Super Power Dynamite...or Sensory Processing Disorder

For any of you that are regular readers of my blog (like my mom), you know that my daughter and I frequently struggle with each other. It has always been like that with her for the nearly 6 years of her life. In the beginning, I felt like perhaps we were just too similar. She had her early challenges, like the infant apnea and physical therapy to deal with her gross motor skills. And once she began to walk and communicate more around 18 months, thing did get better--she began to be happier, and I didn’t worry any more about autism, which I truly considered for a long time because she just did not respond to us with enthusiasm. She just seemed uncomfortable all the time.

When she was 2, she began to refuse to wear clothes. I know, I know--you’re thinking that’s totally normal! This is right about the time kids start learning to dress and undress--not unusual. But she would scream and have to be held down to put on anything. She was late to toilet train because she didn’t seem to ever feel anything in her diapers. She didn’t respond to physical punishment on the few occasions that I actually used it--instead, she asked me to spank her harder (and not in a smarta&% way). Her shoes were never tight enough. Not even when I tied them so tight they left welts on her feet and brought tears to my eyes. Her underwear itched, her socks felt bad. We buy the softest cotton knits for her to wear, and I am telling you I spend more on that child’s underwear than I do on my own. This blog is littered with other examples.

Last fall, following her 3rd move in less than 5 years of life, she developed a tic. No big deal, the doctor said. Just watch it. Not only did we have the move to recover from, but she was starting kindergarten, and her daddy was only around every few days or so and was deploying in October for the first time she could remember. It was a very stressful time.

This past July, the tic got much worse. So I began researching again. And there it was, this dysfunction that I’d read about many times before. But because it had the word “disorder” in it, it couldn’t possibly be my child. But tics and sensory processing disorder often go hand in hand...along with many other issues.

We requested referrals for both a neurologist evaluation and an occupational therapist evaluation. We also had a regular eye exam during those few weeks, her first official exam. And the optometrist was concerned that her vision (a sense!) was immature. She wanted to see her again in 6 months. I knew I was on the right track. In the meantime, she began school again and also began to get much more physical toward me. It was like she held herself together during school and then fell apart as soon as she got somewhere safe. So we began to see a psychologist as well.

I began doing some reading as we waited for our appointments, and I also began noticing things that I had never noticed before. When I volunteered in her classroom, I saw that during circle time, she flinched and wiggled every time someone accidentally touched her. She had trouble focusing more than 5 minutes at a time. She was the first one done with the academic work and then wanted to be up and moving.

At the OT evaluation almost 4 weeks ago, the OT said within 60 seconds that her core muscles were very weak. Ding! That was exactly what they had told us when she began physical therapy at age 6 months. Because she started walking and they released us from treatment, I think both her dad and I assumed she had gotten stronger. I had no idea that was why she hated gymnastics and balancing or swinging.

Of the 7 senses, she was normal in only 2, functioning in 3, and deficit in 2. We began weekly occupational therapy sessions, and I am already seeing results. We have also been seeing the psychologist weekly. What stinks about both these events is that I have to drive 100 miles round trip to get there and back.

We finally got in to see the neurologist last week. I had changed my choice of doctors because this particular fellow came highly recommended with friends in the autism community. He chatted with Olivia for a few minutes before having her do exercises. And I couldn’t believe what I saw. My child stood there and described to him how voices woke her up at night. She couldn’t find them, but they “were spying on her”. 

I had no idea. She had never complained about such a thing in the 15 months we’ve been living here, although it was common when she was 3 and 4 in our other homes. I’ve never been happy with the location of her room which was far away from ours, but we have a baby monitor for her to call us if she’s scared.

After she did some exercises, I was pretty shocked to hear the neurologist say that given her family history of anxiety and her father’s history of childhood tics, she was genetically wired to be predisposed to both issues...and she does have severe anxiety. And he recommended medication, as well as a sleep apnea study to be sure it’s not an oxygen thing that is making her hallucinate the voices. The tics were deemed compulsive and will probably just fade away over time.

I declined medication as I have myself taken those drugs, and let me tell you, they are strong. They change your personality, and not always for the better. I believe that medication has its time and place, and there was a 6 month period of time in my life that I would probably have died without them. But I feel that right now, between the changes we are seeing with weekly OT, the psychologist helping us, and her school developing a plan for her, we can start to make things better and delay the drugs for at least a while. We’ve also started letting her sleep on the floor in our room (not on the floor, in a sleeping bag with quilts underneath her!), and we’re going to try to let her sleep in the spare twin bed in Colin’s room. Kris and I both feel much better that she’s close by, and we hope that this will help her sleep better and be more peaceful.

So what do I think about all this? Sensory Processing Disorder is real. I know that other parents with pretty normal kids are going to not understand all this--how can you if you haven’t lived with it? But I assure you that we are highly educated and logical parents, and this is real.

We all have our moments of being extra sensitive. Lots of kids don’t like getting dressed or take a little longer to learn how to pump their legs on the swing. Sometimes, if I walk into a messy room, my eye starts to twitch. The difference is that with my child, her senses cause a disruption in her life, in our lives--from not being able to sit in circle time because the girl’s ponytail is brushing her arm to her underwear not feeling “right”, to not being able to feel how tight her shoes are, to needing to get up every 5 minutes to bounce on a trampoline because her neurological wiring says “Move! Need deep pressure stimulation”. Her eyes don’t travel quite like another kindergartener’s. Her sense of taste is highly developed, and she’s very particular about her food. She can’t snap buttons or tie shoes or zip up zippers. She gets tired and wants to lay down because her stomach muscles are weak. She hates sitting on carpet for circle time because it feels like sandpaper. These are just a few examples that are easy to relate to others, but understand that she and I are both frequently in tears over these issues. I believe that non-treatment over the last 6 years combined with our highly stressful military/home life and instability have contributed to her anxiety and stress. And I also think that dealing with her issues through therapy will allow her brain to begin to refocus a bit and let her be calmer.

And I also know that most of this isn’t new to me--I have always known. I can look at an outfit and instantly know that the elastic in the sleeves, the gathered pleats across the bodice, the button and waistband on the jeans will all drive her crazy. I know which socks to buy. I know that she needs a big transition period to switch activities. I didn’t know that what her body was screaming for was a deep massage or a “brushing” (which I’m already seeing great results from despite my irregularity with it). I didn’t understand that is was wired in her brain to move.

And I can now give her more understanding and instead of insisting on having it my way, or worse yet “Other kids don’t do this!”, I can hug her and say YES. I KNOW. I HEAR YOU. We have help and our family can start to get better now.

If you’re wondering about your own child, please feel free to contact me. I would be happy to try to help other parents get help earlier. However, if you send me a nasty or condescending email or want to disagree with me about childhood medication, it will only be printed out and used as toilet paper. Just sayin'.