Fool Me Once

Fool me once, shame on you, fool me twice, shame on me.

 

You look a lot harder the second time. I actually feel bad for Trystan because from the moment he was born, we were looking. With every little movement I was questioning whether he was stimming or was he just moving. I think it did take a bit of the joy of parenting from both me and Amy, because we were so focused on the negative. We both wanted so badly for the statistics to be wrong, so we figured if we looked hard enough then we’d make them right. 

 

It was much quicker the second time around; I was not going to miss it this time.

 

To be truthful, I am both proud and sad that Trystan was the youngest child to be diagnosed with autism in the province at that time. If you are questioning my use of the word proud, hear me out.

 

 With autism, the worst thing you can do is delay or deny. 

 

I learned this the first time around, so we were focused on early intervention the second time. Although the gut punch was not as hard when we realized Trystan was “different” as well, it was still sad. I remember feeling so guilty for Amy more than myself. 

 

With my personality, I had already come to terms and was planning on how we were going to survive. With her, she went through the same hope-fading feelings she did with Ashton. It was gut-wrenching to watch my wife suffer like that.

 

Trystan is not Ashton. 

 

My wife and I have two children, but in reality, we each have one of our own. Ashton looks like me, is introverted and likes to be alone like me, he has “bipolar like” episodes like me. In layman’s terms, if he was verbal, we could be the same person on many fronts. Meanwhile, Trystan is my wife. From the curly long locks to the massive ADHD and off-the-wall attitude, they are one and the same. Trystan can’t stand still, and neither can Amy.

 

Back to the diagnosis. 

 

Through some Autism Services providers, we had already begun doing therapies with Ashton when Trystan was diagnosed. Amy, having experience in the public school system, also pushed very hard once we knew Trystan was affected to get the diagnosis. The earlier you get that piece of paper, the quicker you can access certain therapies for your children. This is where many families struggle. 

 

My wife and I have watched other families live in denial in many instances. Whether their children were not talking correctly, or had certain mannerisms, or just did some things that we recognized. You never want to admit something is wrong with your children. However, with Autism, the sooner you get over your denial, the better for your kids. But in the end, it is not our place to say anything in person. So, this is my way of getting it out. Err on the side of caution, and if nothing is wrong you will get the joy of relief.

 

Trystan was diagnosed before 18 months; I am not sure if this is still the earliest diagnosis in the province, but my estimate is yes as the numbers keep rising and the wait time to see professionals get considerably worse. The early paperwork allowed us to get him into a therapy called ABA (Applied Behaviour Analysis). 

 

The negative side to this was that he took Ashton’s spot in the program as they would not allow one family to take two spots, even if the need was there. The positive is that this therapy saved both of my children from feeding tubes, colostomy bags, and many other really negative medical conditions that could have occurred. We owe a great deal to this program, and more specifically its coordinator.

 

There we were, a two-year-old and a four-year-old old both with autism. People always ask how far down the spectrum they are. I have learned to answer simply, “far enough”. It is one of those things where you just have to answer bluntly, or you end up retelling a sad tale many times over. 

 

This was what I call the starting point. Even though we had both had way more emotions than most by that time, until both were diagnosed, we didn’t know our future. Now we did. Get as much help as possible, as quickly as possible, and stay sane at the same time. Just a small order.