fall in love with you. Discussing what may of caused my son's autism isn't exactly what I consider small talk. It's a serious debate worthy topic. Most parents I know don't even want to go into it with doctors and professionals because at the end of the day, it really doesn't matter. It doesn't change the now of our situation. I'd rather focus on that. Folks with "autism tenure" are in grave danger of rolling their eyes so hard they get stuck. So please, you see parents of a teenager with autism, don't ask them if they breast fed their kid. It doesn't help.
You know what I want to hear because I know there is someone reading this right getting upset or indignant that I dare even complain what is said to me when it's well meaning? Nothing. That's right nothing. You know what you can do. LISTEN. Listen to what I say and ask questions from that. Ask thought provoking ones too. Not just "Why is your kiddo randomly knocking on walls as he paces up and down the hallway? Is he looking for ghosts?" (This was said to me recently. Good times!) I have no clue why he does and even when I do answer something like that, the answer never seems to satisfies the person. There's no winning with someone who questions what my kiddo is doing because it's clear to me they just want me to stop him from doing what he is doing. (which I'm guessing is sensory/coping skill related) This is not to say if he was kicking holes in the wall, yeah, I'm gonna stop that. Dude, I'm not dense. But knocking on a the wall or pacing around at a very crowded gathering of people he doesn't see all that often, is it really hurting you? Or anyone else? Cut him some slack. He's only nine. It's not like he can down a glass of wine or step outside for a smoke break when he needs a breather like you or I might. I know what the alternative can be, a meltdown. Trust me, his knocking on the wall is nothing. Don't question my "autism tenure" here. I've done my years here with him. You haven't.
I said it recently on my Facebook page in response to a question about extended family gatherings, "They want a Norman Rockwell painting for their family gathering. We don't live a Norman Rockwell life" It's just what it is. It's especially maddening for me because I don't even have any neurotypical kiddos and I can draw from that experience. Like this is the only life I know. Good lord, if one got dropped off on my doorstep hitting milestones and reading at grade level, well, I wouldn't even know where to begin with that. My house is like living in the movie "Groundhog Day". We do it the same way, every day or there is HELL TO PAY!
Now pardon me as I go fold these incredibly long jeans. Damn, as the kiddo gets bigger, the laundry just gets more insane. I thought that would ease up but it didn't. Groundhog Day moment once again! ;-)
Thursday, December 26, 2013
Monday, December 9, 2013
Cookie Cutter Accommodations
The kiddo loves going to the movies. Honest to god, it could be a screening of Patton and as long as I bought the big popcorn, he'd be all in for going. Because I know some of you are thinking it, no, we haven't been to any of the Sensory Friendly screenings that the AMC theater chain offers. It's nothing against it. We just started going to flicks before it was even offered in our area. The kiddo does pretty well at the movies so to us it wasn't something we needed.
I write this autism blog and like it or not, some folks seem to want to know my opinion of such things cause I've got some sort of autism tenure. So I thought, well, why the Hell not? I don't want my autism street cred questioned. Also, the sensory friendly showing time worked out well with our action packed schedule of going to see Granny after and then to the pancake house for the early bird dinner. (Hey I had a coupon!) Plus, I'm getting blog fodder from it. This wins all around. I was really on a fact finding mission when you think about it. I can totally write this off on my taxes right? Business expense? No? Well I did observe a thing or two and I started to think who are these sensory accommodations for really? Not just the kids really.
The house lights stay on. That's cool. Made looking in my giant Mom bag for my Chapstick easier. Plus if you had to get up for a bathroom or snack run, you could actually find your seat and not be those hoovering folks that seem to have lost all sense of direction when they return to a theater. That was a Pro. However, it does bug the eyes after a while depending where you sit. We were right under a light fixture. Maybe next time depending on the movie, I'll bring a magazine.
No previews or ten thousand commercials to sit through before the show. It was just BOOM! MOVIE! I liked that. I liked that a lot. Have you noticed they show movie previews for flicks that won't even be out till next summer??? You know how annoying it is to have to tell my kiddo every time that it will MONTHS before that bad ass Lego Movie will be out. So thank god they yanked those. Big Pro there.
The sound is lower. Like a lot lower. To the point where I thought at first "Damn, I really need to get my hearing checked. The kiddo blasting his iPad while watching TV has taken it's toll." Then I remembered that this was one of the Pros of this arrangement. However this coupled with a lot of autism kids making well autism noise made it hard to hear the actual film at times. Now honestly, this didn't really bother me but my rule loving son got ticked off! Started "shhing" people left and right. Oh the irony of a kiddo being intolerant of those with autism when he in fact is autistic himself. I grabbed the chance of this being a "teachable moment" and told him to ignore them. I could tell this confused the crap out of him. Up to this moment movie theater equated silence and here I was rocking his world and changing "the rules". You know how an autistic kiddo like him loves him some rules baby! I found myself having to correct him correcting others. At first I worried my talking would annoy others around me but I had a kid next to us that had gotten up and walked around the whole theater no less than ten times during the show. I remembered I was with my tribe. I'm understanding of their ways. They get ours. So I stopped panicking.
All in all, we were certainly the less rowdy of the bunch but all of us there seem to enjoy being in a room full of families just like our own. No dirty looks. No Sanctimommies and their exasperated signs while seeing my kid eat his body weight in popcorn soaked in some sort of yellow "butter" type liquid while feeding their lovey precious babies organic micro biotic kale chips. That was certainly a nice accommodation for me. If I had to correct my kid (and I did) nobody really seemed to care. They were probably just happy it wasn't them at that moment. (we all seemed to take turns)
I'll be honest though. I'm not sure if we'll go again to a sensory screening. The kiddo, after the movie, was scripting many of the "movie rules" to me on the car ride home. It was quite clear to me that based on his prior experience, the talking, the lights, the lower volume, the getting up and quirking around, all of the sensory accommodations offered, bugged the ever living crap out of him. I guess having so much experience the other way was almost chaotic for him. For us, we probably won't go out of our way to do it again. I think if I had started this is as his first movie going experience, it would be different. I am not going to lie. Sitting there with a room full of my autism homeboys and girls was awesome. We were all just trying to enjoy an activity we all thought as new parents that one day we would do, taking our kids to the movies. Not thinking about therapy, IEPs, insurance and doctor appointments. So yeah, these accommodations kind of rock for us neurotypical parents. However not all autism is the same and these really weren't working for my kiddo. Kind of reminded me that cookie cutter accommodations don't always mean success. Some tweaking will be needed. Maybe a good social stories. Autism parents love them some social stories.
You see, I got to thinking about it last night. I can't be blogging for acceptance and tolerance and embracing all the quirks if I got my boy thinking he shouldn't have to do so. While we won't go all the time to a sensory friendly screening, we will go now and then. I want to teach him about accepting others and how their autism might present itself. The kiddo of mine has an ego and I'm betting a large popcorn I can probably explain to him that he's setting a great example with his good movie going behavior. So many neurotypical kids are wonderfully accepting of him and I want him to be the same of others, no matter what their neurology. It will be tricky but I think we can do it.
Next Smurf or Alvin and the Chipmunk nonsense I got to sit through, I'm definitely bringing a book!
I write this autism blog and like it or not, some folks seem to want to know my opinion of such things cause I've got some sort of autism tenure. So I thought, well, why the Hell not? I don't want my autism street cred questioned. Also, the sensory friendly showing time worked out well with our action packed schedule of going to see Granny after and then to the pancake house for the early bird dinner. (Hey I had a coupon!) Plus, I'm getting blog fodder from it. This wins all around. I was really on a fact finding mission when you think about it. I can totally write this off on my taxes right? Business expense? No? Well I did observe a thing or two and I started to think who are these sensory accommodations for really? Not just the kids really.
The house lights stay on. That's cool. Made looking in my giant Mom bag for my Chapstick easier. Plus if you had to get up for a bathroom or snack run, you could actually find your seat and not be those hoovering folks that seem to have lost all sense of direction when they return to a theater. That was a Pro. However, it does bug the eyes after a while depending where you sit. We were right under a light fixture. Maybe next time depending on the movie, I'll bring a magazine.
No previews or ten thousand commercials to sit through before the show. It was just BOOM! MOVIE! I liked that. I liked that a lot. Have you noticed they show movie previews for flicks that won't even be out till next summer??? You know how annoying it is to have to tell my kiddo every time that it will MONTHS before that bad ass Lego Movie will be out. So thank god they yanked those. Big Pro there.
The sound is lower. Like a lot lower. To the point where I thought at first "Damn, I really need to get my hearing checked. The kiddo blasting his iPad while watching TV has taken it's toll." Then I remembered that this was one of the Pros of this arrangement. However this coupled with a lot of autism kids making well autism noise made it hard to hear the actual film at times. Now honestly, this didn't really bother me but my rule loving son got ticked off! Started "shhing" people left and right. Oh the irony of a kiddo being intolerant of those with autism when he in fact is autistic himself. I grabbed the chance of this being a "teachable moment" and told him to ignore them. I could tell this confused the crap out of him. Up to this moment movie theater equated silence and here I was rocking his world and changing "the rules". You know how an autistic kiddo like him loves him some rules baby! I found myself having to correct him correcting others. At first I worried my talking would annoy others around me but I had a kid next to us that had gotten up and walked around the whole theater no less than ten times during the show. I remembered I was with my tribe. I'm understanding of their ways. They get ours. So I stopped panicking.
All in all, we were certainly the less rowdy of the bunch but all of us there seem to enjoy being in a room full of families just like our own. No dirty looks. No Sanctimommies and their exasperated signs while seeing my kid eat his body weight in popcorn soaked in some sort of yellow "butter" type liquid while feeding their lovey precious babies organic micro biotic kale chips. That was certainly a nice accommodation for me. If I had to correct my kid (and I did) nobody really seemed to care. They were probably just happy it wasn't them at that moment. (we all seemed to take turns)
I'll be honest though. I'm not sure if we'll go again to a sensory screening. The kiddo, after the movie, was scripting many of the "movie rules" to me on the car ride home. It was quite clear to me that based on his prior experience, the talking, the lights, the lower volume, the getting up and quirking around, all of the sensory accommodations offered, bugged the ever living crap out of him. I guess having so much experience the other way was almost chaotic for him. For us, we probably won't go out of our way to do it again. I think if I had started this is as his first movie going experience, it would be different. I am not going to lie. Sitting there with a room full of my autism homeboys and girls was awesome. We were all just trying to enjoy an activity we all thought as new parents that one day we would do, taking our kids to the movies. Not thinking about therapy, IEPs, insurance and doctor appointments. So yeah, these accommodations kind of rock for us neurotypical parents. However not all autism is the same and these really weren't working for my kiddo. Kind of reminded me that cookie cutter accommodations don't always mean success. Some tweaking will be needed. Maybe a good social stories. Autism parents love them some social stories.
You see, I got to thinking about it last night. I can't be blogging for acceptance and tolerance and embracing all the quirks if I got my boy thinking he shouldn't have to do so. While we won't go all the time to a sensory friendly screening, we will go now and then. I want to teach him about accepting others and how their autism might present itself. The kiddo of mine has an ego and I'm betting a large popcorn I can probably explain to him that he's setting a great example with his good movie going behavior. So many neurotypical kids are wonderfully accepting of him and I want him to be the same of others, no matter what their neurology. It will be tricky but I think we can do it.
Next Smurf or Alvin and the Chipmunk nonsense I got to sit through, I'm definitely bringing a book!
Monday, December 2, 2013
Top Holiday Gift Ideas for Kids with Autism
In honor of my 100th blog post, I thought I'd channel my inner Oprah Winfrey and make a "Mama Fry's Favorite Things" list. I had a great day dream going in my head that I would loudly announce, "You get a fidget! And you get a fidget!! Everyone in the audience gets fidgets!!!" and all these sullen looking interns dressed up like elves come out and just hand you all this stuff. Everybody would be jumping up and down and the kids would be flapping and it would be awesome.
Then I remembered I'm not Oprah and more importantly, I do not have Oprah money. Sorry fries. The only thing I could give away is various expired coupons I forget to use and old ATM receipts from my wallet. Quite a few folks follow this blog. While they don't have kids with autism, they know someone that does. They want to get them a nice holiday gift and they are kind of scratching their heads on what to give. Hell, some parents reading this are probably thinking this same. So here's a list of the top winners at French Fry Inc and the places you can get them. Kiddo tested and approved! (Disclaimer, these opinions are my own. I was provided samples or had previously bought the items of each to review)
1) CHEWIGEM "Dog Tags" style necklace $19.95 For those who need to chew for sensory input and self calming. I love these things. The site itself has lots of options, styles and colors. Even bracelets too. Stylish to look just like an accessory but made from non-toxic silicone. The necklace even has a breakaway clasp for safety. Easy to clean by hand or toss it in the top rack of the dishwasher. A perfect stocking stuffer. Get them here at http://www.chewigemusa.com/collections/dog-tags
2) ROCKIN' ROCKER BOARD from Fun and Function $69.95 This is the sturdiest rocker balance board I have ever seen! I ought to know, the kiddo has broken quite of few by throwing them. This thing is solidly made. Doesn't take up a lot of room. Easy to wipe down to clean. Use it standing, sitting or kneeling. This board is great for working on balance and motor planning. When I first took it out of the box he immediately started playing with it. Winner Winner!! Get them here at http://funandfunction.com/rockin-rockertm-board.html
3) SPACE EXPLORER Body Sock from Fun and Function starting at $32.99 Need a great sensory toy that's great for travel? This is the toy! Super for motor planning and perfect for those kids who are MAJOR sensory seekers. If your kiddo is like mine, this is really great for the input they are craving. Folds up easy for a suitcase and is machine washable because let's face it, life is messy. Comes in a variety of sizes and colors. Now animals prints too!! Get it here at http://funandfunction.com/space-explorers.html
4) EXERCISE BALL by Natural Fitness at Target $24.99 Got a kiddo just seems to be bouncing off the walls? Give them a place to bounce! Trampolines are great but many are made only for little kids. This ball was a weight capacity of up to 300 pounds. Trust me, my kiddo has given this ball a solid test over the past two years. Still going very strong. Inflates in minutes. Good for when they need to just get out of some cabin fever energy or just chilling on it watching TV. Great for balance and working on flexibility. They do come in many sizes and I got mine in Target itself one day. Order them online at http://www.target.com/p/natural-fitness-300-lb-burst-resistant-exercise-ball-55cm-plum/-/A-10988471#prodSlot=medium_1_9&term=exersize+ball
5) BEAN BAG from The Bean Bag prices vary according to size and material. After a long day of school and therapy, the kiddo's favorite way to relax is to flop in his bean bag and watch some TV or chill out with an iPad game or ten. :-) If he's having a hard time and I can see he is craving some deep pressure input, I'll put this on top of him. They are cozy as can be. This company is great but really there are so many stores that carry them. When in doubt, go for the biggest size. Kids grow over night and it's better for it to be to big than to small. Check them out here at http://www.thebeanbagchairoutlet.com/
6) WEIGHTED BLANKET by SensaCalm prices vary according to size and materials. This is a very helpful item for a tired autism family. Weighted blankets are a natural way to provide calming sensory input throughout the night for your child so they can sleep. Bonus part, you then can sleep!! The kiddo's grandparents bought him one last Christmas and we love it. Check out the web site here at http://www.sensacalm.com/
7) HAND MINI MASSAGER by HoMedics $5.81 Another great on the go item for sensory input. I think we have about four of these floating around the house. Handy for Mom and Dad too after a long day of work. Get them here at http://www.walmart.com/ip/HoMedics-Thera-P-Handheld-Personal-Mini-Massager-Blue/17176523
8) CRYSTAL SQUEEZE BEAD BALL by Flaghouse $6.95 Sometimes you just got to wiggle, move, fidget or just do something with your hands. Small enough to go in a pocket or be tossed in the great big old mom purse you carry around.
One other piece advice I want to share with you all. If you have parents asking for what you think is kind of odd/quirky/weird to you stuff, just get it. Don't question it. They know their kid best. If they say they need a pink fuzzy pair of bunny slippers for their son, you get them! It's not about you. It's about making that kid happy. So if you get a request for a warehouse size box of Goldfish crackers or a sleeve of red Solo plastic cups, wrap it up. You're going to make that kid so stinking happy! Some of these web sites and companies will be completely new to you but poke around on them. They have some great options and other suggestion that also could be hits. Besides, you got birthdays to think about as well!
