18 November 2016

An Introduction With Lots Of Love and Affection




It's hard when you know there is something different about your child, yet others are unwilling to see it, ignorant in believing or just completely in denial. I wasn't any one of those people. I saw, I believed, I was willing. I trusted my most natural instinct, my maternal one.

That's the thing when disabilities are invisible, or not physical people assume and judge you and disbelieve.


Some people are completely devastated, upset, or shocked when their children are diagnosed, or in disbelief, they go through the motions of why her/him, why us. Why can't my child be normal, be free, less stressed and confused about life in general. But I had fought since she was one year old for a diagnosis of autism. I had already come to terms with it. Already prepared myself for the future, I understood that I was never going to get those "firsts" that other families have, well not at the right time anyhow. I'd grieved for her normality way before she was diagnosed so when she was, I cried with relief not loss, finally these "professionals" could see what I saw!
I have gorgeous 6 1/2 year old daughter who struggles on a day-to-day basis. She was diagnosed with Reflux, Sensory Processing Disorder (SPD), Autism (ASD), Dairy Intolerance, Sleep Apnoea, Hyper-Mobility and Flat Feet, Attention Deficit Hyperactivity Disorder (ADHD) and Anxiety; she is an obligate carrier for X – Linked Adreno-Leuko-Dystrophy. Just recently she is also diagnosed with Microcephaly and is described as having Micro – Sleeps which was originally suspected to be Absence Seizures.
She is my princess, my star and every day presents us with challenges but every day we battle on and achieve things that we never though possible.
You know that child who doesn't want to hold hands crossing the road, flinging themselves on the floor and screaming "you're hurting me" yep, that's us!
And there's me, not knowing anything about SPD, shouting at her to get up, when actually it felt like I was ripping her hand off.
So from that moment on she held my hand, in more ways than one because this journey is only just beginning for us, and the only person who can guide me along, see me through. Give me those all-important answers to those very silly questions, is her. My little dolly. She's holding my hand for the rest of my life and she's teaching me her world. And by letting her do that I can somehow try and bring her into mine, ours, to feel safe here, not get lost, overcome her fears, and most importantly to feel like she belongs.
And belong she certainly does.    
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