As the kiddo gets older, matures and all these therapies that we do kick in, I see more moments of him really trying to work with his autism. It's kind of like a tango but both partners want to take the lead. I'm never sure who's going to do the dip and I'm sure that crazy Bruno judge on "Dancing with the Stars" might jump out of his seat at the end of the performance to declare what went wrong, what he loved and how he wants them to really "bring it" next week. (I don't get that. Where are they suppose to bring it? They're on the dance floor already.) Pfft. Anyway, you might know what I mean. As challenges come up, I'm not always sure how it's going to go down in this autism house.
Take the past few weeks with the weather. Two snow days, one early dismissal and one delayed opening. All I see when I read that is CHAOS!! So much schedule chaos. To the point that I want to cry when I see the school on the caller ID on my phone. I really ought to get the ring tone that says "LET'S GETTING READY TO RUMBLE!!!!" I found out late Tuesday night that there would be no school Wednesday. The kiddo was already asleep. Was I going to wake him up and tell him? Oh Hell no. I'd deal with it in the AM, before coffee, before my body even left the bed. Yeah, just as smart an idea but I don't wake a sleeping kiddo ever.
Sure enough he comes running in and hops on top of me while I was sound asleep at 5:12 AM to announce it's school time and with my eyes closed still tell him, "Nope. Not today kiddo. Snow day. They canceled it." It's like I'm new here. Like he was just going to accept that information as is. I can literally hear the gears churning in his mind. He leans over and turns on my nightstand lamp and shines it at me like a mob wise guy shaking me down for information. "NO SCHOOL?!" So while squinting and trying to remember what day of the week it was and what's going on and why am I sleeping with a kosh ball, I try to patiently explain that there is too much snow and how dangerous it is for buses to be out on the road. That the good news is, he can go play in the snow. How much fun that will be and how we'll drink hot chocolate and make popcorn and watch movies.
Then the wrestling match starts. I see him trying to work out theses changes. He likes school. He likes snow but he can't have both. Can he accept one for the other? He asks me several times "School tomorrow??" He's got to know the "first and then" of the situation. I can't blame him. I've set our life up that way. Then he announces the order of how he wants his day, if he's to accept this new organized chaos into his life. I "yes" him to most of it. (Mama has also woken up with killer head cold. Going out in this is not on my agenda. Not if I can help it) He then has to inform my husband, the dogs and pretty much the whole block, loudly of the new schedule. As much as I would like him to just go with the flow and not grill me a thousand times on the changes, I'll take it. The alternative is non stop screaming for an hour.
Just when I go to bed Wednesday night, I find out there is a two hour delay the next morning. I'm not telling him. We'll just deal with it. The bus is late. Yadda yadda yadda. The bigger problem, no lunch will be served and it's one of his favorites on the schedule. Sorry Teacher. You're gonna have to deal with that possible wrestling match. He's on your watch. Assure him there still will be french fries at dinner. Mama stocked up.
Thursday, January 23, 2014
Wednesday, January 15, 2014
Where are you?
I see it on the time online from parents with kids with autism. Big declarations of where their kids fall on the spectrum. High functioning, severe, moderate, diet (no wait a minute. Scratch that last one). I'm also peppered with questions from you guys where The Kiddo is at too? Here's the thing. I don't know. I can't pinpoint him in one category I've even been accused of making up the mere existence of my kiddo in order to have a blog. Yep, that's right. I'm totally faking this all. All the big money is in autism blogging. Everyone knows that. I just love me some free sensory toys swag! I'm totally chewing on some chewy tubes right now while sitting on a therapy ball.
Part of this is because I don't share his picture or name, I am sure. How can I prove his autism to the doubters. Here's the thing. He didn't ask me to write a blog about him, so that's not changing anytime soon. Despite him being the most handsome creature on earth, yes, I will continue to deny you the pleasure of his face. Sorry! So I guess I'll make a little list for you. I understand your need to want to put him under a label. You want to organize your blogs. Hey, autism lives here. I completely get that.
I have a kiddo who can look up and find hotel deals on the Groupon App on the iPad but he can't tie his own shoes.
I have a kiddo upon hearing his music therapist play a chord on the guitar can go over to the piano and find the same chord on there. Did I mention we don't even have a piano? He's never taken a formal lesson. He still can't sign his own name without a lot of help.
