Michigan Autism Conference, October 11-12, 2018

I know that I said that I was taking a break from the blog because of personal issues, but I am just bursting with ideas.

I was recently in Kalamazoo, Michigan, for the Michigan Autism Conference, and I learned a lot.

First of all, I have learned that every field struggles with their own definition. If I have to listen to one more “what makes us a field” discussions, I am going to rip of my ears and beat someone with them.

At every conference, no matter the field, this comes up over and over again. For a field that is based in behaviorism, I find it odd that there aren’t some strict descriptive and prescriptive behavioral objectives that can be tracked and continually evaluated.

Secondly, everyone loves to talk about sex. It was a popular conversation topic when I was 16, and now at 39, it is still endlessly interesting. The BEST speaker was Dr. Stein on Sexual Expression. She was a very engaging speaker as well as extremely intelligent. She didn’t miss a beat during her presentation; it was obvious that she has worked in her field a long time.

I learned that I am engaging in behavior that will probably have negative consequences down the line. For instance, I have not properly established boundaries with my son. I use the bathroom with the door open. I have always done this because either I had to keep an eye on Caleb or he would have a meltdown if he were sequestered from me. Unfortunately, I have been confusing “closed door behavior” and “open door behavior.” Taking a bath, for instance, should be a “closed door behavior.” He should have privacy, but alas, my desire for his safety has put a hindrance on another part of his life.

I also need to give him the space and time to be alone with his body. He needs to learn about his body and what he finds appealing or rewarding. I mean, boys masturbate in utero, so why shouldn’t they be able to touch themselves when they are older and more self-aware.

Also, children identify with their chosen gender by ages 3-4. To me that is crazy that my son already knows if he feels like a boy or a girl. Also, biologically, women are bisexual. There are so many aspects of this particular domain that are overlooked because the conversation makes us feel uncomfortable. I mean, do any of us relish the idea of explain the birds and the bees to our children?

Thankfully, I have done one thing right: it is important to properly identify your child’s body parts and use the correct terminology: vulva, vagina, penis, and testicles. I have used clear and simple language to explain bodily functions, including po0ping, eating, and menstruation – why would sex be any different?

Thirdly, there is a need for autism advocates. It is not just the autistic children that need attention, it is the family of autistic children as well. The field has a really high turnover rate because while the field can be rewarding, it is also very difficult. It is important for ABA therapists to take time for themselves and be able to relax. This allows for a mentally healthy worker who is refreshed and ready to put in the work.

I learned about The Healing Haven. There they are doing some of what I would like to do. I want to teach parents how to play with their kids. I want to reach out to diverse communities who may not have the access to child care that other communities have. It may sound funny to have to teach people how to play, but not every culture values play. Growing up, my father would only play Connect 4 or Checkers with us – he had no idea how to be silly and play with us. He never got on the floor and rolled around with joy.

There are many parents who want to raise little ladies and gentlemen, and if it works for their family, than great! But, if it isn’t working, finding a new strategy for play as an adult can seem completely foreign. For the sake of autistic children, we need to stop worrying about whether or not they see an adult as an authority figure, and worry about the adult and child connecting on a deeper level. And that connection is best made through play.

The MAC was a fantastic experience, and I was able to go through the generosity of ASK Family Services which awarded me a scholarship for free entrance to the 2 day conference. I have more thoughts, but for now, I’m thinking about Lloyd Rieber at University of Georgia and Serious Play.

 

I Forgot How Hard I Have to Fight

It is only the second day of school, and I am already getting push-back from Lanigan Elementary. I just called the Farmington Schools Special Education Supervisor, Shellie Cole, because Caleb’s teacher is making him do first grade math; we finished first grade math over the summer. So, now I have to fight for him to be treated as a gifted child as well as fight for his rights as an autistic child.

Why isn’t there a Special Needs Advocate in Oakland Schools? This should not be happening. Right now, Caleb is being punished for being so productive over the summer. And when Caleb is bored (which will happen if you ask him to do simple math) he acts out; Caleb needs the stimulation of thinking in order to stay on track. If it isn’t challenging for Caleb, why make him do it?

Plus, yesterday, on the first day of school, the administration started giving us a hard time at drop-off. Yes, parents are not supposed to get out of their car in the drop-off lane, but my husband was driving and Caleb and I hopped out. Why? Because there were no handicap spaces available and the parking lot was a) completely full, and b) a nightmare with cars going in the wrong direction just to find a place to park. Caleb cannot walk through a crazy busy parking lot while I’m carrying in a ton of school supplies. Why? Because we have to provide all of his food and snacks and whatever comes up because he is gluten-free/casein-free; if we didn’t supply the extra snacks, the school wouldn’t provide safe food for him during snack time or special celebrations. There is a kid in his class with a severe nut allergy; NOBODY brings anything in that has even been processed with nuts. My son’s response to gluten and casein is not life-threatening, so they don’t really see it as important. Caleb has regularly come home with a note saying he ate an Oreo or something.

1 in 37 boys have autism. Why aren’t we coming together as a force to be reckoned with? Why do I have to call administrators and talk to a zillion random Farmington workers and educators just to make sure that my son is given his proper education?

My son has the right to the kind of education that is responsive to his needs. My son has a parapro; it is not like it would be difficult for Caleb to do his own challenging work while other kids do theirs.

I forgot about all this hassle. I forgot how everything is a fight.
I hate fighting.
But I have to fight.
If I don’t fight for my son, who will?
Definitely not Lanigan. 😦

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…