Does your son have OT support at school? It might be worth having your OT write a short letter to his teachers explaining specifically the challenges he has and what they can do to help. Just simple things like letting him get up and walk around every little while or a weighted vest if he needs deep pressure, or sitting on a ball instead of a chair to give him some movement while sitting at his desk.

Does he have an IEP? That should include accomodations for sensory issues based on OT recommendations. Absolutely they should cut him some slack and recognize his effort, but they should also be doing whatever they can to accomodate his needs and help him be successful. He can do it, he’s just going to need a little extra help and support.

I think what bothers me the most is when I actually take the time to explain to someone and they roll their eyes or give me a doubtful look, like they think I’m just making excuses (he looks fine, so you must just be a bad parent). We’ve actually had people tell us they don’t “believe in” autism. Well, you can choose not to believe in gravity too, but it doesn’t change reality. People like that I just try to blow them off b/c they’re not likely to change their minds.

this post brought tears to my eyes. Thank-you for sharing.

Because my son LOOKS normal people are constantly assuming his issues are simply bad parenting or that he is just a “bad” kid.

I got my sons report card yesterday and he got the lowest letter grade possible in all the categories that had to do with effort or behaviour or appropriate responses etc. It made me feel like the school doesn’t even think my son is TRYING to behave like they want him to! Can’t they see how hard he tries??? Do they think he WANTS to be in trouble all the time? Do they think he ENJOYS feeling out of control and frustrated? Do they honestly think he is doing it just to make their life miserable?

Our occupational therapist told me to imagine tensing every single muscle in my body and to keep it tensed for 6 hours straight. THAT is how it feels to be my son at school. He expends an INSANE amount of effort and energy simply trying to sit in his chair and do as he is told. Of COURSE he is going to mess up. He simply doesn’t function the same way “normal” kids do.

Can’t we even cut him a little slack and credit him for how hard he IS trying… even though he is not very successful at it by their standards?

Anyway, the point is I SOOOO appreciate it when someone, ANYONE, understands. Thank-you.

As for public opinions, I realize that with Samantha’s CF I’ve been keeping it really private. I’ve just recently started to give her meds in public places (and I’ve been asked “can she swallow that?”) Just last night I did chest PT on Sam in front of a non-family member for the 1st time. She asked a few times, “does that hurt her?” No, it’s extending her life.

I’m learning to get bold and realize that no matter what the world around me thinks I have to do what my children need (even if Samantha decides it’s a day she doesn’t want to have this horrible disease and cries thru the whole treatment!)

You expressed both fight and flight responses. So normal, even if new for the reason of a stranger’s words.