October: A Difficult Month

While Autumn officially starts in September, here in Michigan, we don’t start to feel the weather change until October. During October, we find our high temperatures drastically drop from 70 to 50 and it rains about half the time. The high temperature can change dramatically each day to the next, leaving a lot of with that “ha blah blah…” feeling. We feel tired, sluggish, blaming it on the grey skies and the sun setting earlier. However, there is more to it than that.

Some people are more sensitive to changes in barometric pressure than others. People with Fibromyalgia and arthritis will usually feel “flare ups” during weather changes, especially with low barometric pressure. Those of us with migraines are also very sensitive to changes in weather and weather patterns.

I have also found out that Caleb’s behavior follows these patterns. I have two theories that are not mutually exclusive:

1) Caleb is experiencing a migraine but doesn’t feel the pain due to the migraine preventative medication he is on.

2) Autism and behavior control can also be affected by changes in the weather.

This month has been a real struggle for Caleb. Our biggest fight is every day, 3 times a day, when we ask him to take his medication. He refuses to swallow pills, so we dissolve his medicine in Gatorade, even actually adding extra sugar or Gatorade power. We have tried so many times to “Plan B” the situation, and not just emergency Plan B either, and it is going no where.

Caleb is also in a huge defiance mode. He constantly is telling my husband and I what to do while insisting that he is able to do whatever he wants. I cannot figure how to get over this hump. It is so hard to fight every day, especially when my migraines have been as bad as they have been.

I know that I need to have patience with Caleb considering that he is dealing with a lot physically and emotionally. I also know that I need a vacation that includes hours of silence.

Teachable Moments

Homeschooling is not necessarily going as planned, but it has some amazing moments that would not have occurred if we just threw Caleb on to the conveyor belt of education.

First of all, Caleb mental health is a priority. He has good days and bad days, but he doesn’t know why. He doesn’t have the emotional intelligence to know what is causing him to feel upset; it could be emotional or physical, there is just no way to tell. Part of this disconnect is because Caleb is autistic. It is also because he is only 7 (he will be 8 in December). I think too often we treat our children like little adults, expecting them to be able to use rational thought like us. I am 33 years older than my son. I have to believe that in my 33 years of life, I have grown and learned a lot about myself. I am self-aware enough to be able to recognize if and why I am having a bad day. But then again, there are some days when I just feel punk, and I don’t know the origin.

Second of all, there are some amazing teachable moments going on in  our household that are not just about emotional awareness.

We watch AumSum videos on YouTube and learn about Earth and the solar system in a fun way. It is animated, so there is both verbal and visual information being stored in Caleb’s brain. Caleb learns well from videos, so he remembers what he watches and we talk about it later.

Yesterday, while making dinner, Caleb sat on a stool next to the sink and watched me thaw and then wring dry from frozen spinach. We talked about the tiny bits of ice and why they were there. We talked about plants in general and photosynthesis. We talked about what plants need to survive, and how some plants grow in full sun, part sun, or full shade. We talked about sandy versus clay soil and the importance of a proper pH. We talked about how the plant expands with water and then when we squeeze all the water out, it shrivels up. We compared it to the expansion and constriction of railroad lines that we saw in another video.

Caleb didn’t stay with me the entire time I was cooking, but he had the mental ability to have an educational talk with me at 5:00pm. When he went to school full time, he had no energy for anything else expect dinner and bedtime, and of course, playing on his electronics.

Caleb goes downstairs and codes in either Scratch or in HTML on his own computer. He knows that it is similar to what Dad does for a living (he is a software developer), so he calls it “work.” “I’ll be ready to talk with you when I am done with work,” he will regularly say to me.

Yesterday, the three of us played Monopoly Junior (which I highly suggest. Lots of fun, fast paced, and takes maybe 15-20 minutes to complete) and Caleb had no problem waiting for his turn to play. He was a joy.

This morning, Caleb was not a joy. So, I called the school and told them that he wasn’t coming in for specials today (specials include art, music, and gym). I don’t have to worry about Caleb’s attendance and I can let Caleb grow up a bit before I put neurotypical expectations on him.

I have been thinking a lot about my degree in Instructional Technology and how it has only been a stepping stone for my learning how to teach Caleb. I want to challenge educational departments in college to start thinking about special needs kids in every aspect of schooling. We know so much about how the neurotypical brain works, but when it comes to autism, we throw our hands up in the air and let the Behaviorists take over.

