The patience required for raising Autistic children is immeasurable. I can nver seem to live in “the now” because I am always having to think 2 steps ahead. I feel like my patience with Gavin after the past 6 years is finally starting to disappear. He just complicates everything. It would be one thing if it were out of his control but so much of what he does to disrupt everyones lives is willful. I used you be the one saying he had no control over these things but anymore it really seems like he is choosing to do some of these things. There are times that I feel that he is without control of his actions but those times are fewer and fewer. There is so much speculation as to what is going on with him. The Cleveland Clinic and Akron Children’s Hospital have not been able to give us the answers we need and they are two of the best hospitals anywhere.
We need to know how to respond to him and what his ability to control himself is. Right now we are at a loss because we don’t know how to handle him. He doesn’t seem to learn from his mistakes and he knows how to manipulate most people who don’t know him and even some that do. The impact Gavin’s behaviors have on the entire family is very profound. We had to leave Thanksgiving (we celebrated early this year) right after dinner because Gavin had a meltdown cause he didn’t get his way. He nearly hit my mother (flailing around) while we were getting him out of the room. If I had given him what he wanted he would have stopped immediately. That demonstrates complete control over himself to me. However he will just continue to escalate until he decides he’s done. We NEVER give in to him because then it would all be over and the balance of power would tip. We CANNOT afford for that to happen. I don’t know where the Autism fits in here. May it makes him prone to more easily losing his temper. His emotional age is about 3 so I’m sure that as well plays a role in his reactions.
I have just gotten to the point where I have little if anything left for him. The energy it requires to undo the influence he has on his brothers is unimaginable. Gavin says something to Elliott 1 time and it will take us days, weeks and sometimes even months to move past that. The nightmares he has given his brother leaves me with a good nights sleep until Elliott gets past the scary things Gavin told him. When we catch him saying something he shouldn’t he always says he “forgot” he wasn’t supposed to say things like that. I wasn’t born yesterday I know he didn’t forget, in fact I would swear he does it on purpose. I know that’s not a nice thing to say about your child but until you have witnessed the things he is capable of you would never believe it.
All of this is so exhausting that I just don’t have anything left. Elliott and Emmett require so much time and energy and over the years we have spent ourselves into a hole for Gavin. We have given up everything to help him and honestly sometimes it feels like a wasted effort. Our doctors tell us that Gavin is like a bucket full of holes. No matter how much we pour into him it just leaks right out. We are told to spend what little energy we have left where it will do the most good. Emmett especially needs continued focus on early intervention. Elliott does pretty well so far but he needs constant reassurance and support because of anxiety issues.
Gavin has been handful all day today. As I am typing this I can hear him through the ceiling in the living room. He’s running around when he is supposed to be sleeping. I need to go put an end to that before he wakes up his brothers or hurts himself.
I can totally relate. I have a son who is 15 but emotionally about 6 or 7. Still he is high functioning. He has Aspergers as well but of course as you know, also exhibits OCD, sensory issues and more under this umbrella. I feel the same when you say that sometimes most of what he does to disrupt others lives is intentional. Yet other times I know it's because of his disability, he doesn't have the capacity to handle life like we do. Still, I worry because he cannot seem to see what he does is wrong and disruptive yet complains about EVERYTHING! Thank you for writing this post. I'm going to forward it to my husband. We are just as lost as you are at times. I am afraid for my son's future. Because he's so high functioning, everyone's expectations of him are waaaay off and too high (teachers, school, peers, friends, neighbors etc). I cannot see him out in the real world without close assistance of another adult. I'm just now realizing this and time (as I feel) is "running out" considering his age.
I'll be checking back on your blog. This is great. I follow you on Twitter as well (VickysIckies).
Isn't it amazing how many more people there are out that are in a similar boat. What would we do without the online community? I can totally relate… hang in there and keep in touch. We all need to stick together….have a good holiday…