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Tuesday, 18 March 2014

Waiting.....

Waiting. Yes, waiting. If you are an autism parent, you know that feeling well. All we seem to do is wait. Mainly, we are waiting for someone else to make the big decisions in our children's lives. Not because we don't want to make those decisions, but because we are not allowed to.
First off, the wait for the actual diagnosis. That can be a looooooong wait for many. You know your child is autistic but you have to wait to have that confirmed. Often times, you have no access to any support until it is.
Then finally, the waiting is over and you get the diagnosis. Yippee!! All that support is gonna come flooding in now. So you wait. And wait. You wait for someone to decide whether they think your child actually needs support. Then they say 'okay!' Then, you wait until someone else decides what support your child will get, and how much. Waiting, all this waiting, waiting on someone else deciding these massive things for your child.

Then, and this is the biggy for me, as it is where I am at just now, you wait for someone else to decide where your child goes to school. Yes, you do!! Unless of course you are confident in the local mainstream school, where you are happy to send them. That's great, no waiting or decisions to be made by someone else there. Except, oh yeah, someone else decides if they need support, someone else decides how much support and what kind. I think I may be having dej√° vu here.......
But, back to the waiting on the school decision. We, as parents, know our children best, yeah? So, when we as parents know that the best place for our children is a certain school, be that a special school or autism specific school, it would be great to just apply for a place and get them started.
But no. This has to be decided by someone else, or a whole lot of someone elses. Many of whom have never met your child and never will. They decide whether your child is actually 'autistic enough' (yes, I know, absolutely ridiculous!!) to warrant a place at these schools. So you wait. And wait. Always waiting.

I don't know about you, but it often feels like I do all the hard work, being the parent, yet someone else gets to make all the big decisions about my child. That kinda sucks, doesn't it? I maybe wouldn't mind so much if I thought they were going to make the correct decisions, but let's not even go there, let's just not!

Then there is DLA. The dreaded DLA.
For those of you outside of the UK, this is a 'welfare' benefit that you can apply for if your child 'needs more care and support than another typical child of the same age.' The DWP description by the way, not mine. So, you fill out this form, this HUGE form, detailing every single thing that your child needs extra care/support/encouragement with. You spend a week having to think about your child's weaknesses and documenting it all. Then you send it off and, you guessed it, you WAIT. Wait for some unqualified person who knows nothing about autism to decide if your child actually does need this help and support or if you are just plain making it up and they are getting nothing, not a penny. So, you wait. You wait. And you wait some more because your paediatrician is a busy woman and doesn't have the time to drop everything and fill out a report for the DWP, even though you already sent reports from the Ed Psych, the Speech and Language therapist and the nursery confirming pretty much all you wrote. I guess if it doesn't come from the paed, it didn't happen!

So, here I am, waiting. Waiting on one of the biggest decisions of my child's life being made by people who don't know him. Will they give him a place at the school he needs to go to? Who knows. Here I am, waiting, waiting to see if the Department of Work and Pensions will renew my son's DLA or will they decide that actually, he doesn't need all that care and support and I should stop kidding myself that he is autistic and get on with it.
You know it all too well, don't you? Because you have been there too. Waiting. Waiting on someone else making the decisions. Because we have to let them.

If you need me, I'll be over in the corner. Just waiting.

6 comments:

  1. Oh my gosh I totally get this. Ugh. Waiting is the worst! Well said!

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  2. It's eleven years ago now when Amy was officially diagnosed with autism at aged three and a half, but I remember those times like they were yesterday. I also remember how every year after the diagnosis I would get increasingly stressed out about the fact people are making a decision on your child's education and welfare that will affect that child's life forever - and those people know absolutely NOTHING about your child except what they have been told second hand, what they have read in reports, by "professionals" who spend a maximum of an hour (at best) with your child, probably a fortnight, or a month, depending on where you live, and therefore have NO advocacy in your child's future. How on earth can a total stranger make such a crucial decision for a child they don't know...all because that person has a few letters after their name? WE are our child's advocate and these "professionals" should have a LOT more faith in us as parents.

    So in a nutshell, I know exactly what you're going through right now.
    K x

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    Replies
    1. Thanks CJ. It sucks, doesn't it? It's almost like our rights as a parent have been stripped from us.

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  3. hello,i get your blog.i have aspergers.married 13 years we have 2,boys our youngest
    son age 11 all so have aspergers .and we have 1,daughter.i take part in a lot research from universities.i all so have m.e.if you have heard of it .lot health problems .your blog
    says no reply trying this way.we live in cambridgeshire.England /if you would like too
    e.mail me chat .ask me anything please do

    my e.mail mkentdad12@outlook.com


    mark

    ReplyDelete