You notice your child isn't quite hitting all the milestones you know they should. Milestones that don't seem like a super big deal. So he's not pointing yet, big deal. He's a late crawler and walker. "He's a boy" they say. "Boys always develop slower than girls." So you wait. And wait. And wait. Your gut is telling you, no screaming at you that SOMETHING is wrong. But "they" tell you you're being paranoid. So you wait some more.
Then the time comes when you just can't wait any longer. Something is very wrong with your precious baby. You want answers. You NEED answers. Why is he crying NON-STOP? Why won't he take just any bottle or cup? It HAS to be that one. Why won't he sleep ANYWHERE except his own bed? Why does he sit in the corner spinning the wheels on a car, while all the other children play? It's so frustrating! Most of all, it's so HEARTBREAKING!!!
So you seek those answers. Your pediatrician tells you "he's a boy, they develop later than girls". But he sees the concern on your face and the shaking in your voice. He can see that you're at your limit. So he refers you to the states early intervention program. (EI).
EI comes out to evaluate him. They say he lacks severely in most skills. They notice he doesn't talk. Not only doesn't he talk, but he doesn't make ANY sounds.
Except crying.
No babbling, no Mama or Dada. Nothing. So they start him off with a few therapies. He gets speech therapy (SLP), occupational therapy (OT) and a developmental specialist instruction (DSI). Each of them are one hour a week.
After a while, we don't see much progress. Just about the only words that has come out of speech is "moo" and "no". Don't get me wrong, we celebrated like crazy when we heard these words. But when more didn't come and behaviors kept getting worse, we were recommended to a developmental pediatrician.
AUTISM.
That dreaded word. A word that changes lives FOREVER. A word we've heard 4 times now.
Four.
A word you "think" you know. But what we didn't know, was that we DIDN'T know!!!
A word that would be as common in our house, as a toddler who says "no" or a child who says "why?"
Our lives were about to change. Boy, we did not anticipate the world we were now being thrust into.
It's not a bad world. It's just very very different. It's a world where you are allowed to "grieve" for the life and child you thought you'd have. Not that you love your child any less (quite the opposite, actually). But a life you had planned. A life that wasn't as unknown, or scary. Now all that lay before us was a daunting life, to say the least.
Then we did what ANY parent would do.
We grieved.
BUT, then we got to work!
More phone calls, more therapies, more Dr appointments, behavioral interventions, diets, supplements, research, research and more research. Google became our best friend and our worst enemy. Trying anything and everything we could to make their lives the best and most productive as possible. We did anything any parent would do.
We moved heaven and earth.
As any parent would...
To be continued....
-B
Autism seems like a very difficult diagnosis. As you point out, in a way you grieve the "simple" life you had envisioned for your child (and yourself as a parent). I'm sure you'll discover great ways to grow as a family and help your autistic child. I read a recent article about gardening and autistic children. Here's a link: http://www.proflowers.com/blog/horticulture-therapy-flowers-and-plants-help-autistic-children
ReplyDeleteGood luck! I can't wait to see how your story progresses.
Thanks Nicole for that link! I bet it would be very therapeutic for all of them as well. In the last 7 years since the first diagnosis, we've learned how our family has to function in society. Going anywhere with four autistic kids is a challenge, but we find activities we can all do.
DeleteMaggie Anders
ReplyDeleteYour son is very lucky to have parents like you that are patient and understanding, but also want answers and are willing to do the research when their intuition tells them they are not getting the right answers from the doctors. I can't wait for the continuation of your story. :D
Thanks Maggie! It was a difficult time in our lives. But as we have gone on, and 4 diagnoses later, we are pretty tough...most days. ;) Thanks for taking the time to read our story (part of it anyway)!!!
Deletevery difficult diagnosis, I'm anxious to read the remainder
ReplyDeleteI look forward to reading the rest of your story. I can't imagine the anxiety a parent must feel when trying to determine a diagnosis. I wonder, did you go through this with each child? Or, did it get any easier with your other three children (I see you have four children with Autism)?
ReplyDeleteThanks Tricia! It's funny, you'd think it would get easier, but it never really was. It was relief to FINALLY know what was going on, but still heartbreaking every time. It was different with each kiddo too, as they are all different in their own challenges. Thanks for taking the time to read it and comment!!
ReplyDeleteSince I began teaching the Autism Spectrum has grown and so many more strategies and have been introduced to help both the child's parents and their educators. There are still some that don't quite get. My nephew is a very high functioning autistic child and they have made huge gains with him. I can't imagine the heartache you go through when you first hear the diagnosis but with your determination I am betting big strides will be made.
ReplyDeleteEducation is key. The more you know about what your child is going through, the more you can help him. I have known autistic children that needed a lot of help and autistic children that were very smart and just needed the right person to work with them doing the right things. I have wanted to work with families of Autistic children as I am studying to be a mental health therapist.
ReplyDeleteI'm excited to keep up with your story. Thanks for being willing to share your family story!
ReplyDelete