My Choice… A Parent Perspective

The day you have to start letting your kids make their own choices is a tough one! You have to lean in and hope all the parenting you have done so far has set them up to make good choices…

With typical kids, this creeps in. We slowly release the power to them until one day we look back and find our cute cuddly babies are suddenly out there making their own choices (even when we don't like those choices) and living their own lives, their own way. God knows it’s not all sunshine and buttercups. Letting our kids go is hard, it’s terrifying, and some of us cling on too long. But eventually it’s time to let them make their way in the world.

When your child has a learning difficulty this is a whole different journey! But the real question is... should it be that different?

The process of letting go and handing over that power becomes a minefield of decisions around balancing independence with capacity, love with safety and fear with risk.

It’s so easy to feel hyper protective over our children, and as they grow up new fears arise – worries around friendships, keeping our children safe, independent living, and so much more. We want to wrap them in bubble wrap and simply keep them safe. And if we are really honest, that’s what the rest of the world wants us to do too.

It’s easier for everyone if we hold those young people close, we make the best choices for them, we keep them at home where they are safe and protected. Everyone is happy right? That’s our job as parents.

WRONG!

No one really wins when we overprotect our young people. We take away their independence, we stifle their relationships and opportunities to live a life that balances the risks with the benefits. A life where they experience different things and make the choices that really matter. A life where they can take risks and can fail! We talk so much about resilience and how we all learn from failure, but our children are robbed of those opportunities.

They remain our cute and cuddly babies. Even when they tower over us, we still see them as ours to protect and in doing so we decide their lives for them.  We want them to be self-sufficient, independent members of society but that doesn’t happen overnight. There are so many moving parts which lead to this future, and one we often overlook is decision making. Our children and young people’s ability to make decisions is easy to forget, when so regularly we are asked to make decisions for them. Some of these are logical: do we want to send them to a mainstream or special school, should we take them to the doctor for that cough they’ve had for a while… But each day we take decisions out of their hands, sometimes without even realising. What do you want to eat? Do you want to hang out with these friends?

Let’s meet Elliot and Lauren. Elliot is a 12-year-old boy who has Down’s syndrome; Lauren is his mum. She hopes that he will “be as independent as possible” as he grows up, and one of the key ways she is working on this at the moment is his ability to understand healthy eating and lifestyles. Explaining all about the healthy decisions they make at home is just one aspect. But as he has moved on to secondary school, Elliot can now choose his lunch at school, and Lauren doesn’t have control or knowledge about what it is he is choosing to eat. He has the right to make this choice, understand the possible consequences of making unhealthy life choices, and to start to make healthier decisions.

Does Elliot make good decisions about his food everyday? Probably not. But then what child does? Giving him the power to make small decisions, form opinions, have agency in his own life is the key to building a path to a life where he has as much control as he can over the big stuff: where do you want to live? Who do you want to live with? Would you like to work? If so where and doing what?

Don’t get us wrong, just by letting your child decide on his school dinner won’t be the make or break for this idyllic future of independence. But it is the start, with every small decision you can give them, the bigger decisions become more possible.

Having a child, young person, or young adult with a learning disability is complicated, not least because of the range of needs under the umbrella of ‘learning disability’. Each individual is just that – an individual – with their own needs, wants, struggles, health problems, and plans for the future. And in amongst all of this, the mental capacity of our young people might have to take precedent. As parents, encouraging independence and empowered decision making is so key, but there will be times when we need to step in and make decisions on their behalf. But helping them to understand why this is the case will only help them to acknowledge their independence, autonomy, and level of reliance on family members or next of kin. If someone else is going to decide where I live then I sure as hell would like to know why they get to make that choice and how much say I do have.

Our next series in Learning for Life will be a lifeline for empowering decision making amongst our community. Teaching on what decisions are, what rights are, when decisions might be taken on their behalf and why, this new series will ensure that young people are as involved as possible in decisions about their lives. This will mean they can meaningfully input into where they live – something that as typical adults we so often take for granted. It will also mean that when and if these individuals move out of the family home and into supported living, residential settings, or independent living they will understand where they have the right to make a decision, when they may not have a parent or carer with their best interests there to advocate on their behalf.

This isn’t conventional teaching. It’s something as parents we might overlook, or simply shy away because honestly… it’s hard, it’s scary, and it’s easier to push it away.

We (and we all do it sometimes) fail to consider decision making skills in the must have education lists of things we’d like our young people to have as they grow up and move on with their lives.

We can help you and your young person to overcome this and reap the benefits. But we can’t make this happen without you.

Without donations we can’t create of this new series, we can’t deliver this support, so if you, like us, believe that every child deserves a say in their future then please help by donating today

Supporting us means empowering your young person to grow up independently and safely.