Growing up in this uncertain world is hard. Disability adds another dimension to the puzzle. Children and young people affected by learning, physical or sensory disabilities are likely to need further support and can leave their parents and carers feeling anxious about how to guide them towards maturity and independence.
Parents and carers can worry about their young peoples’ vulnerabilities. Perhaps this makes thoughts and conversations about guiding them as they grow up, more intense. Every parent worries and will mentally rack their brains over the sorts of opportunity they put before their children, asking themselves if the young person in question has the maturity or physical capability to cope with the situation.
Growing up can hardly be described as a linear process, with successes here and let downs there – and other complications, perhaps exacerbations or unexpected illnesses also getting in the way.
This is where a balance is crucial. Celebration of small and simple victories is an important aspect of nurture but so is a sense of reality. Children and young people protected entirely from the real world will undoubtedly face a terrible shock on their inevitable exposure to it. People, of course, aren’t always as patient, forgiving or trustworthy as they could be. In other words, protecting vulnerable people can make them even more vulnerable. The innocence and naivety of inexperience needs to be considered. The balance between too little experience and too much experience is important to maintain – and there is no instruction manual for every unique set of circumstances.
Here are a few points for parents and carers of disabled children and young people to consider…
Parents, in particular, of disabled children, can experience feelings of guilt, as if the added challenges of disability come directly from them. Even if there are genetic origins in your child’s disability, it’s a reality, not a choice. Disability happens. Give yourself a break.
You aren’t perfect
You knew this anyway but even so you probably harbour thoughts that other parents are. They aren’t. In any case, that’s not your business, just as the way you raise your own children is no concern of others. Your best is good enough and your children will love you for it.
Experience is the best (but toughest) teacher
There is little substitute for experience in learning about life. Preventing any child from being hurt is likely, eventually, to put them in the path of greater hurt still. Of course, be careful and cautious, whilst standing by to step in where necessary. Even if the lesson they learn is that you’re there for them when things don’t turn out so well, it’s a good one.
Parenting should be a celebration. There will always be small positives to focus on. For your children, this feeling of success will breed further success and winning will become a habit. If parts of this might sound like a feel-good construct, they are. Accepting people for who and what they are is the real key.
You won’t always realise the many different scenarios your children are facing, not least because you’re aren’t of the same generation as them and that the world is a different place today to the one you knew as a child. You need to make sure that your children have the conﬁdence to approach you to talk with you and receive your well won wisdom. Be a friend.
Sometimes you’ll be the villain
Tough choices mean that inevitably you’ll have a difference of opinion with your child. Keep the dialogue open if possible. Aim to explain your interventions constructively.
Be ready to laugh. Pick out what’s comical about a situation. Acting as if everything is serious is tiring, depressing and unsustainable.
You are a person ﬁrst, a parent second and a parent of a disabled person as well. Looking after yourself is important and will help you to take on challenges more positively. It’s also a great lesson to any child that the World does not revolve around them.
Your child is also a person ﬁrst and a disabled person second. Try not to reinforce their challenges by deﬁning their whole character by them.
Try to adopt a positive framework. Start with what is achievable, rather than what is not.
There will be points along the way when your disabled child will want to do something that their peers do that you aren’t comfortable with. This is likely to be something slightly beyond your control where you can’t see them or directly inﬂuence them. (For young people, this might be rites of passage moments such as travelling alone, being out after dark or drinking alcohol etc.) Sometimes it can seem as though there is a ‘gap’ between what they want to do and what you think they are capable of and dealing with it can be tricky.
Aim to talk things over rather than dismissing ideas out-of-hand. You might even choose to role-play certain scenarios to get a feel for how they’ll cope. Perhaps you could suggest a compromise such as coming home or receiving an update phone call at a certain time.
Learn from others
Get in touch via social media or at the school gate with other parents. Share your challenges and experiences – and more importantly, answers and solutions.
Don’t compare critically
Everybody’s journey is different. All people, in all walks of life compare themselves with others and parents are some of the most eager to play what can be a toxic game. Other people’s children might well be better at maths than yours, or get picked ﬁrst for the football team. Two things to remember might be that: ﬁrstly, parents exaggerate and that secondly, your child also has strengths and attributes that you should be proud of.
Trust your instincts
The phrase ‘Mum knows best’ needs a bit of an update to include dads and carers but in any case, it has a lot of truth to it. You know your child best and will certainly know what kind of a person you want them to become. Don’t let people sway you away from what you really think is the right thing for your child.
The best start any child could ever have and worth more than anything else you can ever give them.