Anyone who is a reader of my blog is very familiar with my family. More specifically, Matthew; my almost 12 year old son who lives with Asperger’s Syndrome, a form of Autism.
Nine days out of ten our days are very routine and typical. Day number ten doesn’t happen very often, but when it does it reminds Mike and I why Matthew is the special little boy that he is.
This weekend we rented a cottage a few hours away from home. Matthew has camped in a tent the last few years, but this year with the baby being so young I didn’t feel much like pitching a tent in a campground. Mind you, the cottage is about 5,000 times more expensive but we figured, “What the heck?” and off we trotted.
The cottage is beautiful and Matthew felt “at home” right away. There was lots of space for him to play and wander without leaving our sight. He found a playground with swings and hand-rings and a sandbox. Heaven. He was in absolute heaven. He played out in that sand for 4 hours straight the first night we arrived and continued his work well into the second day. More on this later.
Our first night, bedtime was a little difficult. It’s a new place with new sounds and not a whole lot of insulations in the walls; it is a log cabin after all. Every noise, every squeak, every sound caused Matthew great anxiety. There was no way he was going to settle unless one of us went in a lied down with him. It’s been a few years since we’ve had to go and lie with him. As soon as Mike stretched out, Matthew was sound asleep. Safe – he just needed to feel safe, and Dad makes him feel safe.
The next morning Matthew said he had he best sleep of his life. We had a late breakfast and just lazed around for a while. He was in and out and back and forth to the sand pile working tirelessly to make his creation just so. Later in the afternoon we drove to a beach and again he had a ball playing in the sand. We returned back to the cottage and began cooking supper. Shortly after a van arrived at the cottage next door and soon we realized that Matthew’s mood was going to change and not for the better. Two beautiful little girls were out and around checking the lay of the land. They found the sand box. In ten seconds flat Matthew’s hours and hours of work was gone. Mike and I stood in the window and our hearts sunk as we watched the two little girls demolish a creation which took Matt to a land so far away. So, do we tell him or do we let him find it on his own? If he goes out and finds it on his own we know that he’s going to lose it out in the middle of the yard. I didn’t want that.
Off to the bedroom I went. I explained to him that the two girls found the sandbox and started playing in it and his project was kinda kaput. He started to freak and I tried to explain to him that it wasn’t “his” sand and that anyone who came around was allowed to play with it. This is one of the challenges he faces with Asperger’s. He just doesn’t get it. He thinks that people are doing things just to be mean and to hurt him. He doesn’t understand that some things are “universal” and belong to everyone. Because he was playing there and he was working on something, in his mind it was his and no one should have come along and destroyed it. He came out and looked out the window. He little heart was broken. My heart was broken. I cried for him. I can only imagine how he felt. He had worked so hard and had an entire scenario scripted out around his sand sculpture and now it was nothing more than a mound of dirt. The house, the driveways, the yard…it was all gone. And so was the happiness that it generated for my boy.
Trying to explain to Matthew to be happy that he had so much fun playing with it in the first place is like talking to the wall. Trying to tell him that he could go out and rebuild it is useless. Don’t you know it would never be the same because he would never remember where every single grain of sand was (his words, not mine), and it was just “perfect” the first time he made it. Had those girls not come by and destroyed it, he wouldn’t have to go and do it again. So now he’s devastated and has no more interest in the outside because he doesn’t want to see “those girls”.
To the average outsider looking in, my son would be behaving like a spoiled rotten brat, and that’s what makes me so sad as I sit here in tears writing this. Matthew is the furthest thing from a spoiled brat than you could possibly imagine. He is a young boy with a heart of gold and a personality so beautiful. But he sees the world so differently than you and I. All I want to do is protect him. It would have taken nothing for me to go outside yesterday and ask those girls not to destroy Matthew’s sand castle, and I would have done it in a heartbeat, but come on. It’s a pile of dirt. I can’t stop other children from playing in the sand. You know what really got to me yesterday? As mike was standing looking out the door he said to me that if we were to ever win the lottery he would build a compound with 30 feet high walls so no one could get into Matthew’s world. No one would be able to hurt him and he could just let in whomever he wanted. My heart cracked into a million pieces when he said this.
Today was a rainy day at the cottage and there wasn’t a whole lot to do. He would walk from window to window to door and back to his bedroom to watch DVDs. One of his trips looking out the window he said that he wished he could go outside and play in the sand. At exactly the same time Mike and I both said “go ahead”. He looked at us like we had ten heads. Mike dug out a big black garbage bag and made a raincoat out of it and off he went. On his way out the door he looked at Mike and asked him if he was coming too. Yeah, right! It was pouring cats and dogs out there. About five minutes after Matthew went out, Mike decided to join him. They soon informed me that they were heading to the beach. Off they went on a wonderful father/son adventure that means more to Matthew than anything in the world. Their adventures have been somewhat shortened since Marcus arrived, but he’s never complained – not once. He loves his little brother “to death” and he does understand why Mom and Dad’s time has to be shared between the two of them. This was a concept I thought was going to be way more difficult than it was for him to grasp.
How is he ever going to adapt to the “real world”? How is he ever going to be independent when at 11, almost 12 years old he can’t understand the dynamics needed to survive for a child half his age? How will we ever teach him subtlety? How will he ever understand using tact? And how do we make him realize that the entire world isn’t out to get him? But perhaps the most important question in my mind right now – how do we teach the world about Matthew? We can’t change him. His brain is wired differently than ours is. We could tell him something 100 times, but it’s not going to make any difference. We had to change ad adapt a lot of our ways to fit into “his world”. We have the ability to do that where he doesn’t. How do I explain this to the rest of “our world”?
I’m normally really good when it comes to dealing with Matthew and all his little idiosyncrasies, but every once in a while I get the boo-hoo’s. It shouldn’t have to be this hard for him. He’s too much of a happy little boy for all the hardships he endures. It just makes me so sad. Should anyone reading this have any great insights for me, I’d love to hear them. But see, that’s another thing. Every single child who lives with ASD is so different. What works for one doesn’t necessarily work for the next and what works today may not tomorrow. It’s a continuous vicious circle that never ends.
I love my son and everything that makes him ‘him’. I just wish I could take some of his frustrations away. He deserves to be happy.
Thank you for letting me vent.
Until next time…