Help is Not Coming

Have you ever watched an action movie where the good guys are pinned down, the leader looks around and then has a big motivational speech about fighting back because “help is not coming”? That is the feeling we face a lot of the time. You will learn very quickly that there is no handbook or guide given out to parents of autistic children, and no child is the same. It is up to you, your spouse, and hopefully some extended family, no other help is coming.


This is not a slight against any of the professionals we have worked with. I can remember nights in the emergency room with Ashton where we had some of the best nurses we could have asked for who even let us sleep on padding on the floor because Ashton was scared of the hospital beds. We have also met many great therapists and medical professionals. But in my opinion, the medical field is not prepared for the number of children with autism that are coming.


I have found that therapists are generally more helpful than the medical doctors we have seen. We lucked out because our family practitioner grew up with a sister with autism. One of the few bright lights we have seen is a doctor who understands what we go through each day in our home and professional lives. But, in terms of the other practitioners we have utilized over time, they do not understand very much about behaviours and children with autism.


The best story, and we laugh about it now, but I was very close to punching a doctor at the time was when our youngest child had some throat issues and they wanted to do some testing where he needed to swallow a liquid and then get an x-ray to track the journey into his stomach (Barium Swallow). The first red flag was that nobody let them know Trystan was autistic before we got there. The doctor had a nurse assistant who might have been 100 lbs soaking wet. My wife and I looked at them and said, “You’re going to need a bigger body”. By that time Trystan could fight with the best of us, and holding a child down for an x-ray takes a team, not an individual.


The first thing we had to do was plug his nose and shoot the liquid down his throat with a syringe (still the only way he will take medicine, although the nose part has gotten less and less). So, picture this, my wife straddled our four-year-old holding his head, I put my 200 lbs on his arms and legs, and then fired liquid down his throat while plugging his nose and blocking his mouth so he couldn’t spit it out. Never have I seen a doctor’s eyes so wide, and never have I expected social services to give us a call as after that day. The best part is that it was the easy part. Next, with him now really pissed, we then had two nurses, my wife and I all holding him in the X-ray. 


“Maybe we should not do this” – Doctor.


“Take the picture NOW” – Wife.


I could go on with stories for days about these occurrences. From being kicked out of the x-ray during the pandemic because my kids wouldn’t leave a mask on, or the time Trystan had to fast until four in the afternoon for a procedure. Ever starve a kid who doesn’t know why they can’t eat? It isn’t that fun.


I don’t mean for this to be a bashing of the medical field. I’m just agreeing with most of the articles I read these days on them being unprepared when it comes to the number of special needs children coming into the system. I believe this is true in many schools as well. My point is to tell parents that they need to be ready to fight this fight alone at times. We have had several areas where we needed to make the final decision because nobody else knew what to do. You learn to just keep moving forward and hope you don’t trip.