The Ratcliffe Family consists of two dads, Garry and Kyle, and four kids – Haydn, Isobella, Curly and Phoebe – three of whom have a disability. Haydn has cerebral palsy and is blind in one eye, Bella has Downs Syndrome and Curtis has a number of impairments and conditions including cerebral palsy, epilepsy, global developmental delay and he is blind too.
Here Kyle and Gary, write a letter to you to help you in the journey to get a better start in life for your disabled child.
We are writing to you as two dads of four awesome kids. Three of whom have a disability. We wanted to let you know about some of the things we have picked up over the years. Our toolbox of tips, tricks and attitudes that every parent of a disabled child needs on a daily basis!
Our children get to do everything that every little person should do!
Never let anyone tell you that your child “can’t” do something because of their disability.
It’s currently Half Term, and our kids are already exhausted! It’s only Wednesday and we’ve already been punting on the river in Canterbury, pumpkin picking in Medway, Chinese buffet eating, Leeds Castle exploring and sightseeing in London.
Curtis loves the smell of the flowers, Bella loves the variety of food at the Chinese, Haydn enjoys being surrounded by different people to talk to, and Phoebe (our non-disabled daughter) gets the chance to explore and climb.
Each of our children gets something different out of every experience. Our children get to do everything that every little person should do!
Warrior parent needs to come out every so often
Be prepared to face a side of you that you might never have seen. Warrior parent needs to come out every so often. When your child isn’t getting a good deal, don’t be afraid to challenge people. Whether in a shop, during a visit to an attraction or a medical service you encounter on a regular basis.
There should never be an apology or excuse made for our children. We always make sure they are treated equally. Good luck to any shop assistant that thinks it’s okay to show us to the disabled changing facilities in a shop, that is clearly being used as a second stock cupboard. Not acceptable.
Start to build up a series of questions ready to challenge systems
What to do when you are at your wits end with frustration. It will happen, regularly. Usually with people that really should know better.
Start to build up a set of questions. Use flashcards if you need to in the early days. Some questions we have found useful are:
- “What policy does this ridiculous decision come from?”
- “What is your complaints procedure?”
- “Who is your line manager?”
- “Explain to me how this decision is in the best interests of my child?”
- “Do you know the contact details for our local MP?”
These are all useful when challenging systems – systems that were often designed for the majority of the population – but never designed for the people that need them the most!
Appreciate the small things. Celebrate the smallest steps
As we are sitting here, writing this letter to you, we would like to say to you, appreciate the small things. Celebrate the smallest of steps. Live in the present and be thankful for every little success.
Yesterday, we took about 50 photos of our son, Curtis, who was having a particularly good day. Not because he had just won a football match, not because he swam a length of the swimming pool. Not even because he managed to tie his shoelaces for the first time. But because he smiled. Yes, that’s right. Curtis smiled yesterday. The most infectious, smiley smile that you could ever imagine. A smile that curled up one side of his face. A smile that said “I’m really happy today, dad”. A smile that made us smile too. It’s not the big things that matter when you have a disabled child. It is the smallest step, the greatest achievements that mean the very best.
Worry about the things you can control
Having a disabled child will mean that there are dark days as well as light ones. But hey, that’s parenthood! If you have a non-disabled child, you might worry about their friendship groups as they get older. We have worries too, as parents of disabled children. All we would say is, don’t let things worry you that you can’t control. Worry about the things you can control which is why, right now, we are off outside. To swing on a swing, slide on a slide, to push some warm hot chocolate through a feeding tube, and hope and pray for one more sunny day.
Garry and Kyle Ratcliffe
Now is the Time to be a Disability Gamechanger, sign our petition calling for a new Minister for Disabled Children and Families.
Appoint the first ever Minister for Disabled Children and Families. This appointment would lead to improved accountability for how laws and policies affecting disabled children and their families are made. A dedicated Minister can strengthen how Government and services like the NHS work together to make sure families receive the right support.