There are 2 questions that are most frequently asked of me as a mom raising a child with autism.
The first is usually asked by those who do not have kids on the spectrum (but not always).
“Where do you think the autism came from / What caused the autism?”
And the other question is usually asked by fellow parents raising kids on the spectrum (but not always)
“How are you treating the autism?”
The first one is easy to answer. As I wrote in this entry, we believe that Cuyler’s diagnosis is a result of an aquired brain injury from his birth. He was born with the cord around his neck 4x and we are unsure how long he was without oxygen. Enough time that he was born with no vitals and needed resuscitation.
The doctor sent our information to the region who got in touch with us and a public health nurse came by. From there we were put in touch with a parent/infant program who hooked us up with an OT and a developmental consultant to follow him. Just in case.
He met his milestones, but on the later end of normal. I noticed some engagement issues (inconsistent engagement) that alarmed me when he was about 10mos old. Sean thought I was off my rocker. Between 18-24 months the gap grew so that he was “delayed”.
We tested for Fragile X (that was a fun blood test). Negative.
Two developmental peds told us they didn’t think he’d end up on the spectrum. He was too social. But just before 2.5 he was formally diagnosed with moderate/severe autism.
How’s that for being wrong, developmental peds????
Sooooo…that’s where the autism came from.
And how we treat it. Well…that’s a bit more complicated.
The easiest to explain is probably the diet – gfcf. Gluten free Casein free. No wheat no dairy. I suppose I can thank Jenny McCarthy for making this not such a wacky thing to do. We’ve been doing it longer than her though – so neener neener neeener!
As many parents are when faced with an autism diagnosis – I felt desperate to find something, anything that would help. I had read a bit about the diet, researched it and one day I got 2 separate emails from two different people with the same link about the diet. Was it a sign? What could we lose? At 2.5 he had not spoken a word. Nor had he slept through the night. And he was perpetually cranky.
The first night on the diet was his first full nights sleep. If all we ever got from the diet was a good nights sleep – he was going to stay on it forever!
Three weeks later he was saying single words. Three months later he was saying 2 word sentences. Was it the diet? Dunno but I wasn’t going to find out by taking him off and him not sleeping and being cranky. He was not tolerating the wheat and dairy therefore he was uncomfortable until we removed it from his diet. Five years ago the food available to us was very limited and quite frankly not that good. Now? It’s unbelievable what we can get for him.
As many parents are when faced with an autism diagnosis – I felt desperate to find something, anything that would help. I had read a bit about the diet, researched it and one day I got 2 separate emails from two different people with the same link about the diet. Was it a sign? What could we lose? At 2.5 he had not spoken a word. Nor had he slept through the night. And he was perpetually cranky.
The first night on the diet was his first full nights sleep. If all we ever got from the diet was a good nights sleep – he was going to stay on it forever!
Three weeks later he was saying single words. Three months later he was saying 2 word sentences. Was it the diet? Dunno but I wasn’t going to find out by taking him off and him not sleeping and being cranky. He was not tolerating the wheat and dairy therefore he was uncomfortable until we removed it from his diet. Five years ago the food available to us was very limited and quite frankly not that good. Now? It’s unbelievable what we can get for him.
We have never done ABA/IBI (applied behaviour analysis/intensive behaviour intervention). We were wait listed for that and while we waited we took a look at other options. I read this book and from that, we chose Floortime and hired an OT trained in Floortime to come to our home and work with us. It was amazing albeit a little humbling having to be SHOWN how to interact with our own child.
We did that for about a year and were met with some wonderful progress. We could join him in his world without overwhelming him and felt connected.
While we did this I was always searching for other remediations and programs that were out there. I found RDI and was intrigued. The only problem was that the consultants are few and far between and it was pricey. We found a consultant who was about 90 minutes away and her wait list was about 9 months long. Not too bad (the ABA waitlist was 3+ years). We were extremely lucky that a woman LITERALLY around the corner from us was going through certification and needed a supervision family. She heard about us and asked if we would work with her. For a reduced rate, of course as she was not fully certified. We did 2 contracts with her (2yrs) and at that point Cuyler seemed stuck. And I knew it was all sensory. He has always been hypo and hyper sensory sensitive. It was increasing.
We had spoken to a few other families who had tried and fell in love with HANDLE. We opted to try it and started 18 months ago . We immediately loved it simply by the way our practitioner dealt us. She had the utmost respect for Cuyler and connected with him right away. She seemed to just “get” him. It really was amazing.
This is where we are now.
We’ve also seen a fantastic naturopath for the past few years. And just this week I booked an appointment with an osteopath – that’s been on my “To Do” list for awhile now.
We have gone into to everything we have tried with hope and with an open mind.
So far we’ve been very happy with our choices. Cuyler is a very happy little boy who is in a mainstreamed grade 1 class and is reading at grade level, doing math just about at grade level and has made some pretty serious progress with fine motor skills. While there are always challenges with his sensory issues, we are thrilled with how far he’s come from that non verbal 2.5 year old boy:
to a funny, outgoing 7 year old boy.
As with our other 2 children, all we have ever wanted to do and all we ever will want to do is give him the very best chance at success in life. He deserves nothing less.
**I am in no way endorsing any of the above programs. I just wanted to answer some questions that are frequently asked of me. Just as autism is a spectrum – treatment and therapies vary from child to child. Where some find success, others do not and nobody should be judged on choices they make in the best interests of their children. This is a public blog and obviously I have made the decision to share our story with who ever chooses to read it. I am open and honest about everything and welcome any questions anyone might have about our jo
urney**
urney**