Comments on: How do you define your child’s disorder?

By: Trish

Trish — Sat, 05 Dec 2009 01:58:04 +0000

I like your explanation a lot – it definitely hits the main points. I know the Autism Society of America has small cards that you can get to hand out to people with a brief description of what autism is and ways to interact with those who have it.

I’ve seen the “bug off” cards Azaera mentioned as well, but I’m not cool enough to do that – I would feel like I was telling the other person off. The ASA cards are more objective and calmer.

By: Azaera

Azaera — Fri, 04 Dec 2009 23:47:25 +0000

I find myself explaining Septo-Optic Dysplasia a lot. And I tend to go into too much detail and use too many medical words. I always forget that just because I understand it in the same terms as his specialists doesn’t mean everyone else will. When people ask me about him or if I decide to tell them about his special needs I usually start with the “he’s legally blind” bit and explain he can see a little bit, but only about 2 feet away and that no it isn’t treatable. I always get questions about that, “Can’t they just do laser surgery?” “Can’t he get glasses?” etc etc on and on. Then I move onto the “he also has hypopituitarism which means he doesn’t produce hormones like we do.” It’s a long and complicated explanation I find, and I tend to have to explain it a lot, because no one has ever heard of it except his specialists. And even then most of them haven’t seen many cases. Even his endocrinologist didn’t diagnose him with it, I was the one who suggested it to him.

Oh and as for the Autism thing, I work with an Autistic child (who I just love of course) and I’ve taken workshops to learn all about Autism and they have these really cool “bugger off” cards you can hand people. Like at the store if your child is having an episode or a tantrum and people give you those stares (you know that look) you hand them this little card that says “Please don’t let my child’s behaviour disturb you, my child has an Autism Spectrum Disorder” and it goes on to briefly explain Autism and there’s a phone number and website for an Autism Association. I just thought that was kind of a neat idea.

By: Barbara

Barbara — Fri, 04 Dec 2009 22:14:57 +0000

Excellent explanation, Laura. Many will benefit from this post, even if they don’t comment.

I.love.Lucy.

From Ricky, rehabilitation is bery, bery good!

By: Marie

Marie — Fri, 04 Dec 2009 16:40:07 +0000

Great post! People just really don’t understand and as annoying as their comments seem, I think most are doing their very best to understand in their own way. I actually wrote a post last night with a short explanation of my son’s disorder. It too is complicated.

By: Amanda Daybyday

Amanda Daybyday — Fri, 04 Dec 2009 16:08:41 +0000

That’s awesome. Like a business card or something. Would be wonderful to whip it out and just say, “here”. I get so sick of explaining it all the time.

By: The Gang's All Here!

The Gang's All Here! — Fri, 04 Dec 2009 15:19:43 +0000

This is a great post. I just this week asked my daughter’s speech therapist to help us find some short, easy to digest informational pieces on how to think about children with unilateral hearing loss. I need to find a way to share it with friends and extended family members that helps them see that we aren’t “babying” her but helping her learn to cope in this big noisy world in a way that aids her connections. Thank you. Maybe I’ll write my own brochure

By: Mama

Mama — Fri, 04 Dec 2009 14:49:16 +0000

I remember sending an email out to everyone we knew when we got a diagnosis. It was a list of anything and everything on autism, to ease the comments and questions – helped a ton!

By: Stimey

Stimey — Fri, 04 Dec 2009 14:34:34 +0000

Wow. I think I should print this out and hand it out to people who ask me the question. I’m glad to hear that I’m not the only one who gets flummoxed when people ask me that question.

By: Sarah

Sarah — Fri, 04 Dec 2009 14:22:55 +0000

Great post. As soon as I read the “I thought THEY” part my stomach just churned! I like reading and learning positive response approaches like this. Otherwise I tend to lean towards being kind of snotty and totally irritated with people. Thanks!!!