The Space Between
March 24, 2011 § 1 Comment
And while he babbles CONSTANTLY, he is not talking.
He does throw out the occasional word, and is getting fairly consistent with “up.” He has an excellent sense of humour and love to laugh. He loves music, and is a whirling dervish who never sits still. He adores books and if he gets within 5 feet of one you’d better be prepared to read it to him. He eats and sleeps like a champ, and he loves to give hugs. He loves the water.
And he doesn’t talk.
We have been working on this for the past year.
We have done every single thing that every single professional has told us to do and MORE, and he doesn’t talk. We’ve had his hearing tested. We’ve joined Mother Goose, You Make the Difference, and a playgroup for children in the Infant Development Program. I am on the waitlist for Nobody’s Perfect. I have taken seminars that promise to teach me the things will have Nemo talking in mere weeks, only to find that I have been already doing those same things for the past year. I’ve tried Baby Sign Language. We are on the waiting list for a Speech Therapist. Most of my free time is spent reading books on early language development.
I am told on a regular basis that I am doing everything right.
And he doesn’t talk.
About a month ago, our consultant dropped the “A” bomb: autism. To be honest, I was almost relieved because I felt like everyone was tiptoeing around it for the past year. Nemo had been dem0nstrating more and more “sensory-seeking” activities, like fixating on strings, lights or blades of grass. Each time I googled it, I’d gotten smacked in the face with AUTISM WARNING SIGN!
But here’s the thing: Nemo doesn’t act autistic.
What do I mean by that? Well, he has eye-contact skills that would make a Toastmaster jealous. He smiles and giggles and laughs and fully engages with everyone around him.
Every “expert” looks at him and scratches their head, and sends me to someone else.
Well-meaning friends and family members assure us he’s fine, and remind us Einstein didn’t talk until he was 3.
Then one morning about three weeks ago, Nemo had a seizure. He’d had a stomach bug earlier in the week, and now I had it too. I called 911, and we were rushed to Eagle Ridge Hospital. While they were running blood tests (which had meant holding a very scared, very strong toddler down multiple times to take blood), Nemo had 4 more seizures, including one while he was sleeping. They gave him an anti-seizure medication and he was transferred to BC Children’s Hospital. Husband went with him, as the doctors decided I was too sick to hang around Children’s. I would have to wait until I recovered until I could see either of them.
Nemo was placed in enteric isolation and they ran a battery of tests, all which came back negative. After a weekend in the hospital, all they could say that it was “likely” a complication of the flu, and said they could have been atypical febrile seizures.
Atypical because he had no fever, and febrile seizures are convulsions brought on by a fever in infants or small children. Am I the only who doesn’t get this?
But the Neurologist was very interested in a possible link to his developmental delays. But nothing for certain.
Again, nothing for certain. Always, it seems, nothing for certain.
So how does all of this make me feel?
Here’s me in a nutshell: I find new ways of doing things, I organize things, and I try to make things make sense. I take complicated problems and distil them into something simpler. I summarize, I simplify. I believe that there is a solution to every single problem and that if you look hard enough you will find it, and you can fix it.
Is Nemo broken? No. He is wonderfully and uniquely Nemo and I would not change a single thing about him. But I know that there is something that isn’t working the way it is supposed to, and no matter what I do I am not fixing it.
So yeah, sometimes I feel like shit. Like there is something out there that explains everything, but I am not looking hard enough. Even though I know I have run out of places to look.
But then I look at Nemo and he is just so GREAT.
So, I must be doing something right, right??
So I am trying to get to a place where I can be at peace with not having all the answers, where I can stop blaming myself, where I can accept that maybe this has nothing to do with me doing something WRONG.
It’s a work in progress.