Being happy doesnt mean that everything is perfect.

It means that you have decided to look beyond the imperfections...

Friday, May 28, 2010

There is a BIG bee in my bonnet!!!

Through Ellie, I have made some wonderful contacts and friends of other parents of kids with additional needs or disabilites. Its nice to hear what they do, what works for them with their kids, what therapys they do, problems they have gone through and what they did to fix it.... These parents are a huge resource of information.....

However, over time there also seems to be a common theme to the negative points that I hear... here are some of them:

- When applying for funding of any sort, you need to give the worst case scenario for your child, even exagerate if need be.
- Private therapy, toys, equipment is ridiculously expensive.
- Funding is not always given, even when the child has a obvious disability and learning dificulties.

I now have some questions...
1. When you have a disabled child. That is hard enough... why should you have to EXAGERATE on their condition. Why should you have to beg for funding??

2. Why oh why is private therapy, toys and equipement so expensive (with minimal government and health insurance funding) Does the government not realise that most parents of a disabled child counted on going back to work at some stage after their child was born... but now spend ALL their time caring for their child. Taking their child to appointments, taking their child to therapy, so that they can be the BEST that they can be. So for some work or making an income is not an option... why should you have to choose between suporting your child or contributing towards the income of your family, so your child can have what they need.

3. Why and this is a big WHY.... when a child who clearly has additional needs and delayed development gets knocked back for ANY funding for schooling or aids....

This 3rd WHY has come from reading a friends blog. (Violet's Journey) Sarah's daugher has Hydrocephalus, Microphthalmia (which is like Ellies eye condition, however it means small eye) These are only a couple of the conditions & problems that Violet has to deal with. Sarah has been going though a long process to get Violet funding to assist with Violets schooling & to get a aid etc. This involved putting Violet through 5 psych assessments.

The results of these assesments showed that Violets overall IQ was on the 3rd percentile, and the report stated that , "The combined results of the assessment are consistent with and suggestive of a mild intellectual disability." And Sarah was advised that based on these results Violet would not be eligible for any funding..

WHY WHY WHY and HOW Does this happen.. should not all children with disabilities be entitled to support and funding, regardless if they are classified as a mild or severe disability.

Why oh Why are parents of disabled children, constantly having to fight for their children??
These parents will fight and will NEVER give up, but It shouldnt have to be that way.

*phew* that feels better!!

(please take the time to check out Sarah's blog about her gorgeous daughter Violet at


  1. Thanks so much for all your support Melissa. You have inspired me to keep on fighting this to the end.

    Even if the end result doesn't help Violet, I am hoping thru my voice and others in the coming years and less than that, our Government will wake up and support kids with all kinds of additonal needs no matter whether mild, moderate or severe!

  2. I have no answer to you, and you raise good points. It would be great if funding were readily available, and that toys/equipment, etc that HELP our kids were much cheaper! It's ridiculous! Ugh!

  3. It is absolutely insane the things we have to fight for, for our kids! The cost of "toys" in specialty catalogs is astronomical. It just doesn't make sense.

    Unfortunately, it's the way it is. We learn how to get around some things, and learn how to live without some things. It's just not right!