Just not good enough

At the moment it feels like the support around Miss A is just not good enough. It feels like the last few years we have progressed so slowly and only due to me pushing. Now that Miss L is in the system I am learning through her journey what Miss A has missed out on....and us.

We were never told so many things which was one of the main reasons I started blogging.

Centrelink who? Yes we weren't even told about Carers Allowance or the extra payments you can receive.
Extra funding??? Services like Variety and Ronald McDonald House provide respite, funding for ipads and therapy equipment etc
Respite? Her therapy providers have the money sitting there for each family to receive respite yet we were never told.
Orthotics and AFO's are fully funded and you go to a private provider.....and the list goes on.

Over the last 2 weeks we saw a specialist who recommended Miss A wear orthotics. While her physio was supposed to be at the appointment she missed it due to being on holiday. It would have been an eye opener for her seeing as she has said for over 2 years it was unnecessary. When Miss A was 2.5 she started toe walking and did it for almost 2 years. As a result her feet were growing in an abnormal way. Her toe area the ball was overdeveloped and flattened. Her heel was round and soft due to barely having any weight on it. It also meant her calf muscles were overdeveloped and shorter. They were used to being used a lot but only in the shorter length from her heels being off the floor. So now at age 5 she doesn't actually have a set walking style. She doesn't use her heel and roll her foot when walking. She sometimes skips, jogs, tiptoes or slowly walks and as such she doesn't have a set pattern. He said if it had been left for much longer we could be looking at surgery. They often have to cut the tendon to release the tightness and allow extra growth. Not a happy Mumma.
We saw OPS who specialize in this area: http://www.orthoticprostheticperth.com.au/orthotics-perth


Next step was the school nurse asking if Miss A could see an optometrist as she had concerns about her vision. That's another eye opener I will blog about separately as it was so important.
Then I get an email saying for Term 4, 10 weeks she will have 2 speech and 2 OT sessions. We haven't had physio almost all year and now I have 2 professionals telling me that is what we are missing out on.

So now it is hitting home that the therapists don't know it all and they do miss things. I have learnt from other Mums and from Miss L's journey that is often me asking that gets us to the next step. It's not good enough that our kids are missing out.....and it often leads to lifelong problems.

http://www.orthoticprostheticperth.com.au/why-choose-and-orthotist