I am not writing this post to plaster my private life all over the world wide web. I respect my children’s rights to privacy. I’m their biggest protector, believe me. I cannot, however, get rid of this message I feel compelled to share. It has taken all of my courage to write this, so if you read it please know it was hard to hit the publish button for so many reasons.
I have learnt 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 4yo 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 are accepting of everybody else’s children under that definition, as long as it’s not your own children. I guess you don’t want to accept that life is never going to be normal by society’s standards and normal milestones standards. It’s hard to embrace it.
Having a child with additional needs, with or without a diagnosis, is a hard pill to swallow. Not many people will admit that. But it’s true. You go through a grieving period. You think of everything that cannot be done, the places you can’t go, the milestones that may never be reached. You worry about bullies and stigma. You fret about the future. I’m not sure this grieving period has a time-scale either, so you’re stuck there as long as you allow yourself to be. We allow our thinking to pave the future in our subconscious. We make excuses in public. We feel awkward. We apologise, a lot.
I admit I struggled when I realised 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 cannot fix it. His momma cannot fix it.
How as a momma did I not know something was wrong? I’d have done things so differently. I would have 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, and as soon as I excepted that we were able to approach things differently.
When I first began piecing things to together and understanding that my son most likely had SPD I used to cry in private, I used to sob.
I felt like my heart was being torn in two. I think it was part shock and part relief. Shock that my baby, my sweet innocent boy had something wrong, and relief that finally we didn’t have to plod along and struggle our way through each day alone anymore.
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 are 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 except the circumstances ourselves, and once we do that nothing will hinder our perception of the disorders. We have a huge responsibility as a parent to ensure that our kids childhoods are not something they are going to have to spend the majority of their adulthood recovering from.
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 a big accomplishment. 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 am constantly holding my breath waiting for the next reaction armed with calming words and cuddles.
I try and 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 have perfected this, but that would be lying. Some days I yell. Some days I cry. Some days I feel mentally exhausted. Some days I am a crap mom.
There is not a second goes by that I am not planning the next moves around the sensory needs of my child. It is 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 am never ever too busy for cuddles, ever. Sometimes it even means joining him under the table to eat at a party where he is overwhelmed with all the people.
I fret about going to the mall, to parties, to peoples houses, to new places, but it never stops me going. I do not 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 is 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 into him every single day.
I need to remember that he is 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 cannot 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 is smells, noises, textures, crowds, bright lights. The whirring of the wind, drills, and unfamiliar music are all veins to him. This keeps things in perspective.
SPD wares 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, less apologies to the public will help. You do not have to justify anything to anybody, and if people question the diagnosis let them. Some disabilities are unseen. Momma knows best.
I hope that me sharing a little of our world with you has helped in some way? It is a lonely road, but I am right there cheering you on!
Keep going, tougher days are most likely ahead, but plod on through the tears, the meltdowns, the aggression, the misconceptions, the brick walls – your kid needs you!