I’ve learned to follow my gut instinct over the last five years and it’s never failed me yet. Over the last 15 months, my gut has been telling me that my 4-year-old may not be as high-maintenance as I thought, and that it runs a lot deeper than just being a sensitive soul. Maybe my gut has been telling me a lot longer than that, but I was in denial.
That’s the thing about the term “special needs” – you’re accepting of everybody else’s children under that definition, but it can be harder when it’s your own children. It’s hard to accept that life is never going to be “normal” by society’s standards. It’s hard to embrace it.
I admit I struggled when I realized my child may have sensory processing disorder (SPD) and some autistic traits. My child? No, not my child; yet he ticked every box! Things started to make sense. He wasn’t just sensitive, he was overloaded and couldn’t cope. They weren’t tantrums 40 times a day, they were meltdowns from sensory overload. He wasn’t sniffing everything just because. He wasn’t repeating everything to be rude, it was echolalia. He wasn’t being awkward about his clothes being just right. He wasn’t being naughty when he had a screaming fit because plans changed. He wasn’t being silly about refusing his nails being cut. He wasn’t just sensitive when smells made him cry. He was overloaded. His senses are literally in control (or out of control) of his every thought. This breaks my heart. I can’t fix it. His momma can’t fix it.
How as a momma did I not know something was wrong? I’d have done things so differently. I would’ve been more patient. I wouldn’t have made him have time-out for every meltdown that occurred. I wouldn’t have yelled when he wouldn’t try a new recipe. I wouldn’t tell him he was rude when he wouldn’t acknowledge people or say goodbye. I could kick myself now looking back. How did I not know?! But life is too short for regrets.
I was in denial for a long time. I was grieving the life I thought I’d lost, but I was wrong. Nothing has changed, except my knowledge and recognition. This is the life we have, my boy has. He’s not defined by a label. His brain may be wired a little differently to the average person, but that doesn’t make him weird or less of a person. As soon as I accepted that, we were able to approach things differently.
I think when our children are diagnosed with disorders we, as parents, are often so worried about the stigma attached to those disorders that we’re the ones with the actual problem. We fret so much about what others think that we often do more harm than good. We have to accept the circumstances ourselves, and once we do, nothing will hinder our perception of the disorders.
After researching SPD, I understood more and more about the challenges my boy was facing, and I became prouder by the second for his accomplishments. Daily life is overwhelming for him sometimes, but he tries so hard. Even simple tasks such as getting dressed are big accomplishments. I find myself begging the Sock God to be kind and not make the seams irritating today; I hold my breath when labels meet skin. The thought of asking to trim his nails sends shudders down my spine. I’m constantly holding my breath waiting for the next reaction armed with calming words and cuddles.
I try to be as patient as possible. That is a key factor with SPD. Anxiety levels are already on the edge daily, and an impatient momma will not help. I’d like to say I’ve perfected this, but that would be lying. Some days I yell. Some days I cry. Some days I feel mentally exhausted. Some days I feel like a crap mom.
Not a second goes by that I’m not planning the next moves around the sensory needs of my child. It’s a never ending job and my mission is to avoid meltdowns at all costs. Sometimes that means staying home all day, or spending days speaking about upcoming plans, or swapping housework for an afternoon of cuddles. I’m never, ever too busy for cuddles.Sometimes it even means joining him under the table to eat at a party when he’s overwhelmed with all the people.
I fret about going to the mall, to parties, to people’s houses, to new places, but it never stops me from going. I don’t want my boy growing up feeling ashamed or lonely. I want him to know it’s OK to feel how he does and that people understand. I want to teach him healthy strategies to cope with his issues.
I want the best for him. And the best is not me denying there’s an issue. The best is not me wallowing in self-pity and feeling sorry for him and his future. The best is instilling self-worth in him every single day. I need to remember he’s highly sensitive to the world around him, and that even on calm days, he probably feels like a tornado has just buzzed around him.
There are some things that I can’t stand, one of those being veins. Even the word makes me cringe. If I see veins or hear someone talking about them, I feel sick and weird. My boy sees and hears veins every minute of his life, except it’s not veins, it’s smells, noises, textures, crowds and bright lights. This keeps things in perspective.
SPD might wear you out as a momma, but imagine how much more it wears out the child who has it? Momma, your tears won’t change the future, but your perception of SPD will.More patience, more cuddles and less apologies to the public will help. You don’t have to justify anything to anybody, and if people question the diagnosis, let them. Some disabilities are unseen. Momma knows best.
I hope sharing a little of our world helps in some way. It can be a lonely road, but I’m right there cheering you on.
Keep going. Tougher days might be ahead, but plod on through the tears, the meltdowns, the aggression, the misconceptions and the brick walls – your kid needs you.