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. :-)
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