Navigating services feels more like a hostage negotiation

As a parent of two girls on the spectrum I often feel that trying to get them any kind of help is much more complicated than it needs to be.  Those with money can afford private services – but even that is hard to navigate.  People apply and don’t show, people show up and then do one or two shifts and never call or show up again.  You end up on so many wait lists and navigating so many things that you feel like there are more directions than there are ways to get there.

I sometimes feel like we need to be hostage negotiators and quite often we are also the hostages trying to negotiate our own release so to speak.  Kids need support – as parents we can help them but we to need to step back and be parents and not their speech therapist, their OT and PT etc.  Our lives are already busy and stressful and at some point in the day we need to step back and decompress just as much as they do.

In this household it’s even more essential that I can get that time in for me.  Between the Aspergers, Anxiety and all the medical issues I have and then Kevin’s PDD-NOS and his other health issues and the kids ASD and ADHD and two of them with Diabetes I never get to just relax.  Now I do prefer to manage their medical issues myself because I know what is needed when it is needed and how things have to be done.

I had to take it upon myself to help Kiana last year when the services we were getting were not helping her make much progress.  From September to June they tried to get her toilet trained with our help, they tried to get her to take her jacket and shoes/boots off and to be more safe outside when crossing the road etc (still working on that from time to time) and one step directions.  But we managed to get her toilet trained day/night and road trips before September, we managed to get her to cooperate for the most part when going out and she knows the routine for the mornings and she has been sleeping through the night and going to bed at decent times – all the things they could not accomplish with us – we did it without them.  But again it has it’s challenges because I am the parent.

I know I managed to get by in life all these years without therapy I managed to do what I could to get by in school but it wasn’t easy and I still struggle.  I want better than that for my kids – they don’t need to struggle so badly when there is help available to them.  I just wish the “system” that is there to help the kids, and us as parents didn’t hold us hostage.  I just need to catch a break somehow because this Aspie and Mom is just burning out real quickly.  It’s not ok to make the kids suffer and us parents more stressed than need be.  There needs to be a better way to do things for everyone involved.

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