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?
"Sometimes it's not Autism"....absolutely 100% agree with you!!!
ReplyDeletePersonally I don't think we can ever turn off the autism filter...it's just a matter of changing it every now and then to see clearer. Wow...that almost sounded deep. Almost. ;P
he right my parent were like that with me my mom new what was being a litte stinker an what was disabilitys stuff an still helipng me no who was i9n charge .it drive me nuts when parents make every litte thing there child dose is becuse they have autism all it dose is make them worse .an dose nothing to prepard them for the real world out side your home an therhy no one else is going to give a rats behind what u have so you beter learn how to deal
DeleteThank You for your insight. I was questioning if I was being to hard on my daughter, trying to prepare her for her independance. I love her so much, yet I know she will be like all children, she will want to fly when it is her time. I just pray I will have given her the right tools to keep her soaring high. I am already so proud of her. She will make a great mom, I can already see that in her future. That is one of her goals. College and marriage is others and I can see them all, for her. There is no limits for our kiddos! Our children with Autism are awesome!
DeleteIt's about slam dunking. It's allllll about slam dunking.
ReplyDeleteLittle Bird is my only (we can't yet count the thing in my belly kicking me as I type this), so she's all I've ever known as a parent. It's been tough to know what is Autism and what is just... kid. I tend to believe most things are ASD related because that's the pair of glasses I've been given. But, so often, she's being the snotty sassy 8 1.2 year old kid that she just.... is. I'm learning.
ReplyDeleteYes why the jumping thing? Questiones that will never be answered.
ReplyDeleteOMG, YES! There are times I look at Nik and think...this is totally "typical" 9-10 year old stuff. And then I laugh. Right before I cry. ;-) (I kid! I kid!) It's like a doctor once told me,
ReplyDeleteSeriously, this is perfect. And, yes the jumping up on doorways, signs suspended from the ceiling etc ... its a must for all boys, it dont get it either.
ReplyDeleteAbsolutely love this!! You just put into words what i was struggling to say just last night. AWESOME!
ReplyDeleteThis is so awesome!!! Love it!!!
ReplyDeleteMy 12 year old son is asking himself the same questions now. "Am I doing this because of autism? Or am I doing it because I'm a 12 yr old boy and that's what typical 12 yr old boys do?" I literally have this conversation with him multiple times a week... about Harry Potter, Legos, repeating his favorite parts in a movie, Percy Jackson, and humming incessantly while he does his homework. While there are DEFINITELY times when it's autism-related, there are also a bunch of just regular kid quirks too. Nobody ever say NT kids weren't quirky too! My other 3 kids are a prime example! :)
ReplyDeleteTotally get this. We're in the middle of decide what is just teenage hormones/attitude and what is autism. Is she stopping around because she's a teenager or is it an autism thing?
ReplyDeleteJUST had this conversation about 30 minutes ago with our BSC... so funny! It was about our daughter ignoring kids or averting some social situations. Maybe its not because of autism, maybe she's getting old enough to decide there just are some people she doesn't like to play with or hang out with! It is hard to tell this stuff apart sometimes and I tend to keep the autism filter on all the time too! Glad I'm not alone!
ReplyDeleteOh I get that....I so get the food thing....I was thinking that everything was the autism....but all of a sudden there was a lightbulb moment for me....certain things, even though they seemed different to me, were actually connected by what they contained, so hang on it makes sense if she doesn't actually like that food, then there is a real link with the others and its quite normal to not like them all. My daughter doesn't like certain acids in food....which gives the link with oranges and tomatoes (and other foods) and they actually upset her stomach....took a loooong time to work that out though....then all of a sudden I clicked, my sister doesn't eat the same foods, I recalled her telling me certain acids make her feel ill....tada....it's not an autism food thing, its a genetic food thing, and I'd been trying to get her to eat things that were actually making her feel physically ill....duh...
ReplyDeleteWow my son is very similar.... He loves taking his IPAD into his room and listening to music and watching videos on YouTube.. Sometimes his music selection is also not age appropriate.. He loves Jay Z Usher and Rihanna.. Some of those lyrics I probably shouldn't be letting him listen to.. Your Blog always hit home.. Thanks for Sharing!
ReplyDeleteOur 15 year old daughter still will not eat sandwiches.
ReplyDeleteExcept Subway meatball marinara sandwiches, she'll mow through her's, your's and the guy at the next table if he spends too much time trying to flirt with the girl behind the counter.
Feel the same, there are moment my baby acts so normal, he wants more independence ,as they get older things get better, he is trying new foods on his own and LOVES you tube , he gets rewarded with iTunes on very special occasions , so he has a great selection of music he has all top songs but also a lot of Elvis Janice Joplin and Ozzy lol!!
ReplyDeleteI understand completely. My 14 year old with Aspergars is doing the music thing, is eating 1/2 of everything or nothing at all. What is "her" and what is the result of the disability is hard to decipher. I accept it all when its harmless, and try to teach or change when its entering harmful. You sound like your doing a great job, because recognition is the hardest part.
ReplyDeleteChris Presti
Ellens Mom
Waretown NJ
I can so relate to this post and the comments. I'm an autistic adult, and when I ws first diagnosed in my erly twenties, I saw autism everywhere. I was totally obsessed with all my behaviors being autistic. My parents used this as a basis for their denial. Now I'm slowly learning that I'm much more t han autistic and disabled in various other ways.
ReplyDeleteI love the parallels in our lives as I read your stories and quippy posts on FB. I was just asking myself a great many of those very same questions about on of my 7 year old twins. He claps and whistles...but he claps and whistles a number of times...does it mean one thing when he whistles or claps just once? What about four in rapid succession? Can that enlighten me to his mood or explain something that may help me figure out yet another small victory in working with him? Is it comforting to him? Or does he just really, really like making these sounds because, well, he IS a 7 year old noisy, stinky boy? I think for me, I sometimes get stuck in the Alphabetsoupisms that engulf us as we do our damndest as advocates to our children in the face of specialists, teachers, shortsighted(if well intentioned) strangers, family and friends, and the long list of others who touch our lives and experience small slices of our autism and other disorders as we go about our daily lives...And it is taking a lot to let go of the Alphabetsoupist I was becoming in trying to wrangle so much for so many in our home. Now we are working on learning to each live with the cacaphony as best we all can in light of our own quirks and tics and intolerances.
ReplyDeleteTeri Scott
Mom to R, K, A, and L
Feltwell, UK
Oh my, you are so right! LOL Having my two oldest on the spectrum, I had nothing to compare their behavior with. I had to rely on others to tell me that this was normal or that was normal. Watching my youngest NT son grow, it dawned on me that everyone else was right. The older he got, the more I relaxed.
ReplyDeleteSometimes when I read all the various things/advice these days, I feel my 24 year old grandson and us as a family, were better off as he grew cos we did not have all the info on how why and when about autism. I knew when he was winding his mum (my daughter)up as he used to give me sly grin when she was not looking..:-0 and I would say to her, "He's playing with you" She had a hard time accepting this and thought I was just making light of his condition.
ReplyDeleteYep. Especially when they hit their teens. I mean, then it's neurotypical to be uncommunicative, physically hyper, uncooperative...
ReplyDelete