Tracking and Feedback – How We Diagnose

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…

Secure Your Own Mask Before Helping Others

Having an autistic child can be exhausting and sometimes even a little soul crushing. Caleb doesn’t have the people-pleasing desires that usually fuels children to behave; while he cares about what we think of him, he usually acts before he thinks. Of course Caleb wants me to like him, so he usually recognizes bad behavior and asks for forgiveness after the fact. It isn’t personal; Caleb has problems with impulse control.

Usually when Caleb has a migraine, his impulse control is pretty much nonexistent. That is when I have those really bad days where you look at the clock and it seems to be running almost backwards. The days when you are white-knuckling it until bedtime.

I have found that on those days, I am also not at my best. I probably have a migraine as well, so dealing with a completely unruly child is stressful. In order to stay sane, I have to take care of me. There are a few things Caleb and I do in order to maintain our mental health.

Feelings Therapy: Caleb and I both go to therapy at the same practice at the same time. Once a week, we both take 55 minutes to work on ourselves. This is so good for us; Caleb is usually in a good mood after talking to his doctor and I usually have had a good cry and feel like a weight has been lifted off of me.

Timeout: Timeout can be a very effective tool when used properly. The most challenging part is finding a place for time out. I know a lot of neurotypical kids who are able to sit in a seat for 5+ minutes; this is not a reasonable expectation for Caleb. We tried just having Caleb stay in his bedroom, but we got into a smearing issue. (For those that don’t know, smearing is, well, here, you can read about it.) *gag* So, we ended up using the treehouse in our living room that has a removable ladder. It is high enough off the ground that Caleb will not jump out. And yes, he even once smeared in there and it took hours of scrubbing to get that sucker clean.

Now, we still use the treehouse, but we don’t take away the ladder. The rule for how long timeout should last is the child’s age plus 1; Caleb is 6 so he has a 7 minute timeout. During timeout, we do not engage with Caleb. In fact, this is when you go into another room, set a time, and spend 7 minutes relaxing, doing something for you. I will take the time to make some coffee or ice my neck. The point is, we need timeouts too. I have even given myself a timeout when I am overwhelmed; I will go into the bedroom and close the door. Caleb can live without being supervised for 5 minutes, and those 5 minutes just might keep me sane.

Exercise: Not only do you feel happier and stronger when you exercise, it also helps melt away the stress. A lot of my exercises are to strengthen my core, which is exactly what Caleb needs, so we exercise together. Another benefit to exercise is that Caleb is tired and calmer afterwards. For core strengthening exercises, I use this website as a reference.

Another good incentive for exercise is Pokemon Go. As a family, we have taken long walks downtown or at one of our many local parks in order to catch Pokemon. In fact, as soon as I am done with this post, we are going to downtown Farmington to Pokehunt. It is surprising how far you will walk without realizing it; walking is good exercise, but strengthening Caleb’s core is our priority.

Friends and Family: You need friends to talk to, and yes, cry with. Friends and family who understand our family dynamics are often very helpful and compassionate. I have recently decided to be completely honest with my friends about my life, instead of feeling like I have to sugarcoat everything to make people comfortable. Yes, the friends and family I depended upon before Caleb are completely different now. My husband’s parents are the most amazing people and I even use his mother as a guide for myself and my behavior. I have learned to lovingly detach from people who don’t want to understand Caleb and our life. Right now, I have 3 really good friends (not including my husband), and getting out of the house and hanging out with them seriously refreshes me. Sometimes I need to get away so that I miss my family and I really want to be with them. Cause, let’s face it, there are many times when all we want is just a moment of peace. We deserve more than a moment; we need hours. In order to have a social life, my husband and I work together so the other may go play. However, we are always back home by 7:30pm because bedtime rituals are super important.

Don’t Sweat the Little Stuff: I haven’t dusted my house in 2 weeks. Maybe 3. I swept a few days ago. Laundry is piling up, I have dishes drying that need to be put away, my bathroom floor is disgusting, and that is all going to have to wait. Having a super clean house is not even close to the most important thing in Caleb’s life. In fact, my husband and son would be perfectly happy living in filth. What matters is that I don’t kill myself trying to take care of everyone; that only leads to me being overwhelmed and cranky. That doesn’t help anybody. So, not stressing myself out makes me a better person.

My main motivation for my positive attitude is not only my health, but also Caleb’s. Caleb gets very upset when I am unhappy with him. Caleb doesn’t think about his actions until after he has already done them; this distinction is important because he really does want to be a good kid and make me happy. I have to remind myself this all the time. All 3 of us deeply love each other, and in order to excel, we need to remember to be kind to ourselves as well as others.