Now pardon me while I go make up my wish list, I'm hopping Santa puts Benedict Cumberbatch and a bottle of Champagne under my tree. Or my husband and a box of wine. That'll work too. :-)
Then I remembered I'm not Oprah and more importantly, I do not have Oprah money. Sorry fries. The only thing I could give away is various expired coupons I forget to use and old ATM receipts from my wallet. Quite a few folks follow this blog. While they don't have kids with autism, they know someone that does. They want to get them a nice holiday gift and they are kind of scratching their heads on what to give. Hell, some parents reading this are probably thinking this same. So here's a list of the top winners at French Fry Inc and the places you can get them. Kiddo tested and approved! (Disclaimer, these opinions are my own. I was provided samples or had previously bought the items of each to review)
1) CHEWIGEM "Dog Tags" style necklace $19.95 For those who need to chew for sensory input and self calming. I love these things. The site itself has lots of options, styles and colors. Even bracelets too. Stylish to look just like an accessory but made from non-toxic silicone. The necklace even has a breakaway clasp for safety. Easy to clean by hand or toss it in the top rack of the dishwasher. A perfect stocking stuffer. Get them here at http://www.chewigemusa.com/collections/dog-tags
2) ROCKIN' ROCKER BOARD from Fun and Function $69.95 This is the sturdiest rocker balance board I have ever seen! I ought to know, the kiddo has broken quite of few by throwing them. This thing is solidly made. Doesn't take up a lot of room. Easy to wipe down to clean. Use it standing, sitting or kneeling. This board is great for working on balance and motor planning. When I first took it out of the box he immediately started playing with it. Winner Winner!! Get them here at http://funandfunction.com/rockin-rockertm-board.html
3) SPACE EXPLORER Body Sock from Fun and Function starting at $32.99 Need a great sensory toy that's great for travel? This is the toy! Super for motor planning and perfect for those kids who are MAJOR sensory seekers. If your kiddo is like mine, this is really great for the input they are craving. Folds up easy for a suitcase and is machine washable because let's face it, life is messy. Comes in a variety of sizes and colors. Now animals prints too!! Get it here at http://funandfunction.com/space-explorers.html
4) EXERCISE BALL by Natural Fitness at Target $24.99 Got a kiddo just seems to be bouncing off the walls? Give them a place to bounce! Trampolines are great but many are made only for little kids. This ball was a weight capacity of up to 300 pounds. Trust me, my kiddo has given this ball a solid test over the past two years. Still going very strong. Inflates in minutes. Good for when they need to just get out of some cabin fever energy or just chilling on it watching TV. Great for balance and working on flexibility. They do come in many sizes and I got mine in Target itself one day. Order them online at http://www.target.com/p/natural-fitness-300-lb-burst-resistant-exercise-ball-55cm-plum/-/A-10988471#prodSlot=medium_1_9&term=exersize+ball
5) BEAN BAG from The Bean Bag prices vary according to size and material. After a long day of school and therapy, the kiddo's favorite way to relax is to flop in his bean bag and watch some TV or chill out with an iPad game or ten. :-) If he's having a hard time and I can see he is craving some deep pressure input, I'll put this on top of him. They are cozy as can be. This company is great but really there are so many stores that carry them. When in doubt, go for the biggest size. Kids grow over night and it's better for it to be to big than to small. Check them out here at http://www.thebeanbagchairoutlet.com/
6) WEIGHTED BLANKET by SensaCalm prices vary according to size and materials. This is a very helpful item for a tired autism family. Weighted blankets are a natural way to provide calming sensory input throughout the night for your child so they can sleep. Bonus part, you then can sleep!! The kiddo's grandparents bought him one last Christmas and we love it. Check out the web site here at http://www.sensacalm.com/
7) HAND MINI MASSAGER by HoMedics $5.81 Another great on the go item for sensory input. I think we have about four of these floating around the house. Handy for Mom and Dad too after a long day of work. Get them here at http://www.walmart.com/ip/HoMedics-Thera-P-Handheld-Personal-Mini-Massager-Blue/17176523
8) CRYSTAL SQUEEZE BEAD BALL by Flaghouse $6.95 Sometimes you just got to wiggle, move, fidget or just do something with your hands. Small enough to go in a pocket or be tossed in the great big old mom purse you carry around.
One other piece advice I want to share with you all. If you have parents asking for what you think is kind of odd/quirky/weird to you stuff, just get it. Don't question it. They know their kid best. If they say they need a pink fuzzy pair of bunny slippers for their son, you get them! It's not about you. It's about making that kid happy. So if you get a request for a warehouse size box of Goldfish crackers or a sleeve of red Solo plastic cups, wrap it up. You're going to make that kid so stinking happy! Some of these web sites and companies will be completely new to you but poke around on them. They have some great options and other suggestion that also could be hits. Besides, you got birthdays to think about as well!
Now pardon me while I go make up my wish list, I'm hopping Santa puts Benedict Cumberbatch and a bottle of Champagne under my tree. Or my husband and a box of wine. That'll work too. :-)
Monday, November 25, 2013
"They'll eat when they're hungry."
No honey, they won't. Not my kiddo and from what I hear, not a lot of other kids with autism either.
This sentence has been way to much. From the get go. You see, my kiddo would in fact pick starving rather than eating. That lent itself to me doing what I call "Desperate Acts of Parenting". Think how cranky/listless and down right crappy you feel when you are hungry. Add a dash of autism and you got a recipe for an epic meltdown with poor health for dessert. Good times people! Good times. I would beg this kiddo to eat anything. I mean anything, if it meant something would pass those lips of his. How else do you think this blog got named? Fries for breakfast? Sure! They are just hash browns in stick form. Same thing! Not to mention the limited places we could grab a bite to eat ourselves that we could take him that would be quick and would be able to purchase through a drive thru window should we not even get across the parking lot without a meltdown because he saw a school bus he wanted to touch barreling down the highway. Big mean mommy that I am, I wouldn't let him run into traffic to go play on it. Plus the added bonus of those little indoor playgrounds. Nothing helps builds up your child's budding immune system by being exposed to the petri dish that is the ball pit! Hey it's good sensory work. I'll just give him a Silkwood type shower after. He'll be fine.
I started seeing the eating issues when the kiddo was about twenty months old. Being the new (clueless) mom that I was, I eagerly accepted that he was just starting to be fussy as a result of the "terrible twos" that he was approaching. Four months ahead of the game! My word! Truly he was gifted. However when mealtime became a battle that ended in tears, usually mine, I suspected it was more than just being a toddler. By the time we finally got an early intervention speech therapist into our lives to take a look at this, I was frazzled hot mess. I was desperate. Not eating was effecting EVERYTHING and EVERYBODY in this house! (Except the dog actually. Whatever the kiddo threw, boy, that puppy was loving it!) That poor therapist was probably driven to drink by the kiddo. Not a single spoon or those little Nuk brushes would go in his mouth without a major production. It wound up being one single spoon that my son would actually wrap his lips around in the beginning. If the house ever caught fire I think I would of run back into the burning flames to rescue that spoon. Even she seemed a little shocked that I was willing to feed him chocolate pudding at 9:30 in the morning if it meant something on a spoon got in his mouth. I did not care. When it came to getting him to eat, it was by any means necessary.
We are now on our second attempt at feeding therapy with this kiddo. I'm cautiously optimistic by his progress this go around. We have gotten him to try more things. He finally started used a fork correctly. Might be a no brainer for anyone else but for us it was a multi step process of learning how to accept that this sharp pointy thing was going to go in his open mouth just far enough to get the food in but not so far to gag on it or stab himself. That he would then bite down on the fork and pull it out to get the food off the fork. That he would have to manage the sensation of the different textures of the food next to feeling the texture of the metal or plastic of the fork and then remember after all that to chew his bite completely and then swallow. Repeat, repeat and repeat. It's a process.
I've kind of accepted that eating is always going to be a major issue for him but hey, what else is new. The fact that the kiddo is willing to try some new foods here and there give me some hope. Please though, please don't ever tell me he will eat when he's hungry because after nine years of this I can tell you without a doubt that he won't. This isn't him being a fussy eater. This isn't just me spoiling him. Please don't tell me to bring him shopping or involve him in the cooking because I've done both and neither have made a dent in this problem. (Much like his father, he doesn't like cooking at all.) Yeah, I already know about all those how to hide veggies in foods cookbooks. Bought a few of them too. Problem was he wouldn't even eat the foods that were suppose to be the carriers of the secret veggies. We have about a thousand different mountains to climb. It stinks that eating is one of them. Sensory processing disorder is real and sometimes it's a real pain in the ass. I'm not going to lie about that. I can never even tell what each meal is going to be like still.
Let me break it down to you this way. This kiddo is the walking french fry but there was a time that they couldn't be any other shape but sticks. No curly fries. No crinkle cut. Don't even think about steak fries or wedges. Matchsticks cut or nothing. The first time he "kissed" a waffle fry I almost wept for joy. Yeah, it can be just that complex. So I don't know what I was thinking when I offered him mashed potatoes last night. Just the inside of a fry right? WRONG!
I must of had a leave of my senses. :-)
This sentence has been way to much. From the get go. You see, my kiddo would in fact pick starving rather than eating. That lent itself to me doing what I call "Desperate Acts of Parenting". Think how cranky/listless and down right crappy you feel when you are hungry. Add a dash of autism and you got a recipe for an epic meltdown with poor health for dessert. Good times people! Good times. I would beg this kiddo to eat anything. I mean anything, if it meant something would pass those lips of his. How else do you think this blog got named? Fries for breakfast? Sure! They are just hash browns in stick form. Same thing! Not to mention the limited places we could grab a bite to eat ourselves that we could take him that would be quick and would be able to purchase through a drive thru window should we not even get across the parking lot without a meltdown because he saw a school bus he wanted to touch barreling down the highway. Big mean mommy that I am, I wouldn't let him run into traffic to go play on it. Plus the added bonus of those little indoor playgrounds. Nothing helps builds up your child's budding immune system by being exposed to the petri dish that is the ball pit! Hey it's good sensory work. I'll just give him a Silkwood type shower after. He'll be fine.
I started seeing the eating issues when the kiddo was about twenty months old. Being the new (clueless) mom that I was, I eagerly accepted that he was just starting to be fussy as a result of the "terrible twos" that he was approaching. Four months ahead of the game! My word! Truly he was gifted. However when mealtime became a battle that ended in tears, usually mine, I suspected it was more than just being a toddler. By the time we finally got an early intervention speech therapist into our lives to take a look at this, I was frazzled hot mess. I was desperate. Not eating was effecting EVERYTHING and EVERYBODY in this house! (Except the dog actually. Whatever the kiddo threw, boy, that puppy was loving it!) That poor therapist was probably driven to drink by the kiddo. Not a single spoon or those little Nuk brushes would go in his mouth without a major production. It wound up being one single spoon that my son would actually wrap his lips around in the beginning. If the house ever caught fire I think I would of run back into the burning flames to rescue that spoon. Even she seemed a little shocked that I was willing to feed him chocolate pudding at 9:30 in the morning if it meant something on a spoon got in his mouth. I did not care. When it came to getting him to eat, it was by any means necessary.
We are now on our second attempt at feeding therapy with this kiddo. I'm cautiously optimistic by his progress this go around. We have gotten him to try more things. He finally started used a fork correctly. Might be a no brainer for anyone else but for us it was a multi step process of learning how to accept that this sharp pointy thing was going to go in his open mouth just far enough to get the food in but not so far to gag on it or stab himself. That he would then bite down on the fork and pull it out to get the food off the fork. That he would have to manage the sensation of the different textures of the food next to feeling the texture of the metal or plastic of the fork and then remember after all that to chew his bite completely and then swallow. Repeat, repeat and repeat. It's a process.
I've kind of accepted that eating is always going to be a major issue for him but hey, what else is new. The fact that the kiddo is willing to try some new foods here and there give me some hope. Please though, please don't ever tell me he will eat when he's hungry because after nine years of this I can tell you without a doubt that he won't. This isn't him being a fussy eater. This isn't just me spoiling him. Please don't tell me to bring him shopping or involve him in the cooking because I've done both and neither have made a dent in this problem. (Much like his father, he doesn't like cooking at all.) Yeah, I already know about all those how to hide veggies in foods cookbooks. Bought a few of them too. Problem was he wouldn't even eat the foods that were suppose to be the carriers of the secret veggies. We have about a thousand different mountains to climb. It stinks that eating is one of them. Sensory processing disorder is real and sometimes it's a real pain in the ass. I'm not going to lie about that. I can never even tell what each meal is going to be like still.
Let me break it down to you this way. This kiddo is the walking french fry but there was a time that they couldn't be any other shape but sticks. No curly fries. No crinkle cut. Don't even think about steak fries or wedges. Matchsticks cut or nothing. The first time he "kissed" a waffle fry I almost wept for joy. Yeah, it can be just that complex. So I don't know what I was thinking when I offered him mashed potatoes last night. Just the inside of a fry right? WRONG!
I must of had a leave of my senses. :-)
Monday, November 18, 2013
"Oh my kid does that too."
I hear this sentence a lot. I've heard it expressed in different ways though. Sometimes it's said in an effort to relate to me and my kiddo. Sometimes I hear it and I feel completely dismissed by it. And sometimes I say it and I have seen looks of hope, pity and outright shock in the face of a parent looking at me.
"Your kiddo is obsessed with trains. Oh my kid does that too." Well that's great and all but my kiddo is nine. I'm betting your kiddo if they are the same age, is well past that point of all things Island of Sodor. I'm betting you don't plan vacations on around train museums to visit or have to make up social stories about when the train ride is finished we say thank you and we do not cry. Plus when this was said to me during our first trip down the rabbit hole that is Thomas the Tank Engine, I'm betting your kid actually played make believe with the toys. He didn't just line them up. Now right here, someone is saying "Oh my kid did that too." but I'm pretty sure they did that PLUS other things with them. Not just this and eventually they moved on. Maybe they still have a fond affection for trains and always will but trust me, my kiddo never truly abandons an obsession. I'm betting your kid got into something else.
"Your kiddo is rowdy with your dog. Oh my kid does that too." Now I'm betting you will tell me about that one time your kiddo got nipped by the dog and never did it again. That it taught them a lesson. Yep, my kiddo has been nipped. Multiple times. It never teaches him "the lesson". So please excuse me while I watch him like a hawk around your pet because despite it happening countless times, he's never stopped getting in an animal's face. It's not rough housing. It's not be a rowdy boy on his part. It's not "rough and tumble" play as my child psychology professor used to like to call it. It's an accident waiting to happen. I'm betting your kiddo didn't get nipped and immediately start scripting from Yo Gabba Gabba "We don't ever bite our friends."
"Your kiddo hates school. Oh my kid does that too." As much as my son craves and relies on the schedule of his school day, he also has a wonderful way to get my heart beating in the morning. I will have to prompt him no less than 8,304 times to finish his breakfast. I will wrestle this nine year old boy into his jacket every morning. Even though he has been going to school since the day after his third birthday, I will have to remind him to get his backpack every single morning. While your kid might be excited if the bus is late or wakes up to a sudden snow day, mine will likely melt down for an hour over it. Don't even get me started on handwriting homework. It has driven me to drink. Fourth grade math might baffle your kid but my son still is challenged by having to sign his name.
Now here's where I will flip this sentence. If I say "Oh my kid does that too." to someone, I can you bet you dollars to donuts that they might blink in shock. Especially if their kid isn't on the spectrum. I've seen other moms actually look terrified when I have said it. Like their kid is going to catch the kiddo's autism. Best get them out of there right away. While you can relate to some of the things I said, guess what? I can do the same to what you say. Complicated isn't it? It isn't all autism all the time here. There are some parts of him that are just like your kids.
I guess what's always kind of stuck in my craw about that damn sentence is that it can make me feel like my concerns or worries aren't valid. I know I heard this sentence a lot when we were just starting the autism diagnosis process. Friends and families were trying to calm our fears. Little tip, it doesn't really. It just sticks out more in your mind, the differences in our kids. It just made me feel like the idea of autism was so awful that no one even wanted to discuss it. That made me so sad. It made me convinced he'd never be accepted by anyone. Even possibly myself. How can you come to terms with autism if you won't even acknowledge it? Just doesn't work.
Well I will agree with you on one thing. The fries, all kids do love the fries too. :-)
"Your kiddo is obsessed with trains. Oh my kid does that too." Well that's great and all but my kiddo is nine. I'm betting your kiddo if they are the same age, is well past that point of all things Island of Sodor. I'm betting you don't plan vacations on around train museums to visit or have to make up social stories about when the train ride is finished we say thank you and we do not cry. Plus when this was said to me during our first trip down the rabbit hole that is Thomas the Tank Engine, I'm betting your kid actually played make believe with the toys. He didn't just line them up. Now right here, someone is saying "Oh my kid did that too." but I'm pretty sure they did that PLUS other things with them. Not just this and eventually they moved on. Maybe they still have a fond affection for trains and always will but trust me, my kiddo never truly abandons an obsession. I'm betting your kid got into something else.
"Your kiddo is rowdy with your dog. Oh my kid does that too." Now I'm betting you will tell me about that one time your kiddo got nipped by the dog and never did it again. That it taught them a lesson. Yep, my kiddo has been nipped. Multiple times. It never teaches him "the lesson". So please excuse me while I watch him like a hawk around your pet because despite it happening countless times, he's never stopped getting in an animal's face. It's not rough housing. It's not be a rowdy boy on his part. It's not "rough and tumble" play as my child psychology professor used to like to call it. It's an accident waiting to happen. I'm betting your kiddo didn't get nipped and immediately start scripting from Yo Gabba Gabba "We don't ever bite our friends."
"Your kiddo hates school. Oh my kid does that too." As much as my son craves and relies on the schedule of his school day, he also has a wonderful way to get my heart beating in the morning. I will have to prompt him no less than 8,304 times to finish his breakfast. I will wrestle this nine year old boy into his jacket every morning. Even though he has been going to school since the day after his third birthday, I will have to remind him to get his backpack every single morning. While your kid might be excited if the bus is late or wakes up to a sudden snow day, mine will likely melt down for an hour over it. Don't even get me started on handwriting homework. It has driven me to drink. Fourth grade math might baffle your kid but my son still is challenged by having to sign his name.