I have a kiddo who laughed out loud when a tiger at the zoo roared so loud that the ground shook but is scared to death at the sound of a fly buzzing by his head.
I have a kiddo who can tell you the number of any hotel room we have ever stayed in and the location. Every number theater and what movie we saw in it. Everyone he ever meets birthday but he couldn't give you the directions to our house from school to get him home.
I have a kiddo that can tell you his father is a lawyer and works in an office but he has no idea really what that means.
I have a kiddo who loves being around other kiddos but as soon as he is he completely ignores them. Yet when I tell him it's time for us to leave, will meltdown if I didn't give him enough time to prepare for leaving the very kiddos he is busy ignoring.
I have a kiddo that has brought me to my knees crying in frustration countless times. I have a kiddo who has made me so happy that my heart could burst.
I have a kiddo who couldn't say his own name till he was five years old but at eight years old walked on stage at a holiday concert and in front of a packed house of hundreds introduce the next song that they would sing.
I have a kiddo who is so set in his nighttime routine that he cannot skip a single part of it, despite falling asleep during it most nights. If we try to skip parts, meltdown city.
I have a kiddo that still has trouble balancing or hopping on one foot but he can whiz around the neighborhood on a scooter or bike with no problem.
I have a kiddo who will jump into any pool but needs prompting to remember that the water from the shower won't hurt.
I have a kiddo that can sing along to James Taylor's "Sweet Baby James" word for word but still has trouble speaking in full sentences and using the correct pronouns.
I have a kiddo that I love and that kiddo has autism. His autism. Kiddo autism and that's an autism I am still learning about each day.
Does this list prove it enough for you? Well then, if not, feel free to pick him up for a side of fries. I'm sure he'll be happy to prove his autism to you.
Part of this is because I don't share his picture or name, I am sure. How can I prove his autism to the doubters. Here's the thing. He didn't ask me to write a blog about him, so that's not changing anytime soon. Despite him being the most handsome creature on earth, yes, I will continue to deny you the pleasure of his face. Sorry! So I guess I'll make a little list for you. I understand your need to want to put him under a label. You want to organize your blogs. Hey, autism lives here. I completely get that.
I have a kiddo who can look up and find hotel deals on the Groupon App on the iPad but he can't tie his own shoes.
I have a kiddo upon hearing his music therapist play a chord on the guitar can go over to the piano and find the same chord on there. Did I mention we don't even have a piano? He's never taken a formal lesson. He still can't sign his own name without a lot of help.
I have a kiddo who laughed out loud when a tiger at the zoo roared so loud that the ground shook but is scared to death at the sound of a fly buzzing by his head.
I have a kiddo who can tell you the number of any hotel room we have ever stayed in and the location. Every number theater and what movie we saw in it. Everyone he ever meets birthday but he couldn't give you the directions to our house from school to get him home.
I have a kiddo that can tell you his father is a lawyer and works in an office but he has no idea really what that means.
I have a kiddo who loves being around other kiddos but as soon as he is he completely ignores them. Yet when I tell him it's time for us to leave, will meltdown if I didn't give him enough time to prepare for leaving the very kiddos he is busy ignoring.
I have a kiddo that has brought me to my knees crying in frustration countless times. I have a kiddo who has made me so happy that my heart could burst.
I have a kiddo who couldn't say his own name till he was five years old but at eight years old walked on stage at a holiday concert and in front of a packed house of hundreds introduce the next song that they would sing.
I have a kiddo who is so set in his nighttime routine that he cannot skip a single part of it, despite falling asleep during it most nights. If we try to skip parts, meltdown city.
I have a kiddo that still has trouble balancing or hopping on one foot but he can whiz around the neighborhood on a scooter or bike with no problem.
I have a kiddo who will jump into any pool but needs prompting to remember that the water from the shower won't hurt.
I have a kiddo that can sing along to James Taylor's "Sweet Baby James" word for word but still has trouble speaking in full sentences and using the correct pronouns.
I have a kiddo that I love and that kiddo has autism. His autism. Kiddo autism and that's an autism I am still learning about each day.
Does this list prove it enough for you? Well then, if not, feel free to pick him up for a side of fries. I'm sure he'll be happy to prove his autism to you.
Friday, January 10, 2014
Breaking up is hard to do.
