answering questions I am not prepared for…

PDAASDVULCNUT

 

When I went in search of answers to Dinky’s problems (having been told by other parents that they thought that she showed some flags for autism) when she went on the SEN register at school, I was told about PDA.

From the moment I read the criteria, I was sure that this was my answer. It fits her completely, and made sense. For the first time something made sense.

It was at this point where I thought it would make sense to others. To her teachers, the senco, and things would be straight forward. As it happens you couldn’t get further frim the truth. The teacher said she fit but could be anything, the senco nodded along until I mentioned it was a diagnostic criteria, and things were anything but straight forward.

I went to the GP and he sent us to the CDC after consulting his superior.

Having Dinky on the SEN register and our small housing hiccup, I was told to go to a parent/carer meeting on housing. I met the man who runs Dinky’s special needs group, he told me to phone the group leader to arrange getting her into doing the activities. It was at the same time that the Senco mentioned the same group, and then one of the dads at the school mentioned them, as he knew the leader personally. So I got the forms. I filled them in and then realised that I couldn’t afford the activities. I also felt uncomfortable because  1) dinky doesn’t have a diagnosis and 2) there was a box asking if Dinky got Disability Living Allowance.

I had many a discussion with the Senco and she said that I should apply for DLA, as Dinky DOES have additional needs and IS hard work for a child of her age and not through anything I had done or not done.

So I sent the forms off.

Dinky was awarded DLA shortly after she went on her first trip.

I feel like I have skipped the diagnostic step. I have got confirmation that Dinky has special needs in various forms, just not from the medical professionals.

So when I was speaking to a parent of a child diagnosed with PDA and they said “If I could take it away I would… would you?”

I was so taken aback, it was like a sucker punch. Of course I could totally see their point of view, but I was not expecting this, it was a question for someone who had come to terms and accepted their child had the condition.

I can see why and I think she has a right to feel her way and she would like to take away her child’s PDA so they will have a more typical life and fit in better. To take away her child’s struggle is her instinct.

I was shocked, I cant even remember how I answered I think I said that I wouldn’t want to lose the good parts, like how funny she is and how her lack of filter meant she said exactly what was on her mind.

I know the other parent didn’t mean it like this. I felt lost in the conversation because I hadn’t got that far yet.

I accept  that Dinky shares the traits seen in autism and more specifically PDA, I accept that Dinky isn’t a typical child. So why do I not feel ready for this question? Is it because I have only known about PDA for 6 months? Or because she hasn’t got a diagnosis? Or because I have been so busy fighting and researching and doing the day to day that I haven’t fully thought about the implications?

I don’t know. It was only the other day I realised that I haven’t thought about anything past the next 6 months in terms of her future. I have read Jane’s blog ( www.understandingpda.com ) and thought that this could be Dinky in 4 years but hopefully getting the ground work in it will be different.

I haven’t accepted the present so cant accept the future.
I have just realised what I just typed. I haven’t accepted that she has PDA fully. I cant. That is the issue. She hasn’t got a diagnosis. Until she does it wont be real. It is why I cant say anything but ‘she has special needs’. If I mention PDA I always say that I don’t know yet. Even though I know in my heart of hearts I cant accept it until someone rubberstamps it.

How can I answer if I would take away PDA.

What would that mean? I would lose MY Dinky.. she would be a different child. Even going back to day one and starting over with no memory of her growing up… What challenges would I face otherwise? What would change?

The truth is.. at the point I am at now, I can only answer as someone who is still in the stages of acceptance.

So my full answer is this… for now…

If I could I would take away the demand avoidance and the fact that she doesn’t pick up social skills intuitively. I wouldn’t want to change too much, and these are her two biggest problems. Not mine, hers. I am happy (ish ! ) to deal with her more demanding side if it means I get to keep Dinky’s sheer awesomeness!

Of course my answer is based on being in the here and now. My answer will change a lot I am guessing over the coming months. especially since I intend of getting a statement of educational needs by the time Dinky finishes Year 1. Whether that is to keep her at this school with the 1:1 he needs to reach her potential and to help her in other areas of her development, or to move her to a specialist provision where the staff are trained to deal with a child with PDA, I don’t know.

I am answering questions I am not prepared for.

Lets just hope no one asks what I think her future holds!

I need to sort out the present first. Once I sort out getting her needs recognised and her needs met (or as close as possible given the difficulty there is in getting support and services, I will fight though!)

Advertisements

2 thoughts on “answering questions I am not prepared for…

  1. This is a great post DM for explaining why parents fight tooth and nail for a diagnosis which is something that many professionals just don’t understand. Without one we may often feel as if we are in limbo and we just don’t feel that we fully fit in anywhere. The golden stamp is, for many of us, the conformation that provides the defining line of where we officially start our new journey. It is also the label and signpost that will enable our child to receive the correct support and strategies throughout life. A set of strategies begins and ends with the one professional who has provided that set of strategies but a diagnostic label continues down the line from one professional to another.

Add your comment here...

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s