Now here's where I will flip this sentence. If I say "Oh my kid does that too." to someone, I can you bet you dollars to donuts that they might blink in shock. Especially if their kid isn't on the spectrum. I've seen other moms actually look terrified when I have said it. Like their kid is going to catch the kiddo's autism. Best get them out of there right away. While you can relate to some of the things I said, guess what? I can do the same to what you say. Complicated isn't it? It isn't all autism all the time here. There are some parts of him that are just like your kids.
I guess what's always kind of stuck in my craw about that damn sentence is that it can make me feel like my concerns or worries aren't valid. I know I heard this sentence a lot when we were just starting the autism diagnosis process. Friends and families were trying to calm our fears. Little tip, it doesn't really. It just sticks out more in your mind, the differences in our kids. It just made me feel like the idea of autism was so awful that no one even wanted to discuss it. That made me so sad. It made me convinced he'd never be accepted by anyone. Even possibly myself. How can you come to terms with autism if you won't even acknowledge it? Just doesn't work.
Well I will agree with you on one thing. The fries, all kids do love the fries too. :-)
Wednesday, November 13, 2013
Age Appropriate? Pffffft!
Tis the season for my mother to start holiday shopping. Granny Fry, I am convinced, starts shopping for next year's Christmas on December 26. Sometimes, she is so ahead of the game that she often forgets what it is that she bought until she stumbles upon it when hiding the latest thing she bought for one of her grandkids. Mainly this applies to my niece who is very easy to spend money on because she loves girly girl stuff. If glitter and sequins cover it, buy it. My older nephew is the video game king and there is always a latest game to get around that time. It's the kiddo that is the challenge to her. Well, frankly to me too. What else is new?
She's been asking. (Yes Mom, as you read this, I do have a list, I swear. I will email it to you.) I've discussed this here before. Shopping for gifts for him is tough. Just freaking hard. I don't know what he'll want half the damn time and I gave birth to him. Now I have all these well meaning relatives that want to buy him presents too? Good lord, you all are driving me to drink. (P.S. Buy Mama Fry more boxed wine. Easy to wrap!) As much as I want to say "Please he doesn't need anything." or "Gift cards/cash", I know it will be countered with "But he has to open something!!!!"
So I'm thumbing through the latest catalog from Fun and Function. (Go google them. They do have some cool stuff for spectrumy quirky kids. They didn't pay me to say this. I just honestly like them.) I'm making my list and I'm reading all the online reviews, trying to figure out what he'll actually like. I started to dismiss something as not "age appropriate" for him. Not that he wasn't old enough for it. Quite the opposite. I'm constantly catching myself doing this. Deciding not to get something. Or getting wrapped up in this idea that something is too young for him. Babyish, if you will. You know what? I'm a big old hypocrite for even thinking that.
As I thought "Oh he's too old for this.", not an hour earlier I had texted a friend of mine a link to a cartoon ad we both liked. I did this next to the Star Trek Enterprise toy that belongs to my husband, not our son. I enjoy watching The Polar Express with my son all the freaking time. Going to new Pixar movies excite me more than him. My husband builds forts and hangs out there with our kiddo. I tend to get annoyed at those bouncy house places that adults aren't allowed on the slide. I want to go on one! On vacation, my husband and I engaged in a battle royale with an air hockey table at an arcade. Kiddo wasn't even playing. He was to busy stuffing his face with popcorn. Acting our age? Not even close. So why am I so wrapped up in this? Why does it matter if a puzzle is considered to be not in the right age bracket for him. Does it make him happy? Will he use it? That's all I really need to worry about here.
Recently, I started to see him rediscover some of the old TV shows and cartoons that I guess you could say are more in line with a five year old than a nine year old. I started to see it's because he can actually follow the plot. It's not just noise on in the background anymore. So big deal if he wants to watch them. Even the really trippy ones, like Yo Gabba Gabba. (I'm still not sure what FooFa is and I'm not sure I want to know.) My husband is still searching for a copy of "Mr. Magoo's Christmas Carol". If I ever find it, I'm buying it for him. Why should I care if the kiddo wants to watch the Weird Al Yankovic "Circus" episode daily? (I think we can all agree that it was a superior episode of Yo Gabba Gabba. Minus that whole making Broobie a clown because clowns are creepy.)
New this holiday season, the kiddo has started a list! He's never done that before. I'm kind of stoked about that. One item, well I guess they are what a lot of nine year old kids would want. A skateboard and all I can think is "Oh he's way to little for that. Nope. No way. Too small. He'll hurt himself! Not my teeny tiny baby who weighs 74 pounds!" Man I like moving that whole age appropriate argument around to suit me when I need it. I wonder if I can get one with the Plex the Magic Robot on it? Cause why not balance it all out? We do as neurotypicals aka "Muggles". And here I am referencing Harry Potter, a book series for kids. See my point? :-)
She's been asking. (Yes Mom, as you read this, I do have a list, I swear. I will email it to you.) I've discussed this here before. Shopping for gifts for him is tough. Just freaking hard. I don't know what he'll want half the damn time and I gave birth to him. Now I have all these well meaning relatives that want to buy him presents too? Good lord, you all are driving me to drink. (P.S. Buy Mama Fry more boxed wine. Easy to wrap!) As much as I want to say "Please he doesn't need anything." or "Gift cards/cash", I know it will be countered with "But he has to open something!!!!"
So I'm thumbing through the latest catalog from Fun and Function. (Go google them. They do have some cool stuff for spectrumy quirky kids. They didn't pay me to say this. I just honestly like them.) I'm making my list and I'm reading all the online reviews, trying to figure out what he'll actually like. I started to dismiss something as not "age appropriate" for him. Not that he wasn't old enough for it. Quite the opposite. I'm constantly catching myself doing this. Deciding not to get something. Or getting wrapped up in this idea that something is too young for him. Babyish, if you will. You know what? I'm a big old hypocrite for even thinking that.
As I thought "Oh he's too old for this.", not an hour earlier I had texted a friend of mine a link to a cartoon ad we both liked. I did this next to the Star Trek Enterprise toy that belongs to my husband, not our son. I enjoy watching The Polar Express with my son all the freaking time. Going to new Pixar movies excite me more than him. My husband builds forts and hangs out there with our kiddo. I tend to get annoyed at those bouncy house places that adults aren't allowed on the slide. I want to go on one! On vacation, my husband and I engaged in a battle royale with an air hockey table at an arcade. Kiddo wasn't even playing. He was to busy stuffing his face with popcorn. Acting our age? Not even close. So why am I so wrapped up in this? Why does it matter if a puzzle is considered to be not in the right age bracket for him. Does it make him happy? Will he use it? That's all I really need to worry about here.
Recently, I started to see him rediscover some of the old TV shows and cartoons that I guess you could say are more in line with a five year old than a nine year old. I started to see it's because he can actually follow the plot. It's not just noise on in the background anymore. So big deal if he wants to watch them. Even the really trippy ones, like Yo Gabba Gabba. (I'm still not sure what FooFa is and I'm not sure I want to know.) My husband is still searching for a copy of "Mr. Magoo's Christmas Carol". If I ever find it, I'm buying it for him. Why should I care if the kiddo wants to watch the Weird Al Yankovic "Circus" episode daily? (I think we can all agree that it was a superior episode of Yo Gabba Gabba. Minus that whole making Broobie a clown because clowns are creepy.)
New this holiday season, the kiddo has started a list! He's never done that before. I'm kind of stoked about that. One item, well I guess they are what a lot of nine year old kids would want. A skateboard and all I can think is "Oh he's way to little for that. Nope. No way. Too small. He'll hurt himself! Not my teeny tiny baby who weighs 74 pounds!" Man I like moving that whole age appropriate argument around to suit me when I need it. I wonder if I can get one with the Plex the Magic Robot on it? Cause why not balance it all out? We do as neurotypicals aka "Muggles". And here I am referencing Harry Potter, a book series for kids. See my point? :-)
Wednesday, November 6, 2013
"Exact Words Greg!"
Life with the kiddo isn't exactly an episode of The Brady Bunch. I'm not rocking a perfect flip in my hair. I thank the good Lord each day that there not six of the kiddo running around an astro turf back yard. My husband has yet to take me on a business trip with him to Hawaii and one look around my house will show you pretty quickly that there is no Alice, the maid. This morning though, I was pretty sure my son had turned into a Brady. Let me explain.
Yesterday the kiddo came home from school and does his usual routine of emptying out his backpack and handing all items over to me. Included in this exchange was part of a PTA fund raising order that had come in. It's pretty clear to me that this is not my entire order and it's kind of odd to only get part of it without some sort of note or email blast going out explaining what's up. The kiddo's PTA is pretty good that way. So I jot off an email to our Madame President with a "where's my stuff?" whine. She then forwards it to another mom with her own "where's her stuff?" to boot. I add another email to both ladies with a "Dudes, I ordered A LOT of stuff. Christmas presents! Come on!!" Yeah, I'll fess up. I started my shopping way early this year and actually felt like I had my shit together. To find out that about 8 items were MIA sent me into a tizz.
Cut to the scene this morning and the school bus rolling on up. The kiddo starts to hop on but the aide inside stops him. She comes down the steps with a bag that appears to be the rest of my order. Apparently, he left it on the bus. I thanked her and the driver but did look at the kiddo and said "Buddy? What the heck? You're suppose to give this to me. You know that."
Kiddo points at it and says; "Not in the backpack." and it dawns on me. Why did I get the first part of that order? Cause it fit in his backpack. Why did this not come home? Because it was NOT in his backpack. Ergo, not his responsibility to move heaven and earth to give it to me. He and his literal thinking, his autism way, had found his loophole. How could I possibly complain as he did indeed hand over to me the contents of what is in his backpack? He did his job. With that he high fived the bus driver and went off to school, having owned his mother once again by 8:40AM.
"Exact words Greg!" All I could think of was this old episode. How Greg thought he had completely outsmarted his parents. This autism way is exact words all the freaking time. To the point of where sometimes it saves me but most of the time, it saves him. When things are clearly stated, everybody is happier for it. There was a part of me that just wants to have my "Marcia, Marcia, Marcia" moment and just rage against the Brady Status Quo but it is what it is. So tonight I will sit down again with the boy and explain that ALL things handed over at school need to come home, regardless of if they are in his backpack or have to be carried in another bag. I'm sure there will also be a long debate over the color, size and shape of said additional bag. That no, I will not always be able to predict on which days such things shall occur.
Pardon me Madame President as I may never order anything again. Will this be an issue? Were you trying to get Davy Jones to sing at the prom? Oh wait, he passed away. Never mind.
Oh autism, exact words to be etched in stone but that stone better be in the backpack.
Yesterday the kiddo came home from school and does his usual routine of emptying out his backpack and handing all items over to me. Included in this exchange was part of a PTA fund raising order that had come in. It's pretty clear to me that this is not my entire order and it's kind of odd to only get part of it without some sort of note or email blast going out explaining what's up. The kiddo's PTA is pretty good that way. So I jot off an email to our Madame President with a "where's my stuff?" whine. She then forwards it to another mom with her own "where's her stuff?" to boot. I add another email to both ladies with a "Dudes, I ordered A LOT of stuff. Christmas presents! Come on!!" Yeah, I'll fess up. I started my shopping way early this year and actually felt like I had my shit together. To find out that about 8 items were MIA sent me into a tizz.
Cut to the scene this morning and the school bus rolling on up. The kiddo starts to hop on but the aide inside stops him. She comes down the steps with a bag that appears to be the rest of my order. Apparently, he left it on the bus. I thanked her and the driver but did look at the kiddo and said "Buddy? What the heck? You're suppose to give this to me. You know that."
Kiddo points at it and says; "Not in the backpack." and it dawns on me. Why did I get the first part of that order? Cause it fit in his backpack. Why did this not come home? Because it was NOT in his backpack. Ergo, not his responsibility to move heaven and earth to give it to me. He and his literal thinking, his autism way, had found his loophole. How could I possibly complain as he did indeed hand over to me the contents of what is in his backpack? He did his job. With that he high fived the bus driver and went off to school, having owned his mother once again by 8:40AM.
"Exact words Greg!" All I could think of was this old episode. How Greg thought he had completely outsmarted his parents. This autism way is exact words all the freaking time. To the point of where sometimes it saves me but most of the time, it saves him. When things are clearly stated, everybody is happier for it. There was a part of me that just wants to have my "Marcia, Marcia, Marcia" moment and just rage against the Brady Status Quo but it is what it is. So tonight I will sit down again with the boy and explain that ALL things handed over at school need to come home, regardless of if they are in his backpack or have to be carried in another bag. I'm sure there will also be a long debate over the color, size and shape of said additional bag. That no, I will not always be able to predict on which days such things shall occur.
Pardon me Madame President as I may never order anything again. Will this be an issue? Were you trying to get Davy Jones to sing at the prom? Oh wait, he passed away. Never mind.
Oh autism, exact words to be etched in stone but that stone better be in the backpack.
Wednesday, October 30, 2013
The wind
Autism in this is house is like the weather. It can be so unpredictable. It can be so glorious while at the same time life changing and yes, even damaging. This morning's event was like a wind gust. It came out of no where and knocked me on my bum. In a good way. (Don't worry about me. My bum is wide. It's pretty cushy.)
Waiting for bus at the door like always, with the dog posse in tow. Kiddo sitting with the iPad, cracking himself up making the "Talking Ben" dog app burp no less than 39 times in a span of a minute. I'm puttering around on my phone reading the blogs I follow, reading them like my newspaper. A pretty typical scene. We both know our roles in this play.
The bus starts rumbling down the street and my small dog starts barking her head off as she does every single time when she sees it. Kiddo closes the iPad and puts on his backpack. We walk outside and then he goes off script. Completely.
Kiddo: "I love you!"
He is nine years old and he has never ever said it first. I often wonder does he really knows what it means or is he just repeating it because he has learned this is some sort of acceptable social convention that moms like to hear. I still take them as counting because I know I am lucky to hear it. Not all parents get that. Today was the first time though that he has ever said it before I did. He's never spontaneously said it on his own. Ever. I almost fainted dead in my driveway. Which would of been really embarrassing to have the bus to pull up and find me just laying face down on the blacktop. They probably would of thought I was drunk. They've seen my recycling bin full of wine bottles.
I whispered back "I love you. Have such an awesome day Kiddo!"
This moment is the wind. I almost want to bottle this moment up for when I need some wind in my sails. I need memories like this because I know there will be storms coming that will wreck me. I need to remember what this felt like because like so many things in this life, I don't know if it will ever happen again. No one can predict which way the wind will blow. I also want to share this with you who might read it. Maybe you need to know that this kind of weather can happen. Maybe it has already and you need to remember what it felt like. When it lifted you up. Maybe this hasn't happened yet and of course I can't predict that it will. Just know when you least expect it, that breeze will come by. Just when you need it.
Waiting for bus at the door like always, with the dog posse in tow. Kiddo sitting with the iPad, cracking himself up making the "Talking Ben" dog app burp no less than 39 times in a span of a minute. I'm puttering around on my phone reading the blogs I follow, reading them like my newspaper. A pretty typical scene. We both know our roles in this play.
The bus starts rumbling down the street and my small dog starts barking her head off as she does every single time when she sees it. Kiddo closes the iPad and puts on his backpack. We walk outside and then he goes off script. Completely.
Kiddo: "I love you!"
He is nine years old and he has never ever said it first. I often wonder does he really knows what it means or is he just repeating it because he has learned this is some sort of acceptable social convention that moms like to hear. I still take them as counting because I know I am lucky to hear it. Not all parents get that. Today was the first time though that he has ever said it before I did. He's never spontaneously said it on his own. Ever. I almost fainted dead in my driveway. Which would of been really embarrassing to have the bus to pull up and find me just laying face down on the blacktop. They probably would of thought I was drunk. They've seen my recycling bin full of wine bottles.
I whispered back "I love you. Have such an awesome day Kiddo!"
This moment is the wind. I almost want to bottle this moment up for when I need some wind in my sails. I need memories like this because I know there will be storms coming that will wreck me. I need to remember what this felt like because like so many things in this life, I don't know if it will ever happen again. No one can predict which way the wind will blow. I also want to share this with you who might read it. Maybe you need to know that this kind of weather can happen. Maybe it has already and you need to remember what it felt like. When it lifted you up. Maybe this hasn't happened yet and of course I can't predict that it will. Just know when you least expect it, that breeze will come by. Just when you need it.
Monday, October 28, 2013
Letting go of the dream.
Ever read that inspirational letter to special needs parents called "WELCOME TO HOLLAND" by Emily Perl Kingsley? If you haven't, you might want to go Google that. It's kind of required reading for our lot. Go on. I'll wait. Then come back to this blog. :-)
Hey, the message is nice. I get what it's about. I appreciate our Little Holland in New Jersey all the freaking time. I've said it before in my blog. Autism is a trip I didn't plan on but I sure do love my tour guide. Acceptance of my travel destination came in stages. I'd be lying if I said I was there completely. I'm not. Some days I am completely submerged in our Autismland and down with the natives. Other days, I am wandering around like a tourist in culture shock so busy studying my map and travel guide that I completely forget to stop and actually enjoy the scenery around me. I've accepted the fact that I'll probably be like this for the rest of my life. I'm hoping the kiddo learns to deal with this neurotypical quirk of mine as part of me. Believe it or not, he's displayed more patience in dealing with me dealing with the fact that I've had to let go of the dreams. Not only letting them go but finding some new ones at the same time. I'm sure mine aren't all the same ones you had or wanted but I know a few off the top of my head that I bet some of you need to hear.
