Sticks and stone and all that

Excellent description of your emotions - to which most of us relate. You are generous in sharing your emotions, and I'm sure you are already forgiven.

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

Identify completely. When I read about these wonderful families on this site, I feel like a Specinal Needs bystander. I can barely handle Timothy's SPD & anger issues. I don't know what I would do if he were autistic! This blog has already made me more aware and less judgmental (in case the real story isn't evident).

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!)

Sometimes it feels good to blow up. I did at Disney World because someone was b*tching that we got to go on the bus first (mind you it was in the middle of Tropical Storm Fay). I finally screamed "she has Down syndrome, autism, a heart defect and a vision problem. Is that disabled enough for you or should I chop off her legs, too?!?!?!?!" GRRRR.

I love this site. Because of the honesty shown. I am the mother of two children with Autism. the days are never easy and behaviors can be hard to explain. Thanks for your honesty about your responses. Honesty goes a long, long way.

The medical/mental/educational people *think* my 6 year old son is high-functioning Autistic or Asperger's syndrome… I have two younger children as well (not autistic).

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.

oh, and I wanted to tell Alicia above that I often feel like a bystander when I read about these special needs families too.

I think you just do the best you can and cope the only way you know. I think, if I were in your shoes I would feel exactly the same.

It probably served as good therapy at the time as sometimes the bubble bursts.
Best wishes

Thanks for sharing this, I think you handled it fine. I have longed to put people in their place many times but to do so would have required me to take my eyes off my child and briefly focus on the stranger. Given that two of my three kids are "runners," taking my eyes off of them, especially in meltdown mode, well, not an option. I've gotten pretty good at tuning people out and putting all my energy and focus into (1) trying to diffuse my upset child, (2) trying to keep the other two in sight and calm, and (3) escape plans a, b, and c. The older my twins have gotten, the less we've had to deal with meltdown issues with them (still an issue with our youngest though), but we still get looks for some of their more unusual behaviors (which seem to stand out more the older they get).

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.

@Tara - I can totally relate to that, it is so hard to explain to people how hard our kids with sensory issues are working just to tolerate being in the environment, sitting in their chair, and trying to pay attention. It's exhausting for them! If all the other kids had to put as much effort into those things, they'd be struggling too.

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.