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.

Time on Task

Somehow, between June 18th and September 4th, my son changed. Some of the changes I could see unfolding right in front of my eyes; other changes happened instantaneously. Caleb is more self-reliant,  polite, controlled, and has dramatically reduced his defiant behavior. He walks with my husband and I without running off. He actually seeks out approval by asking to help me. I’m not sure what created the change, but I have some ideas.

First of all, for the first time, I made sure that Caleb and I did “study time” every day for about an hour and a half a day. I theorize that for Caleb to truly know something, he has to practice it for longer than his neurotypical counterpart. Caleb needs to strengthen his neural pathways with repetition, and once those pathways are forged, that information is locked in. (I want to say that I agree with those who say, “if you have met one autistic child, you have met one autistic child.” All I am say is how I see Caleb and how I respond to what I see.)

Another change we made was his token economy system. Instead of just earning stars which can be traded in for books from Amazon, we have allowed him to also save up cash; this money is then used for large trips with the grandparents, such as to the aquarium or zoo.

Finally, we started expecting more from Caleb. He now has to groom himself every morning; we help him, but he cooperates now. I mean, yes, Caleb is going to complain every time I brush his hair, but it is just a verbal complaint. No hitting, no screaming, no falling to the floor. He also participates in chores; he is in charge of picking books up and putting them away because otherwise the puppy likes to chew on them.

Whatever the reason, the change is incredible. It gives me such hope for the future.

I remember having to digest that I had a son with “severe autism.” We didn’t know if Caleb would ever speak, let alone be able to lead a “normal” life. I remember the tears and the fear and I just wish I could go back in time and tell myself that everything would be okay. Back when Caleb was first diagnosed, I read horror story after horror story about autistic children being violent and having to be institutionalized. I knew nothing about autism, other than it was a dream wrecker.

For those of you who are just going through the beginning stages of autism-acceptance, please take heart that it can be okay if you put in the work. There are many studies that show that the greatest indicator of success is time on task. Want to be the best piano player ever? Practice every day for as long as you can. Want to be the best writer, the best rollerblader, the best hot dog eater? Time on task.

Temple Grandin, who is a goddess, suggests that autistic children get somewhere between 20 – 40 hours a week in therapies. Obviously she doesn’t mean that a child go to Occupational Therapy 40 times a week; there are plenty of therapies we parents can do at home with our children. Everything from core exercises, to art projects, to playing games – every exercise has a lesson to learn. How to hold scissors, how to wait for your turn, how to follow instructions – all of these are important lessons beautifully hidden in fun time.

To be truthful, many of my attempts to teach Caleb have failed. It has been through sheer force of will that I have been able to get through all the rejection I felt and still try to help Caleb be happy and interact with the world. It is time on task for us parents as well; I don’t blink an eye when Caleb has a meltdown in public. I attend to his needs by sitting down next to him and telling him I love him (which is what he asked me to do when he has a meltdown), but I also do not give in and let him have whatever sparked the meltdown. I am loving but strict, and I believe you can be both. I am strict about him using the potty or eating well; that said, I don’t regulate his electronic time except for when it is electronics’ bedtime. For me, finding that balance has all been time on task.

I cannot speak as to how other autistic children work or feel or anything – I just know what has worked for Caleb and me. I hope that maybe what has helped us can maybe help others as well.

P.S. I am not a behaviorist, I just sound like it.

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.

 

Vision Therapy

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When Caleb was 5, he had a vision test as a part of his preschool; he did not pass. I let him wear my old glasses, and suddenly he could see the television. I hadn’t realized that he stopped watching tv because he couldn’t actually SEE the tv. I felt like the worst parent in the world.

I have a lazy eye that was corrected with vision therapy back in 1986 (yes, I’m old); I contacted my old vision therapist and asked him if he knew of any optometrists that specialize in autistic patients. He gave me the name of Dr. Dragoo who works out of the Sears in the Twelve Oaks Mall in Novi, MI.

Right away, Dr. Dragoo put all of us at ease. She could tell that Caleb needed glasses; his prescription was -2.oo in each eye. At first, Caleb was very rough on his glasses and broke them a lot. We were a little smart and got insurance on one of the pairs of glasses. This last time, we got 2 pairs and both got the insurance. Trust me, it is sooooo worth it. Because, honestly, Caleb can’t always control his impulses and I would rather set him up for success than have unrealistic expectations.

Dr. Dragoo also stated that Caleb needed vision therapy. It seems that at some age, children transition from touch as their main source of sensory input to sight being their main source. Caleb never made that transition. This is why Caleb feels the need to touch everything; he cannot just sit in his seat and take in the information. His brain doesn’t work that way.

Caleb goes to vision therapy once a week at Focus Academy. We also have daily exercises that we do with Caleb. That said, Caleb gets migraines, and we don’t make Caleb do homework or eye therapy when he has a migraine.

We have been going to vision therapy for about 8 months now and we have seen some amazing results. His vision did get a bit worse, but he was able to tell us, and we got him new glasses. We are also making sure that Caleb doesn’t stand too close to the television; it is important for him to pick an object to focus on and interpret.

For our family, the limitations of therapy are financial. We are only able to afford one appointment a week; if you are able to do more, I would. We believe that all kinds of therapy are extremely beneficial.