Potty training. It's not gonna happen like every other kid you know at that age. Let go of that dream. Your other kid did it at 3? Super. So and so kid's did it at 2 when they saw their older sibling did it? Great. It's just not going to be your kid. It might take years for all the steps to be mastered. You may even get the fun of having them suddenly forget them and having to teach them all over again. It is what it is. Don't beat yourself over it. Also, realize this might require a team effort. Talk to school. Get it in the IEP. Make "going" the same across the board. Trust me.
Holidays. Your kid may not ever like them for a variety of reasons. To many people, to much fuss, to much different, to much upset of routine. Gatherings that used to be casual will now be work. So much work. In fact, some years, you might even fake an illness to get out of a family gathering just to cut yourself a break. (Not that we've ever done that family. Nope I swear!) The kiddo is nine. He finally got into holidays last year. You know all those magical first years where I was suppose to be making this perfect Christmas morning scene for him. Yeah, I had to let go of that dream. There was no rushing down the stairs at 3am to see if Santa had been here yet. He was pretty indifferent to it other than the lights outside and on the tree. Last year was the first time we even attempted to go see Santa in years. There are no annual shots of him on his lap for our holiday card. I let go of that dream years ago.
After school events and sports. When the kiddo was five, I signed him for special needs soccer. I live in an area where soccer is THE sport. I was excited by the idea of sitting on a sidelines with other moms and my coffee and watching our little runs play. I even thought the idea that it was made for special needs kids would help. I thought I was ahead of the game on that one. You know what? It still sucked! Majorly. He could of cared less. He ran all over. He refused to listen to the coaches. So even though I thought I had found something that could accommodate him, it still didn't work! I had to let go of that dream too. Cookie cutter accommodations don't work. I just can't throw my custom made boy into a ready made event and expect couture looks. Not going to happen.
It's not about me. It's not about you. I know letting go of the dreams and trying to find new ones that you both like is hard. I'm not saying it's been a side of fries. I just know that the more I check my ego at the door, the better he usually is for it. Sometimes I think I must of known this trip to Holland was coming. I've always liked tulips.
Hey, the message is nice. I get what it's about. I appreciate our Little Holland in New Jersey all the freaking time. I've said it before in my blog. Autism is a trip I didn't plan on but I sure do love my tour guide. Acceptance of my travel destination came in stages. I'd be lying if I said I was there completely. I'm not. Some days I am completely submerged in our Autismland and down with the natives. Other days, I am wandering around like a tourist in culture shock so busy studying my map and travel guide that I completely forget to stop and actually enjoy the scenery around me. I've accepted the fact that I'll probably be like this for the rest of my life. I'm hoping the kiddo learns to deal with this neurotypical quirk of mine as part of me. Believe it or not, he's displayed more patience in dealing with me dealing with the fact that I've had to let go of the dreams. Not only letting them go but finding some new ones at the same time. I'm sure mine aren't all the same ones you had or wanted but I know a few off the top of my head that I bet some of you need to hear.
Potty training. It's not gonna happen like every other kid you know at that age. Let go of that dream. Your other kid did it at 3? Super. So and so kid's did it at 2 when they saw their older sibling did it? Great. It's just not going to be your kid. It might take years for all the steps to be mastered. You may even get the fun of having them suddenly forget them and having to teach them all over again. It is what it is. Don't beat yourself over it. Also, realize this might require a team effort. Talk to school. Get it in the IEP. Make "going" the same across the board. Trust me.
Holidays. Your kid may not ever like them for a variety of reasons. To many people, to much fuss, to much different, to much upset of routine. Gatherings that used to be casual will now be work. So much work. In fact, some years, you might even fake an illness to get out of a family gathering just to cut yourself a break. (Not that we've ever done that family. Nope I swear!) The kiddo is nine. He finally got into holidays last year. You know all those magical first years where I was suppose to be making this perfect Christmas morning scene for him. Yeah, I had to let go of that dream. There was no rushing down the stairs at 3am to see if Santa had been here yet. He was pretty indifferent to it other than the lights outside and on the tree. Last year was the first time we even attempted to go see Santa in years. There are no annual shots of him on his lap for our holiday card. I let go of that dream years ago.
After school events and sports. When the kiddo was five, I signed him for special needs soccer. I live in an area where soccer is THE sport. I was excited by the idea of sitting on a sidelines with other moms and my coffee and watching our little runs play. I even thought the idea that it was made for special needs kids would help. I thought I was ahead of the game on that one. You know what? It still sucked! Majorly. He could of cared less. He ran all over. He refused to listen to the coaches. So even though I thought I had found something that could accommodate him, it still didn't work! I had to let go of that dream too. Cookie cutter accommodations don't work. I just can't throw my custom made boy into a ready made event and expect couture looks. Not going to happen.
It's not about me. It's not about you. I know letting go of the dreams and trying to find new ones that you both like is hard. I'm not saying it's been a side of fries. I just know that the more I check my ego at the door, the better he usually is for it. Sometimes I think I must of known this trip to Holland was coming. I've always liked tulips.
Monday, October 21, 2013
The lollipop.
A lollipop made me cry on Thursday.
I took the kiddo for a hair cut. Most ASD parents right now cringe at the very idea of such run of the mill event. Yeah, hair cuts were dicey for a very, very, oh what the hell let's just let him be a hippie, long time. We found through the autism parent grapevine, a hairstylist who's specialty was "moving targets". She also sports the most warm and laid back personality and doesn't blanch when said client is screaming bloody murder in her face. She was the one that encouraged me to keep coming with him often. That he would get used to it the more we did it. Don't put it off. Don't have the kiddo look like Justin Bieber. (She was really right about that one. Even Justin Bieber doesn't sport that floppy mop top anymore. Plus, he's kind of a tool.)
So between this hair stylist with a heart of gold and the good sense NOT to use the blow dryer to clean off the strays because she knows it scares him, lots of OT work, a couple of social stories and the kiddo's teachers last year who arranged for the principal of the school to have a hair cut in front of them by a barber (I know right? Epic!), the kiddo now takes his buzz cut like a champ. It's become a pretty standard non event for us until last week. When the tiniest moment just seemed to hit me like a ton of weighted blankets. (Autism humor! I slay me!)
He hops off the seat and does a quick lap around the shop to regulate himself. Eventually he meets me up at the register as I pay and generously over tip his stylist. (She's worth every freaking penny and dammit I will keep her happy. Shut up and take my money!) She offers the big jar full of Dum Dum lollipops to the boy. He takes one. I prompt him to say thank you. He does. End scene.
Once we are in the car I text Daddy Fry with a message of that the deed is done. Even though they have been really good lately, well, I guess you could say I have hair cutting PTSD. I'm still a little dumbfounded when they go well and feel the need to report this to someone who can truly marvel at such a thing. By now the kiddo is buckled in his seat and unwrapping his lollipop. I turn around and ask him "What flavor did you get?" but I'm not really expecting an answer because the kiddo doesn't care. He NEVER eats them. It would mean putting it in and out of his mouth or sticking his tongue out to lick it, which never happens. He usually just holds it in his hand like some sort of small trophy and usually drops it on the ride home. I've cleaned up a ton of lollipops never eaten, covered in carpet lint and dog hair on the floor of my car.
He then rocked my world. The kiddo, who's oral motor tactile defensiveness is the stuff of speech pathology legend, put that mutha trucking lollipop in his mouth! I actually gasped out loud, which caused him to yank it back out in fear and confusion. I quickly said "Oh no honey. That's OK. Go right ahead! Give it a kiss. Lick it. It's yummy!" and gently prompted his hand back to his mouth. I saw the tiny tip of tongue come out and lick it. He smiled and I cried. Not just tears in my eyes. We are talking the ugly, snot bubble in your nose cry, right in the parking lot of a kid's hair cutting place. Then he gave me an annoyed sigh and rolled his eyes. Oh my god, he's so age appropriate at this moment! I even took a picture of him eating it and uploaded it on Instagram. I sent a text to his magic speech therapist that gets him to try ALL THE FOODS!! That's how excited I was in that moment. Tiny victories like that get me through the day. He finished it by the time we got home and handed me the stick. I still have it in the cup holder of my car. I look at it like a holy relic. I still can't believe it happened.
You know what this means? That all this stuff we do is working. That all this therapy is paying off. You know what also this means? He might actually eat his Halloween candy this year!!! Trick or treating won't just be an exercise of trying to catch him before he barges into some one's house. He might be excited to get some candy!
Kiddo, I will not touch your lollipop stash but I make no promises that you will have the same number of peanut butter cups when you wake up in the morning of November first as you did the night before. Candy Tax kiddo. We buy your costume. We pay your bills. You can spot Mama some chocolate.
Maybe it's ridiculous to get emotionally wrecked by my kiddo eating a lollipop but to me it represents just how far we have come. I'm going to enjoy our tiny victory and now try to figure out a way to explain to the kiddo to never take the "Mystery Flavor" Dum Dum. Cause I'm not sure what the Hell flavor that is.
I took the kiddo for a hair cut. Most ASD parents right now cringe at the very idea of such run of the mill event. Yeah, hair cuts were dicey for a very, very, oh what the hell let's just let him be a hippie, long time. We found through the autism parent grapevine, a hairstylist who's specialty was "moving targets". She also sports the most warm and laid back personality and doesn't blanch when said client is screaming bloody murder in her face. She was the one that encouraged me to keep coming with him often. That he would get used to it the more we did it. Don't put it off. Don't have the kiddo look like Justin Bieber. (She was really right about that one. Even Justin Bieber doesn't sport that floppy mop top anymore. Plus, he's kind of a tool.)
So between this hair stylist with a heart of gold and the good sense NOT to use the blow dryer to clean off the strays because she knows it scares him, lots of OT work, a couple of social stories and the kiddo's teachers last year who arranged for the principal of the school to have a hair cut in front of them by a barber (I know right? Epic!), the kiddo now takes his buzz cut like a champ. It's become a pretty standard non event for us until last week. When the tiniest moment just seemed to hit me like a ton of weighted blankets. (Autism humor! I slay me!)
He hops off the seat and does a quick lap around the shop to regulate himself. Eventually he meets me up at the register as I pay and generously over tip his stylist. (She's worth every freaking penny and dammit I will keep her happy. Shut up and take my money!) She offers the big jar full of Dum Dum lollipops to the boy. He takes one. I prompt him to say thank you. He does. End scene.
Once we are in the car I text Daddy Fry with a message of that the deed is done. Even though they have been really good lately, well, I guess you could say I have hair cutting PTSD. I'm still a little dumbfounded when they go well and feel the need to report this to someone who can truly marvel at such a thing. By now the kiddo is buckled in his seat and unwrapping his lollipop. I turn around and ask him "What flavor did you get?" but I'm not really expecting an answer because the kiddo doesn't care. He NEVER eats them. It would mean putting it in and out of his mouth or sticking his tongue out to lick it, which never happens. He usually just holds it in his hand like some sort of small trophy and usually drops it on the ride home. I've cleaned up a ton of lollipops never eaten, covered in carpet lint and dog hair on the floor of my car.
He then rocked my world. The kiddo, who's oral motor tactile defensiveness is the stuff of speech pathology legend, put that mutha trucking lollipop in his mouth! I actually gasped out loud, which caused him to yank it back out in fear and confusion. I quickly said "Oh no honey. That's OK. Go right ahead! Give it a kiss. Lick it. It's yummy!" and gently prompted his hand back to his mouth. I saw the tiny tip of tongue come out and lick it. He smiled and I cried. Not just tears in my eyes. We are talking the ugly, snot bubble in your nose cry, right in the parking lot of a kid's hair cutting place. Then he gave me an annoyed sigh and rolled his eyes. Oh my god, he's so age appropriate at this moment! I even took a picture of him eating it and uploaded it on Instagram. I sent a text to his magic speech therapist that gets him to try ALL THE FOODS!! That's how excited I was in that moment. Tiny victories like that get me through the day. He finished it by the time we got home and handed me the stick. I still have it in the cup holder of my car. I look at it like a holy relic. I still can't believe it happened.
You know what this means? That all this stuff we do is working. That all this therapy is paying off. You know what also this means? He might actually eat his Halloween candy this year!!! Trick or treating won't just be an exercise of trying to catch him before he barges into some one's house. He might be excited to get some candy!
Kiddo, I will not touch your lollipop stash but I make no promises that you will have the same number of peanut butter cups when you wake up in the morning of November first as you did the night before. Candy Tax kiddo. We buy your costume. We pay your bills. You can spot Mama some chocolate.
Maybe it's ridiculous to get emotionally wrecked by my kiddo eating a lollipop but to me it represents just how far we have come. I'm going to enjoy our tiny victory and now try to figure out a way to explain to the kiddo to never take the "Mystery Flavor" Dum Dum. Cause I'm not sure what the Hell flavor that is.
Monday, October 14, 2013
Autism at the movies.
"Let's all go to the lobby. Let's all go to the lobby. Let's all go to the lobby and get ourselves an overpriced snack!"(Seriously, 12 bucks for water and a popcorn? That's insane!)
One of the kiddo's favorite past times is to convince me to take him to movies. He especially loves to charm me into seeing the same one more than once. Sometimes I'm pretty convinced my dollars are paying for some Pixar employee's kid to go to college. I've mentioned this before on here and on my Facebook page and everyone is very quick to ask about if we go to the Sensory Friendly showings that the AMC theater chain is offering. Here's the thing, we don't. I know you're shocked that I'm taking advantage of that but it's not honestly something we need. Plus when we started going to flicks, it wasn't even available in our area. So Mama had to make due. I've got nothing against the concept but rarely do the times it's offered ever work for us. Not to mention it's usually only done ONCE for each movie. You miss it, you're out of luck. So if you are wondering how I have done it, here's the breakdown of what we do.
1) Timing, timing and timing. Critical timing is key. (aka Give them their medication BEFORE you leave the house.) Kiddo is always calmer, chill, zen like in the mornings. We always go to a first run of the morning. I've learned my lesson. After noon, and it's like he turns into a Gremlin in a theater. When is your kid at their best? Go then. Also, go Sunday morning or mid week. Nobody goes then excepts maybe us. That's cool though. Come sit by me. Realize there's a good chance I might be snoozing. If my snoring is getting to loud, poke me. Blame your kid that they did it. And for the love of your sanity, don't go that first weekend it's out. You know it will be madness.
2) Prep work. Order tickets online. This saves you the hassle of waiting on a line there to get them Plus you know you got your seats. My local theater now even let's you choose your actual seats too. How awesome is that? So I get to pick my preferred location which is on the end by the door. You never know when you might have to make a potty run or a complete retreat. Best to make it easy on yourself. If you go to AMC theaters, get their "Stubs' card. It waives online ordering fees AND let's you upgrade your size on drinks and popcorn for medium prices. Eventually you get enough points and you get reward bucks for more free movies!!! If you ever rolled your eyes when they have offered it to you, get it. Trust me. Apply online. I walk right up to a computer kiosk that never has a line, wave my card, POOF! Tickets printed.
3) Now you either take out a small loan and get snacks on the concession stand or you can rock the big mom purse. Let's face it. We all know we're not suppose to sneak stuff in. They know it too but we do. I've walked in with my Mama Sherpa bag and they have never said a thing to me. I usually bring some cookies and some juice boxes because I need to pay my mortgage next month. If you're a dad reading this, wearing cargo pants. That's why the good lord invented pockets dude.
4) Hit the bathroom before you go in. Expect to make a potty run sometime in the middle of the show and you'll probably go once more when you leave. If you're a mom of a son, take him in with you. Yes, the ladies rooms I find are pretty full of moms and kids, both sexes. We all get it. Who wants to send a 8 year old into a men's room alone? If anyone says a word to you about that, explain why. I bet ya that will shut their flapping gums. Hey theaters of the world, maybe it's time to make a family bathroom ya dig?
5) Yes, the sound is loud and the advantage of the sensory friendly is it's usually lower volume. Got noise canceling headphones? Bring them with ya! You're already sporting the Mary Poppins's handbag. What's one more thing? Also a fidget or two doesn't hurt. Also, skip the 3D viewings. If your kid is like mine, they don't really see 3D anyway because of visual processing issues. Plus the glasses are annoying. Frankly 3D is a gimmick on most movies that stink to begin with. You don't need to give them another three bucks. That's all that three stands for.
6) Now of course you can prep your kids to the moon and back about being quiet and considerate of fellow movie goers but they are kids. Noise happens. Here's the thing, I do find there's a smidgen more understanding/patience at kid movie showings. They get excited. They suddenly remember that they need to pee. They drop stuff and then cry. It happens. My point is, your kid will not be the only one making noise. Now if you have the type of kid that wants to scream the entire viewing, clearly abort the mission and get out of there. But if junior squeals with delight every time there is a well timed fart joke, let it pass. Your kid or any other there. You're not watching a production of King Lear. It's Smurfs 2 or Alvin and The Chipmunks or some junk like that. Let it roll. The noise will pass in seconds. Of course redirect if it gets out of hand but don't think it's the end of the world either. Chill fool. You got this.
