I have been intending to blog for days now, figuring I would use my time in sick quarters wisely. Instead I spent my time sleeping, feeling sorry for myself and watching funny videos on You Tube to cheer myself up. Videos that wouldn’t be funny should they happen to you. A particularly funny one was a Best Man accidently knocking the Bride, Groom and Minister into the pool, whilst giving the rings over. I was naughty and laughed out loud. Hard. It cheered me up no end! Anyway I digress….
Today whilst feeling miserable at the thought of not being able to go out to my best mate’s Hen Do as planned, I came across an article on Katie Price on Face Book that had caused a stir.
You may already have read about it, as it is spreading like wildlife across FB, Twitter and the disabled community. Now this isn’t the first time a Public figure has spoken out inappropriately.We all remember the ridiculous comments that Colin Brewer made. Eurgh I still shudder at the thought of his vile words. I wanted to respond to him, but never summoned up enough energy to put it down on paper, instead I just ranted about it to my husband, which I am sure he loved!
This time I felt compelled to respond to Katie. I think it is because I felt we have been mispotrayed by someone from our own community. Someone who goes through similar struggles to us.
As a parent and more over a parent of a disabled child we are constantly judged. Katie is no stranger to judgement. Society have scorned her and have blamed her for Harvey’s disabilities.
Judgments are made on people’s lack of knowledge and understanding. They judge on what they see. They add two and two together and get seven. I have always banged on about raising awareness to help people and society understand about disabilities.
So here I am responding to Katie, as she has wrongly judged the people in a community she is from. By making the sweeping statements she has, she has in fact misinformed society. She has labelled some parents as ‘lazy’ and ‘ignorant’ and made it sound all to easy to get help,missing out quite a few of the stages inbetween.
So Katie here is what I think you should know.
You said there is a lot if help out there you just need to look for it. I would love to know your meaning of a ‘lot’ of help. Any help and support we do receive is a postcode lottery, with where you live impacting on how much support and how often you receive it. Some parents see therapists on a weekly or fortnightly basis, others have to wait as much as six weeks between each appointment and there are some parents who don’t see anyone as they are on ‘waiting’ list, as they have no one available in their local authority.
After our initial appointment we had to wait for two months to see a Physio who we then saw every six weeks. We had to wait 4 months to see an Occupational Therapist who would provide Isabella with specialist seating which was another wait, as more paper work had to be sent. It took us a year to get adequate seating for the bath and a year to get the correct buggy for Isabella’s needs. It took six months before we finally saw a Speech and Language therapist.
Even worse than having to wait I know parents whose children have been turned down for support all together, as their child has been deemed not disabled enough!
Katie you say that we have to fill in the forms to get the help we need. Well I can assure you not all the forms are filled in by us. We were referred by our GP, as we had concerns about Isabella’s development. We had to push him to refer us, as he thought nothing was wrong with her. We waited 8 long months before we saw anyone.
Then once we were seen by a Pediatrician that’s when the real form filling came into play. There are forms for Disability Living Alliance, Mobility Allowance and Carers allowance to name a few. These are forms that you dread landing on the floor. They fill you with fear and dread. They tear you up emotionally asking you the same questions over and over again, comparing what your child can do compared with a child of the same age. Tears are wiped away,as you have to discect your child bit by bit, going over everything they are unable to do. Incredibly it took us 6 hours one night to complete DLA and by the end we were physically and emotionally drained. Now as if that isn’t enough some parents have to go through the process a second time if their application is declined. In some cases tribunal cases are held. Simple form filling it is not.
You say that some parents are too lazy and ignorant to look for the help they need. Every parent I have met in person or via the net is far from either. Everything is a battle we have to fight, fight and then fight a little more.
Parents of disabled children always stand together united to be heard. We blog, we tweet and re tweet to get our messages across. If someone wrongs us or shows us in bad light it is our job to respond. Society believe what they read and hear in the media and we don’t want them believing that we have it easy or that we the parents if disabled children are lazy and ignorant.
The thing is Katie people will listen to you. You are a popular celebrity with a disabled child, so Joe public will be inclined to believe that what you have said is right. Here are some other Mums telling you that in this case, the Price isn’t right.