The last several months have been some of the most stressful of my life. The last several years have been the most confusing of my life. For the last three years I have known that my son is slightly different than his peers, and most certainly different than his sister. Though my husband and I have adapted to meet the needs of our son, it has still been a struggle. We adapted without realizing we were adapting. My son doesn’t like to wear anything but “soft pants”, so instead of fighting him to put on a pair of khakis for church, he’ll frequently show up in a polo shirt and sweatpants. It may not be the most appropriate outfit, but it’s what he will wear.
He used to crawl into my lap in the fetal position because he wasn’t comfortable in his environment; it was too loud. He once held his hands over his ears for the duration of a movie at the theater until his arms went numb. When the movie was almost over he stated that he couldn’t feel his arms. I guess I didn’t realize how long he had been holding his ears. We bought headphones for a concert that he was attending with us, we have ended up using those headphones in most situations to help him feel more comfortable. At school, at restaurants, and even at home. He’s had to wear them during bath time because sometimes the running water is too loud for him.
His meltdowns are extreme. He hits, spits, scratches, bites, throws his body to the ground, and tries to run away. We adapted by helping him with anticipation and transitions. He gets a 5-minute warning, then a 2-minute warning, a 1-minute warning, and then finally notification of whatever is about to happen. “In 5 minutes, dinner will be ready”. “In 5-minutes you need to take a bath”. “In 5-minutes we are about to leave the house”. But it’s never just “We are about to leave the house”. It’s “We are going to this place and we are going to do this errand, and this is expected behavior and unexpected behavior, and this is what you can do and this is what you can’t do”. We carry a “Waiting bag” with us when we go anywhere because it helps my son when he has to wait for anything….be it waiting in the check-out line at the grocery store, or waiting in the post office, or just waiting at the doctor’s office. Without the “waiting bag” he touches everything, jumps off the shelves, the cart, runs around only touching a certain sequence of colored tiles. He won’t walk in a straight line. He’s afraid of stepping on cracks, though I told him he won’t literally break my back.
We spent many hours at doctor appointments, spent countless time holding him down for blood work, given him multiple allergy medications, nose sprays, you name it he’s had it for his chronic sniffing, eye blinking, and throat clearing. It started when he was 2.5 years old. Allergy testing showed nothing. Medications and eye drops did nothing to change these symptoms. Seeing the ENT produced nothing significant. We just lived with these things and thought they are just who he is. Something he does.
We’ve struggled with toileting issues including urinary incontinence and chronic constipation. He’s been on multiple medications for that. Many doctor’s visits. GI clean outs, vitamins, pro-biotics, you name it, we’ve done it and it didn’t really change anything. I remember expressing my concern for him not gaining weight, his relative “smallness” and his thin frame, asking the doctor if there is something physically wrong with him to cause his constipation as well as his small frame. He had testing to rule out any gluten intolerance or food allergies. It showed no allergies or gluten intolerance. He’s been followed by the GI clinic this year, and though we’ve seen improvements, he still isn’t where he needs to be with his toileting progress.
He’s always been an easy choker, only at the age of 5.5 has that gotten less worrisome as it’s been a while since he’s needed the Heimlich maneuver. Every daycare provider or babysitter he’s ever had, I’ve had to warn that they need to watch him when he eats so he doesn’t choke on his food. The chronic sniffing didn’t help because he’d do it with a mouth full of food and aspirate food into his lungs.
His clumsiness has improved, but only recently. His “limp 1960’s protester” move has been exchanged for throwing his body violently to the floor rather than the slow limp slide to the floor that it used to be. He’s now able to walk down stairs without falling, but only one step at time. I swear this kid used to trip on air. He was constantly hitting his head, busting his lip, nose bleeds. We always said, “Get back up! You’re ok!”. He used to toe walk, but that was improved by buying hard-bottomed high tops. By the age of 4 he finally stopped toe walking.
It’s become apparent to us that he may not be like other children, as so kindly pointed out to me by a woman at the grocery store. When she asked how old my son is, I thought she was trying to compare him to her grandchild. No. She said to me, “He’s not normal”. I’m not sure what he was doing specifically that made her say that as he was just doing what he always does. Something that perhaps I was used to.