7) Hold something over their heads for motivation. Good behavior in the movies means a run to a drive thru where if the timing is right, one can get a Happy Meal with a crappy piece of plastic junk toy that's a character from that flick. Extra bonus fun!!!
8) Expect to be bored. You're not really there for you. You're there for them. Expect Pixar movies cause they're well Pixar. Hello Toy Story 3!?!? If you didn't sob at the end of that movie you have no soul. None!
9) If you happen to be one of those adults without kids who still likes to go to these movies because you are a big kid at heart or whatnot, do me a favor and go later. Do yourself the favor of not being bothered by kid noise at a late night showing. Don't come to my 9:45AM showing and be all huffy under your breath at my son squeals. This is the mom zone time. Suck it up sunshine. I'm not going to be a hermit and never take my kid out. I will be on him like white on rice but don't get in a snit because we are there.
10) While I dig this whole sensory friendly thing for movies cause folks, I sure won't care if your kid is flapping as mine would be too, here's my issue with it. I don't see them offering any sensory friendly viewings for older kids. Like the tween, sparkly vampires, superheros set. So I guess one of the reasons I don't go to them is that I want the kiddo to get use to going to any show. If this blog is read by any higher up in a movie chain, how about more sensory friendly flicks for older kids? And french fries! You offer chicken tenders and mozzarella sticks. How about fries dude??? Come on!
Thus concludes my list on how we do the movies. The kiddo has been going for five years now. Every kid movie, we go. I've only had to take him out twice. That's pretty good odds when you think about it. :-) So try it. You might be able to do it. Also, you didn't hear it from me BUT if you do have to leave early, sometimes managers will see you struggling and give you comps to come back another time and try again. But don't tell them I told you that. Shhhhh. Our secret.
One of the kiddo's favorite past times is to convince me to take him to movies. He especially loves to charm me into seeing the same one more than once. Sometimes I'm pretty convinced my dollars are paying for some Pixar employee's kid to go to college. I've mentioned this before on here and on my Facebook page and everyone is very quick to ask about if we go to the Sensory Friendly showings that the AMC theater chain is offering. Here's the thing, we don't. I know you're shocked that I'm taking advantage of that but it's not honestly something we need. Plus when we started going to flicks, it wasn't even available in our area. So Mama had to make due. I've got nothing against the concept but rarely do the times it's offered ever work for us. Not to mention it's usually only done ONCE for each movie. You miss it, you're out of luck. So if you are wondering how I have done it, here's the breakdown of what we do.
1) Timing, timing and timing. Critical timing is key. (aka Give them their medication BEFORE you leave the house.) Kiddo is always calmer, chill, zen like in the mornings. We always go to a first run of the morning. I've learned my lesson. After noon, and it's like he turns into a Gremlin in a theater. When is your kid at their best? Go then. Also, go Sunday morning or mid week. Nobody goes then excepts maybe us. That's cool though. Come sit by me. Realize there's a good chance I might be snoozing. If my snoring is getting to loud, poke me. Blame your kid that they did it. And for the love of your sanity, don't go that first weekend it's out. You know it will be madness.
2) Prep work. Order tickets online. This saves you the hassle of waiting on a line there to get them Plus you know you got your seats. My local theater now even let's you choose your actual seats too. How awesome is that? So I get to pick my preferred location which is on the end by the door. You never know when you might have to make a potty run or a complete retreat. Best to make it easy on yourself. If you go to AMC theaters, get their "Stubs' card. It waives online ordering fees AND let's you upgrade your size on drinks and popcorn for medium prices. Eventually you get enough points and you get reward bucks for more free movies!!! If you ever rolled your eyes when they have offered it to you, get it. Trust me. Apply online. I walk right up to a computer kiosk that never has a line, wave my card, POOF! Tickets printed.
3) Now you either take out a small loan and get snacks on the concession stand or you can rock the big mom purse. Let's face it. We all know we're not suppose to sneak stuff in. They know it too but we do. I've walked in with my Mama Sherpa bag and they have never said a thing to me. I usually bring some cookies and some juice boxes because I need to pay my mortgage next month. If you're a dad reading this, wearing cargo pants. That's why the good lord invented pockets dude.
4) Hit the bathroom before you go in. Expect to make a potty run sometime in the middle of the show and you'll probably go once more when you leave. If you're a mom of a son, take him in with you. Yes, the ladies rooms I find are pretty full of moms and kids, both sexes. We all get it. Who wants to send a 8 year old into a men's room alone? If anyone says a word to you about that, explain why. I bet ya that will shut their flapping gums. Hey theaters of the world, maybe it's time to make a family bathroom ya dig?
5) Yes, the sound is loud and the advantage of the sensory friendly is it's usually lower volume. Got noise canceling headphones? Bring them with ya! You're already sporting the Mary Poppins's handbag. What's one more thing? Also a fidget or two doesn't hurt. Also, skip the 3D viewings. If your kid is like mine, they don't really see 3D anyway because of visual processing issues. Plus the glasses are annoying. Frankly 3D is a gimmick on most movies that stink to begin with. You don't need to give them another three bucks. That's all that three stands for.
6) Now of course you can prep your kids to the moon and back about being quiet and considerate of fellow movie goers but they are kids. Noise happens. Here's the thing, I do find there's a smidgen more understanding/patience at kid movie showings. They get excited. They suddenly remember that they need to pee. They drop stuff and then cry. It happens. My point is, your kid will not be the only one making noise. Now if you have the type of kid that wants to scream the entire viewing, clearly abort the mission and get out of there. But if junior squeals with delight every time there is a well timed fart joke, let it pass. Your kid or any other there. You're not watching a production of King Lear. It's Smurfs 2 or Alvin and The Chipmunks or some junk like that. Let it roll. The noise will pass in seconds. Of course redirect if it gets out of hand but don't think it's the end of the world either. Chill fool. You got this.
7) Hold something over their heads for motivation. Good behavior in the movies means a run to a drive thru where if the timing is right, one can get a Happy Meal with a crappy piece of plastic junk toy that's a character from that flick. Extra bonus fun!!!
8) Expect to be bored. You're not really there for you. You're there for them. Expect Pixar movies cause they're well Pixar. Hello Toy Story 3!?!? If you didn't sob at the end of that movie you have no soul. None!
9) If you happen to be one of those adults without kids who still likes to go to these movies because you are a big kid at heart or whatnot, do me a favor and go later. Do yourself the favor of not being bothered by kid noise at a late night showing. Don't come to my 9:45AM showing and be all huffy under your breath at my son squeals. This is the mom zone time. Suck it up sunshine. I'm not going to be a hermit and never take my kid out. I will be on him like white on rice but don't get in a snit because we are there.
10) While I dig this whole sensory friendly thing for movies cause folks, I sure won't care if your kid is flapping as mine would be too, here's my issue with it. I don't see them offering any sensory friendly viewings for older kids. Like the tween, sparkly vampires, superheros set. So I guess one of the reasons I don't go to them is that I want the kiddo to get use to going to any show. If this blog is read by any higher up in a movie chain, how about more sensory friendly flicks for older kids? And french fries! You offer chicken tenders and mozzarella sticks. How about fries dude??? Come on!
Thus concludes my list on how we do the movies. The kiddo has been going for five years now. Every kid movie, we go. I've only had to take him out twice. That's pretty good odds when you think about it. :-) So try it. You might be able to do it. Also, you didn't hear it from me BUT if you do have to leave early, sometimes managers will see you struggling and give you comps to come back another time and try again. But don't tell them I told you that. Shhhhh. Our secret.
Friday, October 11, 2013
Redirect me please, my own behavior plan.
OK, this is hard. All is not sunshine and fluffy unicorns laughs at French Fry Inc lately. For lack of better words it's not a huge amount suck but a series of little things that suck all grouped together at once that is wearing me down. I'm the first one to say it's better to laugh than cry but I got to get some stuff off my chest because it's late in the day and I want to take my bra off for the night.
1)If you follow me on Facebook, you know Daddy Fry broke his ankle a few weeks ago. While he finally graduated to the walking boot, he is still not 100% back in the game. All the little things I take for granted that he does aren't getting done well or at all. I suspect I am giving him the same look of confusion that he sports when I have been deathly ill and to sick to cook, leaving them to fend for themselves. Aka "Go to Burger King". The lawn isn't getting mowed, I forget what day is trash day and what is recycling. My husband is Captain Vacuum. It's always been his thing. Over the weekend we got the kiddo to do it. It was good sensory OT for him so I consider that a win win. Mainly though, he is my kiddo's preferred playmate of choice. I'm Mommy and I'm a member of Team No Fun. I focus on schedules, baths and bedtimes. Plus the weekends are really when my kiddo can see his father. He works a lot. This has been a tough adjustment and we have weeks of recovery still to go. My husband has been sick quite a bit this year and I have informed him that according to HR at French Fry Inc, he has no more sick days left to take for the remainder of the year. Nor did he fill out any time off request forms.
2) Kiddo has had another day of not so hot behavior at school. Throwing stuff, yelling, general anxiety through the roof. A big thank you for the teacher for contacting me that day by phone to let me know as soon as she could. I appreciate that. It's still a great big mystery of why to me right now. There is no in your face reason to what gives. It has me very worried. We just took OUT his behavior plan at the last IEP in June. He didn't need it. Great behavior for well over a year and a half and now this. The kiddo is only getting bigger, not smaller. I don't want him to be miserable. I don't want him to be sad. I also don't want him to be violent. Towards himself or others. This behavior scares the ever loving crap out of me. I worry about his future. I saw how fast nine years went. In nine more, he will be eighteen. If he acts like this in a public setting, police would be called. I want to figure out what is going on. It makes me worried that the progress we have seen could be slipping away.
3)My older dog Ronan, who has been with the kiddo since he was a baby is not doing well. He has had some health issues recently that make me wonder if we are starting the beginning to the end with him. I am devastated to even think of how the kiddo could handle that.
4) I am currently having to make some medical choices of my own to make coming up that are a little daunting/confusing. Don't worry. I'm not at Death's door but they are not things fixed with a band aid or a pill. Some minor surgery will have to happen but as Daddy Fry is still limping around, I got to put it on hold. Which will make this possibly scheduled right in the middle of the holidays. Although the possible scripts for pain meds would be like a fun gift from Santa, I'd prefer not to have to go through medical stuff in order to get them. Recovery with a kiddo bouncing around is going to be challenging at best. This is the same kiddo that tried to take off my husband's cast on his own when he wouldn't go on a dog walk with him. (Mama does it wrong). Making choices for the kiddo with doctor input seems almost easier than making my own choice in this for what I want to have happen to me.
5) My family still expects to be fed dinner again tonight. I still have no idea what that will be. Alright so maybe in the grand scheme of things, this isn't a huge problem but currently it's weighing on me. All I know is I will be having a glass of wine for dinner with another glass of wine for dessert.
So that's what's up here. I know logically we will get through it as really, do I have any other choice? Nope. There is no sub to call in. It's all on me. I guess you could just consider this a problem shared is a problem halved. So which one of you would like to come over and help? Or just vacuum? Anyone? Don't all jump up at once. Yeah yeah yeah, i know. Call the school. Set up a meeting. Take care of yourself. That's important. You all know I know this. Just right now though, the thought of it all just makes me so damn tired. :-/
Oh well, let me go cook another side of fries. That's always a constant to depend on.
1)If you follow me on Facebook, you know Daddy Fry broke his ankle a few weeks ago. While he finally graduated to the walking boot, he is still not 100% back in the game. All the little things I take for granted that he does aren't getting done well or at all. I suspect I am giving him the same look of confusion that he sports when I have been deathly ill and to sick to cook, leaving them to fend for themselves. Aka "Go to Burger King". The lawn isn't getting mowed, I forget what day is trash day and what is recycling. My husband is Captain Vacuum. It's always been his thing. Over the weekend we got the kiddo to do it. It was good sensory OT for him so I consider that a win win. Mainly though, he is my kiddo's preferred playmate of choice. I'm Mommy and I'm a member of Team No Fun. I focus on schedules, baths and bedtimes. Plus the weekends are really when my kiddo can see his father. He works a lot. This has been a tough adjustment and we have weeks of recovery still to go. My husband has been sick quite a bit this year and I have informed him that according to HR at French Fry Inc, he has no more sick days left to take for the remainder of the year. Nor did he fill out any time off request forms.
2) Kiddo has had another day of not so hot behavior at school. Throwing stuff, yelling, general anxiety through the roof. A big thank you for the teacher for contacting me that day by phone to let me know as soon as she could. I appreciate that. It's still a great big mystery of why to me right now. There is no in your face reason to what gives. It has me very worried. We just took OUT his behavior plan at the last IEP in June. He didn't need it. Great behavior for well over a year and a half and now this. The kiddo is only getting bigger, not smaller. I don't want him to be miserable. I don't want him to be sad. I also don't want him to be violent. Towards himself or others. This behavior scares the ever loving crap out of me. I worry about his future. I saw how fast nine years went. In nine more, he will be eighteen. If he acts like this in a public setting, police would be called. I want to figure out what is going on. It makes me worried that the progress we have seen could be slipping away.
3)My older dog Ronan, who has been with the kiddo since he was a baby is not doing well. He has had some health issues recently that make me wonder if we are starting the beginning to the end with him. I am devastated to even think of how the kiddo could handle that.
4) I am currently having to make some medical choices of my own to make coming up that are a little daunting/confusing. Don't worry. I'm not at Death's door but they are not things fixed with a band aid or a pill. Some minor surgery will have to happen but as Daddy Fry is still limping around, I got to put it on hold. Which will make this possibly scheduled right in the middle of the holidays. Although the possible scripts for pain meds would be like a fun gift from Santa, I'd prefer not to have to go through medical stuff in order to get them. Recovery with a kiddo bouncing around is going to be challenging at best. This is the same kiddo that tried to take off my husband's cast on his own when he wouldn't go on a dog walk with him. (Mama does it wrong). Making choices for the kiddo with doctor input seems almost easier than making my own choice in this for what I want to have happen to me.
5) My family still expects to be fed dinner again tonight. I still have no idea what that will be. Alright so maybe in the grand scheme of things, this isn't a huge problem but currently it's weighing on me. All I know is I will be having a glass of wine for dinner with another glass of wine for dessert.
So that's what's up here. I know logically we will get through it as really, do I have any other choice? Nope. There is no sub to call in. It's all on me. I guess you could just consider this a problem shared is a problem halved. So which one of you would like to come over and help? Or just vacuum? Anyone? Don't all jump up at once. Yeah yeah yeah, i know. Call the school. Set up a meeting. Take care of yourself. That's important. You all know I know this. Just right now though, the thought of it all just makes me so damn tired. :-/
Oh well, let me go cook another side of fries. That's always a constant to depend on.
Tuesday, October 8, 2013
Putting my emotions on a shelf
Bottling up my emotions has never worked out well for me. I pretty much can't do it. If you know me personal, there is no such thing as a Poker Face on my mug. This tends to be a problem when I have to maintain a calm demeanour in challenging situations especially in regards to our autism life. (aka Dealing with asshats) Allow me to provide an example.
Last Thursday the kiddo came home from school scripting the same set of lines again and again. "No throw the white binders! No hitting Mrs. G. No yelling." I figured something went down during the day but he was lacking in the finer details, like who did it. Was he merely repeating what he heard staff say to the student having a crisis? Or was he just ratting himself out in his literal and honest autism way? He's been known to do both. No note in the communication book about it, so I shoot an email off to the teacher to find out the scoop. No response that night, or Friday, or all weekend until 7:30ish Sunday night. Literally minutes before I try to herd my kid off to the Land of Nod. He's finishing up watching The Polar Express and I'm checking my phone when I get her response. Why yes, it was my kid who decided to redecorate his classroom by tossing everything and yeah that was kind of really different for the kiddo because he is not like that at all at school. So yeah, I got confirmation on this radical change of behavior four days after the fact. Prefaced with she tried to email me back earlier but it didn't work, which I found so amusing as the PTG and it's multiple requests for me to join committees never seem to get lost that weekend.
I'm not going to lie. I sat there seething. I was livid. Four freaking days go by and not a peep! Not a "Hey there Your kid had a radical 180 change in his behavior and manner on school." in the notebook on Thursday or Friday. He does not do this stuff. Wouldn't you as a teacher want to follow up on that? Why did it take me even to have to make that first step? Hell hath no fury like an autism mama pissed off. At that moment, Satan himself would of been warning folks to leave me alone. But I can't go in there swinging as much as I would like too. Not yet. This is only our first tangle you see. I have to put it up on my emotion shelf for future reference. Storing it if you will. I quickly email back, CCing the piss out of that email to the husband and the caseworker and calmly, without cussing, explained how four days later doesn't do much for addressing behavior. Or trying to figure out if possibly this was the start of one of an ear infection or illness or the autism go to, does he have to poop? I need more details because my boy is on medication. This is the kind of thing I need to discuss with his doctor too. Personally, if the kid in your class is stellar and happy every freaking day to be there, wouldn't you want to nip that stuff in the bud before it became a habit? Or worry about his well being? But that's just me. To her credit, she emailed me back within minutes. I think she realized that the ball got dropped and if she wasn't careful it would soon be thrown at her head by yours truly. We figured out what needed to be done for future events should anything like that happen again. I'm glad we got to a solution that works for both of us. But you'll noticed I'm not completely without anger. I'm like Diet Livid. Same rage taste but with less a chance I'll meet her after school with a sock full of Thomas the Tank Engines.
