To the families I meet with disabled children

Sometimes I forget how privileged I am to be who I am. Some people will be surprised to read this but this is why… I have a disabled community I know who I look to if and when I need. I am ambitious and I am ultimately proud of being disabled. It’s taken years to get there but I can happily say I’m comfortable with who I am. Then I meet people randomly in the day who say they have a disabled child in their family too.

Sometimes they say this very quietly, they almost whisper it. Almost like it’s a secret club. (I mean, it is a great club.) Even though it’s the first time we meet, they share the experiences their children have (good and bad). I can see in their face that they are apprehensive. Apprehensive about sharing this but also about thinking of their child’s future. Sometimes I talk about what I do now, that I’m happy, I have a job, I have great friends and I’m about to start driving. You can see some of that apprehension slip… but not all of it.

With this in mind I thought I’d give some words of comfort to any parent/friend/uncle/aunt/cousin – (you get the gist) if you’re in this situation.

You are constantly learning

Obviously I’m speaking as the young person in this situation, but from the conversations I have it’s apparent that it’s the unknown that is scary. You’re probably having lot’s of conversations with professionals, doctors and other people. People who you know (and randomers) will ask you questions and sometimes you have no idea.

Soon you’ll have a speech prepared

With that in mind, as you meet more and more people – you’ll have the basics down. And even better you’ll be able to mould what you say, depending on the person you’re talking to. For example if I meet someone who asks an obviously ignorant question, I keep it short and simple. But if someone’s asking me something with the respect I will give them the deets, how my day has gone and what I’m having for my dinner.

Focus on the good stuff

Often with disability, we are taught by society and the media to be sad. We are ‘suffering’ and ‘affected’. We grieve what we can’t do. This last bit is obviously a little natural at first. But if you try and switch that and look at what we CAN do it can really start to change. Obviously, we all have bad days, it may involve pain, not being able to do the things you usually can or involve ignorance from people. And in that sense – of course we need to moan and let it out. But EVERYONE has interests and talents. It’s about digging deep and finding out what we really love to do and focus on that.

We all want the same things

This one I’m really passionate about. Remember, we ultimately of course want what everyone wants. Don’t dismiss anything because someone is disabled. People often assume disabled people don’t have friends, relationships, children, jobs, a sense of humour, ability to make decisions… the list is endless really. I honestly spend so much of my time explaining the basics, I know my disabled friends do too. So encourage everything.

Celebrate everything

And on that note, celebrate everything that is achieved. Being disabled can mean that it takes more time to navigate the world that has barriers. Things can be frustrating when you watch people around you acheiving so much more, quicker. So if someone has taken a trip for the first time, brilliant! Encourage to take the next small step, even if it scares you too.

It’s kind of like a game of snakes and ladders you may take one step forward and four  steps back but wait until you hit that ladder – wehey!

I hope this has helped anyone who may be in a similar situation. Remember this is only my own thoughts from my own experience – feel free to add any morecomments if you have any more advice for anyone. And my social media is always there if you want to ask more!

 

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