We were eight years in on this journey with our son and my wife and I asked ourselves - Why has it been so hard to get information? Since the day our boy was born, it seems we’ve been on a never ending quest to find out what, why, how did this happen, how do we make this better? Maybe it’s because the Autism Spectrum really is a far ranging disorder and it’s impossible to say what works for one child will work for all. Maybe it’s the mystery of why Autism happens at all?
But you would think each state in this 1st world country of ours would have a step by step process or program to follow once you identified there is something not right with your child. If you have cancer, you know there are going to be potential steps involved – testing, surgery, chemo, radiation, more testing, etc… We had trouble just getting our son diagnosed as Autistic. Oh and by the way…here’s a pamphlet.
When we started on down this path, it was rough to say the least. He was born 17 weeks premature. Yes... he was only 23 weeks formed when we had him. 1 lb 5 ounces of a miracle. As you can imagine there would be many challenges in those days but God answered our prayers (plus those of many friends and family) and He used some amazing doctors and nurses to help bring home our son 137 day later.
So with the hard beginning we knew there could be physical/mental difficulties. With that in mind, the label he received from the age of 3 months and on was "developmentally delayed" and "let’s just wait and see if he will catch up". He didn’t catch up and no we didn't think it was just "delayed" after about 18 months of age.
The services we had in the beginning were great with the 0-3 year old program through Sherwood as well as the peer to peer environment within the preschool, but that was not enough. The lack of speech, the failure to play beyond a ball roll, the growth wasn't just lacking it seemed also "uneducated" in the sense he needed to be taught how to play, how to make eye contact how to do all the things we assume children pick up through the normal social interactions they see and are part of.
We had couple sessions with the UW CCHD program, once when he was 1 and again at 3. In hindsight we should have pushed harder for the Autism diagnosis when he was 3. If memory serves me, I believe one of the assistants even hinted at pursuing this but things seemed to be moving forward and we didn’t realize that after age 3, the programs he was participating would start to diminish without this diagnosis. Once you start using your insurance plan for getting services like speech and ABA therapy – you really need as much ammunition from the doctors as you can get. As bad as it sounds, the worse the diagnosis, the more help you can get. Don’t be afraid of the clinical labels or stigmas associated with a diagnosis, worry about not getting the help needed for your amazing child.
Much of the content of this website is basically the lessons learned on our journey from then to now. We’ve conquered some major obstacles like sensory issues and food intolerances. We are still fighting the fight on items like speech. There have been soooooo many people that have talked with us about their Autistic son, daughter, grandson, granddaughter, etc… and asking questions on “how did you do that?” or “where do I go for this?”. It just seemed like a good idea to try and put something together that everyone could see. The tribal knowledge doesn’t get passed as much when it’s hard to access that knowledge. Our hope is that you can glean a few things from our lessons, you can pass along some lessons of your own by participating in the chat community, and we can manage to walk down this sometimes difficult, dark, and lonely road called Autism. We may not have a cure… but we can make things better. Hope always.