There is room for cognition and constructivisim in the special needs education plan. After all, Caleb is already motivated to learn what he wants to learn and how he wants to learn it. He has proven that using his methods, he can still be ahead of the curve. My job is protect that intrinsic motivation while making sure that he is also learning core curriculum. Other than that, when it comes to Caleb’s education, I need to learn to listen to him and let him be in the driver’s seat.

Why We Have Chosen to Homeschool

I have posted before about how it is difficult to keep on fighting with the schools in order for my child to get the education he needs and deserves. Over the past year, we have all jumped through many very expensive hoops, having him tested by psychiatrists and psychologists to get an idea of how smart Caleb is and if his behavior can be calmed with medication.

Finally, a year later, and we know from the WISC that Caleb is beyond genius. While taking the test last year, Caleb refused to finish the test and he still got an amazing score. We also have him on medications that have helped Caleb even out – that said, by 6pm, he is nutsos again!

My husband, Caleb, and I all thought that with his NWEA and WISC scores that certainly now Caleb would be offered differentiated education. Nope. We got no help whatsoever. They just asked us to take more and more tests, which didn’t make sense since they had enough information from two years of tests to determine Caleb’s ability. I tried to reason with Shellie Cole, and then her boss, Dr. McDougal. Alas, neither of them were willing to teach Caleb math and reading at a 7th grade level. At some point, all three of us were exhausted and our nerves were fried.

Now, I will admit that having the day free sans Caleb is nice, but it isn’t as nice as having a happy child. After having such family drama last year, I learned a lot about myself. It turns out, I don’t really care if Caleb graduates high school by the time he is 14-years-old like I used to. I just want him to be happy. And school makes him unhappy.

CalebFarmingtonLibrary

Caleb does go to school for 30-60 minutes a day for specials (art, music, gym) and therapy (speech, OT, social work). Caleb and I also regularly visit the Farmington Library and go to the Hands On Museum in Ann Arbor every Friday. At both places, he is able to have some autonomy and he can be “the leader.” He is able to interact with other kids as he pleases, but even just being around other people, he is learning to live in a world full of other people who expect certain behaviors (such as personal space). These are invaluable life lessons.

While Caleb is in school, I stay in the school office just in case there is a problem, but so far things have been going well. If he continues to behave while at school, that might actually give me enough free time to take the dogs to the dog park! I can smell freedom, and it smells like dogs.

I have a lot of spinning plates that I have had to put down in order to focus on Caleb. I don’t think he full appreciates how much of my freedom I have sacrificed, but I think one day he will. If not, I can always rely on my skills in Jewish guilt to torment him until I die. 🙂

 

Olde Orchard Pediatric Dentistry – A Review

Like most autistic kids, Caleb has always fought us on the tooth brushing. We tried when he was very young, but at that point, we had bigger battles to fight. We were trying to figure out why Caleb lost his language skills. Then came the onslaught of therapies, one after another after another. I was basically a chauffeur for my son and his many therapists. When I finally got home, my energy was dwindling, but still, we did even more therapy together. Families that are still in that circle of exhaustion have no time for precious teeth issues. I know it sounds crazy, but it is true; people who are on the outside looking in don’t understand the burnout that comes with autism.

Thankfully, Caleb is in a place mentally and socially that we can take care of his hygiene. That includes regular bathing (kinda regular), but also brushing his teeth and hair, and cleaning and moisturizing his face twice a day. Caleb has keratosis pilaris, so we use a Burt’s Bee’s facial cleanser and we are just now trying a new serum: Serious Serum.

When we first started brushing Caleb’s teeth, we noticed there was blood in his spit. We checked out his mouth, and yup, he needed a visit to the dentist. His pediatrician suggested we go to Olde Orchard Pediatric Dentistry, and I am so glad that we did.

When you first enter the building, you notice how airy the waiting area is, with a domed ceiling and tons of natural light streaming in. In the middle were these large tree booths that were comfortable, but also gorgeous.

To the right was a smaller waiting room with just chairs and books. To the left was another small waiting room, but this one had a large flat screen television mounted on the wall, interactive toys, and Duplos, as well as more children’s books. Everything was clean and well taken care of.

