Today, as we watched our son attempting to keep up with the other kids as they ran across the church lawn, all dressed in various super hero costumes, my husband leaned in close to me and whispered: “I love our boy. He’s so special.”
I had to agree. Our little boy, just turned four, is incredibly special and is determined to have fun despite the things in life that hold him back.
My last post touched on the fact that my one year old daughter has been diagnosed with Spinal Muscular Atrophy (SMA). She cannot walk, or crawl, or do most of the things we all take for granted. She is determined to live life despite the odds as well.
My son can walk and even run, albeit rather slowly and awkwardly. He is a really cute looking kid and very intelligent. At a glance he looks completely “normal”. His battle happens out of sight for the most part.
My little boy has something called Sensory Processing Disorder (SPD), a condition related to his Ehlers-Danlos Syndrome (EDS). EDS makes his joints loose and his muscle tone low, hence running, jumping and generally keeping up with the other kids is hard for him. We cope with this, and we generally cope with it quite well. He wears orthotics and we see an Occupational Therapist each week to work on his fine motor skills like cutting with scissors, writing and drawing. SPD is the real struggle and it’s a disorder that doesn’t get a lot of press.
SPD Australia writes that, “people with SPD misinterpret everyday sensory information, such as touch, sound and movement. They may feel overwhelmed by sensory information, may seek out sensory experiences or may avoid certain experiences.”
For my son, the world is a very full-on place. He can’t cope with loud noises like the vacuum cleaner and he freaks out at the sound of a dog barking. He can’t stand anything he considers “hot”, so food has to be basically room temperature and his bath water needs to be tepid so that he doesn’t freak out. It took a long time for him to be able to go into water at all and he is still very nervous of the beach and can’t cope with water on his face. He struggles with toilet training and with knowing when he’s hungry and thirsty. Overly bright rooms make him freak out and parties send him into sensory overdrive.
Some days can be really tough.
He’s an emotional kid too and the smallest things can set off a melt down because he perceives the emotions of others and interprets their actions and then his brain magnifies them and he experiences all of that emotion and has no way to let it all out.
I have to remind myself quite often that despite his intelligence he is only four years old, which is very young, and that he needs to be treated with a great deal of empathy and gentleness.
Now, this isn’t a blog of self-pity, it’s a blog of ideas and I am on a mission to raise awareness of SPD. I’m not necessarily a fan of labels but I’m definitely not a fan of people interpreting my son’s behaviour as “naughty” or “acting up” when really he’s in sensory overload and can’t regulate his behaviour due to unwelcome stimulation.
So, how do I do it? How do make people more aware of what life is like when you have SPD?
My first idea is to simply tell people, up front, that his behaviour is due to SPD. I think I need to make a pamphlet to give out, informing people of SPD and what it means for my child. Of course sometimes it isn’t appropriate to go around telling people all that information and then forcing a pamphlet on them so my second idea is for a couple of t-shirts with the words Sensory Processing Disorder printed on them in big letters. That way people can ask me about it and then go away and do their own research.
My third idea was write this post, letting people know a little more of what life is like for people who live each day in the sensory minefield of SPD. Check out the website www.spdaustralia.com.au for more info and feel free to ask questions.
My final thought for the night is that raising a child with this condition has made me more aware and understanding of the behaviours of others. Some days my son can be very challenging and if I am not at my best I can lose my patience with him. On those days I need to give myself a time out with a cup of tea and a sweet biscuit.
Before I had kids I thought that ratty kids were the result of bad parents or were just bad eggs. I thought the parent who lost patience was just an angry person who needed to remember to put their child first. I thought the kid who collapsed into a “tantrum” at the shops or a party was undisciplined or being manipulative. Now I know better. Now I think, “maybe they have SPD too.”
I don’t use the word tantrum anymore because my son isn’t “throwing a tantrum” he’s having a melt down and he can’t help it and I find that if I treat the “tantrums” of others, children and adults alike, I don’t get as annoyed with people and I have more empathy.
My son eventually caught up with the other kids, his superhero cape streaming out behind him and his winning smile lighting up the garden. He didn’t come in first but there’s a good chance that he was the happiest kid out there. He felt the wind on his cheeks more strongly, the thrill of the race more fiercely, the desire to reach the finish more powerfully. He felt the joy of running with a keenness that many people never will.
My son has Sensory Processing Disorder and it does cause a fair amount of disorder in our lives but it’s also one of the things that makes our little boy special.
And I feel that his empathy is his greatest asset.
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