I almost started updating my facebook status with this, but some people just aren't interested and don't want to be bothered, plus I knew it would start to get too long. So here is my thoughts for today...
Boys aren't in school today. They aren't physically ill, they rarely ever are, we've been blessed with that. But, the pharmacy didn't get Aaron's refill request that I sent in a week before he ran out. He takes intuniv. It takes the edge off his mood swings and calms his tourettes down a bit. Shouldn't be a problem but it's a fairly new medication in Canada and more difficult to get, so they couldn't get any until today. They generally keep a supply for him but another kid has started taking it in town and they gave his away. We weren't too upset, we figured we would test out how he was doing without medication anyways, afterall, it's only 1mg dose. Shouldn't be too difficult right? HA! He's been three days without and OMG it's been a horrible weekend. He's been exceptionally angry and moody. Last night he couldn't sleep at all. Kept worrying about life and growing up. Holding my 9 year old son at 3am as he sobs that he is scared and he doesn't want to grow up is beyond heartbreaking when all I want to tell him is that he doesn't have to. I don't want him to grow, I want to keep him here with me forever where I know he is safe and cared for. I was able to eventually convince him that he won't leave our home until he is ready and that we always work together to learn tools to help him be successful in his own life. He finally went to sleep at 5:45am. Subsequently, Adam has had a rough weekend feeding off his brother and trying to keep his own aspergers in check. So they are both having a mental health day, in it's truest form.
I feel a bit rattled by this weekend, for a couple of reasons...
First, I hate that my child is so relient on medication. I worry that if that continues and he decides one day not to take his medication, he won't have the tools in place to deal with his disabilities. It's terrifying. *This is not an invitation for herbal remedies, courses, snake oils or potions, although I completely respect and am thrilled for anyone with positive experiences with them. There is no vitamin, diet or parenting strategy that will erase the fact that Aaron has aspergers and tourettes and Adam has aspergers. Believe me, if there was a way to "cure" it, we would have already done it.* The only thing that has helped, is teaching them about themselves. Sounds easy? Nope! Trying to teach a 7 & 9 year olds to be self aware and regulate their emotions is not easy. Dare I say, it's a task that most adults have difficulty with, if they are ever able to control it. Not easy. Definitely not easy to teach it and keep my own emtions in tact. But this is the only steadfast remedy to high functioning autism that has somewhat of a chance in our house.
Secondly, I hate that my children have a long battle uphill their entire lives. I hate it, I hate it, I hate it. But I have accepted it. Doesn't mean I have to like it. Doesn't mean I have to understand it. We do try to make it the best life possible. I try to be positive with them. I've licked my wounds and still do sometimes. There are hard days. Days I never thought I would experience as a parent. Days I question why I was chosen for them. My vision of constant happiness, love and joy as a family, isn't the way I imagined it. We have moments of pure bliss. So much love that our hearts can hardly hold it. Aaron told me the other day, "Sometimes I want to say something to you but I can't even find the words so I just tell you I love you because that is all I know." My boys know unconditional love. They know we would spin the world for them if it would make theirs right. They know we are their soft spot. We don't always know we are their soft spot. We know that sometimes, they are just mean and unreasonable and those times are so....I can't even say difficult because it's beyond that. It's a hard life.
I get told so often, from so many people, how sweet and kind and brilliant both the boys are and it's true. They show those things and it is truly them. I don't think people realize how difficult it is for them to be "on". By the time they get home at the end of the day, they are utterly exhausted. That's where the soft spot comes in. It sounds glamorous doesn't it? Yeah, not so! Every single horrible thing they have felt during the day comes out at home, more so with Aaron than Adam. Adam is committed to how he feels. He comes home and if something bothers him, he just assumes that I know what it is and how to fix it. A lot of conversation and a lot of frustratoin on both our parts comes in to play then. With Aaron, it's just anger and hurt. Many days we are able to talk through whatever may have bothered him and come to a solution, many days he just bottles it up. At the end of every day, each of them come to me with apologies and love. They know that I forgive them before any of it even happens. I'm thankful that they have heard the many times I've told them "just because you have aspergers does not mean that you get to be mean to anyone" or "yes you have aspergers, but you still have to live in this world and find a way to do that". It's sinking in and we continue to work on it.
Now that they are more conscious in their conversations, I often hear "why do I have aspergers" or "I hate my aspergers". We focus on the positives that come with aspergers. They are unique and I wouldn't change them. I would change how difficult life is for our family, but I wouldn't change that they have brilliant minds, caring spirits and loving hearts. They are socially conscious and self aware. They are forward thinkers and will change the world. I have no doubt. I had a friend say that she always felt that aspergers was the next level of consciousness, I believe it's true. I believe it's so difficult for them because this world isn't ready for them. They don't understand when people don't use common sense. They get stuck somewhere between being socially awkward and being misunderstood. That's the part that we are working on....being themselves.
So yes, this mental health day was necessary and they are now sitting in front of a video game in their underwear snacking on chips, resting their minds and spirits and knowing that when the world is too much, it is okay to take a break and breathe. It's okay for all of us.
(Yup that would have been way too long for a facebook status).
