I can still hear the doctors words the day he was diagnosed back in 2010 “he may never speak”. I heard those words when he was two and I heard them echo in my mind yesterday as I listened to him sing an entire song at the age of twelve. I hear those doctors words when aiden says “Papa house? Yes?” I hear those words when I hear him say “sook (school) tomorrow?” or my current favorite “Aiden house? Yes”. He has come such a long way in the past year. Despite the sleepless nights with his schedule being backwards due to the ever changing school schedule with covid and all I have seen his eyes become brighter and his interactions become more functional.
An example of his increased functionality is he is more able to follow directions and carry them through to completion. What do I mean? The other day aiden came out of his room with no pants on and I quickly said “Aiden, go put your pants on.” as quickly as I asked he went into his room i figured he would get distracted and would require more prompting but two minutes later he rounded the corner into the dining room with his pants on backwards and a smile on his face as if to say “I did it mom!” I was so proud.
I see improvements in his execuitive functioning as well. The other day when it was time for school I got him dressed, helped him to put his orthotics on and struggled to get his shoes over them (they never fit its always a muscle game to get them on) and as soon as this task was done he said “backpack” and ran to his room to get his backpack. I figured he would fill it with whatever DVDs he is into now (dvds are his obsession) and his portable dvd player. While he did pack these things he also packed a binder with his school work in it and said “sook”. I stood there with my jaw open.
Another thing I have noticed is that he thinks things through a bit more. For instance, when he was younger if he was eating something out of a wrapper say… popcorn out of the bag… when he was done he would just throw the bag on the floor and keep right on going. Now, he has begun throwing the wrappers in the trash withoutbeing asked. Just recently I have noticed that Aiden helps me to clean even when I don’t ask. The other day, he picked up a random cup that had been left on the table and threw it in the sink. Sounds small to some but to me this was huge. Not only does it show that he is aware that the cup is there and needs to but picked up but it also shows that he is paying attention the behaviors of those around him and is adjusting his behavior accordingly.
Puberty is in full swing with his 13th birthday fast approaching. This has proven to be quite a challenge mostly just trying to keep pants on the kid and when he does keep his pants on keeping his hands out of them. Par for the course I suppose. Last week I helped him to shave for the first time. What I thought was going to be a huge hurdle turned out to be nothing more than a normal life milestone. Unlike hair cuts and toenail clipping this was as easy as it should be in a typical situation.
Its been nice having a bit of a break from ABA therapy. The best part is watching him still grow and progress while not having a therapist in his face. Its kind of neat to watch him find his own way, his own interests and his own problem solving. Don’t get me wrong, he will never be normal by the worlds standards but my goal of making him someone that caregivers would like to care for is truly coming to fruition. I know he will never live independently, that’s just the fact of the matter for him but that does not mean that he can’t learn to be as independent as possible.
On the caregiving side, I’m pretty exhausted with him not sleeping at night. I spend my life wondering when I will sleep again and gageing when he should fall asleep or when I should wake him up from a nap. Trying to care-give someone else when your tank is empty is tough but I try to find little pockets of time in the day to relax. The isolation is still tough but I am planning a four day trip to Boston in June which I am so very exited for. Having something to look forward to really does a lot for the psyche.
I have begun starting to think about the transition years and what it will be like when my parents are no longer able to help take care of Aiden. I am starting to organize my thoughts so I can prepare for applications of guardianship, state help if it ever gets to a point where I can no longer work and take care of him. I wish I could get to that point where I could stay home with him fulltime but now as a single parent I don’t know how to go about finding that. I don’t want the state taking care of him or someone who does not love him. That’s not how I see his future going he deserves more.
Anyway, that’s all for now. I guess what I have learned this past year is sometimes the doctors don’t know what they are talking about. I was also told he may never be potty trained and wouldn’t you know he is my only kiddo that doesn’t even wet the bed. I’m so proud of this boy, I’m so proud of myself and I’m proud of this journey. Giving up was never an option despite the many times I have tearfully said “I give up” those were but a moment before I collected myself and said “this is not where we are going to stay” and would go back to the drawing board to fix whatever had transpired to leave me so defeated. This journey has taught me to look past the prognosis, the “he will never” comments and look instead to the “but he can” “we can alter this to make it work. it might not look normal to everyone else but it accomplishes the same task”. What I have learned is that Its not about where you start or where you finish Its about the love you find along the way.