Being Told to Start Over

“Two roads diverged in a wood, and I took the one less travelled by, and that has made all the difference” – Robert Frost

 

Imagine this scenario if it was not a choice, and the one less travelled is significantly harder to walk on. For those who never have to face a team of professionals assessing your child, consider yourself lucky. I was not fully prepared for the diagnosis day. Don’t get me wrong, I am sure I had gone through every stage of denial by the time it came around (it’s not a quick process) but sitting in the room you feel utterly alone. I can remember many people talking, but I was only focused on Ashton playing in the corner. Car up the ramp, car down the ramp.

 

To receive a full diagnosis of autism, professionals must assess your children’s capabilities in many areas. Everything from motor development to behaviour, to learning, and simple skills such as building blocks. By the time we had the final meeting, I had seen more professional therapists than I assume most people will see in a lifetime. For my wife and I, we already knew the diagnosis. By that point, we were just waiting on the paperwork so we could start moving forward down the road less travelled per se.

 

In a few aspects, we were lucky. This was before the medical and therapy system was massively overloaded due to the pandemic, and also because the statistics on autism diagnosis are going higher each year. It still looks like a long time, but by today’s standards, it was quick. In fact, with our second child Trystan, it was what we would call a slam dunk. By that time, we were convinced, our paediatrician was convinced, and the testing was just a formality. He got fast-tracked and for that, we are thankful as it allowed him to get into programs much earlier in life than Ashton or any other kids today.

 

If I could give any advice to parents about facing the firing squad (bad joke, these people are here to help you get started with your new definition of life), be prepared before you go in. By prepared I mean have the discussions with your spouse and family. Whether it was because my wife was experienced with special needs children and circumstances, or maybe that I was a hard realist and had already started long-term planning for our family but by this time, we were ready for whatever they were going to say. By that point, most of you will probably already know or be pretty clear on where your children are on the spectrum. For us, we were ready, and that made the day not near as bad as the surprise that some families probably face.

 

I would also advise you to make sure you use the time for questions. This will probably be one of the very few times you will have a group of professionals all together in the room. I wish I had been more prepared, although my wife was almost far enough for the both of us. I came out of that even more proud of her and realizing how much she was going to be the one that held us together moving forward. She grilled the professionals on how, what, where, when, and why all things autism. From medication questions to the paediatrician, behaviour questions to the psychologist, motor programs to be set up by the occupational therapist, and speech programs to be run by the speech therapist. She realized what this meeting was for way before I did. I was a little more like a deer in the headlights.

 

The second time around, it was just for the paperwork. I remember that with Trystan, my wife and I telling them the diagnosis and identifying the areas where he was ahead or even behind Ashton at that point. After two years of practice, I knew way more about autism than before and I also knew that these professionals were only going to help us (for free) in a limited capacity. So, we both used 90% of the meeting for questions, and 10% receiving the diagnosis. It’s almost like how people say with the second child you worry less, we were more prepared for the second diagnosis.

 

The final closure for us from this meeting was a question that I had never thought of, although I really should have. My wife asked the paediatrician, “What are the chances if we have a third child that they will have autism?”. It was out of left field, even I didn’t see it coming. The answer was greater than 80%. We had to let that sink in for a few days. It is hard to face the closure that we were not going to have a child that was not special needs moving forward. But that was many years ago, and since then we have removed the possibility. Two we can survive; three I am not so sure.