Again, it’s been a few months. I have missed writing down my thoughts but it is really hard to do when you don’t know what they are yet. There has been so much happening and it takes me a long time to sort through everything and make plans. Feel out my reactions to everything, beyond the initial changes. So here is the update.
First, we survived the holidays! Historically they are the hardest time for max and jack. All the anticipation and excitement turns into anxiety and then behavior for them. We did it though! This year max was a little less aggravated on christmas day, he removed himself to another room once all the presents were opened and happily put together a Lego set all by himself. Jack was so happy to be with everyone that he ran around eating and laughing most of the morning. We came home and max played minecraft for the first time since he lost his kindle in june which made him so happy. It really was a great day of us just being together and enjoying it. Our special present to the boys this year was a treasure chest filled with pirates gold, gem stones and skeleton keys. Max’s (and also jacks since he is into whatever max is) current obsession is keys, so it was so fun to see their faces when there opened them! It was our best christmas day together yet.
Going back a few months, max had another big near psych eval in October which we got the results of in november. It was another long day emotional day for all of us. Max was not in a great place because the medicine he was on was making him withdraw even more than normal, but despite of that he loved staying in a hotel with just mom and dad, eating pizza in his bed, swimming in the hotel pool, and just enjoying being an only child for a night. It’s so rare that we get that one on one time with his so when we have these big evaluations we try to make a night of it. The primary objective of this big evaluation was to see what he is dealing with other than just the autism we already know about. The rage he experiences, the mood swings, how depressed he always seems to be and the things he would say about/do to himself were growing worse, as mentioned in my last entry. He was doing ok in school but withdrawing himself from his classmates, and even from us at home. I don’t think he remembered the office, it had been a few years since the last time he was there. Craig and I talked with the dr before the testing began while max sat in the hall and watched the power puff girls on my phone. We try really hard not to sugar coat things, but I didn’t want him to hear all the things we were concerned about and think we were saying he was bad. He says worse things about himself than anyone ever could, we didn’t need to add to it.
The testing took 4 hours, which he powered through like a champ. He took one break to go to the bathroom but other than that was in there with the Dr. and the team behind the mirror recording his every word/movement. We talked to the Dr. a little after and expressed that even though we knew it would take a month before we got that final report, if there was anything we could do in the meantime we needed to know. We didn’t want to waste any more of max’s time if there were things we could do to help him feel better. He told us when we left to call the Lurie center and schedule an appointment with a psychiatrist there asap. That it could take a while to get in there so we needed to get started on that immediately. In the car on the way home we talked very little but I think we were both thinking, “He knows.” He knows what we are dealing with but needs to put all the pieces to the puzzle together before he can tell us anything. It’s so frustrating but we had waited nine months for this appointment, we could wait one more for the report.
So we waited. I cleaned out every closet as usual to keep busy. I talked endlessly about it with the few people I trust to not slap me for being crazy and annoying. When the day actually came, it was just Craig and I at the appointment. I felt a shift coming, walking in there like I did the first time we went for this meeting. The first time we walked in as parents of a little boy, and walked out as parents of a little boy who also has ASD. It is a big moment, for any parent. You put your faith that you have the right Dr., that they listened to everything that he said, that they understood what we saw at home and came to the right conclusion so that you know what to do after. That’s the whole point of all the diagnosing really. You learn what areas your child needs help in, so then you can bring them to the right people/therapies after to help them cope.
Anyways, we met and talked for an hour. The results were in, and they were that on top of ASD max also has ADHD and DMDD. Now, everyone that is not under a rock knows what ADHD is, and that was not a shocker at all. If you have ever watched max try to eat a meal or focus on things it is kind of obvious. DMDD was something I had heard of, that had been suggested in the past but that I didn’t know too much about. It is new. It used to be called childhood bipolar but it was changed in the DSM a few years ago because diagnosing kids as bipolar is really controversial. It is very heavy. Disruptive Mood Disregulation Disorder. That’s the name for the beast that lives in max that makes him so unhappy. It is hard to remember those letters so we have been affectionately calling it bipolar light.
So what do we do with all this? Its been a few months since then and I think it’s starting to settle in. We didn’t open arms embrace this like we had Autism, because we have a lot more questions that need to be answered. What does this mean for his future? Does it mean he will be officially bipolar when he is older, or will it change to some other kind of mood disorder later? Will he always feel unhappy like he does now? What are the risks when he goes through puberty later? I like plans, and I want to know whats coming later. There is no way to do this in life, but it feels more urgent in this situation. I just want to know he will be ok.
Since this initial day we have met with some really wonderful people who will be treating max going forward, and I feel a little bit better that we have them to call on with all these questions. Some of them have no answers because not enough research has been done yet. He will be starting with program at mass general soon that Craig and I will take part in also, and the school has really stepped up helping him too. He went from one social skills group a week to 3, they are working more closely on helping him talk and respond to his peers more, and when we met yesterday the school psychologist said she was going to make sure that max knew he could come and see her any time. He has an aba therapist now that comes once a week to work on things at home with him. He is on a new medication that we are hopeful will help him, because the next options are scary to me with all the side effects. We are holding steady, still swimming.
As much as things have changed, thing are still the same. Max is still unhappy and angry a lot of the time, but there are moments in between where the real max comes out and shines beautifully. I try to hold on to those moments, enjoy them for as long as they last. I still have to work really hard to remain calm and collected most of the day (mommy is now on meds too, finally) but I am trying my hardest. We are all trying our very best to keep swimming, because we love each other. We are a family and even when things really suck, we are still together. This is our life together, this is max’s body for his life so we all just have to figure out what to do and keep moving.
Autism Squared 