"Oh my god. I'm rambling here. I feel like I'm dumping you. It's just that we need to take a break." I said.
"Breaking up is hard to do." she replies. She tries to sound positive but I can tell, she's upset too.
A conversation I had recently that made me so nervous my palms got sweaty. I'm glad it was over the phone so she didn't have to see me squirm and I didn't have to see the look on her face but her tone of voice spoke a thousand words to me. It was a long time coming and all the fingers were pointing that this is the direction our relationship would take. Part of me was trying to bargain with myself. How could I make this work? Eventually I had to get over the denial and accept the fact that we were ending private Occupational Therapy services for my son.
What? You thought this was going to be a much steamier post didn't ya? Get your mind out of the gutter. My mom reads this. (Hi Mom!)
It is a little strange to me ending any kind of therapy for my kiddo. I'm kind of what you would call a "therapy/services whore". If it was offered, we'd take it. Well within reason. (Usually financial) I never argued with a school for less. I was like that disco hit "More More More". So for as long as we could swing it and as long as we thought it was needed, the kiddo also got private speech and OT. When folks want to know why I never had another kid, well, therapy was our other kid. That stuff ain't cheap. Even with insurance. Our plan seemed to think my kiddo only needed thirty visits a year and then his autism would be all gone. Strangely enough, still autistic Blue Cross Blue Shield! Imagine that! So out of pocket is a way of life in our house. We also do music therapy which the lovely state of New Jersey won't even recognize as "real therapy". I still have to pay for it with "real money" despite that. Good times I tell ya. Good times.
About a month ago we were asked if there was anything OT wise we wanted to work on and it led to some serious thinking on our part. We really couldn't up with an obvious list like we had in the past. One where I walk in there and be like "OH MY GOD!! What can we do about this?" The kiddo is nine. Things seem to be leveling out in this area. Some things he still can't do but we're at this point where we have to pick our battles and we have managed to find ways around it. (i.e. shoe tying. Screw it. We tried. We cried. We bought slip on shoes and a lot of Lock Laces. We moved on. Everyone is much happier for it.)
I also started to see some therapy burn out on his part. He was tired. Especially by the end of the night that this appointment is on. He would hit a wall usually during the appointment itself. He would be absolutely overtired whiney Good Lord when is bedtime pass me the melatonin and a corkscrew exhausted when he got home. He's been in some sort of OT since he was 22 months. The steady progress he was making kind of just stopped. Maybe this is as good as it gets?
Cost. Yeah this played a roll in this choice and it sucks that it does but that's this life. Our rates went up. I guess you could say this was the final nail in the coffin. At what point can you justify spending so much money on a therapy that's not really doing much for your kiddo. Other than he enjoys the therapist herself and using the tire swing. I can bring him outside to our own swing. BOOM! OT in the backyard and it didn't cost me anything. Maybe I could invite her to come visit us? She might come. I got a pool.
So that's the story. She understood. Being the professional that she is, she offered to write a social story for the kiddo to explain when therapy will be stopping. She gets this will be a BIG DEAL in this house. He's read it a few times now and seems to understand the change is coming in a few weeks. She of course reassured me that if we need to come back, we can.
I hope she doesn't mind patting my back and saying "There there" when I cry on the last day. I'm going to miss her. She really did an amazing job with the kiddo.
Seriously, I got a pool Miss "S". Anytime you want. :-)
"Breaking up is hard to do." she replies. She tries to sound positive but I can tell, she's upset too.
A conversation I had recently that made me so nervous my palms got sweaty. I'm glad it was over the phone so she didn't have to see me squirm and I didn't have to see the look on her face but her tone of voice spoke a thousand words to me. It was a long time coming and all the fingers were pointing that this is the direction our relationship would take. Part of me was trying to bargain with myself. How could I make this work? Eventually I had to get over the denial and accept the fact that we were ending private Occupational Therapy services for my son.
What? You thought this was going to be a much steamier post didn't ya? Get your mind out of the gutter. My mom reads this. (Hi Mom!)