Over the summer I took him to his pediatrician for a sport’s physical. I asked about his possible sensory issues, and I was told that he appears more ADHD but that sensory issues can mimic ADHD and vice versa. He was referred to occupational therapy for an evaluation. In August he was diagnosed with Sensory Processing Disorder….but I still felt this didn’t explain everything that seemed somewhat “off” about his behaviors. As he got older, he didn’t “outgrow” a lot of the behavioral aspects of development that I thought would become less frequent as he aged. Much like my daughter and her tantrums as a 2 and 3-years old, my 5-year old continued to have problems that I would expect from a much younger child.
The occupational therapist suggested that we see an ENT regarding his sniffing and throat clearing. I told her we’ve already done that, we don’t know why he does it, it’s just something that he does, and I moved on with my day.
He started going to occupational therapy weekly. He misses about half a day of school if not more every week for therapy to help integrate his primitive reflexes, and to help with his executive dysfunction. We’ve all been taught about the “Zones of Regulation”, which helps him learn how to regulate and modulate his behavior when situations come up that maybe he isn’t comfortable with or perhaps occur not to his expectations.
It wasn’t until a month or two ago that the possibility of Tourette Syndrome was even mentioned to us. It was actually mentioned to me by a friend. Her suggestion caused me to research the symptoms and it’s like a lightbulb went off. Everything made sense but surely, I’m just crazy or imagining these symptoms in my son. I called his pediatrician and asked for a referral to neurology.
I was already in the process of having him evaluated by Developmental and Behavioral Psychology because my gut told me something was “wrong” with him, and I needed an answer.
The nurse at the Tourette Clinic did a phone interview and suggested that he be evaluated in the clinic. I asked her if I should still pursue an evaluation with Developmental and Behavioral psychology, and she said yes.
A couple of weeks ago (after a lengthy evaluation) my son was diagnosed with ADHD, specifically the Hyperactivity/Impulsivity presentation, which seemed to fit my son to a T, yet it still didn’t explain the eye blinking, the sniffing, the throat clearing, the repeating of phrases and words, the finger rolling, the shoulder shrugging, the head nodding. The many different things we’ve noticed that have only gotten more frequent as he’s aged. New things and continuing movements that have been there for 3 years, but haven’t gone away.
It’s been a long road so far, and this lengthy letter still doesn’t seem to fully explain how impacted we’ve been, how hard it’s been to know there is something different about your child but not knowing what it is or what to do it about. It’s exhausting to see the look on people’s faces when they are judging my son and me and my husband for what appears to be child who is spoiled, or not well parented simply by the way he is. The way that we’ve only known him to be.
And today, it appears to be an even longer road with some answers and some new things that don’t have answers yet. They may not ever have answers, but we were assured that we will not be left “hanging”. We will receive resources and support to help us navigate this uncharted territory for our family and for our son.
Today, my son was diagnosed with Tourette Syndrome, as well as an unrelated hypotonia. He needs an MRI of his brain to determine the potential cause of the hypotonia. Blood was also collected from him to use for genetic testing to see if there is a genetic reason for his hypotonia. Muscle enzymes were also collected to rule out any muscle wasting disease. Children with hypotonia often struggle with constipation as it also affects the digestive system. We were told he may always need medication to keep his digestive system functioning in a way that keeps him healthy. This hypotonia explains his clumsiness, his “limp noodle” move, his W-sitting, the way that he just melts into me when I hold him, the way that he needs help sitting up when going from a laying flat position. It all makes sense, but we are still left wondering why. We won’t know why for a while.
Though we have some answers that make sense given the vast symptoms we’ve seen, we are still uncertain about what the hypotonia means for him. We were told that we may not have answers and he just has an idiopathic hypotonia, which is the best-case scenario. The genetic testing can take 3-4 weeks for results. Though not scheduled yet, once the MRI is complete, the neurology clinic will wait until the genetic results are in before they inform us of the results from the MRI. Basically, they need both pieces of the puzzle before the can give us an answer.
This road has been exhausting. This road feels lonely. This road feels never-ending, but I pray for answers soon. I pray for relief, for respite… not just for me and my husband, but for my son, and even for my daughter. It’s affected our whole family. I know it could be worse, but for us, this is hard.
We’ve adapted and we will continue to adapt.