I love my child. Fiercely. In a way that I have never loved any other person in my life. He is amazing, beautiful and pure. But I hate his Autism. Hate it. I would give just about anything to just make it go away.
This may not be a popular point of view. People who have Autism want to be accepted and I've read countless articles about how we as parents should embrace the whole person, shouldn't try to change them, etc. etc. And, while I do try very hard to find the positive in B's diagnosis (there are definitely some pros), the truth of the matter is that it sucks. It has such a huge impact on our world and our family and has changed everything about it. These are just a few of things in no particular order that are on my mind lately. I should also point out that this is all from my perspective... I hate it times a million for B. I can't imagine how horribly frustrating it must be to be him - unable to communicate, in therapy 40+ hours a week, so different from other kids, without friends. How lonely he must be. Here's what keeps me up at night:
1) Sleep - literally and figuratively. It used to take B. two or 2.5 hours to fall asleep at night. Now, with the help of melatonin, he falls asleep almost instantly. And some nights, he sleeps all night. Other nights (lately pretty much every other night), he sleeps until about midnight and then he's UP. The boy throws a party in his room for as many as 6 or 7 hours at times. He very loudly sings, laughs, yells and RUNS on his bed and God knows what else. The house shakes sometimes. I guess we're lucky because he does not require us to actually get up. It's just not easy to sleep through and I usually lie awake worrying about the fact that both he and I should be sleeping. When we visit family or take a vacation, it's worse because if he doesn't sleep, nobody sleeps. Nothing puts a bigger damper on a "vacation" than 3 or 4 people (my other son blessedly sleeps through it most of the time) who are so sleep deprived, they can barely function.
2) Not being able to do things as a family. We usually have to choose whether to do something the way most families would or whether to try it with B. It's not his fault (obviously) but it is very tough to go places and do things with him. Sometimes it goes smoothly and sometimes he sits down at the base of an escalator and refuses to move. It is completely unpredictable. This is getting MUCH harder the older he gets because he's too big to pick up and I literally can not make him do things a lot of the time. In fact, most things are getting harder instead of easier. We are supposed to be moving in the opposite direction. So we do a lot of things as a party of 3 - going out to eat, going to movies, birthday parties, playdates, even vacation sometimes. It's easier that way and yet it's so much harder to leave him behind.
3) The crying. I listen to B cry at least 5 or 6 times a day. Think about that. He is 6. How often do you have to hear your 6 year old cry? For my 7 year old, I'm thinking it's maybe once a month. And B's cries are heartbreaking because most of the time I don't know why and I can almost never make it any better. He pushes me away and tries to make the tears go away too. This is true whether he is hurt, sad, mad, sick or frustrated. I can only guess the reason and I'm pretty sure I'm wrong a lot of the time.
4) Our lifestyle that no one can truly relate to. For three and a half years, our world has revolved around ABA therapy. We have a team of 6 people (give or take) in our home 40+ hours a week. While I am grateful that we live in a place with such great resources, this way of life is not easy. It means never being alone, always having an audience while you eat, clean, parent, live. It means 10-15 hours per week of parent training and meetings. It means playdates where you have to play in a limited space so as not to disturb "teaching". It means having all of your toys taken apart and repurposed and often times missing or misplaced. It means extra coats, extra shoes, extra coffee cups and a house that can never be as clean as I want it to be. It means never having a weekend off and always opening our door at 8 a.m. ready to start the day. And it's something you have to experience to understand which can feel very isolating.
5) Communication. I remember sitting in an ECFE class when B was not yet 2 and expressing concern about him being a "late talker". And I remember saying that we felt like we didn't really know him without it. And I still feel this way today. I know B, better than anyone really, but I don't really know him. I know who he is in spite of his Autism. I know what he seems to like to do and what makes him seem happiest but I don't truly know him. I have never been able to ask him a question. He has never told me anything other than a simple 2 word request. He has never called out to me or showed me something of interest. As grateful as I am to get to experience being a parent to a "typical" child, it makes it so much clearer what we are missing. Every single word B. has ever spoken has been hard work. I remember the magic in watching my older son learn to talk, how cute his early speech was and how fast his vocabulary evolved. With B, language development & communication has only been work, confusion, frustration and despair. You don't realize how important this is until you don't have it.
6) Uncertainty about his future. This is the biggie. All of this would be a lot easier to handle if we knew how it turned out. If we knew we were doing the right things, working toward the right goals, doing what's best for B. If we knew he was going to be okay. Of course we don't know the future for any kid but we do know that they will grow up and be independent some day, however that may look. With B, we don't have that same certainty. It's terrifying and I can only allow myself to think about it once in a great while or it is just too much.
I'm not looking for a pity party. I know that you don't ever have to look very far to find someone who has it far, far worse. This is just how I feel lately and it has kept me from wanting to blog and share our day to day experiences. I'm burned out. I'm sure B. is too. It is painfully hard work.