It is a little strange to me ending any kind of therapy for my kiddo. I'm kind of what you would call a "therapy/services whore". If it was offered, we'd take it. Well within reason. (Usually financial) I never argued with a school for less. I was like that disco hit "More More More". So for as long as we could swing it and as long as we thought it was needed, the kiddo also got private speech and OT. When folks want to know why I never had another kid, well, therapy was our other kid. That stuff ain't cheap. Even with insurance. Our plan seemed to think my kiddo only needed thirty visits a year and then his autism would be all gone. Strangely enough, still autistic Blue Cross Blue Shield! Imagine that! So out of pocket is a way of life in our house. We also do music therapy which the lovely state of New Jersey won't even recognize as "real therapy". I still have to pay for it with "real money" despite that. Good times I tell ya. Good times.
About a month ago we were asked if there was anything OT wise we wanted to work on and it led to some serious thinking on our part. We really couldn't up with an obvious list like we had in the past. One where I walk in there and be like "OH MY GOD!! What can we do about this?" The kiddo is nine. Things seem to be leveling out in this area. Some things he still can't do but we're at this point where we have to pick our battles and we have managed to find ways around it. (i.e. shoe tying. Screw it. We tried. We cried. We bought slip on shoes and a lot of Lock Laces. We moved on. Everyone is much happier for it.)
I also started to see some therapy burn out on his part. He was tired. Especially by the end of the night that this appointment is on. He would hit a wall usually during the appointment itself. He would be absolutely overtired whiney Good Lord when is bedtime pass me the melatonin and a corkscrew exhausted when he got home. He's been in some sort of OT since he was 22 months. The steady progress he was making kind of just stopped. Maybe this is as good as it gets?
Cost. Yeah this played a roll in this choice and it sucks that it does but that's this life. Our rates went up. I guess you could say this was the final nail in the coffin. At what point can you justify spending so much money on a therapy that's not really doing much for your kiddo. Other than he enjoys the therapist herself and using the tire swing. I can bring him outside to our own swing. BOOM! OT in the backyard and it didn't cost me anything. Maybe I could invite her to come visit us? She might come. I got a pool.
So that's the story. She understood. Being the professional that she is, she offered to write a social story for the kiddo to explain when therapy will be stopping. She gets this will be a BIG DEAL in this house. He's read it a few times now and seems to understand the change is coming in a few weeks. She of course reassured me that if we need to come back, we can.
I hope she doesn't mind patting my back and saying "There there" when I cry on the last day. I'm going to miss her. She really did an amazing job with the kiddo.
Seriously, I got a pool Miss "S". Anytime you want. :-)
Saturday, January 4, 2014
First this. Then that.
If you live in an Autism house, the title of this post is your life. If you are new to Club Spectrum and wonder what this means, adopt this as your mantra. It will be the cure to anxiety but also the throne in your side. For once it is spoken, it is set in stone. So you better really mean it. First you do your homework. Then you get to do play on the Wii. Oh what? The Wii is not working?? Well then, you are screwed!!!!
My kiddo lives for the schedule. Most ASD folks do. I have to admit. I too, enjoy the comfort a set routine provides. Mainly because I know if he knows what's next, than he won't be anxious which only feeds my own anxiety. If I can nip that the anxiety cycle in the bud, we're already winning. There are some days though, like this morning, I wish we could just not have one. Or be so bonded to it. You see, we had a "snow day" yesterday so the first scheduled event of school was already off the list. We had to make do with that upset and it was a very very very very and did I mention very? long day. It was also combined with bitter temps so going out to play in it wasn't really happening. Last night as I finally crawled into bed I realized "Oh Crap, it's only Friday?!" So now we have two more days of keeping him entertained/busy/out of jail. I'm like freaking out over the idea of what the hell to put in the "First this and then that" plan for the next two days.
You see, there's just no moment of me saying "Go run along and play". We're talking about a kiddo that needs play often modeled for him. Which means I get to play Legos and iPad games side by side with him. Even just putting on the electric Nanny that is the TV set isn't a given. I type this on my phone as he watches twenty two minutes of something. I think it's a kid's cartoon. It's loud and has lots of neon colors. It's either "Adventure Time" or a rave. I'm not sure. But my point is, I have to have one eye on him. There's no telling what he will get into otherwise. One time he walked into the room with my husband's electric shaver in one hand and calling for the dog to come get a hair cut. I suppose I should be happy that he's made enough sensory progress to not only tolerate a hair cut but want to give one as well. Guess we're getting our money's worth on that OT.
