In this article Katie suggests parents of disabled children are "ignorant" " don't want to look for help" and are "lazy" for not looking for and accessing the support that is apparantly out there. Oh and that we expect the help to come to us.
Now I have no interest in Katie, Katie books, Katie shows, Katie's boobs etc. I know she can't understand what it's like to live with a SN child WITHOUT money. She won't have to wait months for OTs and physios and equipment reps to decide on equipment, then wait for the paperwork to go through and eventually get it at which point it's almost too small and the process starts again. I'm sure she didn't have a battle for housing adaptations as many people do. I'm sure she has teams of people to decipher and fill out her forms. All of which is money related, and we know vast amounts of money can make things easier, and I'm not wanting to sound bitter here.
My issues with her comments are related to the fact that she is liked and loved by many people. People who will listen and believe her thinking she knows what she's talking about. So not only are her comments insulting and not based on fact, they are actually potentially damaging to how we parents are viewed.
Here are my thoughts.
• when you've had no sleep ( no nanny to see to your child during those pesky awake times during the night), endless appointments at hospitals, those phonecalls you have to do yourself because you don't have a PA, and then doing the day to day household stuff it's hard to "go look for the support"
• accessing advice and support for you and your child regarding new symptoms, behaviours, things like OT, Physio and SALT can be difficult. Generally it involves getting someone to make a referral, waiting lists, and then being put on the caseload of a (usually) competant person who is too busy to give you what you need so you spend half your time leaving messages and waiting for them to ring back.
• it's not lazy to think it might be nice for help and support to come to you, particularly when things are difficult.
• help and support come in many forms- things like respite, help in the home and direct payments require assessments ( plural) from social services. That's if you can get them to speak to you, if you can get them pinned down to do the assessment, and if you meet the criteria for accessing help. These criteria aren't normally shared and you will get fobbed off and dismissed a lot. You then need to muster the energy to keep at them until they cave or you break down and then, maybe, you might get something.
•Once you access a service chances are your situation will be reassessed frequently to try to take it back off you.
• any support services, whether via charities or social services are dependant on their budgets. Those budget cuts you may have heard about Katie? Yes those. It means we get screwed.
• help and support aren't freely offered or easy to find out about. Unless a professional involved with you is in the know, or you have been pointed in the direction of a carer forum or support group ( again IF you've found the time to find these- more of this being "too lazy" to find help) you will be clueless about the types of support potentially available.
•oh and I almost forgot- everything is a postcode lottery!
Add to this normal family life, other kids, jobs, tiredness, stress and then a sick child...
DO WE STILL SOUND LAZY?
Well said xx
ReplyDeletewell said.
ReplyDeleteExactly she does not live in the same world of disability that the rest of us do. She lives in one that she has all the money she needs to chuck at the difficult struggles the rest of us have aka notliving in real world!
ReplyDeleteI sigh and roll my eyes. Yes ahe has a disabled son and does a fair bit for charity etc, between photoshoots, but oh dear how wrong can she be. Do have link to original Guardian article?
ReplyDeleteYou can listen on bbc iplayer I believe. She replied to people on twitter and genuinely seems to think you just roll up to the LA and they give you help.
ReplyDeleteWell said hun. I think katie needs to go a month with no money no pa no nanny and see how hard it is for us. Get in the real world katie price cos you will get a bloody shock
ReplyDeleteYup.... thats how it works. Thsts obviously why we are self raising through bloody hard work to get finn wheels he needs not what you can ve given. I am saddened she has done herself damage with these comments when she tries so hard with charities like jeans for genes.
ReplyDeleteGod if I was her, I would never have said all that. It's obvious to me that she's not having the same experience as most people I know, who have kids with health problems, because my friends in the same boat are keen to establish solidarity and share ideas with each other. It's not the right context for MummyBashing at all. She needs to read that beautiful piece, Welcome to Holland. The absolute gift of having a child with medical needs is the people that you find in the same situation who reach out to the rookies and try to back them up, while they find their way...
ReplyDelete