It's just another experience to add to my shelf of anger, disappointment and frustration. There's only so many deep cleansing breaths you can take before cracking wise as a stress reliever becomes cracking skulls. This is only the beginning of October. This doesn't sit well with me for what our year will be like and I'm worried. My son is nine and that shelf is already becoming quite crowded. I might need bookcases for it soon. I'm constantly having to file and reorganize this shelf of emotions. Which ones are my high priorities? Can that group over there just chill out on a "keep warm" setting in a Crock Pot till I can get to them or will they boil over at the worst time possible? Sometimes the shelf is straining. Sometimes it's just sloppy and dusty. (Who are we kidding? It's always dusty. Mama Fry hates dusting) Sometimes I just want to take my hand and sweep all of that emotional junk off the shelf once and for all.
Ever feel like that? Or is that just me? I once had a doctor recommend I wake up an hour before the kiddo did each morning and meditate to help me center my emotions. I explained to her that my son likes to wake up most morning at 4:30am, meaning that would make me have to start waking at 3:30am. Frankly the only thing I want to meditate on at that hour is the what the insides of my eyelids look like. She quickly shut her mouth and then changed the subject.
Pardon me while I go rearrange my shelf. Have some fries while I do. :-)
Last Thursday the kiddo came home from school scripting the same set of lines again and again. "No throw the white binders! No hitting Mrs. G. No yelling." I figured something went down during the day but he was lacking in the finer details, like who did it. Was he merely repeating what he heard staff say to the student having a crisis? Or was he just ratting himself out in his literal and honest autism way? He's been known to do both. No note in the communication book about it, so I shoot an email off to the teacher to find out the scoop. No response that night, or Friday, or all weekend until 7:30ish Sunday night. Literally minutes before I try to herd my kid off to the Land of Nod. He's finishing up watching The Polar Express and I'm checking my phone when I get her response. Why yes, it was my kid who decided to redecorate his classroom by tossing everything and yeah that was kind of really different for the kiddo because he is not like that at all at school. So yeah, I got confirmation on this radical change of behavior four days after the fact. Prefaced with she tried to email me back earlier but it didn't work, which I found so amusing as the PTG and it's multiple requests for me to join committees never seem to get lost that weekend.
I'm not going to lie. I sat there seething. I was livid. Four freaking days go by and not a peep! Not a "Hey there Your kid had a radical 180 change in his behavior and manner on school." in the notebook on Thursday or Friday. He does not do this stuff. Wouldn't you as a teacher want to follow up on that? Why did it take me even to have to make that first step? Hell hath no fury like an autism mama pissed off. At that moment, Satan himself would of been warning folks to leave me alone. But I can't go in there swinging as much as I would like too. Not yet. This is only our first tangle you see. I have to put it up on my emotion shelf for future reference. Storing it if you will. I quickly email back, CCing the piss out of that email to the husband and the caseworker and calmly, without cussing, explained how four days later doesn't do much for addressing behavior. Or trying to figure out if possibly this was the start of one of an ear infection or illness or the autism go to, does he have to poop? I need more details because my boy is on medication. This is the kind of thing I need to discuss with his doctor too. Personally, if the kid in your class is stellar and happy every freaking day to be there, wouldn't you want to nip that stuff in the bud before it became a habit? Or worry about his well being? But that's just me. To her credit, she emailed me back within minutes. I think she realized that the ball got dropped and if she wasn't careful it would soon be thrown at her head by yours truly. We figured out what needed to be done for future events should anything like that happen again. I'm glad we got to a solution that works for both of us. But you'll noticed I'm not completely without anger. I'm like Diet Livid. Same rage taste but with less a chance I'll meet her after school with a sock full of Thomas the Tank Engines.
It's just another experience to add to my shelf of anger, disappointment and frustration. There's only so many deep cleansing breaths you can take before cracking wise as a stress reliever becomes cracking skulls. This is only the beginning of October. This doesn't sit well with me for what our year will be like and I'm worried. My son is nine and that shelf is already becoming quite crowded. I might need bookcases for it soon. I'm constantly having to file and reorganize this shelf of emotions. Which ones are my high priorities? Can that group over there just chill out on a "keep warm" setting in a Crock Pot till I can get to them or will they boil over at the worst time possible? Sometimes the shelf is straining. Sometimes it's just sloppy and dusty. (Who are we kidding? It's always dusty. Mama Fry hates dusting) Sometimes I just want to take my hand and sweep all of that emotional junk off the shelf once and for all.
Ever feel like that? Or is that just me? I once had a doctor recommend I wake up an hour before the kiddo did each morning and meditate to help me center my emotions. I explained to her that my son likes to wake up most morning at 4:30am, meaning that would make me have to start waking at 3:30am. Frankly the only thing I want to meditate on at that hour is the what the insides of my eyelids look like. She quickly shut her mouth and then changed the subject.
Pardon me while I go rearrange my shelf. Have some fries while I do. :-)
Wednesday, October 2, 2013
Autism Homework
This morning within ten minutes I received a text from a friend and a post on my Facebook from two different people in my life that said pretty much the same thing. "Hey have you heard about the book The Reason I Jump?" It's a book written by a non verbal autistic teenager and from reviews I've read, it's getting a lot of praise. The man that works with the teen and helped him with the book was being interviewed last night on The Daily Show. I suspect I'm going to hear a lot about this in the next few days.
Here's the thing. Yeah, I've heard about this book before. I'm an autism mom. I write a blog and run a Facebook page about it but honestly it is RARE when I read a book that has anything to do with autism. Heck it's rare that I even get to read period. It's not that I don't like to read. Quite the opposite really and the good Lord above has given me many afternoons spent in waiting rooms at various therapies to do so. If you put the new issue of In Style magazine in front of me and an autism book and an hour to read, you bet your sweet ass I'm going to seen sniffing the perfume ads and then rubbing them on my wrist in a sorry attempt to feel fashionable and current. (You all ever notice that they all start smelling the same anyway? Oh look! A coupon for my hair color. Rip!)
At risk of sounding like a whining teenager, I don't want to read it. I am in elbow deep in autism every damn day. Being asked about this book this morning made me feel like I was back in high school and the teacher called on me to ask me to read my book report on it to the class. Whoops, the dogs ate my homework??? No, you're not buying that? I left it in my locker? On the bus? Ummmm it's due today?? Crap. Can I just take the incomplete?
Eventually I'm going to read it. I have a feeling this is one of those few books I should. Insight into my kid's mind and all but I can bet you dollars to donuts I will take FOREVER to read it. I will put this book down a hundred times when it gets to real. I will be stuck on a paragraph or two for large gaps of time with light bulb moments of "Ohhhhhh that's what my kiddo wanted" and then racked with guilt that I screwed something up by not knowing or doing the right thing. If parental guilt was an Olympic sport, autism parents would take the gold every single time. Of course I hope there will be a few "I knew it!" moments in there and see I was right in my gut about something.
Yeah, I'm aware of the irony of this. Here I am asking all of you to read this while I'm having my pity party of not wanting to read that or any of the other books I have heard about. I just have a bigger secret wish in this. That more folks that don't have autism directly in their lives read books and blogs about this topic. I mean it's great we autism folks have each other to read and vent and trouble shoot and whatnot. We do need that, even when it gets painful and raw for us. Bottling it up is no good. We also need those hopeful stories that inspire us to go on. Plus humor, lots and lots of humor. We worry and cry enough. Sarcasm saves my sanity. I just know that if "civilians" read more books or blogs on it, well that only benefits us a bit doesn't it? A little more compassion. A smidge more understanding. A tad more compromising. A few less looks. (which Pro Tip, if you think what my kiddo is doing in public looks weird, hold up a mirror honey. Your expression looks like you just smelled your own fart Mmm'kay?)
A girl can dream can't she? Well I would if I got to sleep. :-) Now pardon me as I go smear on this sample of eye cream I got out of this month's Allure.
Here's the thing. Yeah, I've heard about this book before. I'm an autism mom. I write a blog and run a Facebook page about it but honestly it is RARE when I read a book that has anything to do with autism. Heck it's rare that I even get to read period. It's not that I don't like to read. Quite the opposite really and the good Lord above has given me many afternoons spent in waiting rooms at various therapies to do so. If you put the new issue of In Style magazine in front of me and an autism book and an hour to read, you bet your sweet ass I'm going to seen sniffing the perfume ads and then rubbing them on my wrist in a sorry attempt to feel fashionable and current. (You all ever notice that they all start smelling the same anyway? Oh look! A coupon for my hair color. Rip!)
At risk of sounding like a whining teenager, I don't want to read it. I am in elbow deep in autism every damn day. Being asked about this book this morning made me feel like I was back in high school and the teacher called on me to ask me to read my book report on it to the class. Whoops, the dogs ate my homework??? No, you're not buying that? I left it in my locker? On the bus? Ummmm it's due today?? Crap. Can I just take the incomplete?
Eventually I'm going to read it. I have a feeling this is one of those few books I should. Insight into my kid's mind and all but I can bet you dollars to donuts I will take FOREVER to read it. I will put this book down a hundred times when it gets to real. I will be stuck on a paragraph or two for large gaps of time with light bulb moments of "Ohhhhhh that's what my kiddo wanted" and then racked with guilt that I screwed something up by not knowing or doing the right thing. If parental guilt was an Olympic sport, autism parents would take the gold every single time. Of course I hope there will be a few "I knew it!" moments in there and see I was right in my gut about something.
Yeah, I'm aware of the irony of this. Here I am asking all of you to read this while I'm having my pity party of not wanting to read that or any of the other books I have heard about. I just have a bigger secret wish in this. That more folks that don't have autism directly in their lives read books and blogs about this topic. I mean it's great we autism folks have each other to read and vent and trouble shoot and whatnot. We do need that, even when it gets painful and raw for us. Bottling it up is no good. We also need those hopeful stories that inspire us to go on. Plus humor, lots and lots of humor. We worry and cry enough. Sarcasm saves my sanity. I just know that if "civilians" read more books or blogs on it, well that only benefits us a bit doesn't it? A little more compassion. A smidge more understanding. A tad more compromising. A few less looks. (which Pro Tip, if you think what my kiddo is doing in public looks weird, hold up a mirror honey. Your expression looks like you just smelled your own fart Mmm'kay?)
A girl can dream can't she? Well I would if I got to sleep. :-) Now pardon me as I go smear on this sample of eye cream I got out of this month's Allure.
Thursday, September 26, 2013
Autism, we're not the only ones tired.
It was a pretty typical Monday night for the kiddo and I. Daddy Fry was having a late evening at work. He had just finished a full day of school followed by an hour of speech therapy. We swung by the local pizza joint for a slice because if Daddy ain't home, Mama sure ain't cooking. Plus it's his main motivator for "good listening" in speech. We're at our kitchen table munching in silence when I see him do it. The move that almost breaks my heart. He puts down the slice with one hand while plopping his other arm on the table and slumps his forehead into his hand. Followed by a sigh that I swear her channeled from his great grandmother. The kiddo was wiped out.
It kind of hit me like a ton of bricks and I has to catch my breath not to cry. He didn't even have a "bad" day. It was a pretty good one actually but it also pretty damn busy. Now that school is back to full time and we're going hung ho with therapies out the wazoo. Up since "Dark Thirty". He is done. The wall has been hit and I worry because we only just started this schedule two and a half weeks ago.
Then I get to thinking it's not just getting back to this current schedule that may be wearing him out. The kiddo has been in some sort of therapy since he was barely 22 months old. He's 9 now. That's a long freaking time. Is he worn out? Is he bored? I used to really panic a few years ago when we would have to get a new therapist here and there. Mainly because they are all women and predictably they all get pregnant and go on what we call "The Baby Vacation". Now I'm thinking that is a good thing. Maybe a change in routine and person and their own bag of tricks might help keep my kiddo engaged. Give him a second wind. The kiddo has had four different OT's go off to have babies. I'm beginning to think he is a fertility idol and almost want to warn his newest one to use a back up method of contraceptive if she's not planning on a family right now. As she just only replaced the previous OT who went to go selfishly have a baby, I would like her to stick around a little while longer. But hey, if switching them up now and then perks the kiddo up a bit, I guess she better start knitting booties.
I can't fix the problem tonight. Or find the perfect solution. All I know to do is go into Mom Mode and make sure the rest of the night is chill. We get changed into pajamas and hop on the couch to watch the same three DVDs we watch every night. The ones where we only watch certain scenes and recite the lines of course. I then get him up in bed and snuggle up next to him. I know I'll probably drift off and in an hour wake up completely confused. Where am I am and why am I sharing a twin size bed with someone? Oh wait. I'm not in college. This is my son's room, not my dorm room. I will then go to my room and within minutes, he'll probably follow me. Yep, back into the routine and with a small elbow in my side to remind me he's worn out too.
I can't fix the problem tonight. Or find the perfect solution. All I know to do is go into Mom Mode and make sure the rest of the night is chill. We get changed into pajamas and hop on the couch to watch the same three DVDs we watch every night. The ones where we only watch certain scenes and recite the lines of course. I then get him up in bed and snuggle up next to him. I know I'll probably drift off and in an hour wake up completely confused. Where am I am and why am I sharing a twin size bed with someone? Oh wait. I'm not in college. This is my son's room, not my dorm room. I will then go to my room and within minutes, he'll probably follow me. Yep, back into the routine and with a small elbow in my side to remind me he's worn out too.
Thursday, September 19, 2013
Hell hath no fury.
"Autism moms ruin everything"
That was the phrase that lead someone to my blog a few weeks ago. Did you know we bloggers can find stuff like that out? I suppose it's so we can see what kind of viral reach we have going on. Sometimes the phrases are kind of amusing. I still chuckle at the one asking "what kind of cocktail for after an IEP". (Never did find that answer out. Leave your suggestions in the comments if you have a good recipe) This one however, stuck in my craw. (By the way, what is a craw and where the heck is it that things get stuck in it. Again, leave your answer in the comments.) The annoying part is I'm not sure what it is I or any other autism mom is ruining for everyone else. It's going to be a case of suck it up Buttercup for that random person. I got enough going on. To bad so sad you don't like me but I got plenty who do so, (Say it with me now with Jersey attitude) "You do you!"
I've been doing this a year, let's just say the skin is a little thicker to random stuff like that and I can laugh it off pretty well knowing it will eventually make excellent blog fodder. Thanks random angry stranger! This past week however stuff got slightly more personal for me with what I write and how people respond to it. I am Facebook friends with a special education teacher. She sent me a very nice message the other day telling me how she's been enjoying the blog and the companion Facebook page for it. I was pleased to hear it. It's nice to see folks in the field reading it. She did bring up a few points that I have been mulling around in my noggin ever since. Why are we (us autism parents) kind of well so freaking angry all the time? We seem to be constantly up and ready for a fight. Always on the defense. What has brought us there? She asked me to explain my perspective to her as she wanted to understand more my position as a parent. Where was all this coming from? She also knows I come from a place of not just a parent but as someone that used to work in a special needs school for kids with autism. I've done both sides of the parent teacher meeting table. She needed some insight. She wants parents to know she's on their side.
So what gives? Why are we all so pissed off and ruining everything like that random stranger implied? Why is my teacher friend so baffled by our cynical outlook. Well I don't know about you all but I got a list. Of course I got a list. I'm Autism Mom. We love our effing lists.
1) I am TIRED! For years my son has not slept through the night. Some evenings are better than others but to many are just when he's going on his second, third and fourth wind. Of course I think of my friend. She works a full time job and then goes home to her home and family to care for. I bet she's tired too. Or the kiddo's former teacher. She taught my kiddo all day only to go home to her own autistic kiddo. That's a whole lot of autism. We all come to the IEP table pretty worn out.
2) Paperwork and testing blows. My kiddo is 9 and I'm still filling out forms. Mounds of paperwork and god damn I am sick of writing out his APGAR score still. Like that makes a tiny bit of difference now? Sometimes it just seems like an incredible amount of busy work to have all this. I especially feel slapped in the face when it's clear that it wasn't read despite me taking the time to answer all the questions. (I'm looking at you Doctors/Insurance Companies) Again, I can't help but remember writing out reports to parents on how their kids were doing with their vocational training and hearing nothing back from them. So then I feel for the teachers who are the ones being mandated to ask these questions and do these certain tests. They know some of those questions suck too and yet they still got to ask them. Getting a new and improved test into this system? Oh Lordy good luck with that. Wheels of education grind slow. That's got to stick in their craw too. (Again where the Hell is this craw?)
