A is for Autism

At the end of April Tyson had his formal developmental assessment at the Glenrose.  Going into the appointment, I knew that it was very likely that Tyson would be given a diagnosis of autism and placed on the spectrum.  Based on my own experiences with him and how I feel he measures up in comparison to the rest of his classmates at school, I was sure that he would be labelled as high functioning (maybe moderate) because I feel that he is very high functioning.  I was mostly worried about having to be at the hospital all day and what I would do when he started to get bored etc.

The actual assessment day went pretty good.  After his "formal" testing he was basically allowed to play and handled lunch out and going back to the hospital like a champ.  His "formal" testing went really bad.  Other than the puzzles (which he was able to do at the level of a 7 or 8 year old), he had really no idea what the doctor was asking him to do.  Some of the picture identifications he did pretty good on, but most of the time he didn't understand what she was asking him to do.  The hardest part is sitting there and knowing you could get him to do it if you could just show him this way, or if she just said this.  That was the hardest.  Ty was also super frustrated that he wasn't allowed to play with everything in her big bag.  After his formal testing and talking with the doctors after, I kinda had this feeling - like I knew they were already going to diagnose him with autism, but I could just tell it wasn't going to be high functioning.  I took Ty for lunch and prepped myself to hear a moderately autistic diagnosis. I didn't feel it could be anything else than that.  After lunch we went back to the hospital to receive our diagnosis.

Ty was diagnosed with "Autism Spectrum Disorder accompanied by language and intellectual impairments, requiring very substantial support (severe) for social communication and very substantial support (severe) for restricted repetitive behaviors."  I don't even know that I heard her completely the first time.  Basically, he was diagnosed at the very bottom - the worst score you can get.  I half listened to her as she talked about support services and next steps.  I couldn't understand how Ty, who uses words (even if its just one word) to ask for what he wants could be lumped in the same category as the kids who have severe sensory issues and have to wear headphones to block sound and can only talk through the use of an ipad and don't verbalize at all.  So i asked her about it.  She told me that the scale only gives them a 1,2, or 3 rating.  For kids like that, they wish they had a 5.  This helped a lot.  Basically, it validated that he is "moderate" so to speak.  Not that it was easy to hear.  I wasn't expecting that kind of diagnosis at all.  She also explained to me that even though I know all these different ways to help him perform better and do different things - those basically further identify his severe need for 1 on 1 support.  And that is something I absolutely know.  Tyson can not function without A LOT of 1 on 1 attention.  That is why the Maier Centre has been so perfect for him, and that is why I have had anxiety about school choices and sending him to school.

On the way home from the appointment I realized that Tyson absolutely got the diagnosis that he needs, just not necessarily the one that I wanted or expected.  Its not fun to hear that your son performs for the most part at the level of a less that 2.5 year old.  His skills I guess range from 2.5-7/8 (his skills in puzzles brought his average up).  His diagnosis, while not something I like to hear, will guarantee that my son will get the support that he needs.  It basically opens all doors for me so that I can basically look at all of the options for Tyson and pick the program or programs that are the best fit for him.

Over the weekend, while Brock and I discussed the diagnosis a lot, we realized how blessed we have been We are so blessed to live in Edmonton.  Edmonton is basically the world leader of autism research.  Like, if you are going to have a kid on the spectrum, you want to live in Alberta, and Edmonton if possible.  People move here from all over the world and all over Canada to access the level of services provided in Alberta and the quality of programs offered here.  What's super interesting is that Brock and I have tried to move away - many times.  We would both love to move to the Vancouver area or even the states - but every time we have moved away from Edmonton, even to just Calgary, the door has slammed so hard in our face its not even funny.  But, when we decided we needed to just move back to Edmonton and figure it out once we got here, everything falls into place so fast and so easy. Its not an accident.  Heavenly Father has been watching out for us all this time,  We can clearly see that.  And we feel extremely blessed because of that.  Because of that Tyson is attending the best preschool program in the city (possibly province) and will continue there next year as well.  Because of that,  Ty will have access to specialized services and receive even more therapy and support. Because of that I have had my parents love, support, and help close by - which without them, Brock and I would not be able to go on a date ever.  My kids are so fortunate to have my parents in their lives and Brock and I are so grateful for all of their help and support.  Would I still love to move to the Vancouver area or Utah someday - absolutely.  But everything happens for a reason, and at this time, we are clearly meant to be right here.  We are so grateful to our Heavenly Father who has been watching over us and helping us, and protecting us.