Caleb had a meltdown the whole ride to the dentist, and then while we were inside the waiting room. The staff didn’t bat an eye – they deal with autistic children on a regular basis and know how to deal with the kids. The staff offered help when I was at the desk, but they let us deal with Caleb until we asked for help. It can be tricky for people to know what to do, but they were really good about knowing when they had an opportunity to help; when the receptionist heard that Caleb loved My Little Pony, she jumped up and put the My Little Pony movie on the television.

Caleb was still crying and whining as we were greeted by the dentist’s assistant and led down the hallway. I have never seen a prettier hallway. Seriously, they even had beautiful wooden tree cutouts with the room numbers on them. Each room has two doors, one for us, and then a slightly smaller door that the assistant and slip in and out of.

We were greeted by Dr. Maxwell, and she was totally chill. She knew how to talk to my husband and me and then how to talk differently to Caleb. She let him touch almost everything, and explained what she was doing as she was doing it. Within minutes, a previously scared and crying Caleb was happily lying down with his mouth open while Dr. Maxwell did her exam.

First of all, they are gentle. Even better: they are super fast. Dr. Maxwell knew how much to get done in a single session in order for Caleb to have a somewhat enjoyable experience; the last thing we want is for Caleb to hate the dentist and dig his heels in even farther.

Not a problem.
Caleb actually asked to stay. He didn’t want to leave the dentist.

Yes, Caleb has cavities, but I didn’t feel judged. I feel guilty, of course, but I also know that I am a good mother and I try really, really hard. Like, really hard. I also didn’t realize how easily Caleb can get cavities; my teeth have extra enamel on them so while they are a little yellow, I have never had a cavity in my life. My husband, however, has worked hard to keep his teeth in good condition, but he has cavities as well.

Dr. Maxwell created a schedule for us in order to come in so that Caleb can have his teeth treated. We opted for 4 short visits using Nitrous Oxide so that Caleb doesn’t feel pain and is more compliant.

After Dr. Maxwell finished her evaluation, Caleb was able to pick out a gift. He chose a righteous mustache that made him look like Mario, so he was over the moon.

I am really thankful to have found a dentistry that knows how to take care of autistic children. I would recommend Olde Orchard to any child, autistic or not; there were plenty of neurotypical children around us.

Olde Orchard Pediatric Dentistry is located in Novi, Michigan, near the Sears at Twelve Oaks Mall.

*Note: I did ask for permission to take photographs of Caleb and Dr. Maxwell during his visit. I also asked if I could review them. They were very supportive, taking a minute to hide any patient data so that no HIPAA violations occurred. I did not receive any compensation for my review, nor was it swayed by anyone.

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.

 

Hands Are Not For Hitting

When Caleb was between 2 and 3, he started hitting my husband and me. At first, it was intermittent and not really bothersome. Then came the smacking, the punching, and the pulling on hair. We tried so many interventions: token economy, time out, books about hitting, talking about hitting. reminding him that hands are not for hitting when we think he is about to hit.

This is where my post is going to take a turn you probably didn’t expect.

My son hitting me made me realize that I was not over the physical and emotional abuse that I survived from the time I was born until I was 18. In retrospect, the emotional abuse remained a part of my life until just a few months ago when I told my family I don’t want them in my life.

I am a survivor of childhood emotional and physical abuse.

As a youth, I attended Al-Anon meetings and therapy, and there I learned about the probability of me turning out like my mother or father. My father was an alcoholic and drug abuser (everything from pot to methadone), so I had a high probability of becoming an substance abuser; but I was also likely to become a physical and emotional abuser as well. The idea of becoming my father is probably the greatest fear I have had my entire life.

When I was 21, I adopted a cat. I thought that the first step toward trusting myself as a parent was taking care of a pet. I adopted an adorable orange tabby named Murray. He was 4 at the time, and all I was told was that he was given up because his owners had a baby. But, that wasn’t the whole story. I would be holding Murray, petting his head, and we would be purring up a storm when suddenly he would scratch the heck out of my face, arms, and chest. He would freak out on me and, because I had tiny knives cutting me, I pushed him away from me. This happened again and again for a month. Finally, after recognizing that this wasn’t working, I came to the difficult conclusion that I would have to have Murray declawed. After his procedure, Murray would attack me, but I knew it wasn’t going to hurt; I was able to just soothe him and not react as he went ballistic. It was the right choice, because after a couple more months, Murray completely stopped having freak outs. He became my best friend for 16 years until he passed away on December 30th, 2017.