3) Yes, teachers do only get a taste of our kids behaviors. They do get to punch out and be done for the day. Weekends and vacations off. When I didn't have a kiddo, it was really easy to leave my job at my desk. Except those times I got hurt on the job. I have been kicked, punched, slapped, and bit. Things thrown at me. Property of mine destroyed in front of me. I had to take a class every year to learn the latest physical restraint Du jour. I think I was trained in four different kinds before I stopped working in the field. (The plus side of this is I always did feel prepared if I was by myself at night in a parking lot) I suspect this has happened to a lot of teachers too. They get the glory of all this while making a pretty pathetic paycheck to boot. I'm not saying their martyrs here but let's face it. They ain't doing this for the money either. Lets give them credit. They could leave. Instead they choose to show up at work the next day like nothing ever happened and teach again.
4) Money. We're broke. They're broke and schools seem to be the last on every body's list for funding. We fight for the services because we want what is best for our kids. They're stuck in districts that don't have it to give. Another reason everyone comes kind of pissed off at the IEP table. Who's gonna win that round because it really is any body's guess. Therapists and doctors tell parents to get such and such services. Insurance won't pay. They claim the schools will do it. The schools can't always though. This vicious cycle is stuck on repeat. Lots of things getting stuck in various people's craws. Craws epidemic ensues. Someone starts a Facebook page on Craw Stucking Awareness.
My point is, we BOTH have to remember that the other is not the enemy. We have to take a deep breath and remember why we are there. Now I know there are many of you right now who are ready to write a gospel according to your experience in retort. Just take a moment before you do. I'm not saying go in with guns blazing but aware. I'm asking teachers to realize the utter drain we parents feel on a daily basis. You went to school for this stuff. We didn't. I know no parent gets handed a guidebook but we really get tossed through a loop into this special needs world. So be patient when you have to explain stuff to us a second or third time. It's your day at the office but it's our kid's life. I promise I won't go into it thinking you're all out to get me. I know you get paid a crap salary and I'm going to give you a nice gift at the holidays and the end of the year. I promise it won't be another coffee mug because I know you will probably collect a good thirty of them over your teaching career. Just know I'm in it for my kid and I'm "that parent". I'm involved because I want better for my kid.
I'll even share a side of fries with ya. :-)
That was the phrase that lead someone to my blog a few weeks ago. Did you know we bloggers can find stuff like that out? I suppose it's so we can see what kind of viral reach we have going on. Sometimes the phrases are kind of amusing. I still chuckle at the one asking "what kind of cocktail for after an IEP". (Never did find that answer out. Leave your suggestions in the comments if you have a good recipe) This one however, stuck in my craw. (By the way, what is a craw and where the heck is it that things get stuck in it. Again, leave your answer in the comments.) The annoying part is I'm not sure what it is I or any other autism mom is ruining for everyone else. It's going to be a case of suck it up Buttercup for that random person. I got enough going on. To bad so sad you don't like me but I got plenty who do so, (Say it with me now with Jersey attitude) "You do you!"
I've been doing this a year, let's just say the skin is a little thicker to random stuff like that and I can laugh it off pretty well knowing it will eventually make excellent blog fodder. Thanks random angry stranger! This past week however stuff got slightly more personal for me with what I write and how people respond to it. I am Facebook friends with a special education teacher. She sent me a very nice message the other day telling me how she's been enjoying the blog and the companion Facebook page for it. I was pleased to hear it. It's nice to see folks in the field reading it. She did bring up a few points that I have been mulling around in my noggin ever since. Why are we (us autism parents) kind of well so freaking angry all the time? We seem to be constantly up and ready for a fight. Always on the defense. What has brought us there? She asked me to explain my perspective to her as she wanted to understand more my position as a parent. Where was all this coming from? She also knows I come from a place of not just a parent but as someone that used to work in a special needs school for kids with autism. I've done both sides of the parent teacher meeting table. She needed some insight. She wants parents to know she's on their side.
So what gives? Why are we all so pissed off and ruining everything like that random stranger implied? Why is my teacher friend so baffled by our cynical outlook. Well I don't know about you all but I got a list. Of course I got a list. I'm Autism Mom. We love our effing lists.
1) I am TIRED! For years my son has not slept through the night. Some evenings are better than others but to many are just when he's going on his second, third and fourth wind. Of course I think of my friend. She works a full time job and then goes home to her home and family to care for. I bet she's tired too. Or the kiddo's former teacher. She taught my kiddo all day only to go home to her own autistic kiddo. That's a whole lot of autism. We all come to the IEP table pretty worn out.
2) Paperwork and testing blows. My kiddo is 9 and I'm still filling out forms. Mounds of paperwork and god damn I am sick of writing out his APGAR score still. Like that makes a tiny bit of difference now? Sometimes it just seems like an incredible amount of busy work to have all this. I especially feel slapped in the face when it's clear that it wasn't read despite me taking the time to answer all the questions. (I'm looking at you Doctors/Insurance Companies) Again, I can't help but remember writing out reports to parents on how their kids were doing with their vocational training and hearing nothing back from them. So then I feel for the teachers who are the ones being mandated to ask these questions and do these certain tests. They know some of those questions suck too and yet they still got to ask them. Getting a new and improved test into this system? Oh Lordy good luck with that. Wheels of education grind slow. That's got to stick in their craw too. (Again where the Hell is this craw?)
3) Yes, teachers do only get a taste of our kids behaviors. They do get to punch out and be done for the day. Weekends and vacations off. When I didn't have a kiddo, it was really easy to leave my job at my desk. Except those times I got hurt on the job. I have been kicked, punched, slapped, and bit. Things thrown at me. Property of mine destroyed in front of me. I had to take a class every year to learn the latest physical restraint Du jour. I think I was trained in four different kinds before I stopped working in the field. (The plus side of this is I always did feel prepared if I was by myself at night in a parking lot) I suspect this has happened to a lot of teachers too. They get the glory of all this while making a pretty pathetic paycheck to boot. I'm not saying their martyrs here but let's face it. They ain't doing this for the money either. Lets give them credit. They could leave. Instead they choose to show up at work the next day like nothing ever happened and teach again.
4) Money. We're broke. They're broke and schools seem to be the last on every body's list for funding. We fight for the services because we want what is best for our kids. They're stuck in districts that don't have it to give. Another reason everyone comes kind of pissed off at the IEP table. Who's gonna win that round because it really is any body's guess. Therapists and doctors tell parents to get such and such services. Insurance won't pay. They claim the schools will do it. The schools can't always though. This vicious cycle is stuck on repeat. Lots of things getting stuck in various people's craws. Craws epidemic ensues. Someone starts a Facebook page on Craw Stucking Awareness.
My point is, we BOTH have to remember that the other is not the enemy. We have to take a deep breath and remember why we are there. Now I know there are many of you right now who are ready to write a gospel according to your experience in retort. Just take a moment before you do. I'm not saying go in with guns blazing but aware. I'm asking teachers to realize the utter drain we parents feel on a daily basis. You went to school for this stuff. We didn't. I know no parent gets handed a guidebook but we really get tossed through a loop into this special needs world. So be patient when you have to explain stuff to us a second or third time. It's your day at the office but it's our kid's life. I promise I won't go into it thinking you're all out to get me. I know you get paid a crap salary and I'm going to give you a nice gift at the holidays and the end of the year. I promise it won't be another coffee mug because I know you will probably collect a good thirty of them over your teaching career. Just know I'm in it for my kid and I'm "that parent". I'm involved because I want better for my kid.
I'll even share a side of fries with ya. :-)
Thursday, September 12, 2013
Dear Me from 2006
Oh girl, you really haven't a clue what's in store for you. You thought by working in the field of autism and special needs that you were trained for what's ahead. Not even close. Not by a mile. You see, when it's YOUR kiddo's name on the paperwork (and there will be mounds of paperwork) and all the reams of data of what he can or cannot do in front of you, it's going to slap you so hard it makes you feel paralyzed with fear. Cause you used to write paperwork like that about somebody kiddo. You didn't have your heart tied to it. You wrote your report, goals, parent note home etc, filed the triplicate forms to the right parties and swiped out your time card at the end of the day. It's gonna be okay though honey. You see, your kiddo is gonna prove a lot of those tests and evaluations wrong. You know all those classes you took in college on testing and evaluations, you're gonna see first hand they really suck. There are a billion special kiddos in the world. How are you gonna put them all in the same box with the same test? Ridiculous right?
Really the test scores are going to look like a cake walk compared to how others in your life react to your son and his autism diagnosis. Betcha didn't know when you shared with someone you cared about your worry and your concerns about your son's issues that they could make it all about them. Honey, it's gonna knock you sideways to see how with autism in your life, you will loose some people. Some were friends and some even family. Don't worry though. This really does just weed out the ones that really didn't need to be there anymore. Plus the bonus is you will make room for the new ones. The really awesome, fantastic, oh my god I want to buy a compound and take on all these other gals as Sister Wives, autism moms. Folks who just nod their heads and get "it". So yeah, Thanks Autism. I've met some of the coolest people because of you.
He's going to do stuff you are convinced now he will never do. I'm talking big huge stuff here. Remember how you cried the other day that he would never say "I love you." or anything at all. Last December, he got up in front of an auditorium packed with people and introduced a song. Not only that, you heard him singing it from the second to back row where you were hiding from him as to not distract him. Oh and the toilet training, he did it! I KNOW! Heads up, you're still gonna have to remind him to go sometimes and it's going to take a long time to get "number two" down but he'll do it. Here I'm gonna rock your world when I tell you this one. Not only will handle all bathroom doings on his own, he'll tackle a public restroom on his own without you. That's right, you're baby boy is going to walk right into a men's room before you can grab him and just go do his thing. While you are standing outside freaking out about possible kidnappers and pedophiles in there, the only thing that's really going to frighten him is the automatic hand dryer. He did it. He survived. You'll be amazed and still frightened for him to do it again but you'll let him because that's what we're working this hard to do.
Yeah, you are going to still be so freaking tired. Sleep and autism. They really don't go hand in hand. You will spend a lot of money on coffee and melatonin. What else can I say? Somehow you just get used to it. You won't like it any but you'll just accept your fate and deal with it.
You're still going to have pity parties. They'll be shorter though because you're going to learn that they don't really help much in the long scheme of things. Besides, you got a blog to write. Nobody is going to want to read another depressing blog. That's right sport, you're going to be cracking wise about autism. There are going to still be days that suck ass but you will learn that it's way more important to focus on the funny. That's what is going to get you through this. Snark on Mama. Sarcasm saves Sanity.
Also stock up on wine. Lots of wine. And Advil.
Love me. :-)
Really the test scores are going to look like a cake walk compared to how others in your life react to your son and his autism diagnosis. Betcha didn't know when you shared with someone you cared about your worry and your concerns about your son's issues that they could make it all about them. Honey, it's gonna knock you sideways to see how with autism in your life, you will loose some people. Some were friends and some even family. Don't worry though. This really does just weed out the ones that really didn't need to be there anymore. Plus the bonus is you will make room for the new ones. The really awesome, fantastic, oh my god I want to buy a compound and take on all these other gals as Sister Wives, autism moms. Folks who just nod their heads and get "it". So yeah, Thanks Autism. I've met some of the coolest people because of you.
He's going to do stuff you are convinced now he will never do. I'm talking big huge stuff here. Remember how you cried the other day that he would never say "I love you." or anything at all. Last December, he got up in front of an auditorium packed with people and introduced a song. Not only that, you heard him singing it from the second to back row where you were hiding from him as to not distract him. Oh and the toilet training, he did it! I KNOW! Heads up, you're still gonna have to remind him to go sometimes and it's going to take a long time to get "number two" down but he'll do it. Here I'm gonna rock your world when I tell you this one. Not only will handle all bathroom doings on his own, he'll tackle a public restroom on his own without you. That's right, you're baby boy is going to walk right into a men's room before you can grab him and just go do his thing. While you are standing outside freaking out about possible kidnappers and pedophiles in there, the only thing that's really going to frighten him is the automatic hand dryer. He did it. He survived. You'll be amazed and still frightened for him to do it again but you'll let him because that's what we're working this hard to do.
Yeah, you are going to still be so freaking tired. Sleep and autism. They really don't go hand in hand. You will spend a lot of money on coffee and melatonin. What else can I say? Somehow you just get used to it. You won't like it any but you'll just accept your fate and deal with it.
You're still going to have pity parties. They'll be shorter though because you're going to learn that they don't really help much in the long scheme of things. Besides, you got a blog to write. Nobody is going to want to read another depressing blog. That's right sport, you're going to be cracking wise about autism. There are going to still be days that suck ass but you will learn that it's way more important to focus on the funny. That's what is going to get you through this. Snark on Mama. Sarcasm saves Sanity.
Also stock up on wine. Lots of wine. And Advil.
Love me. :-)
Wednesday, September 4, 2013
Sometimes it's not Autism
Every waking minute of my day is spent going over the kiddo's behavior with a fine tooth comb. It's so hard to turn off that part of my brain and just enjoy him sometimes. I haven't manged to yet. Best I have done at times is hit the "mute" button. Hey, it's a start.
Not every move he makes is based on his autism. Sometimes he's motivated for more independence. Sometimes he's just being a pain in the ass. (GASP! Clutches Pearls!) Sometimes he is just questioning the rules. Sometimes he is push the boundaries. Sometimes he's just nine freaking years old. I'm so focused on advocating for awareness and acceptance for my son's autism that I completely forget he is so much more than just a medical diagnosis on a file.
Case in point, the recent development of his inability to walk under a door frame or arch way without having to take a running leap and jump up to slap it with his hand. One might say his desire to do this every time is his autism. Nope, I can't agree. He's just reminding me of every guy I went to high school and college with. Hell, my husband still does this from time to time. (Seriously guys, what's with this? I don't get this at all. Is it because it's there? Really, fill me in here) This is when it's not autism.
There now seems to be a expanding interest in music. I'm not talking your standard kiddie stuff, although those do get played from time to time. (Hey we still have an autism house here. No toy/ thing ever truly goes away) He's really getting into all kinds of music. I'm finding him more and more just taking the iPad and going into his room or on the couch to listen to music and or watch videos (did you know they still make them? I know!) on YouTube. Kind of like what all tweens/teens like to do. Is he closing himself off from the world? Autism shutting everyone out? Well he's just doing what I did every single day and still do from time to time. Just chilling out with a favorite artist. So is it autism or just being a tween. I'm thinking it's not just autism. I'm thinking he's got full ass days full of therapy and school. If twenty minutes of listening to Katy Perry is going to chill him out, by all means kiddo.
Then we got the eating thing. Damn is that getting better. Now I had every mom tell me "when he's hungry he'll eat" All autism parents are laughing now because we all know that never happens. Not to us. Or "when he's older, he'll eat better." Yeah I'm guessing you didn't have to meet with a therapist and have three or four sessions dedicated to learning how to eat a sandwich. So yeah, we did do eating therapy twice now. The first time it didn't really take at all. We backed off and took it up again. Maybe now at this age, he was ready. So maybe some of those parents were right about the older part but we also still have to teach him how to approach new foods and textures. I'm starting to see now though, just some foods he does not like. While part of me wonders if I should ask his therapist for more help, the other part wonders "well maybe he just doesn't like it?" There are foods that I don't like. Doesn't his opinion matter? If he never eats a piece of steak, is that a tragedy? The world won't end if he doesn't like peanut butter and jelly sandwiches.
Sometimes it's not Autism. If it was always autism well everyone would be right? Why is so hard to turn off that autism filter I view everything with?
Not every move he makes is based on his autism. Sometimes he's motivated for more independence. Sometimes he's just being a pain in the ass. (GASP! Clutches Pearls!) Sometimes he is just questioning the rules. Sometimes he is push the boundaries. Sometimes he's just nine freaking years old. I'm so focused on advocating for awareness and acceptance for my son's autism that I completely forget he is so much more than just a medical diagnosis on a file.
Case in point, the recent development of his inability to walk under a door frame or arch way without having to take a running leap and jump up to slap it with his hand. One might say his desire to do this every time is his autism. Nope, I can't agree. He's just reminding me of every guy I went to high school and college with. Hell, my husband still does this from time to time. (Seriously guys, what's with this? I don't get this at all. Is it because it's there? Really, fill me in here) This is when it's not autism.
There now seems to be a expanding interest in music. I'm not talking your standard kiddie stuff, although those do get played from time to time. (Hey we still have an autism house here. No toy/ thing ever truly goes away) He's really getting into all kinds of music. I'm finding him more and more just taking the iPad and going into his room or on the couch to listen to music and or watch videos (did you know they still make them? I know!) on YouTube. Kind of like what all tweens/teens like to do. Is he closing himself off from the world? Autism shutting everyone out? Well he's just doing what I did every single day and still do from time to time. Just chilling out with a favorite artist. So is it autism or just being a tween. I'm thinking it's not just autism. I'm thinking he's got full ass days full of therapy and school. If twenty minutes of listening to Katy Perry is going to chill him out, by all means kiddo.
Then we got the eating thing. Damn is that getting better. Now I had every mom tell me "when he's hungry he'll eat" All autism parents are laughing now because we all know that never happens. Not to us. Or "when he's older, he'll eat better." Yeah I'm guessing you didn't have to meet with a therapist and have three or four sessions dedicated to learning how to eat a sandwich. So yeah, we did do eating therapy twice now. The first time it didn't really take at all. We backed off and took it up again. Maybe now at this age, he was ready. So maybe some of those parents were right about the older part but we also still have to teach him how to approach new foods and textures. I'm starting to see now though, just some foods he does not like. While part of me wonders if I should ask his therapist for more help, the other part wonders "well maybe he just doesn't like it?" There are foods that I don't like. Doesn't his opinion matter? If he never eats a piece of steak, is that a tragedy? The world won't end if he doesn't like peanut butter and jelly sandwiches.
