It's said so quickly to me. It's meant to calm my nerves but it just manages to do the opposite. I know the person saying it means well but to me it's a dismissive sentence. It makes me question my own thoughts and invalidates my feelings and experiences.
Here's the thing. It doesn't makes the autism go away. It does not give a solution to what a parent clearly sees as a problem. My child is struggling. I want to help him. Please don't tell me not to worry about it. That I should just shake it off or be glad it seems that my kid is doing something "normal". As if I should be congratulated that he is doing something typical.
Yes, he does do a lot of typical things that most ten year old boys enjoy doing. Riding his bike all over. Belly flopping into our pool daily and swimming so long each day I'm convinced he's grown gills. Eating his body weight in french fries and hot dogs. Singing along to songs his likes on the radio. All activities that for a few moments I can sigh and relax a bit. Happy he is happy.
But that above mentioned love of hot dogs only came after hours and hours of feeding therapy. No, he's not just a "picky eater". He would have, in fact, chosen not to eat at all. He wouldn't of just broken down and finally eaten when he was hungry.
That bike riding came after a consult with an OT and PT. The singing? So many sessions with a music therapist that insurance will not cover because they do not recognize it as necessary. Even swimming only came after calling around to several different places to track down the one swim instructor that actually had experience with special needs kids. Even then that was dicey as she didn't realize the havoc she caused when she suddenly canceled sessions twice with little warning.
Do you have to sedate your child just to get his teeth cleaned by a dentist because he's now too big to be held down by three adults to get an exam? Are you in an absolute panic every morning as you put your kid on the bus because you just don't know how the day will go and when the next phone call from the school will come? Do you have no play dates for your kid because although his typical classmates are kind to him, they do not call looking for him?
Do you sometimes post their milestones on social media and wonder "Will the folks I'm friends with even get why this is a big deal?" Then you cry when you see that they do.
I know you want me not to worry. I know you want me to realize that he isn't as different as any other kid his age. I know he is "Different, no less". Here's the thing. I've said the exact say sentence to other moms about their neurotypical kids. Joyfully chiming in that "Hey, my kid does that too!". I've seen a few of them do double takes when I have said it. I've seen a few sudden flashes of panic across their faces that I just said a behavior is very much like something my autistic kiddo has done.
So if the phrase doesn't always sit well with them, why should it sit well with me? If you want me to relax about it, then they have to take a chill pill about it too. Unless this is about your kid keeping all the potato farmers in Idaho financially sound, because my kiddo does that too. :-)
I just had this done on facebook. Posted the sweetest picture of my daughter holding my hands trying to go to sleep waaay too late at night as she scripted "if we hold hands we can get through anything" knowing those werent her words but someoen else but that the meaning behind them was the same just made my heart melt. So I posted it and then someone posted its not autism that makes her quote movies all kids do that. I ignoredthe comment and shared a fb post along the lines of your blog here just a bit more abrupt about it. She saw the post and appologized and then I explained why it hurt. If my daughter memorized these movies out if fun or love for the movie I would do a happy dance but instead this is her only way to show her feeling and communicate a lot of the time. So not it isnt the same! Sorry that was a long rambling comment, but thank you for this post and all others!
ReplyDeleteMy son talks non-stop and 90% of it is from a movie, book, or YouTube video. My husband still hasn't figured out where, "Get out of my way, you blue puff balls," came from. You can imagine the looks we got at the zoo. If ALL kids do that, then why did we get so many dirty looks from parents. What hurts the most, is when the people who say it's just a kid thing are the same people who are giving the dirty looks.
DeleteDoes he like Thomas? There's an episode of Thomas where a train named Splatter refers to Thomas as a blue puff ball when he zooms past him.
DeleteYeah it took two year of seeing a feeding specialist, once a week, three hours away at 250 bucks a pop to get my kid to eat. He scipts constantly, notihing he says is original speech hes just gotten creative a out how he strings things together. Ect ect.
ReplyDeleteYep. To you and to Anonymous above. And the times when mine isn't scripting are so noticeable and memorable to me. It's like suddenly she's not "stuck" for a few moments and she looks right at me and there's a calm and meaningful back and forth conversation that just leaves me in awe and wondering who is this kid...then she yells "Squirrel!" and takes off again and it's over. Just like that.
DeleteBoy, can I relate! Unfortunately in my case they were my own parents telling me these things when I thought I was different (I wasn't diagnosed with autism till age 20).
ReplyDeleteThis is just ... yes!
ReplyDeleteThis is a very well-written piece. And it's true for ALL special needs kids, not just kids with autism. Please, I'm not being dismissive in any way. I understand the frustration reflected here all too well. I have a special needs child with both physical AND cognitive disabilities. When I tell family about milestones as she reaches them, they respond by telling me how much sooner their "normal" child reached that milestone and that it isn't that big a deal. I've dealt with family calling her stupid and retarded. As much as strangers can be cruel or dismissive, families are sometimes just as bad.
ReplyDeleteFamily acting like that is so much worse. They should have your back. I'm so sorry they're so dismissive of your child's accomplishments.
