Seeing the invisible.

I’ve often thought how lucky we were with Evie’s diagnosis. Lucky as in the doctors were able to tell us through a simple blood test what her condition was.

Ok it may not have been brokered in the most appropriate way. We may have been somewhat abandoned by professionals and left to fend for our own knowledge.

But when I consider what might have been, the invisible disability, I consider ourselves fortunate.

What do I mean?

Well…I can only personally equate it to when we found out Evie had Sensory Processing Disorder. Evie obviously had the accepted condition of Down’s syndrome but we suspected that there was something more. For months, years we had been quizzing professionals about he behaviour…her chewing, her absolute terror of social situations, her crashing into people, her complete lack of sense of control…

We were told that this was ‘normal’ for those with DS. But we suspected that there was something more. We swallowed our fears and asked if they thought if Evie may have autism. No they said. We felt as though our concerns were being ignored.

Evie couldn’t cope in loud, busy situations. She would scream and meltdown uncontrollably. Shake with fear. When your child has a meltdown, it isn’t a tantrum. It is something that they can’t control. It’s not something that can be bought off. You can’t bribe your way around it. With Evie she would flop to the floor…still does occasionally.

When Evie does this you can’t pick her up. She’s like a lump of jelly…a jelly made of the heaviest substance known to man. I can’t pick her up, no one can. She’s just a quivering crying wreck, she can lash out. She can’t help it. She’s scared, terrified…she has no control whatsoever. You just have to ride the meltdown through…let it runs its course and be there for her. Tantrums aren’t meltdowns…a meltdown is just that. Uncontrollable.

What brought matters to a head was going to a local playbarn with other families of children with DS. I had to coax Evie inside. She sat with her ear defenders on playing on her iPad. Not in the ball pool, not on the slide but insular and isolated and scared. My friend’s gorgeous boy was up and down the slides, in the ball pool and yes, he also had DS.

That night I stumbled across a graphic on Facebook which explained about sensory processing disorder and it was as though a light had been switched on. To cut a very long story short we managed to get a diagnosis of SPD for Evie and learnt how to help her.

The absolute relief of that diagnosis is so hard to explain. I wasn’t going mad. There was something more. There was something that we could help with.

Where am I going with this?

I hear comments and I see the looks. I see that people see Evie’s disability, they see her Down’s syndrome…her chromosome is visible.

But what if you couldn’t see it…what if you saw a little girl who was ‘naughty’, rough, who bit your child, who kicked them, who took up so much of the teacher’s time that you felt that your child was being neglected…

Would you understand that she possibly had a condition albeit undiagnosed?

Or would you say there’s that naughty child…

Why won’t she do as she’s told…

There’s her mum again talking to the teacher, she’s always there talking…

Her parents must be awful…

Maybe she has problems at home…

She needs some discipline…

My child would never do that…

Why can’t they control her?

How dare that girl hurt my child?!

You see there are 1000’s of children going through this…their parents must be having a tough time.

They will feel your looks, feel your judgement. They may go home every night and cry. Feel abandoned. Hurt. Intimidated. And cry some more. It may take more courage than you know to be on that playground.

It isn’t easy to get your child diagnosed not only emotionally but the system is set against parents. The NHS has such little money to help. Referrals to CAMHS (the children and adolescent mental health service) get rejected…they have massive waiting lists and from personal experience some of their employees leave a lot to be desired.

You may not mean it. But think…is any child really that naughty all of the time? Or is it a reason for something else? Please be kind. Please be patient. Talk to them. Don’t judge. You never ever know what someone is going through.


4 thoughts on “Invisible

  1. I am going through something similar to this with P as he is being assessed for ADHD. we only got referred to CAMHS after 2 years of school thinking I didn’t feed my son because he was eating everything he could including non food items and has now developed into him even stealing food from other children’s lunch boxes.Parents thought I was letting him get away with it and I have been given horrible stares in play ground. It took numerous trips to GP and countless blood tests that came back as fine before they referred us to CAMHS and they spent a couple of sessions with him and asked me have I ever thought he might have ADHD and like you it was if a light bulb had been switched on. At moment we are at the beginning of the assessments and it may come back that he doesn’t have ADHD but in my heart I know there is something because of his behaviour.

    Liked by 1 person

  2. I’d love to know whether our English culture makes it more difficult.We have very low tolerance of children altogether in our country,and are so good at indirect aggression.I fear we make difficult situations worse.

    Liked by 1 person

    1. Absolutely. I also think being SN parents changes your perspectives so absolutely. You seem to see things that others don’t. It’s like a secret world. And having compassion for others seems to be looked down upon still.


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