Being a disabled teenager is hard. You have all the usual worries about fitting in, making friends and worrying about the future, but you times the severity of those feelings by about a 1000%.
Everything is so bloody difficult and a lot of the time, there is no road map.
That is why it is easy to turn to your parents for support.
And you should do that.
Your parents have been there from the start and they will know better than most what you have been through.
The bond been a parent and their disabled child will always be strong and you will always feel immense gratitude for everything that they have done/do.
Here’s the problem though…
You’re a disabled teenager now, not a child anymore and that means both you and your parents need to adapt.
It Is Time To Start Talking
As a disabled teenager, at some point, you will begin to think, “my parents aren’t listening.”
And this may well be true…
There will be new things that you want to try and things that your friends are doing, which you are not.
Here is the thing though, your parents probably haven’t caught up to the fact that you indeed a teenager.
So to them, you might still be a kid.
That’s normal for parents to think that way about their teenagers though, right?
Well yes it is.
But in the case of the average disabled teenager, your parents probably have a whole list of hang ups that they’ve never dared share with you.
That is why it is time to start talking.
So how do you go about starting those conversations?
Breaking Things Down
Starting those conversations with your parents or your disabled teenager is often a process of breaking things down.
This is because the big things are often the things that you think about first.
How are you/they going to find a job?
How they/you going to have relationship?
You both have to remember that these are end points and that you have to smaller.
Do you want to go out for a drink for example?
If that’s goal, sit down and talk about things like:
- How are you going to get there?
- How are going to get into the venue?
- What about going to the toilet?
Answering these questions can help set both of your minds at rest and make things seem more possible.
For some ideas about answering these questions, give this a read: https://ethosdisability.com/blog/wheelchairs/top-tips-for-wheelchair-pub-crawls-version-2/
Why Talking Might Not Work?
Those conversations might not work for any number of reasons.
But sometimes for the average disabled teenager, it can be for one very important reason for this.
Your parents can only see your limitations and not your potential.
Your parents are so used to doing things for you, and filling in what they see as those gaps that they cannot see a way you can.
As we have previously discussed, it is often the case that learning new things is just a process of breaking things down.
It might simply be that you just need to learn something new.
That is why, as hard as it might be to do, you need to stop listening to your parents.
It is time to start thinking about what YOU really want and going after it. The world is now full of inspiring disabled people who succeed in many walks of life.
Here are a few examples:
Emily Yates – Emily is an award winning travel writer who has been and continues to hop all around the globe – https://www.emilyroseyates.co.uk/
Aaron ‘Wheelz’ Fotheringham – Aaron is extreme wheelchair athlete who has appeared in Nitro Circus.
Liam Bairstow – Liam is better known as Alex from Coronation Street. https://www.youtube.com/watch?v=SR581PpKueU
Be Brave, Be Bold
It is easy to sit here and say, “be brave, be bold.
But you have to be.
Challenge yourself and be daring, despite what your parents say and push those boundaries.
What seems impossible is often just a matter of proper planning and forethought.
Take getting on a plane for example..
Getting on a plane as a disabled passenger can be simpler than for average joe.
Because, you can get someone to help you through the airport including, pushing you, carrying bags and guiding you the right way.
Also, YOU DO NOT NEED TO BOOK IN ADVANCE TO TRAVEL.
For more tips, see our guide for solo travellers.
So The Next Time…
So the next time that you hear, “no you can’t do that.”
“I don’t think that is such a good idea.”
It is time to throw the challenge down and realise that your parents are not always right.
For a child with physical impairment making friends as he/she gets older (ages 7 – 12) can be really tough.
This can be a number of reasons such as:
- The other children becoming more active.
- The child’s physical limitations becoming more apparent.
Having a small social circle and maybe not having many activities outside of school can be really troubling for many disabled kids. It can also negatively impact their mental health as well.
So what can you do about it?
First of all, there are number of specialist sports/activities for disabled kids. There can be some travel involved but it can be very worth it.
The great thing about adaptive sport is that it can build your child’s self-confidence and give them a sense of what they can do. This is as well as giving them the opportunity to make friends inside those new groups.
