It has been a while since I last sat down to compose a blog. It certainly has not been for a lack of stories to tell, there are many. This summer turned out to be the most difficult summer yet for Holden. Ironically the reason it was such a difficult summer, is actually a good thing. If you haven’t guessed it, that is going to be the subject of this blog. Before I embark on this though, I have to say, though I am not ready to go into details about it, and may never, this summer was TOUGH. It saw major meltdowns, that were very hard to live through, and according to a friend who visited for two days, even harder to watch as an outsider. Holden’s meltdowns were very aggressive, and both self injurious, and directed at me. We both had our share of bruises, lumps and cuts, that he inflicted. I also don’t want to paint a picture that it was only that. He probably averaged 1.75 bad meltdowns a day, so a little less than two a day. With a few moderate ones as well.
So why was it good that this summer was so damn tough. Because Holden was the most aware he has ever been. Aware of everything going on around him. This is a bit of a deceptive statement though, because Holden is always very aware of his surroundings. What was different was that he was much more aware of the abstract. Holden has always noticed the tiniest of physical changes to his world, and I mean TINIEST! If you have a half inch piece of string on your shoe, Holden will notice it, and want to remove it. This tends to be interesting while out in public, and Holden sees a leaf stuck on some random person’s shoe. He will go diving in, and try to remove said leaf. Meanwhile the poor innocent bystander has no idea why some kids is charging his feet. If I make changes to the house, I have found that the best way to do so is to make the change while he is not home. Then make sure to prime him that I made a change, then show him the change. It doesn’t mean he will accept the change, but it is the best shot at getting him to accept it.
What was different this year was Holden’s awareness of time, and his awareness of situations. I’ll talk about time first. For a very long time, the concept of time has been too abstract for Holden to grasp. Short amounts of time became more apparent to him about a year ago. In fact he would start bargaining with me.
Holden: Nexus 5 Please.
Me: Nope, that is mine.
Holden: 10 minutes!
We had used those short time values, 5 minutes, 10 minutes, 15 minutes in therapy enough that he was starting to grasp the concept. But things like tomorrow, next week, or yesterday still had no meaning to him. So there was a long standing concept that he did understand, though it took a while. I still use it today, it is “Shower, bus and school tomorrow”. It was my way of priming him every night, because it was always such a battle to get him to willingly go to school, still can be. So he started to modify this with “No shower bus and school tomorrow.” (By the way, the way Holden says tomorrow is so damn cute!!!) I started to see a pattern here too. He would say this 1) when he had a bad day or bus ride. 2) He would start saying this around Wednesday night, when he felt the school week should be ending soon. So he was beginning to grasp the idea of school week, and that it should be ending soon. Up until about a year ago, he really seemed to have no clue when the weekend was coming. This led to a new concept; “iPad when the sun comes up.” He was not allowed to use his iPad on school days until he was on the bus, so he began to understand he could use it on the weekend. The problem was, he started waking up earlier and earlier on the weekend, to start playing on the iPad. So he slightly modified that statement, and turned it into a question; “iPad when your sun comes up?” which was his way of asking is tomorrow the weekend. The next progression in this was the idea of sleeps to count days. Example:
Holden: iPad when your sun comes up? (translations “Is tomorrow the weekend?)
Me: No Shower bus and School tomorrow. Two more sleeps till iPad when the sun comes up.
Well this idea of sleeps worked for Holden. Soon he was asking/bargaining with it.
Holden: iPad when your sun comes up?
Me: No, shower bus and school tomorrow.
Holden: One more sleep than iPad when your sun comes up!
Me: No, three more sleeps, than iPad when the sun comes up.
So over the school year last year, this idea of time became more and more concrete to him. At the same time he was becoming more aware of other concepts. Like Kellogg wasn’t a generic name for school anymore, it was a specific school. Sometimes he wanted to visit GVJH, or he would remember Hidden Valley Middle School from Escondido where we used to go hang out sometimes when we lived there. Places were becoming more generic to him. Holden has an amazing sense of geography, and as a result he always knew where his favorite places were, like 7-Eleven, or Rusty’s Pizza, or Whole Foods, but now we could pass one he didn’t know from geography, and fully understand that they basically carried the same stuff. In the past we would have to go to a specific 7-Eleven, or he might have an issue, but now he understood they all carry the same stuff. He just had to find those key things in the new location to feel fine in a different place. This was huge for Holden. He was accepting that even if they didn’t look the same, and weren’t in the same place,he could find the same things inside. Again over the last school year his ability to understand concepts like these skyrocketed.
So, when it came time for the school year to end, he completely comprehended what that meant. The first change was not as bad. It was explaining that after just 9 sleeps he would be back in school. However, summer school was only four days a week, and only until 11:45am. Once again, he comprehended that he was getting less time, and less days. He was okay with this though. The misconception is that Holden is super happy in school. Well, for Holden, school is like diet and exercise, he gets that it is better for him, but he doesn’t always look forward to it. Plus he really likes the social aspect of it. He misses the people. Then came the end of summer school. Once again, he was very aware that it was coming to an end. His anxiety spiked on the last week of summer school, and he came home the last day completely comprehending that he was not going back to school for a while. In the past it would take him a few weeks to start to realize, hey I haven’t been in school for a while. Plus I would make up a schedule, and keep this schedule all summer long. You shower at this time, read at this time, so forth and so on. He was like, okay this is like school, I can dig it. Not anymore. It didn’t matter what I did, he knew he wasn’t at school, and he knew I wasn’t his teacher, and when we visited the school, he knew it wasn’t open. He missed his aids, and he missed the school. We would visit the school a minimum of 5 days a week over the summer, and sometimes he requested going twice a day. He constantly asked how many sleeps till school started, and would confirm his figures with me everyday. Very soon just visiting wasn’t enough, he wanted me to get keys for the school. Open his beloved room 2. Open the P.E. shed. Open the cafeteria. His anxiety spiked as the summer continued, and everything would set him off. Sometimes he would start melting down within five minutes of getting the iPad, which he still has to wait until the sun is up to use. His flexibility was getting shorter and shorter. Sometimes he would be lying in bed, on the verge of going to sleep, and he would start kicking and biting himself, and screaming. Completely out of the blue. No game setting him off, no denied access to something, no having to be flexible, just instant meltdown. I’m sure there was plenty going on in his head, but I don’t have access to that information. The further into summer, the more he became inconsolable. Everything led to a meltdown, because the thing he wanted was not accessible to him. There was no redirecting him, no distracting him, and no compromising. He wanted something very specific, and he knew, he was completely comprehending, that he could not have it.
His self awareness, and awareness of everything around him was amazing...but it was also torture for him. I know it is a great thing! I was completely blindsided by it this year, and next year I will try a new strategy. I don’t think a summer camp is the right fit for Holden, but I have a whole school year to figure out what will work. Yes it made for a very tough summer, but this kid is aware!!!! He is so aware! We have been working on this for so long, and it has been getting more and more noticeable. It may cause a lot more problems in the future, but is also is a HUGE sign of hope. It is the golden key to unlocking everything else. I will take every damn bruise, lump, and scar I got this summer, because it was progress. It was ugly, frustrating, emotionally exhausting, and at times pushed me way past my limit, but it was progress!!!!
