What's it like to be a parent carer
You might not realise that you are a 'parent carer'. Circumstances can often mean that what you class as 'life' others would refer to as being a carer. For others it's more straightforward, but whatever the case, whatever your situation, we are here to help put right some of the wrongs in services provided for our children.
This page has a wonderful poem by Emily Perl Kingsley called Welcome to Holland. It is a poem for all parents.
Welcome to Holland - a poem for parents
by Emily Perl Kingsley (copyright accepted)
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
"The diagnosis was a big relief- it proved that i'm not a bad parent, and my child's not badly behaved"
" I haven't had an undisturbed night since my child was born - I just want a night off"
" I never thought of myself as a carer - but you're right that's what i am"
" After I've toileted, washed, fed, dressed, cajoled. comforted, & dragged my child down the road, I just want the school to say 'well done for getting here' instead they tell me off for being late"
" You have to be so thick-skinned - people tut-tutting, others saying 'just give him to me for 2 hours and i'll sort him out"
" All these people come into my house and say ' Have you tried this....' Of course i've tried that..., what do you think I've been doing 24/7? It doesn't work!"
"My life's shrunk now - my child doesn't do supermarkets, restaurants, trains, buses, holidays, outings, cinemas,..."
" It's a sad truth that many friends disappear when you have a disabled child. But you make new friends with other parent carers"
" My future's different to yours, it's unlikely my child will ever leave home - that's a worry"