When the boy was born, he just came out “weird”. Don’t get me wrong, he was crazy cute, really happy and for all intents and purposes, perfect. But something was wrong. We didn’t know what, but we knew that something inside of him wasn’t right. He never seemed to settle. He was always fidgety and squirmy. You could see that he was physically uncomfortable when he ate. He was a terrible sleeper. He freaked out when we covered him with a polar fleece blanket. And for lack of a better word, he was “weird”.
Then he started getting sick. He would get RSV or pneumonia an average of 6 times/year. The first time was at 3 months, and it marked the first of our innumerable trips to the ER. It took years to figure out what was going on in his little body, and I’m happy to report that overall, his health is much better now. He still has bad days, but the space between them get farther and farther apart. For that I am so very thankful, but that is not what makes my little boy special.
I remember sitting in our pediatricians office discussing the quirks that made my boy tick. After much questioning and deliberation, he said the word that I didn’t want to hear. Autism. I said No, I want to explore this farther. I never truly believed that he had Autism, so I didn’t accept the diagnosis. I went home and started doing a bunch of research on my own, and began to piece the puzzle together. In the meantime, we continued to track everything that was going on with him, the things he said and/or didn’t say. The weird little games he played, and the ways he would seek out attention. Everyday we’d spot something new and would wonder how we could help him cope better.
We returned to the Doctor and learned that he too had researched and found some answers for us, answers we could live with. My little one’s weirdness finally had a name. Sensory Integration Dysfunction and PDD-NOS. Pervasive Development Disorder – Not Otherwise Specified. (How’s that for a mouthful)? Looking back, I really don’t know why I was so desperate in not wanting it to be Autism. It wouldn’t have changed who he was, or how I would help him adjust to the world around him. He still would’ve been my little boy. Autistic or Not.
Once we knew what was going on and that we didn’t need to be scared or worried, we just learned how to deal with this new “sensory processing disorder”. Here’s a great definition taken from http://www.cornerstonepediatriccenter.com/Therapy.aspx – Sensory Processing Disorder (SPD, formerly known as “sensory integration dysfunction”) is “a condition that exists when sensory signals don’t get organized into appropriate responses.” When these signals aren’t efficiently processed the brain has what amounts to, a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively. In shorter, simpler terms, he would either be over-stimulated or under-stimulated. He couldn’t “feel” like we could, so he would constantly seek out strong, heavy touch. He would cry or freak out when he had to wear different types of fabrics. He couldn’t handle being in loud, busy settings. Flashing lights and unexpected noises would push him over the edge. Basically, our normal, was abnormal for him.
We quickly learned that we always had to look before we sat down as he was always trying to get us to sit on him. (He loved deep touch). We discovered that grocery stores were almost more than he could bear. (I wrote about that here). He wasn’t able to eat any food with texture without throwing it up on the table. He loved lining things up. There would be rows and rows of cars and toys all over our house. When he started talking, he would refer to everything as to what they did and not what they were. Airplanes were flies, Cars were drives, etc, etc. He was incredibly sensitive, and was scared of almost everything. Toothpaste made him throw-up. He couldn’t play outside in the sun without being in physical pain. He was the sweetest, most kind-hearted little boy who ever was.
Once we got used to all of his weirdness, we were able to give him a “sensory diet”, which improved his life greatly. He loved to carry our big heavy bags of groceries to the kitchen. When we ran out of bags, he would carry big heavy paint cans around the house. He slept under a heavy weighted blanket at night, and wore a heavy “superman cape” during the day. When we went out, he always wore a ball cap and sunglasses. When we were finally able to convince him to try going to a movie theatre, we went with a ear-flapped toque and a hoodie over his head. We learned about dry skin brushing, and playing the drums on his back. When he was having a really bad day, we’d wrap him up as tight as we could in a blanket and rolled him around on the floor. He used to always tell us that he was itchy, and once we figured out that “itchy” meant something was hurting him, or he was over-stimulated, life got a bit easier. Everyday really was a new and fun experiment in learning for all of us.
The boy is now 11, and is doing incredibly well. As soon as he was able to put his “feelings” into words, he started to get some relief. He is still very sensitive, and very literal. We have to watch how we word our conversations with him. We can’t say the “sky is falling”, as he’s going to go and check. He has an incredibly strong sense of justice, and will always defend the underdog, sometimes to his own detriment. He’s learned how to separate himself from crazy, loud and uncomfortable situations. We’ve figured out the situations that he needs to avoid. He’s terrified to go to Disneyland, not because of the rides, but because there’ll be so many people there. We can’t raise our voice when correcting him without causing a full meltdown. We still have to get the tags out of everything he wears. He still gets “itchy”, is super light and sound sensitive, he hates being tickled and is very easily overwhelmed. BUT …. I’m happy to report that he is now able to go on school field trips, without throwing up. He is able to go on sleep-overs at his friend’s house without being terrified. The overwhelmed tearful bouts are happening less and less often. He can wear sweatpants, 3/4 length sleeves and long socks. He is able to be exactly who he is, and he’s pretty awesome.
If you’ve got an SPD kid or work with one, I don’t say these things to scare you but to give you hope. There is light at the end of the tunnel, and there will be change. Listen to your little one and try to figure out what their words and actions are really saying. Don’t be scared to think out of the box and try crazy things to help calm your child down. Don’t get caught up in the funny looks from the passers-by. Get ready to fight for your child in the classroom, at the doctor, in playgroups, etc. SPD is hard to explain, but come up with words that other people will “get”. I found that once I could explain things, people became more comfortable with him. Do everything in your power to make your child feel safe. Most importantly, hang in there. Take time everyday to laugh or cry or scream or whatever you need to do. It’s hard to watch, and it will break your heart. But I promise you that your child is going to teach you lessons that no one else could. He’s going to give you patience that you never dreamed possible. He is one of your greatest gifts. Enjoy the quirks and weirdness for what it is … you’re going to laugh just as often, if not more than you cry. Trust me, you’re both going to be okay.
And before people freak out on me, I don’t think my son is weird. I don’t think SPD is weird. I just know that when our journey began … it was the only word I had that summed him up perfectly. By speaking that word out loud to his doctor .. his journey to healing got the push-start it needed. “Weird” set us free.