When fighting gets no results….

For those that regularly read this blog, they will know how much energy and passion I put into trying to get dinky the recognition and support she needs.

So days like today are such a kick in the gut and lead me to question why I bother trying.

Now, I’m going to put this in bold so that people understand

I don’t blame the children involved

Let me explain.

When Dinky went to her first school it was apparent she had additional needs and I was told there wasn’t a 1:1, that a lad in the year above with a diagnosis of ASD but without a statement was getting 20 hours of LSA and the other was for a child with a statement.
The lad who didn’t have a statement, his mum said to me a few months back
“ASD is different to being autistic, my son is autistic”
So it can be assumed that she hasn’t actually read a book about autism, she has just got the diagnosis gone back to work full time and the childminder I had for Dinky dropped her to look after this Lad.

Frustrating, especially when I lost my job due to no childminder, and I’m the one that recommended the childminder!

Then, when Dinky was having problems at the latest school, we began to use the office entrance. There we met another lad who struggled. On talking to his mum, she has seen my PDA aware keyring on my bag, looked it up and had her PDA lightbulb moment! I was so happy that my keyring fulfilled it’s purpose.
It becomes frustrating when the paediatrician who didn’t know what PDA was and was being retrained due to my complaint, diagnosed him with PDA a month or so back. Of course it is great for the child and the parent, but I have been trying to get this to happen since March, so it is bittersweet.

The lad is the same lad that gets support from the autism charity that turned Dinky down.

We have been in exactly the same place in the statement process all along, same PPM date, same statutory assessment date ect.
Today, I found out that he has a place in the special school I want Dinky to go to. I haven’t heard. I am pleased for him and his mum, the head teacher there really gets PDA, and he will do great there.

But the mum in me screams.

What about Dinky?

Why do other children get the nod over Dinky at every turn?

Of course I DO NOT blame the children, they are getting what they need as they should.

Makes me wonder what on earth I have to do to get Dinky the education and support she needs!


4 thoughts on “When fighting gets no results….

  1. I feel your pain!! Why do some kids get stuff just like that and ours have to struggle and loose valuable years of schooling before anything is done!!! It’s just not fair .

    • I wish I knew. Next to lying, things being unfair is up near the top of my list of things I hate. It drives me mad when people say “life isn’t fair”, I know that, but it shouldn’t be the case. X

  2. Oh hun I so want to give you a cuddle right now. You have fought so hard and you will eventually see your efforts pay off. Unfortunately you are a trail blazer, a pioneer and a true fighter. You have to upset people and bruise fragile egos along the way. This makes life tougher for you but it does open up a path for those that will follow you. Not much of a consolation now but perhaps in the future it may be. I am so worried that you will end up completely burning yourself out both physically and mentally. I know its hard but please try to not think about the lucky breaks that others are having on the back of your own hard work while Dinky is still out in the cold. The only support and understanding that Dinky truly needs is yours and she already has that. A great school and a child minder may be great now for the little boy but long term that is not enough to see a child with PDA reach their true potential. Dinky will reach her true potential and she will be the best that she can be because she has you for her mum. Try and take a step back from the fighting, we all need to take time out and sit in the corner. Pick one important battle and concentrate solely on that one battle and keep the others in a mental box for a later date. I would just concentrate on diagnosis and then the rest will follow. If you can manage with her out of school then it will do Dinky no harm at all. I couldn’t have achieved what I have achieved with Moll if she had been in school and she is learning all of the time. I know that this is not ideal because if Dinky can cope with school with the correct support then it is a shame not to have that option. However you really need to conserve your energy so that you can stay strong. The injustice is hard to bear, I know. Please try and focus solely on diagnosis or just on diagnosis and education. The other battles like the one with Autism Support can wait for another day. It isn’t fair and it isn’t right but you can only do so much on your own. Once you do have a diagnosis the other support may come easier to access. Life with a child with PDA is hard enough without all of the other stuff that we have to contend with. I truly admire your grit and determination and the fact that you have to do it alone. I think that I would have gone under a long time ago, all credit to you that you are still fighting. Please be kind to yourself and just focus on one battle at a time and put them on the back burner on days when you need to rest and regroup. You have my email if you want to talk just send me your number xxxxxxx

    • Thanks Jane,
      I feel much better today, it just all got on top of me.
      Dinky had the mother of all meltdowns added stress and It was just too much.

      I know you understand how I felt, as I take notes from you and Mollie, and where you have to learn by trial and error, I learn by reading yours and Molls blog.

      Being a trail blazer sucks for our kids, but it took a little while to realise that I stopped that lad and his parents from the fight and the stress that we have endured.

      And you are right, I need to focus on one or two things at once, I have kind of overloaded myself with taking on battle after battle- they just seem to find me!

      Thanks Jane- I appreciate all of your support and advice x

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