Sometimes it's not Autism. If it was always autism well everyone would be right? Why is so hard to turn off that autism filter I view everything with?
Wednesday, August 28, 2013
And we're live!
These words still ring in my head from a year ago today when I first wrote about my life with the kiddo for the local radio station. I was asked to write something about what a day in the world of our autism looked like. I literally wrote it in about an hour while waiting for the kiddo to finish OT. I then sent it off to my pal Laurie Cataldo over at 94.3 WJLK in an email and she replied back with this, "And we're live!". POOF! Up on the radio stations website and that my fries was the kick in the pants into the world of blogging. When people ask me why or how I started blogging, I always tell them "By accident."because I never thought it would be more than that.
Oh do you want to read that first post? It's pretty funny. Not to brag or nothing but I was proud of it. Go on! Read it. I'll wait. :-) (http://943thepoint.com/a-day-in-the-life-of-an-autism-parent/)
A year later I sit and now I got 15 thousand folks who I call "fries" sitting with me. Plus, somehow I got renamed "Mama Fry". I don't know how that happen but I like it. Nothing really could prep me for both the good and bad of it but like autism, I guess you could say, it's kind of the same. One day you're just doing your thing, living life, slightly worried about your kid and then some doctor, therapist, loved one, teacher etc says "autism" to you "and we're live" happens to you. Your perspective shifts forever. Once you are in it there is no getting out of it. Much like the mafia. You may fight it at first but eventually you learn to "leave the gun and take the cannoli".
As you wade through it, you start to see there are turf wars going on in autism. Parent Advocate vs. Self Advocate. GFCF diets vs. blogs named after the only food your kiddo might eat. (Actually this is all a farce. The kiddo hates them but Autism with a side of Kale didn't have the same ring to it) You meet the foot soldiers in the Vaccines/No Vaccines Army and watch the "shots" fly over well, shots! (Ha! I tell ya I'm on fire today.) And let's not get started on to medicate or not to medicate debate, we'll be here all damn day and I got to take the boy out for new sneakers later. You think you're down with the rest of your peeps, wearing the right autism blue gang color but then you learn that's not really for all of autism as much as it is for Autism Speaks and a lot of people have big issues with them. Eventually you might have a moment of thinking "I just want to learn how to get my kid to poop on the toilet! I'm too sleep deprived to read a 40 paragraph blog on whether I should say "child with autism or autistic"!!!! We're live!! We got to do all the right things now!"
All I can say, chill sport. It's gonna be okay. It's not gonna be what you thought it was but it's gonna be alright. The longer you are "live", the more rehearsed you are, the more you can manage. Some stuff is going to still screw you up. You're going to encounter something that reminds you that you are "live" in a performance you didn't get a script for and it will bring you to your knees. You'll have your pity party and you'll move on. (For example, last night I hid in my laundry room when I thought our AC was broken and had a five minute ugly cry.) You don't have a choice. You have no understudy. You'll learn to improv really well with what life throws at you. You'll know when to edit things out of your life that simply don't serve their roles anymore.
Going "live" this time last year was scary and getting that autism diagnosis is too. Just remember, much like the mafia, other folks taking this journey are loyal as HELL to others doing the same. They know the script. I mean of course they do. There's a good chance their kid has been scripting it all day like my kid. Even when they live over in a completely different turf, they still got our backs.
A year has come and gone but we're still live and I got to get ready because I promised the kiddo lunch. Guess what we're eating? :-)
Oh do you want to read that first post? It's pretty funny. Not to brag or nothing but I was proud of it. Go on! Read it. I'll wait. :-) (http://943thepoint.com/a-day-in-the-life-of-an-autism-parent/)
A year later I sit and now I got 15 thousand folks who I call "fries" sitting with me. Plus, somehow I got renamed "Mama Fry". I don't know how that happen but I like it. Nothing really could prep me for both the good and bad of it but like autism, I guess you could say, it's kind of the same. One day you're just doing your thing, living life, slightly worried about your kid and then some doctor, therapist, loved one, teacher etc says "autism" to you "and we're live" happens to you. Your perspective shifts forever. Once you are in it there is no getting out of it. Much like the mafia. You may fight it at first but eventually you learn to "leave the gun and take the cannoli".
As you wade through it, you start to see there are turf wars going on in autism. Parent Advocate vs. Self Advocate. GFCF diets vs. blogs named after the only food your kiddo might eat. (Actually this is all a farce. The kiddo hates them but Autism with a side of Kale didn't have the same ring to it) You meet the foot soldiers in the Vaccines/No Vaccines Army and watch the "shots" fly over well, shots! (Ha! I tell ya I'm on fire today.) And let's not get started on to medicate or not to medicate debate, we'll be here all damn day and I got to take the boy out for new sneakers later. You think you're down with the rest of your peeps, wearing the right autism blue gang color but then you learn that's not really for all of autism as much as it is for Autism Speaks and a lot of people have big issues with them. Eventually you might have a moment of thinking "I just want to learn how to get my kid to poop on the toilet! I'm too sleep deprived to read a 40 paragraph blog on whether I should say "child with autism or autistic"!!!! We're live!! We got to do all the right things now!"
All I can say, chill sport. It's gonna be okay. It's not gonna be what you thought it was but it's gonna be alright. The longer you are "live", the more rehearsed you are, the more you can manage. Some stuff is going to still screw you up. You're going to encounter something that reminds you that you are "live" in a performance you didn't get a script for and it will bring you to your knees. You'll have your pity party and you'll move on. (For example, last night I hid in my laundry room when I thought our AC was broken and had a five minute ugly cry.) You don't have a choice. You have no understudy. You'll learn to improv really well with what life throws at you. You'll know when to edit things out of your life that simply don't serve their roles anymore.
Going "live" this time last year was scary and getting that autism diagnosis is too. Just remember, much like the mafia, other folks taking this journey are loyal as HELL to others doing the same. They know the script. I mean of course they do. There's a good chance their kid has been scripting it all day like my kid. Even when they live over in a completely different turf, they still got our backs.
A year has come and gone but we're still live and I got to get ready because I promised the kiddo lunch. Guess what we're eating? :-)
Saturday, August 24, 2013
Is she really going out with him?
The husband has had this week off from work. He's done his very best to play court jester and keep the lad entertained at all times. Honestly it's like the boy is shooting bullets at his feet and yelling "Dance for me! Dance!" Daddy Fry really works his ass off harder on a week off from work then when he's at work. In fact, come Monday, he's going to be leaving this house with a giant relaxed smile on his face knowing he can finally slow down his pace at the office. I wouldn't even be surprised if on Sunday he goes into the office on the guise of "catching up". That's okay by me. I have a date!
Like most gobs of time off or weekends, the kiddo is very concerned about his schedule. It's not a case of just wanting to know what's coming next. He NEEDS to know in order to just maintain any sort of level of calm. I find on weeks when Daddy is off too, the constant worry about the next activity came become even worse. Daddy being home is just not the norm to him. No matter what. So we plan out the day from the moment we wake up to the moment he's going to bed. Sometimes I resent having to do that. I'm not going to lie. I miss those child free days of my 20's where I was actually kind of bored on a weekend. Or the ones where I could just chill out with a good book and take several hours at a mall if I felt the need. (Back when I had extra cash to spend on something really important like the perfect shade of lip stick) Other times, I see how content and happy it makes him knowing what's coming. The day feels more organized and things get done that need to be done. Because the kiddo ain't gonna let ya forget it.
This morning he kept pacing around the living room worried about August 25th. I have to admit, I sighed a little when I heard him start repeating the date. I knew what he meant. He wanted to play for tomorrow but Geez, it wasn't even lunch time yet. Plus, I couldn't think of one solid thing that had to be done that he could focus on. I closed my eyes and took a deep breath and just thought "How can I talk him down from this?" I saw the pacing getting faster back and forth. I knew I had to try and come up with something.
Me: "What about August 25th kiddo?"
Him: "It's a Sunday!"
Me: "Yes it is. August 25th is a Sunday. What would you like to do that day?" (yeah I'm sick of coming up with ideas. Let me throw this planning onto him. What's the worst he could come up with? Flight to Paris? Great! I always wanted to go)
Him: "Planes. Go see Planes" (At this point I think he's referring to one of the several places we saw actual planes this week. It's was a museum madness week.)
Me:" Yep Planes. You like them. You want to go see some again?" (not an impossible task. We do live by a local small airport.)
Him: "No no no no no. Go SEE Planes! Get TWO Tickets and a Popcorn! With Kiddo!"
Did my kid just ask me out to the movies? He totally did didn't he? My mouth hit the floor. Usually this back and forth pacing is just me randomly guessing by tossing out nouns until I get the right one of things he decides to do. He just planned an event. He just figure out a way to tell me what he it was he wanted to do. He got inspired by all those freaking planes we saw all week even though I wondered "Is he even enjoying this?" at times. He is carrying over the theme!
And even though we have already seen this movie, I turned to him and said "Yes. You wanna take me on a date? You got it."
And he said "Yes! Sunday Mommy and Kiddo go see a Movie. No Daddy. Just two tickets and popcorn."
So tomorrow, I will sit through Planes again, gladly. I'm going to have to bring my wallet though. My date will probably forget to bring his. :-)
Like most gobs of time off or weekends, the kiddo is very concerned about his schedule. It's not a case of just wanting to know what's coming next. He NEEDS to know in order to just maintain any sort of level of calm. I find on weeks when Daddy is off too, the constant worry about the next activity came become even worse. Daddy being home is just not the norm to him. No matter what. So we plan out the day from the moment we wake up to the moment he's going to bed. Sometimes I resent having to do that. I'm not going to lie. I miss those child free days of my 20's where I was actually kind of bored on a weekend. Or the ones where I could just chill out with a good book and take several hours at a mall if I felt the need. (Back when I had extra cash to spend on something really important like the perfect shade of lip stick) Other times, I see how content and happy it makes him knowing what's coming. The day feels more organized and things get done that need to be done. Because the kiddo ain't gonna let ya forget it.
This morning he kept pacing around the living room worried about August 25th. I have to admit, I sighed a little when I heard him start repeating the date. I knew what he meant. He wanted to play for tomorrow but Geez, it wasn't even lunch time yet. Plus, I couldn't think of one solid thing that had to be done that he could focus on. I closed my eyes and took a deep breath and just thought "How can I talk him down from this?" I saw the pacing getting faster back and forth. I knew I had to try and come up with something.
Me: "What about August 25th kiddo?"
Him: "It's a Sunday!"
Me: "Yes it is. August 25th is a Sunday. What would you like to do that day?" (yeah I'm sick of coming up with ideas. Let me throw this planning onto him. What's the worst he could come up with? Flight to Paris? Great! I always wanted to go)
Him: "Planes. Go see Planes" (At this point I think he's referring to one of the several places we saw actual planes this week. It's was a museum madness week.)
Me:" Yep Planes. You like them. You want to go see some again?" (not an impossible task. We do live by a local small airport.)
Him: "No no no no no. Go SEE Planes! Get TWO Tickets and a Popcorn! With Kiddo!"
Did my kid just ask me out to the movies? He totally did didn't he? My mouth hit the floor. Usually this back and forth pacing is just me randomly guessing by tossing out nouns until I get the right one of things he decides to do. He just planned an event. He just figure out a way to tell me what he it was he wanted to do. He got inspired by all those freaking planes we saw all week even though I wondered "Is he even enjoying this?" at times. He is carrying over the theme!
And even though we have already seen this movie, I turned to him and said "Yes. You wanna take me on a date? You got it."
And he said "Yes! Sunday Mommy and Kiddo go see a Movie. No Daddy. Just two tickets and popcorn."
So tomorrow, I will sit through Planes again, gladly. I'm going to have to bring my wallet though. My date will probably forget to bring his. :-)
Thursday, August 22, 2013
Opps, my words fell out.
There's song out on the radio (94.3 THE POINT!!! and yes I sang that radio's jingle as I typed it) right now called "Brave" by Sara Bareilles. I know it's pretty poppy and probably makes me a 12 year old for liking it. I don't care. I FREAKING LOVE IT! Is it possible to have a blogging theme song? Cause from the first time I heard it that's what I thought it was for me.
"You can be amazing
You can turn a phrase into a weapon or a drug
You can be the outcast
Or be the backlash of somebody’s lack of love
Or you can start speaking up"
Words just make up every single flipping thing. In this autism house we live in, communication is such a huge part of our lives. What we meant. What he understood it as. What he was able to communicate back to us once the words were out there. Autism has taught me so much the weight of words. Trying to explain how I feel to others who I hope either understand what I mean or at least can appreciate what it is I'm trying to say. There's no font for tone. I just have to hope I wasn't completely off my rocker when I put it out there. Let's face it, most of the time it is. I'm just hoping people just blame that on me being sleep deprived.
"But I wonder what would happen if you
Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave"
I know what happens. Change. The more I talk here and on Facebook or Twitter, the more I can organize my thoughts. I have been able to assess with less panic what it is that needs to be done first. I'm still overwhelmed but that's what wine and bitching in my blog is for. It just seems a little more doable. The more I speak, write or advocate for my kiddo, the natural it seems to be. It's still hard and there are days where I just sigh and think "Oh Christ I got to explain this blah blah blah to yadda yadda yadda AGAIN?!?!?" but I do it because if I don't "let the words fall out", nothing will change. Nada. We'll stay stuck and that doesn't help at all.
"And since your history of silence
Won’t do you any good,
Did you think it would?
Let your words be anything but empty
Why don’t you tell them the truth?"
In my own 'history of silence", I was very closed off about what was going on in our autism home. That was really dumb. What was I trying to keep silent? That he had autism because you spend two minutes with the kiddo, you're gonna know. There's no real surprise there. Who knows? I certainly don't go looking for trouble but dammit, you bring up my kid, IT IS ON! The longer time served in this autism army, the more I am ready to jump in when I see one of our own being picked on. Seriously, have you seen how fast autism parents channel their anger into advocacy online? We have to remember how fast and how furious our wrath is. If you are going to hear from us, you will not forget what we say when "the words fall out." Especially when you folks try to challenge the rights our kids should have. Honestly, it's like you bringing a knife to a gunfight. We will own you. I try to remember to make my words pack a punch though. I don't respond to every bait thrown my way. Some trolls aren't worth the effort to turn on a computer to write back. If you hear from me, you will remember it. Even if we never speak again.
Mostly the song reminds me to try. Even when I am so tired and cry "What the eff was I thinking?". Nine times out of ten an activity might bomb but I will still think of that one time it worked for him. I will remember how glorious it felt and the hope that it brought. Those other times, well I'll just order another side of fries.
"You can be amazing
You can turn a phrase into a weapon or a drug
You can be the outcast
Or be the backlash of somebody’s lack of love
Or you can start speaking up"
Words just make up every single flipping thing. In this autism house we live in, communication is such a huge part of our lives. What we meant. What he understood it as. What he was able to communicate back to us once the words were out there. Autism has taught me so much the weight of words. Trying to explain how I feel to others who I hope either understand what I mean or at least can appreciate what it is I'm trying to say. There's no font for tone. I just have to hope I wasn't completely off my rocker when I put it out there. Let's face it, most of the time it is. I'm just hoping people just blame that on me being sleep deprived.
"But I wonder what would happen if you
Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave"
I know what happens. Change. The more I talk here and on Facebook or Twitter, the more I can organize my thoughts. I have been able to assess with less panic what it is that needs to be done first. I'm still overwhelmed but that's what wine and bitching in my blog is for. It just seems a little more doable. The more I speak, write or advocate for my kiddo, the natural it seems to be. It's still hard and there are days where I just sigh and think "Oh Christ I got to explain this blah blah blah to yadda yadda yadda AGAIN?!?!?" but I do it because if I don't "let the words fall out", nothing will change. Nada. We'll stay stuck and that doesn't help at all.
"And since your history of silence
Won’t do you any good,
Did you think it would?
Let your words be anything but empty
Why don’t you tell them the truth?"
In my own 'history of silence", I was very closed off about what was going on in our autism home. That was really dumb. What was I trying to keep silent? That he had autism because you spend two minutes with the kiddo, you're gonna know. There's no real surprise there. Who knows? I certainly don't go looking for trouble but dammit, you bring up my kid, IT IS ON! The longer time served in this autism army, the more I am ready to jump in when I see one of our own being picked on. Seriously, have you seen how fast autism parents channel their anger into advocacy online? We have to remember how fast and how furious our wrath is. If you are going to hear from us, you will not forget what we say when "the words fall out." Especially when you folks try to challenge the rights our kids should have. Honestly, it's like you bringing a knife to a gunfight. We will own you. I try to remember to make my words pack a punch though. I don't respond to every bait thrown my way. Some trolls aren't worth the effort to turn on a computer to write back. If you hear from me, you will remember it. Even if we never speak again.
Mostly the song reminds me to try. Even when I am so tired and cry "What the eff was I thinking?". Nine times out of ten an activity might bomb but I will still think of that one time it worked for him. I will remember how glorious it felt and the hope that it brought. Those other times, well I'll just order another side of fries.
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