Saturday, December 5, 2015

My Sweet Fynlie Girl

I have 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 2 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 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 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. 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).  My child? No, not my child; yet she ticked every box! Things started to make sense. She wasn’t just sensitive, she was overloaded and couldn’t cope. They weren’t tantrums 40 times a day, she wasn't wanting to bite, hit, punch, scream, screech, jump out of my arms, they were meltdowns from sensory overload.  She wasn’t being awkward about her clothes being just right. She wasn’t being naughty when she had a screaming fit because she couldn't have that food, or didn't want that food, she wasn't throwing a fit just because she is hungry, her senses aren't getting to the right places so her hunger is coming across as angry to her. She wasn’t just sensitive when sounds made her cry. She was overloaded. Her senses are literally in control (or out of control) of her every thought. Her brain was having a traffic jam with her senses not getting to the right places. This breaks my heart. I cannot fix it. Her 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 her have time-out for every meltdown that occurred. I wouldn’t have yelled when she wouldn’t try a new recipe. I wouldn’t tell her she was rude when she 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.

 This is the life we have, my baby has. She’s not defined by a label. Her brain may be wired a little differently to the average person, but that doesn’t make her weird or less of a person.

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 girl had something wrong, and relief that finally we didn’t have to plod along and struggle our way through each day alone anymore.

After researching SPD I understood more and more about the challenges my baby was facing, and I became prouder by the second for her accomplishments. Daily life is overwhelming for her sometimes, but she 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. 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. 

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 girl growing up feeling ashamed or lonely. I want her to know it’s OK to feel how she does, and that people understand. I want to teach her healthy strategies to cope with her issues.
I want the best for her. And the best is not me denying there is an issue. The best is not me wallowing in self-pity and feeling sorry for her and her future. The best is instilling self worth into her every single day.

I need to remember that she is highly sensitive to the world around her, and that even on calm days she probably feels like a tornado has just buzzed around her.

SPD wares you out as a momma, but imagine how much more it wears out the child who has it?
If you are wanting to know more details about SPD 

No comments:

Post a Comment