24/03/15

Uphill Battle

It seems strange that you have to channel so much energy into getting what you deserve. I don’t mean applying for things that you may like, or it would be nice to have, I mean genuinely need.

I wrote an article some months ago about how we felt we had been thrown into the abyss as all agencies had discharged us. We continued to try our best which will always be the case but when a doctor looks at you and asks why we are not engaging with Speech and Language and why we don’t receive support then I had no answer and felt we had let the girls down.

I contacted a number of the Down Syndrome support groups and  other parents that we seek advice from and realised that we were being short changed and were entitled to the service and so I pushed for a re – referral which was done.

I was really surprised that the referral was refused as the girls could “communicate adequately”. Well this isn’t true at all as the girls can only communicate with people who understand their signing. Yes they are fully understood at home or at nursery but in the street they become a 3rd party in the conversation if the other person doesn’t sign which I feel is incredibly patronising.

Anyway at the conclusion of the last T.A.F meeting I made another representation and provided articles of support and it was placed as an action.

I am pleased to say that the girls return to speech and Language at the end of the month and we will be looking at strategies as to speeding up and improving their speech and verbal communication.

It has taken 12 months to get here and part of me feels like it’s 12 months wasted and through no fault of our own. It makes us reflect we should have challenged things more robustly from the start.

I guess what I am trying to say is two fold
1. It shouldn’t be so hard to accept provisions that are necessary.
2. Continue to set goals and push your children to be the best they can be. Never just accept a decision of a single professional if you don’t think it’s right. Have the confidence to speak up in the belief that you are doing everything you can for your loved ones.