DeleteYES YES YES! I hate that dismissive (so. true.) statement when I am trying to explain Autism to someone. ARGH! Thank you for this great post!
ReplyDeleteYou just described my life with my youngest son. Freaky similar. And I'm so thrilled to not be the only one who hates that line. His teacher said it all last year. Sigh.
ReplyDeleteI can also relate. My son has cognitive, physical, and verbal motor planning disabilities, along with sensory difficulties. He still eats some baby food and we are still potty training at 8 years old. He doesn't get invited to play dates or parties, even though he is well accepted in the school setting. It is frustrating how little people understand, or how much they even try to understand. I've even had people disagree with me about his diagnosis - saying he has autism (he doesn't, and I'd hope with 7 years of both private and school based therapies I'd know that), or that "he's normal" (um, nope). I wish if people couldn't say something useful, they'd just say nothing.
ReplyDeleteI want you to know you're not alone. My daughter will be 7 in November and we are still potty training. We still use some baby food to supplement, particularly if she's not feeling well. The playdates don't come as often as they did, but I attribute that to our decision to homeschool and find our community there. Feeding therapy, OT, speech therapy for the dyspraxia and sensory processing disorder and psychotherapy with beginning dx of OCD/anxiety/ADHD. She doesn't have autism, either.
DeleteHer issues are hidden until they aren't.
I thank the author for writing this post.
I
DeleteLove that sentence you wrote. Her issues are hidden until they aren't. That's so true.
What has the singing lessons helped with? My girl is quite musical and sings all the time.
ReplyDeleteThere are some friends and relatives I really miss but I can't bring myself to contact again because things they often say ring in my head and I just don't want to hear it again. "But she just seems SO normal!" This one comes from a friend whose expertise on my child is along the lines of a casual observer. Then there's the cousin, "OH....but all kids do that!" When I was telling a story of something funny my kid did that has nothing to do with autism at all. It was just a funny story.
ReplyDeleteSo well written. It breaks my heart because I know that they will never stop hearing that. When they grow up if they are able to function and get a job, people will criticize them for being "Too normal" to be autistic or still continue to criticize. Either they are ""too weird/different" or they're "too normal to be Autistic" or they are told the things they struggle with are things "everyone struggles with" .When they try to share the things t, they will be told "everyone feels that way sometimes" They don't get it. I don't just struggle with food. I have severe anxiety about food. If I get invited to a restaurant I have never been to, I have to research it to make sure there is something I can eat. If not, I have to cancel because I've learned that no one tolerates my food issues. Instead I hear "You're being silly! What's wrong with trying something new?"
ReplyDeletet is actually easier to lie and have "something else to do" instead of explain that I didn't see anything on the menu I could eat. When I have tried being honest, When I have tried to try something new, I am so anxious and so nervous I can't enjoy the visit with my friend or even pay attention to the conversation because I'm thinking about what they are putting in/on my food.
I hope that by the time your fella grows up, we have changed this. I hope that we can stop asking for Autism AWARENESS and start asking for Autism ACCEPTANCE.
"Get out of my way, you blue puffballs" is from Thomas The Train - Diesel 10 says it. My son is currently obsessed with it... :)
ReplyDeleteWe are obsessed with diesel 10 too. Can't believe we are not alone. I kinda consider this refreshing! 😂
DeleteMy mother never, ever understood why I wouldn't go to the "girls' night out" events with her friend & friend's daughters. She so wanted her daughter (me) to be there, but all they every talked about was their typically-developing kids, & there was nothing I could say that they would have understood about my kid. I learned early on that these situations were, at best, uncomfortable & at worst, toxic. Mom never did get it. For me, avoiding these situations was choosing sanity :)
ReplyDeleteSeriously, my sister and I just about stopped talking to each other because she was put out that I got sick of her saying "All kids do that!" I finally had to tell her that when she says things like that, I hear "What are you complaining about? You don't have it any harder than us!" She said "If that's how you take it, that's your problem!" Yeah, that's the LEAST of my problems.
ReplyDeleteAnother fave - Wait til he's a teenager, he'll eat you out of house and home. Still waiting for that to happen...
It was very hard hearing my mom and other family members argue about these things about me as a child. I felt bad and guilty as if I were causing these arguments. I felt as though my family members didn't like me for a very long time. I was in my late twenties and I still had conversations with my mom before family gatherings, pleading with her, because I didn't want to go because I felt as though everyone was judging me. I'm 36 now. I finally let it all go. I realized that it's their problem, not mine, if they wish to judge. My final thoughts in closing, please be mindful of what is said in front of children. They take in more than you will ever know. And it stays with them forever.
ReplyDeleteOk mama fry, I consider myself all knowing as far as the thepapy is concerned. After all, I've been doing this 2 whole years. We have tried many different therapies. Some great, some I tried to cancel the check before it went through the bank....anyway, tell me about music therapy. My son is 4 and a half. He may be too young? Love the post and love you! In a non stalking way. Thanks!
ReplyDelete