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.
Dear Mrs May,
Twelve months ago I wrote to you regarding Brexit and how I hoped that you would protect funding around genetic research, which is so important to those of us who have or care for someone with an undiagnosed or rare disease. https://theworldofgorgeousgrace.com/2016/07/05/dear-mrs-may
I did receive a generic response from your office, which did not give me a great deal of comfort.
Whilst this remains a concern, I have to be honest that I have worse fears for the future of the country, given what I have seen the Conservative Government do over the past year. Disabled people seem to have dropped off your radar (maybe even pushed) and I want you to put them back where they belong – on an equal footing with everyone else.
Disabled people should not be dying because of inadequate care. Disabled people should not be dying because you have significantly reduced their benefits. Disabled children should not be excluded from school because of insufficient funding. Disabled people should not be suffering unnecessarily due to the state of the NHS. Disabled should not be subjected to undignified questioning by under qualified people because you want to save a few pounds. I could go on but I think you get the point.
I totally understand that there is less money to go around but you do have choices Mrs May. Businesses must be made to pay the tax they owe in this country. Tax avoidance schemes must be eliminated. An extra penny on the pound for higher rate tax payers would not impact their lifestyles at all. Simply joining up services and reducing bureaucracy would allow money to be redirected into frontline services. There are many choices which would not result in some of the neediest people in our society being further isolated by selfish and needless policies.
I know we have 4 years before another election and somehow we have to find a way to muddle through, survive for some of us. However I think you know that the tide is turning, the reality of cuts in the wrong places is becoming more visible. If you don’t care enough to make a change for disabled people then think about yourself – do you really want the reputation that causing unnecessary suffering to disabled people will bring? I hope you are not that heartless.
When I think of moments of pride with my other children, my mind immediately jumps to a milestone achieved – starting to crawl, their first word, learning to write their name or receiving an award for ‘empathy beyond their years’ – a common trait in siblings of children with special needs.
With GG it is difficult to pinpoint those moments in a ‘first’. I cried with joy the day she took her first steps, but actually I was more proud of the resilience she showed as a baby wearing splints for hours on end to help her muscles develop. I was prouder of her ability to persevere through a demanding daily, physio session for 3 continuous weeks which accelerated her physical development. I was really proud of how she adapted to a specialist walker in the months before she took her first independent steps. The ultimate achievement of a milestone is made up of hundreds of proud moments which reflect GG’s determination.
I am so proud of how hard GG tries to communicate – her attempts to sign, verbalise and use communication aids to make herself heard. Last year was the magical moment when she first verbalised her own name – it’s still not a clear pronunciation, but she knows what she is saying and is still proud as punch to answer the question ‘What is your name?’ It cannot be underestimated how hard she worked for that one small, but hugely significant achievement.
I am incredibly proud of how GG copes when she is unwell and particularly during seizures. GG complains so much less than other children but handles so much more. Awful ear infections that we only know about due to a high temperature, huge bruises or blisters on her feet that we are unaware of at the time, and yet she smiles on through her day. The confusion after a seizure and sheer exhaustion it brings – none of it stops her for long. I could not be prouder of how resilient GG is.
One of the greatest pleasures for us is seeing GG interact with others. GG has social skills well above the expected level for a child with a severe learning disability. From a young age, GG has always loved being the centre of attention and will always seek out the company of others. Watching her try and join in games with her siblings and peers, always a long way behind but cracking on regardless. The one in her classroom who likes to make sure everyone is included, regardless of whether they respond to her. I am so proud of how inclusive GG is and how infectious her happiness can be.
I cannot point at one moment, one achievement as being my proudest but if I had to summarise, then overall I am most proud of GG being true to herself and every day being the best that she can be.