After I was comfortable being a mother to Murray, I adopted another cat. I knew that Murray was lonely, so I got Mina from the local rescue shelter. She was beautiful and tiny and didn’t know how to make a crying sound until she was 3. Murray and Mina loved each other, however I pretty much just put up with Mina. She was a bit evil; she would wake me up in the middle of the night by climbing onto my nightstand and turning off my cpap machine. However, I never hurt her either.

A month before my husband and I got married, we decided to get a dog. Because we knew we wanted to have children (and because that was the kind of dog my husband had growing up), we chose to get a Golden Retriever. We found this amazing breeder in Essexville – the dogs were gorgeous and the family had 4 children who would also handle the dogs. These dogs were all so well behaved and loving. That is where we chose the Light Pink Girl (the color of her collar), Penny.

Again, with Penny, there was no hitting. We would dominate her if she got too rowdy, but really, again, it all seemed so fine.

Fast forward to me, 36, with two dogs and two cats, and I was having to suppress this almost natural reaction to hit my child back. I was horrified with myself. When Caleb stop hitting, I thought I was okay. But I wasn’t.

It wasn’t until January of this year that I vowed to never lay my hands on anyone again. This was harder than I thought. I realized I still had issues. Okay, fine: I had more issues than a newsstand.

Caleb and I started going to therapy at the same time, but we each see different therapists. And I can tell you, Caleb and I are both in a really transformative part of our lives. Caleb is suddenly a brand new person who actually cares about pleasing others, especially his mom and dad. He is smart, driven, creative and happy. He has basically the entire basement and he calls it his “safe space.”

Caleb and I also grew really close this summer. That is when I started thinking about my childhood. I don’t understand why I love my child in a way that my mother and father didn’t love me.

My therapist has diagnosed my father as a sociopath. He was evil. But my mom knew what was happening at home. In a conversation with her over the summer, she posed me this question: Should I have broken up the family and left your dad? That implies that the family was not broken with me being abused.

After my father died, relative after relative came up to me and told me how sorry they were that my dad hurt me. They saw it happening and did nothing, and now that he was dead, they felt freer to talk about it? That is the thing – my abuse was not private. I was often hit in grocery stores. I was hit at family events. I was hit in plain sight of my mother and sister. I even told my school psychologist that I was afraid to go home; I was 7-years-old and nothing happened.  Nobody protected me.

I am learning how to let go of the past. It isn’t easy. Like I said, I’m still trying to make sense of a situation that will never make sense. There will never be any logic as to why I was hurt.

The last email I got from my mother was about her next vacation to New York and working on her sewing hobby. She and her husband are rich, and they don’t help us at all with any of Caleb’s medical bills. My son isn’t even allowed in their home because they don’t want him touching their stuff.

Seriously.

Caleb cannot go into my mother’s home.

I don’t want to go back down that rabbit hole with my mom where we all pretend that everything is okay. It is not okay. I finally have real unconditional love in my life, and it is amazing. I am so thankful for my husband, my son, and my husband’s family.

I’m now 39 and an orphan, which is strangely liberating. I am scared because I have hung on to my mother’s scraps of love for so long; letting go because I deserve better is the only option.

So I broke the pattern.

My mother, who doesn’t like emotions, was raised by my grandmother and grandfather who also didn’t like emotions. My grandpa used alcohol so avoid dealing with anger. Same with my dad’s dad. There was coldness and distance and alcohol abuse.

And I broke that pattern.

Every day I make sure that I tell my husband and son that I love them. And I love them unconditionally. I tell Caleb that he isn’t bad, he just made a mistake. I tell Caleb how excited I am to see him when I pick him up from school. I give him hugs and love on him, but also allow him some private time. I push him academically because I know that he is a smarty-mcSmarty-pants. I say “I,” but I should say “we.” My husband is right by my side, giving him love and stability; my husband is the rock, I am the fire. And together, we work. We make sense to each other and know how to treat each other. We give each other the benefit of the doubt and strive to meet goals together.

I am a better parent than my mom, dad, or sister. In fact, right now, I am kind of crushing it. (I know, have some humility.) We have a new puppy that bites, and I don’t get angry at all. Yes, I still go to therapy and I still need therapy. I am a flawed individual who has overcome a lot to be in the happy, stable place that I am today. I broke the pattern. And that means something.