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Autism & What Not To Say To Us Parents

2/27/2014

6 Comments

 
   Today's post about autism is a little different. Usually I will write about my 9 year old son who has autism, and some challenge or another he faces. But today, I wanted to give a list of things NOT to say to a parent of someone with autism (so, I guess this is about autism and the challenges others face when knowing what to say, and how it makes us parents feel).
   I also want to say that some days hearing any of these comments can be worse than other days. If I'm having a terrible day with my son, some of these comments can leave me with a lump in my throat that turns into sobbing in the nearest empty isle at the grocery store. But on better days, I can shrug some (not all) of these things off. Not all parents of kids with autism are hurt by such comments as listed below, and that's normal too. Just like all kids with autism are different, so all parents of kids with autism are different!    
Picture
Caleb looking like Elton John
What NOT to say to a parent of someone with autism (in no particular order)

  1. “I have a cure for autism I was reading about!”. There are many things out there that can really benefit a child or adult with autism. Diet, & medications for instance can help in some cases, but saying there is a “cure” is like implying autism is like a cancer that needs curing. 
  2. “That’s so retarded!…oh, no offence”. Yup, that really happened to me (read about it here)!   
  3. “My kid does that too”. I understand this is a way to empathize with me, but it just diminishes the extra stressful things we can go through with special needs kids. It's not the same. Some things are similar, but it really isn't the same. 
  4. “Could you get him to use his inside voice?” Oh man, that is his inside voice! 
  5. “My toddler just won’t shut up!” Someone said this to me when my 2 year old son hasn’t even spoken a word yet in his life. 
  6. “He really should be eating a better variety of food. It’s not that hard to make kids eat better” Most kids just don't like a certain food, but my son doesn't like certain textures, smells, even colours can set him off because of his sensitive senses. He puts something in his mouth, and will start to gag, or sometimes even cry, because it is just too much for him to handle. It's like me telling you to put a baby octopus in your mouth, and not complain about it!
  7. While pregnant with the next child after Caleb some asked, “is there a test you can do on this baby to see if it will end up like Caleb?”. If I remember correctly, my answer was something like..."um, well......wait, what!?!"   
  8. “You’re lucky you have ‘normal’ kids too, so you can see how much fun parenting can be”.  Seriously? Geez.     
  9. “What is his special skill?” What, like Rainman? Not all autistics are savants too. 
  10. “Why don’t you want to go to this (loud, sensory overloaded, busy) event?” The answer is in the question. 
  11. “Could you please take your son out, he’s being a disturbance” Because I didn’t already feel like crap about it, thanks!
  12. “Make him come and give me a hug” Sure, just as soon as I convince you to stick this fork in your eye! A lot of people with autism cannot handle little, light pressure things like a hug. It is too overwhelming to the senses. If you want to hug my Caleb, you'll need to do a deep pressure, hard as you can "squishes" (as he calls it).
  13. “Should you keep him in that stroller so much? He seems too old for it?” He sure does seem too old, and guess what? Older kids with autism can run away even FASTER than younger kids with autism. I hope you have your running shoes on, I’m about to unbuckle him for you...... 
  14. “Can’t you just make him do it”? Sure, can’t you just make a snake tap dance for you? 
  15. “You're only given what you can handle”. This is meant as a compliment, but does not come across that way (it always just sounds like a shallow, vague attempt at making a rough situation better). Also, some days, I can’t handle it, so you saying I should be able to, makes me feel like a failure! 
  16. “He just needs better discipline” Kids with autism can be brats, it’s true! But more often, they are reacting to, and struggling with the things in their environment that are confusing or troubling to them. They aren’t having a meltdown at a restaurant because because I told them “no” about something, it’s probably because your drop ceiling fluorescent lighting is humming, and flickering. 
  17. “Aren’t you worried about his future?” Gosh, no, I hadn’t even thought about if he will ever get a job, or be independent, or who will be there for him when I’m dead! Thanks for asking!!!
​   
Picture
Out on the ice
   Do you want to know a good thing to say? Either A: Nothing (yup, just don't say what you were thinking), or B: "You're doing a great job". That is a basic, life giving compliment with nothing attached! 
   Perhaps I'm being too sensitive, but truth is, my thing here is to help people become more informed about autism. So, I think putting a list of things out there that us parents don't want to hear is helpful. 
   If you have a child with autism, or special needs, what might you add to the list? 
6 Comments
Sandy
2/26/2014 11:22:58 pm

You Are doing a GREAT job!!! Your blog is clear evidence of this. I enjoy reading the Thursday posts to get a glimpse into your life's challenges and rewards.

Reply
Amy-Lyn
2/27/2014 03:13:08 am

Thanks Sandy :)

Reply
Sista Rox
2/27/2014 03:38:13 am

You are so wonderful, raising a lovely family!
Just so you know, Caleb is Jeff's favorite :)

Reply
Sarah
2/27/2014 03:51:37 am

YOU are all fantastic and DOING AWESOME with your AWESOMe FAmily!!! I love the thursday posts too.. I've learned a lot !

Reply
Sharon Vanden Enden
2/27/2014 04:24:44 am

WHAT? I won't tell Sol….

Reply
Sharon Vanden Enden
2/27/2014 04:27:02 am

I'm sure I wasn't meant to be laughing so hard, but it was so funny. True and funny.

Reply



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