Five Things I Would Change…..
1. This maybe controversial as I know many parents who would not change their child for the world. I would not be without GG for the world, she and her siblings are my everything. However I would fix GG if I could. The core of GG, would 100% still be her, she has a very strong personality! However I would take away the pain and challenges she faces every day.
2. The attitude of others, towards those of us trying to lead a typical family life with a disabled child. It’s not easy, so you staring and tut-ting is really not helping. We should be able to go out for the day or enjoy a meal – offer help instead of judgement.
3. The assumption that parents of children with disabilities do not, or should not work. We are a growing army of working parent carers, it is good for us, good for society and definitely good for our children when we can make it work. However it does mean that I am not at your beck and call, for appointments and I cannot conjure up a fancy dress costume in 48 hours!
4. The crazy inconsistencies between provision in different local authorities / NHS Trusts. It is a postcode lottery as to whether you have access to, or qualify for, much needed support and to not have a standard offering to children with disabilities is beyond ridiculous.
5. Professionals treating us like amateurs when we are experts in our children. We are their voice so please listen and treat us with respect.