One of the more frustrating aspects of Caleb’s autism is that he has a mental disconnect between his mind and body. He rarely recognizes pain; most of the time he gets hurt, he is more scared than feeling pain. I mean, this is the kid who, as a baby, never cried while getting his vaccinations. Of course, we have a pediatrician appointment today, and let me tell you, he is going to have an anxiety-feuled meltdown when the needles come out.
Because of Caleb’s disconnect, my husband and I track his behavior to find patterns. One pattern we recognized early on were his headaches. Headaches are very common for autistic people, but we still wanted to track and see when his headaches manifested.
We kept a calendar of when Caleb showed symptoms of head pain, such as squinting in bright room, preferring to lie down in a dark room, having bathroom accidents, and overall his behavior was chaotic at best and horrifying at worst. But, what we quickly realized was that the times and days Caleb was having his behavioral issues, my husband and I had migraines. We also were able to group Caleb’s behavior into 2 sections: minor headache or severe headache.
With the hunch that Caleb was getting migraines, we searched all over for a neurologist that works with children. Caleb was 2 and still mostly nonverbal, so he couldn’t tell us anything about his head pain. We called around and tried to find a neurologist for him; there were only 3 pediatric neurologists available in the whole state of Michigan and 2 of them required a diagnosis of migraines in order to see the doctor. I was floored – don’t you go to a neurologist to get diagnosed? Thank goodness for DMC and Dr. Sivaswamy. She listened to my husband and I describe how and why we thought Caleb was experiencing migraines, and in the end, she agreed with us. She started him on liquid Cyproheptadine, and we have increased the dosage to coincide with his growth. This preventative has proven somewhat effective, but not entirely. The only thing that seems to really help Caleb’s migraines is ibuprofen. We only give Caleb ibuprofen 3 times a month; any more than that, and Caleb could suffer rebound migraines.
Getting the right help for Caleb is tricky, because he can’t tell us the difference between what is and what should be. We have to use all of our tracking and feedback skills in order to make an educated guess as to what is going on with Caleb. For instance, he is currently starting to get anxious about things. Caleb will obsess over a fear, getting more and more worked up until he is in full-on panic mode with Caleb crying so hard he throws up. It isn’t good. As a mom, of course I want to protect him, and I want to make his life easier. I also don’t want to be a crutch. We have brought up his anxiety to our pediatrician and Caleb’s feelings doctor, but the feedback is the same: yes, he has anxiety, but there is no medicine that is safe for him. I worry so much about that amazing sponge of a brain because I want him to enjoy life and relax, but at what cost? Medicines of all kinds having lasting effects on our brain, and risking hurting Caleb is something I am not comfortable with.
Caleb has mentioned that he wants me to go to school with him. Even stay with him at school. I want to emotionally support him, but I also want him to be able to emotionally support himself. I keep on thinking about the goal of him being completely self-sufficient, but then I think, “um, he is only 6-years-old. I have clothes older than him. Pretty much everything I own is older than him. Maybe I can use kid-gloves.” I’m sure everyone has an opinion. Even in our own family, we disagree on what is best for Caleb. I don’t think that any one answer is right or better than another – I think that we just have to pick a strategy and be ready for push-back and unintended consequences.
Right now I’m still fighting with Farmington Schools to let me sit next to Caleb while he is tested. I seriously cannot understand the rationale. There is a teacher conducting the testing, so it isn’t like Caleb and I could cheat. Plus, if we did cheat, it would be totally obvious when he shows up for a class he is totally unqualified for. I am surprised that there isn’t a single ASD advocate who works for Oakland Schools. Oakland County is the richest county in Michigan, and yet they have no ASD advocate? 1 in 59 kids have autism (1 in 37 boys) and we don’t have people within the school system fighting for them? How is this possible? And no ASD pediactric neurologists in Michigan? I don’t understand how we are supposed to raise our ASD children without proper ASD support.
I want the very best for my child, and that means being his greatest advocate. I have to keep track of his behavior and adjust our behavior accordingly. I have to constantly be watching out for indicators of distress and then backwards engineer the cause. With Caleb’s migraines, we were lucky to have such a wonderful doctor who took us seriously. I am not sure why anxiety isn’t given the same kind of seriousness, but I have to find a way to help him. At the end of the day, it is my job to make sure that he grows up into an educated, self-sufficient, happy gentleman. Now if someone would just give me step-by-step directions on how to get there…