It feels like we are finally coming out of winter. God willing, spring will be here soon and the sun will shine again. The winter of 2018/2019 will go down as one of the worst winters ever in our house. It snowed more than in recent years. School was cancelled. A lot. Brandon likes routine. He likes knowing what is coming next. Schedules are our friend and when the schedule is disrupted, it goes one of two ways. One, Brandon rolls with the punches and we create a new schedule. Or, two, he does not roll with the punches and it’s a day of trying to make the impossible happen. I, unfortunately, can not make the school be open when I want it to be (but wouldn’t that be great?). I also can not make snow and ice disappear so that he can go outside and jump or swing. This winter has been especially hard for Brandon.
Remember the episode of The Simpson’s where Bart and Lisa follow Homer around day and night asking him to take them to Mount Splashmore? If you haven’t, you must. As parents, we laugh because we know how that is. Our children begging us to go to McDonald’s until they just wear us down and we finally say “Yes, I will take you to McDonald’s. Will you then leave me alone and quit asking me?” So, off we go to McDonald’s and the kids are happy, the parents are happy and all is right with the world.
It works a bit differently in our house and this became evident this winter. Brandon has autism. He also has obsessive compulsive disorder, OCD. Brandon’s OCD manifests in his need for rituals. One example: after he is done eating he will say “Mom start”. I know that I am suppose to say “Did you have a good time eating your dinner?” He says “Yes” and I reply with “Say it once”. And then we move on. Everyone who lives in my house knows this is the ritual and that it helps Brandon transition to the next activity. This ritual happens many times a day with many of his activities. Going to the bathroom (yes, we have to ask him if he had a good time in the bathroom), eating, taking his medicine, going out with his support worker, etc. Telling him to “say it once” usually works well. And then there are the times it doesn’t.
Back in November, we started seeing the signs of a ritual spinning out of control. He became obsessed with the video game Mario Kart. Brandon has played this game for years. It was, hands down, his favorite. He would play the game daily for 20-30 minutes, we would ask if he had a nice time, he would say yes, and then we would do something else. In November, the moving on to something else stopped. He became more and more obsessed with the ritual of saying “play Mario Kart” instead of playing the game. So, in our infinite wisdom, we tried having him play the game every 2-3 days. We thought maybe that would help. It did not.
He became more obsessed and starting acting out physically. He would hit and slap us, generally targeting me. The obsession was still there, even though the game was gone and he no longer had access to it. Brandon would say “Mario Kart” all day long. Literally all day long. Playing the game no longer scratched that itch of OCD, it became all about the ritual. Brandon would follow me all over our house and get two inches from my face, all while saying “Mario Kart” over and over. He wasn’t sleeping because he was too busy saying “Mario Kart” (which also meant I wasn’t sleeping), he wasn’t eating (that has never been a problem for me), he wasn’t listening to his iPod or watching movies on the laptop. He was not able to focus on anything but saying Mario Kart. We stopped responding and he was not happy. This went on for 3 very long months (and remember that Christmas break was during this time so that schedule was gone, too). There were trips to the doctor, conversations with the school, conversations with the case manager, conversations with anyone who was willing to listen. It was a really, really challenging time and we constantly asked ourselves how long is this going to last. We were exhausted. All of us.
How did we make it through, because this was really, really hard. There were times when our oldest son would step in and tell me to go take a break. The youngest son would do this, too. They would stay with Brandon and let me leave the house for a bit to go to the store (any store, it didn’t matter to me). When Brandon was targeting me, Steve would take him out of the house for an hour or two, knowing her was going to hear “Mario Kart” for the entire time. I would hide in my bathroom and call my two best friends who would listen to me cry, even though they had no answers. We were there for each other because we all love Brandon.
My Facebook friends were also a support to me at times. Sorority sisters from college were quick to offer a “you got this” and other words of encouragement. Friends from high school who are very strong autism moms would send virtual hugs that I treasured. (This is why I love FB, by the way.) When it feels like it will never stop, never get better, never end, reach out to those who will listen, give you a break, or just come over to hang out when you just can’t leave the house. Because the dark times will, eventually, give way to light.
I now feel confident saying we are on the other side of this dark time. From this relatively short distance, I can tell you we did not handle some of this very well. There may have been yelling, crying, and cursing from all of us. Our level of frustration was just as high as Brandon’s. There is one thing we did do well, though….we held our ground. My husband, our other two sons, and I all agreed that for Brandon’s health, we had to stick to it. There wasn’t another choice for us. It wasn’t always pretty, but we held firm.
What compelled us to stick to it? The number one reason is that it is what is best for Brandon. And we kept telling ourselves that. While we still have times with the obsession, it is much easier to handle now. Brandon is able to stop himself more quickly than before. He is now sleeping all night long. He is eating and gaining back some weight he lost. And he is beginning to focus more on other things – his puzzles, his lap top, and reading some Little Critter’s books (which are great social stories). Today, Brandon walked over to me, sniffed my hair (his version of a kiss), and walked away. We are getting back to our normal.