Two years ago my son could barely function. He tested right in the middle of the spectrum meaning he wasn't high functioning or low but right on the edge of both. He had no method of communicating other than body language which meant a lot of screaming and daily meltdowns that often lasted for hours. He ate very little and only drank if I placed something his hands and told him to. Largely due, I suspect, to a mess of a digestive system that caused him debilitating pain. I couldn't take him anywhere and when I did it almost always ended badly and extremely fast. I couldn't leave him with anyone for more than 30 minutes and whoever I left him with was in a state of anxiety hoping I would hurry back. Clothes, blankets, and shoes, all irritated him and just the feeling of a blanket on a cold night would wake him. He barely acknowledged anyone who spoke to him and just simply getting him to look at me was a challenge. He didn't touch anyone other than who he lived with and even hugging mom was few and far between. He was a wanderer to a point I couldn't leave his side because just saying his name to get his attention was irrelevant. He didn't have the ability to respond to his own name and people would ask me if he even knew what his own name was. I would say yes, but I was only 99% sure of that. No indication that he did, I just couldn't believe that he didn't.
When I describe the state he was in to people quickly I say, he was gone. Just flat out gone and autism had a vice grip on him that I wasn't sure would ever loosen up. I wanted to believe he would break out of his trap but I honestly had nothing to go on saying he would other than time, patience, and extreme faith. Along with a small handful of advocates who thought he could but I wondered sometimes if they were just taught to say positive things. I also if I would ever even hear my son say "I love you" because he was completely non verbal.
Today he speaks. He eats when hungry, drinks when thirsty, and that mess of a digestive system is no longer causing him pain. I can take him places for long periods of time and just know at some point he will have enough of it but it's never within minutes of arriving like it used to be. Meltdowns of course still happen but they are not every day and sometimes we go weeks without. Clothes still come off in the house but he keeps them on in public without an argument and every night he pulls the blanket up to his neck, says "I love you" and falls asleep. He acknowledges people around him and pays close attention to them, making eye contact without stress. He knows, responds, and can tell people his name along with giving high fives and hugs to people he used to retreat from. He has been able to show his sense of humor, his likes and dislikes without screaming in protest. He wanders but I am no longer super glued to his side directing him or keeping him safe every single moment because he has some ability to turn around and come back or follow. The last year has been watching my son slowly introduce himself to us and manage his own autism enough to shove the word aside and live life in a way we are not missing everything. It might be cut short but that is way better than not at all.
Is he caught up with his peers? No, and two years behind but when I have a paper in my hands full of charts telling me where he is at by comparison, I look it over once and never look at it again. If I wasn't in a room with a therapist when it's handed to me, I honestly might not look at it at all. Does he struggle socially? Very much so but the progress he has made makes it much less of a concern. I still have to be cautious and I help him communicate daily. None of the things above have come easy but they have come and that's all that matters. Instead of fearing a trip out of the house, especially to do something new, I am excited to have the experience no matter how small it may seem to someone else. Like we are both four year olds on a new adventure because being able to break out of isolation is amazing, not easy, just amazing.
I am not writing this to tell everyone how my son is doing but to make sure a parent out there who has locked themselves in the bathroom for just ten minutes to have a cry knows things change. Knows that stacks of charts aren't going to determine how patience and love will pay off or who your child is in this world. So that parent who has just left a grocery store with tears in their eyes and a screaming child knows one day you might get in the car with a smile giving a high five for rockin that quick trip in for milk. So that parents who can't get their child's attention know one day they might respond and look you in the eye while you speak. So a parent out there believes one day you might hear "I love you" with clarity. Believe just because autism won't let the words come out doesn't mean a child is not fighting every day to say them. So a parent out there who feels consumed by a diagnosis knows it's not the end or even a indicator of what's coming. Yes, it can be hard and yes people can be rude with a lack of knowledge towards autism but none of it matters the moment you see your child overcome something that was predetermined they might not. People will say autism is just a word but it really is a big piece of life and watching a child fight through it can be only be explained two ways...Overwhelmingly heartbreaking and overwhelmingly heartwarming. Somewhere in the middle you have to find a little peace, no matter how small it may be because it moves everyone forward knowing there is so much more to come.
