6 Mar 2008

Somethings help, some not so much.

I've written here before no doubt, about the time around Duncan's diagnosis. When he was almost two, I thought he was just at the far end of the range for what was 'normal' in children starting to speak whereas Lady had been at the high end. I knew he was smart; he could figure stuff out, especially it it involved him eating something sweet. He was very fast to crawl and walk and he smiled at the normal age, though not as often as his sister. But he mostly ignored us, unless he wanted something. He didn't respond to his name, but he looked round if you said something like 'Thomas video.' He couldn't point to any of his body parts, he didn't seem interested in most of the silly games I'd been able to engage Lady in. I wasn't too worried, and told myself he was just developing at his own pace.

But anyway, after a few months when I couldn't really see much change in his abilities, well except his amazing money-like abilities in climbing and balancing, I was concerned and looked up the word autism on Google. This was a word that had been hovering in my mind for a while. After 10 minutes online, I knew this was it.

We started the process of doctor visits, speech therapy, assessments and services which wasn't to be honest, all that onerous. I was upset and worried about it all. I didn't know what would become of my precious and at times, baffling boy. I still don't, but I don't know what will become of the other two either.

Oh how I wish that something like the Autism Hub existed then. But it didn't and I had to work through the different emotions and reactions and options available. I could rail against the diagnosis, resolving to 'fix' my son and find the reasons why we were lumbered with this fate. Or I could opt to accept it, and resolve instead to raise my child and teach him in a way that best suits him, to find out more about autism from the real experts, people who themselves are autistic, and do a little to work against the extreme prejudice and ignorance around disability, especially autism.

But while it was all new and I wasn't sure what to do, I went to a support group for disabled children and their families. I felt a bit out of place, like most people do when they're the new person meeting a group who all seem to know each other well. The children there had various disabilities and. The mums appeared so competent and calm. One sorted her daughters feeding tube out as easily as I might have tied my child's shoe laces. Another joked that her son thought he was the son of god, given her reaction when the doctors informed her he had Down Syndrome, 'Oh Jesus!'

My child looked like he was just an ordinary two year old, albeit a naughty and destructive one whose mum had to stick very close and pull him down from the shelves more than once, and who could whip up a tantrum that left other toddlers in the dust.

I met a woman I knew from Lady's school. Her son had cerebral palsy and she was surprised to see me there. She'd not known me as the mother of a disabled child, but then, neither had I. She asked what disability my child had. While I told her, she watched Duncan for a while and then said, 'he seems very mild to me. I have a friend and her son is really autistic. He just sits around all day doing (something or other unusual but I don't remember what).' But then she brightened up and said, 'my friend's son got much worse as he got older!'
Wow, thanks missus. You really made my day there.

Well I persevered with the group, and it was one of the best things I did to help me in those early days. It's something I'd love to see here, and it's one of my secret dreams to help set up something similar in this region.

But when I think back on that woman's insensitive remark I can now smile because Duncan has developed to be this funny, talented, intriguing, exasperating, loving and clever boy.

I'd like to know from any of the parents of disabled children reading this, what was the most helpful thing to you in those early days, and what was the dumbest thing you encountered?

7 comments:

Another Autism Mom said...

Sharon, my son was diagnosed in the Summer of 2006, when, thank goodness, the Hub already existed! The day I realized my son was autistic, I went to a bookstore and bought "Engaging Autism" by Dr. Greenspan. I learnt by reading the book that sometimes autistic children improve very much, and I thought my son could be one of them. Then I happened to have a coworker whose wife is a major expert in autism. She saw my son and thought he was quite high functioning and would probably have a good prognosis. So by the time he got his official diagnosis, just short of turning 3 years old, I had already read dozens of books where autistic toddlers grew up to become fully verbal and mainstreamed... In one of the books the child, who is now a brilliant teenager, only started to talk in sentences when he was about 7 years old. So I've been hanging on to that hope. My son is somewhat verbal and has great pronunciation, but he's still hugely delayed. On the bright side, he's hyperlexic (advanced reader), very affectionate, has very few sensory issues, and is able to take turns and have playdates.

jypsy said...

my "favourite" insensitive remark came from the mother of another autistic when she realized I was pregnant - "aren't you terrified of having another autistic child?" She didn't realize that I already had one younger than Alex (an Aspie as it turned out) nor did she realize, or even understand that "no", I wasn't at all terrified.

Casdok said...

Oh gosh! There were too many to remember! And it was a long time ago now. We still get insensitive remarks, but i cope with them much better now.

Jodi said...

An insensitive friend saying: "I" could never do it! (parent a child with a disability)
sheesh! what would she do...give her child away?

Helpful and crusty old neighbor: "Ah, he'll get along just fine."

Niksmom said...

We "knew" beofer we ever got a diagnosis. In fact, we had to fight for one. The most helpful thing I've heard is "keep living your life and don't act like he's any different than other kids." LEAST helpful? "Do **they** think he'll ever be normal?"

Sharon said...

Thanks for all the stories. I think that we share much in our experiences as parents of autistic children, trying our best to get along.

There's one good phrase someone once told me, but I haven't yet had the opportunity to use it. On receiving unsolicited "advice" from a stranger, you can say, "Oh wow, I didn't know I was going to run into a world famous autism expert today, do you have a card? I'd really like to discuss these issues with you further when my hands aren't so full looking after my children, etc..."

S.L. said...

Great post. I think my "favorite" of the dumb comments I've received was:

"So, then, will she ever outgrow it?"