G, In Five Years

Tomorrow is your birthday. You are a positively sweet, snuggly, smart and stubborn guy. There is no one like you on this earth. I look back at the last five years with so many different feelings. My biggest feeling is that I am proud of how hard you work to learn and to manage your feelings every single day.

“He’s still only two and a half,” I would say at those first doctor’s appointments with G. I wanted to help him right away and thought it would happen fast. It felt like we were so early and we had so much time. He stopped eating a variety of foods and would push them away. He was not talking or even pointing at things.

“He’s still three,” I said at the next appointments. He did not sleep well and woke up multiple times a night. He would cry, I would cry. He had breakdowns over small things and the worst part was that he could still not talk or communicate to tell us what he wanted or what was wrong. We took him to an occupational clinic and he was afraid to walk on their floor because it was a different color in every room. He cried and screamed. We worked through it and he overcame his fears. But then he didn’t want to get on the swing or climb on most of the equipment. He was upset still more than he was happy. We decided to look into ABA and focus on his diet and supplements to help him get better. Really we were grasping at dials in the dark. In the big picture he could do many things so well for a three year old, he could write numbers from 1-10 and was an iPad wizard. But through all of his learning, he was always battling his overwhelming feelings and sensory overload. That was all in the way of G being able to be completely and simply G. My research on autism, its causes and treatments, was daily and nightly.

“He’s still only four,” were my words at more handfuls of appointments. But now things were solidifying: we found the right ABA clinic, had so many more doctor’s appointments and did so much more research. He was better and more calm. He was learning ways to play instead of gravitating towards toys with numbers and books with numbers. He started using Proloquo on the iPad and very well. We could communicate and he could do more than grab our arm and pull us somewhere. We could ask him questions, and he could choose what he wanted. He got better with routines, bedtime improved, everything improved. He started sleeping through the night finally. He was no longer interested in some things he used to be good at, like writing numbers, but it wasn’t a priority at the ABA clinic or at home. With G, you really have to get into routines and repetition to keep him going or he might lose the skill, but that is like any kid really so I try not to worry about how that goes.

“He’s still only five,” will be the words I say at his first appointment of 2020, next week at an immunologist clinic here in Portland. I am interested in going down the road of investigating the possibilities of autoimmune encephalitis and allergies causing inflammation in his brain. We have had so much progress, and when you write it all down, it can be seen by anyone. But it’s hard to see it at times when you see him developing new OCD tendencies. He has now been at the same ABA clinic for one entire year and it’s all amazing progress. G drinks from a cup now and we have retired his Camelbak bottles with the straws he would chew through over and over. He is able to stop using an iPad or stop watching TV by us just saying “let’s take a break” and he walks away without any breakdowns.

We got him SMOs (Supra-Malleolar Orthosis inserts for his shoes) last month to help him to stop walking on his toes and make sure he doesn’t have a short heel cord. He actually doesn’t mind wearing them and it seems like it will go very well. So we are excited about that too – plus when he wears them it seems he focuses more on where he is going and what he is doing. Maybe he is thinking less about what his toes are telling him.

There are still so many more things we can try to help G. There are so many people helping kids and adults with autism all over the world. I see countless statements like this on websites:

The Council’s vision is to enhance the lives of individuals with ASD across their lifespans.

What would help individuals across their lifespans the most? To ease or remove their symptoms. This has been going on far too long to not be able to go to one doctor as soon as you know something is going on and get help right away, instead of struggling through hoop after hoop for years without any real direction. I am really happy when I see a news article about another airport opening a sensory waiting room, or sensory emergency rooms at hospitals, and special bathrooms, etc. but what I really want is to cure these individuals who cannot speak and who are caught in such nets of sensory overload. All of these rooms and special places are reactive. I want preventive.

During all of these happenings, and all of the moms and dads researching every day about their kids, posting in Facebook groups, and sometimes silently suffering through another day of worries and hopes, life is going on. And G is working hard each day. He goes through his therapy days and still comes out of that building with a smile on his face.

G’s next five years will surely be miraculous, no matter what. Happy Birthday, little nugget.