In the spirit of Autism Awareness Month, I have been reflecting on what having a son with severe autism has taught me. What have I become more aware of? How have I changed?
Patience, patience, patience. Patience through the meltdowns, patience through the temper tantrums, patience through the obsessions, patience through the routines. Sometimes, I have to remind myself to breathe and not clench my teeth (I’ve always done this, TMJ is the result). Sometimes I am incredibly patient. And there are times I am fall short. I tend to have my father’s temperament and my voice can be as loud as his (and his was pretty loud). I am not as patient as I want to be, but, I keep working at it. Much like Brandon keeps working through his challenges. “Patience, patience, patience” may become my new mantra during the hard times.
Brandon has severe autism. His verbal skills are very limited and his repetitive behaviors make socialization more challenging. The services available to those under the age of 21 are fairly good and available. That has been our experience with a few hiccups along the way.
Now that he is approaching that magical age of adulthood, we are very aware that those services will be going away. The therapies, the instruction, the support stops once they leave school. I am trying to be proactive, but I am finding “the system” hard to navigate and less than helpful. I just wish there was more empathy and understanding for our adult children who need these services to thrive and flourish.
I was raised by parents who liked to laugh. Especially my father. He would try to find some humor in every situation. It would help lighten the mood during stressful times. Steve and I try to do that as well. Brandon has his angry jumping when he is really mad. It shakes our house and stuff has been broken. A couple of nights ago, Brandon was angry jumping and the pants he was wearing fell to the floor. Steve and I cracked up. Because it was funny. Was it the right thing to do? I don’t know. What I do know is that when we laughed, Brandon looked at us, smiled, pulled his pants up and went to his room. The laughter certainly lightened the mood for all of us.
This one has been a bit more difficult. Learning to trust his teachers at school, the paras, the bus drivers, the support workers who come to our home, the therapists, the doctors. We have done this fairly well, in my opinion. At first, it is a guarded trust, but it can grow from there. The caregivers I trust the most are those who are honest with me. I don’t need bad news sugarcoated and I am not going to make excuses for my son’s behavior unless it is warranted.
A few years ago, I got a call from his teacher. This was a couple of months into the school year and Brandon was new to her. Brandon had been upset and ripped one of the paras jacket and then she apologized for having to call me. Ummm, that’s part of my job as his mother and I need and want to know these things. I told her that he will most likely do that again and he will rip his own shirts, too. I asked how much the paras coat would cost to replace. They wouldn’t let me do that. I could hear her relax. She was so nervous to call me and I assured her I know my son and his limitations. That was a great year!
Brandon saw his psychiatrist yesterday. It was a difficult appointment as we are still dealing with the Mario Kart obsession. It is better than it was five months ago, but it’s been five months. We are frustrated. The psychiatrist (who I trust) was fairly blunt with me. He told me that Brandon will most likely always have these obsessions. The topic of the obsession may change, but the obsessions will most likely continue. He reminded me that the obsessions and the jumping are calming for Brandon, even if it isn’t for us. And he is right.
When I think back, there have been times of obsessions that weren’t about Mario Kart. Steve and I talked about this last night. I wish I could take the obsessions out of Brandon, because it is so hard to watch him struggle. We are learning to accept that we can’t do that. All we can do is be here for him when he is struggling. And that is where the patience comes in.