Wednesday, 25 January 2017

Dyspraxia, My Daughter and Me.

Last night S asked me why we were going to the hospital today. We've talked about it with her before, told her that it's just a few tests to check her co-ordination, no big deal. The School just want to see if they can give her any extra support should she need it, and she has seemed happy with that explanation in the past. So, I went over it again. What it was for, what they would be doing, as best I could.
When she was finally assured that no operation would be taking place and no, she wouldn't have to go in a lift ( I think she was more anxious about the lift part to be honest) She then asked if she absolutely had to go.
I paused and thought about this for a moment  "No" " I said carefully "No you don't have to do anything you don't want to but it would be really helpful if you did" S mulled this over for a while and then came the punch in the gut, she said  "Do my teachers think there's something wrong with me Mum" I wanted to cry but big gulp, deep breath before I answered "Of course not" "They just want to see if you need any extra help in school that's all" And she nodded and went back to what she was doing before; A mash up of fencing and Karate with my Nan's old walking stick. Me? Well I went upstairs and I sobbed.

This afternoon we're going to the Hospital for a Dyspraxia assessment. I know why we're going, I know a little about what to expect, not everything and that causes me some anxiety to be honest. I hate not feeling prepared but I've done enough research on Dyspraxia to know that an official diagnosis will no doubt benefit S in the long run. An early diagnosis especially will be an advantage to her, but right at this minute? I'm feeling pretty bloody angry about it all, about having to put her through it. I'm angry that we have to take her to be tested for all the things that we love and celebrate about her and simply make her 'her', and I'm sad. I feel sad that my beautiful girl thinks that there might be anything wrong with who she is, or that she has to consider even for a second that anyone else might see something wrong with who she is

To describe S to those who have never met her, well it would take an entire blog post of it's own, she truly is unique. She is loving and kind and funny, and a great mimic! S is a real Tom Boy who loves playing football with the boys, but who is equally sensitive and feels very deeply. She is creative, she loves to play and invent new games, her inquisitive mind just bursting with ideas. However she struggles to execute these ideas exactly as she had imagined in her head.
She can be blunt and takes things quite literally, she either blurts out the first thing that comes into her head, or she doesn't what to say at all. S struggles to find her place in friendships groups much preferring to spend time one on one and struggles in large social situations, this can lead to real frustrations on her part, and then understandably with her peers too.

S stands up for what she believes in, she has an opinion on just about everything (her running commentary on the Trump inauguration was better than the BBC) she is passionate, loves her family and never stops talking Those are just her character traits right? We always celebrated her quirks, her love of the mud and all things Marvel. If I come into the Kitchen and she's inventing a 'Memory Maker whilst sat on the table and not at it. Well, that's OK she's creative. If she comes out of school and her T Shirt is covered in mud and one sock is missing (yes really) Well that's OK surely, she's a Tom Boy.

I never knew that these qualities might have a 'name' or that they might be holding her back in any way. It never crossed my mind, not even for a second that they might not be perceived as .....well....normal.

I hate to use the world 'normal' because I mean what exactly IS normal? But when we were sat in that office over 12 months ago listening to a list of all the character traits that you love about your child, that make up the very essence of them, that's how you feel, you feel like they're saying your child isn't normal.
That's after you feel like your heart's been ripped out your chest, stamped on and calmly handed back to you of course.

Let me be clear there was nothing said in that meeting by her teachers ( Her very lovely, caring and experienced teachers I might add) that came as a shock to us. No-one said any of those things to hurt us or to make us angry or sad I know that. No-one of course was saying there was anything 'wrong' with S at all, they all genuinely wanted and continue to want to help her be the best she can  be.
And I know that now but then? Well then we went through a whole spectrum of feelings. Angry at first, then we dismissed it, then we felt sad. Usually at this point there's a diagnosis to lead you to a place of accepting it and moving on, but we didn't get that so we just went around and around this cycle of feelings.

You see I convinced myself that it was nothing to do with Dyspraxia, it was all my fault and I set out to prove this, to them, to myself perhaps.

S is an only child, she didn't go to nursery as I only worked part time no need, and although we did baby classes etc I'd have rather put hot pins in my eyes that go to to the village playgroup. Social struggles? My fault for sure.

Her co-ordination skills are behind? Well she was born with D.D.H and had an operation at six months, she spent almost a year of her life in a Hip Spica cast or Pavlik harness, I assumed the developmental delays come from that, why did I assume it was that? My fault.

Organisational skills are poor? Well here's the only child guilt to kick me in the gut! Only child, Mum at home with all the time in the world in the mornings to tie shoelaces, remind, and remind and remind that teeth need brushing, face washing. I pampered her, pandered to her, My fault.

So we spent months trying to prove Dyspraxia wrong, trying to prove that everybody else was wrong, Except that we didn't and here we are. Yesterday I felt ashamed of those feelings I had, I felt guilty that I've wasted almost a year when we could of had a diagnosis in place, supporting her sooner. The year of self flagulation I spent giving myself, has been hard, it's knocked the stuffing out of me to be honest.
Today at least we'll have an answer. If S does have Dyspraxia then we can move forward, it might feel like a weights been lifted I guess? But if she hasn't? Will we be jumping for joy? Will we feel like self righteous and start saying "Ha! You we're wrong".

No, no we won't.

Because what do I say to her then? When she asks why have we been through an afternoon of tests and puzzles and being observed based on all those character traits that make her who she is. If that is indeed just who she is and she's not Dyspraxia? What do I tell her then?

That thought along with what she said to me last night has made me feel angry this morning.

I'm not sure if that's normal? I'm no doubt supposed to feel at peace and all zen like before I go in for the assessment with her. So I'm going to have a Coffee (as you know it's only 10.45am Gin surely isn't acceptable) and slap on my game face.

Dyspraxia we're coming to get you, either way.



1 comment:

  1. Rachel, we've talked about this and I told you that my lovely talented daughter was diagnosed with borderline ADHD at the age of the age of 25, she is a very talented colourist in London, she has a 2:2 degree from Leeds University in a few ologies, and she is the best thing since sliced bread! Seren is who she is. If the assessments can ensure that she realises all of the massive potential she has then go with the flow and make it happen. She is a darling and is an enormous personality. Our job as parents is to ensure that she can be the best ever, but not to feel guilty for stuff that others might lay on us. My Bethany had help and support BECAUSE of the assessments that seemed daunting then.......Seren will grow and be even more wonderful than she is now because of your love and care. Go for it and don't worry.....Seren will be GREAT xxxxxx Chris