Through time and maturity, we have managed to get to that point where we can add a few things to an existing schedule. He's been pretty cool about that lately and I can't tell you how awesome that is. A level of freedom I almost at times don't know what to do with. It's like getting an extra hour of "yard time". Once it's mentioned though, there is no going back. Not unless I want to just schedule in a meltdown, cause they're always a hoot. My husband and I are always having to talk in code or other languages about events. Can't spell them anymore. He knows so Yay for his teacher for doing a great job. Oh and now he's taking Spanish so we might have to switch to Klingon and Vulcan soon. Better brush up. Husband is a Trekkie so he'll be okay.
First Mommy wants a break and a nap and a glass of wine and a chance to pee alone. Then Mommy wants to go to her happy place in her head and pretend to be twenty three again living in her tiny little studio apartment where she wanted it to be like Mary Tyler Moore but it was really like Rhoda Morgenstern's. I want to look at a weekend with no plans. Where anything was possible. I want to get up only when I am finished sleeping. I want to come and go as I please. If it's rotten weather out, stay in. I want to wander in a store with no set purpose other than to wander in it. I want to not worry that I don't have enough of the set foods a certain someone eats to get me through a snow storm.
First Mommy will have her meltdown in her head. Then Mommy will pull herself together, suck it up and make the damn schedule. Pardon me while I go preheat the oven to make some more fries.
My kiddo lives for the schedule. Most ASD folks do. I have to admit. I too, enjoy the comfort a set routine provides. Mainly because I know if he knows what's next, than he won't be anxious which only feeds my own anxiety. If I can nip that the anxiety cycle in the bud, we're already winning. There are some days though, like this morning, I wish we could just not have one. Or be so bonded to it. You see, we had a "snow day" yesterday so the first scheduled event of school was already off the list. We had to make do with that upset and it was a very very very very and did I mention very? long day. It was also combined with bitter temps so going out to play in it wasn't really happening. Last night as I finally crawled into bed I realized "Oh Crap, it's only Friday?!" So now we have two more days of keeping him entertained/busy/out of jail. I'm like freaking out over the idea of what the hell to put in the "First this and then that" plan for the next two days.
You see, there's just no moment of me saying "Go run along and play". We're talking about a kiddo that needs play often modeled for him. Which means I get to play Legos and iPad games side by side with him. Even just putting on the electric Nanny that is the TV set isn't a given. I type this on my phone as he watches twenty two minutes of something. I think it's a kid's cartoon. It's loud and has lots of neon colors. It's either "Adventure Time" or a rave. I'm not sure. But my point is, I have to have one eye on him. There's no telling what he will get into otherwise. One time he walked into the room with my husband's electric shaver in one hand and calling for the dog to come get a hair cut. I suppose I should be happy that he's made enough sensory progress to not only tolerate a hair cut but want to give one as well. Guess we're getting our money's worth on that OT.
Through time and maturity, we have managed to get to that point where we can add a few things to an existing schedule. He's been pretty cool about that lately and I can't tell you how awesome that is. A level of freedom I almost at times don't know what to do with. It's like getting an extra hour of "yard time". Once it's mentioned though, there is no going back. Not unless I want to just schedule in a meltdown, cause they're always a hoot. My husband and I are always having to talk in code or other languages about events. Can't spell them anymore. He knows so Yay for his teacher for doing a great job. Oh and now he's taking Spanish so we might have to switch to Klingon and Vulcan soon. Better brush up. Husband is a Trekkie so he'll be okay.
First Mommy wants a break and a nap and a glass of wine and a chance to pee alone. Then Mommy wants to go to her happy place in her head and pretend to be twenty three again living in her tiny little studio apartment where she wanted it to be like Mary Tyler Moore but it was really like Rhoda Morgenstern's. I want to look at a weekend with no plans. Where anything was possible. I want to get up only when I am finished sleeping. I want to come and go as I please. If it's rotten weather out, stay in. I want to wander in a store with no set purpose other than to wander in it. I want to not worry that I don't have enough of the set foods a certain someone eats to get me through a snow storm.
First Mommy will have her meltdown in her head. Then Mommy will pull herself together, suck it up and make the damn schedule. Pardon me while I go preheat the oven to make some more fries.
Thursday, December 26, 2013
Things I no longer wish to hear.
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! ;-)
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! ;-)
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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