There also some great new organisations such CP Teens UK, which was founded by a teen with CP is a great community for making friends in a safe environment.
Don’t Be Scared About Them Being Online
It can be scary for a parent, there child being online and while there are obvious dangers to it, there are also many positives to be found.
Such as this story – https://www.bbc.co.uk/news/disability-47064773
It can be liberating particularly for those who might have severely restricted mobility.
You might worry that your child is too young or that they are spending too much time on a screen, but these are all things that you and your child need to work out together.
Why PAs Can Help Your Child Make Friends
Getting personal assistant/carer, can for some parents feel like extra added stress. as it is just something else to manage/ take care of.
However, since the switch to direct payments/personal budgets, there is ever greater flexibility, including many support services for users.
So what are personal budgets?
Direct Payments/Personal Budgets are where your local authority gives you money directly to employ and manage your child’s PAs.
Now as stated above you might be thinking that this just extra added hassle, but it can be the best thing in terms of getting your child out and engaged in activities.
This is because you have the control and you can choose person who fits with your child’s personality. They may have similar interests, be similar in terms of age and this gives your child the chance to have a ‘friend’.
Now it is important to explain to your (if they can understand) that the PA is fulfilling a role. But for many people having a PA is great way to build confidence, communication and social skills.
For Older Kids Who Want to Make Friends
There are now a number of charities and social enterprises that specifically cater for ‘older’ kids.
We know Yorkshire a bit better than other places so sorry for the Yorkshire centric examples but please do look in your own area – there will be something!
Dice Doncaster offer a range of events for adults with a disability and their friends – including accessible night club events.
Downs and Special Friends offer specialist events for young people with any kind of learning difficulty across West Yorks.
Stay Up Late – create opportunities for disabled people in the south of England to go out and enjoy gigs.
Managing a physical long-term condition can be tough, especially as we get older and good advice can be hard to come by. But doing some simple exercises on daily basis can make more of impact than you realise. So we’ve put together five simple exercises that you can either do in a morning or at night.
Ab crunches might seem like an obvious one but having a strong core is so important. It will improve your posture and make you feel more stable. Start with your back flat on the floor then tense your stomach. It doesn’t matter if you lift your shoulders off the floor but you should feel tension in your stomach. Aim for about 5 – 10 at once.
Lateral raises help loosen your lower back and ease those little aches and pains. Start with your body flat on floor and gently raise your body off the floor with your arms. Try to ensure that your pelvis stays as close to the floor as possible. Count to 10 slowly then go back down to the floor. Do this 3 times.
If your have condition that affects your mobility, hip pulls are great exercise! Hip flexors, the muscles right at the top of the hip can easily get very tight and painful if you sit a lot. Especially if you use a wheelchair or scooter. But there is an easy fix. Lay on your back and pull your knee into your chest for 10-15 seconds – rest for a minute and repeat 3 times.
Have problems with your shoulders? Do they get tight right somewhere in the middle? The Superman will help with that. Lay flat on the floor and lift your arms off the floor (it doesn’t matter how far) and push them out in front of you. You should feel a pinch in the middle of your shoulders. Count to 5 slowly and then release.
Arm raises help loosen those muscles right at the top of the shoulders and they simple to do. Sit in a chair and hold one side and then raise the other arm in the air. Count to 5 slowly then release. Do this on both sides.
A mix of these exercises on a daily basis can really help you avoid those aches and pains that dog your every day. They don’t cost anything, you don’t need any special equipment and there is no right way to do them. It is about what you can do and developing the range that you can achieve.
Consider downloading this exercise plan to support this site. Get it here.
The first thing people notice is the wheels, then they notice the blue glasses and they may get to what I am wearing, but not always.
Living with a long-term condition that creates additional needs, usually means one thing – people notice you. But they don’t notice you because you want to be noticed, they notice you because often they can’t help but.
You don’t want to be, you’re probably trying your hardest not to be; but that doesn’t matter. People look, they stare and they also probably say something. Something that probably makes you feel deeply uncomfortable but you have to laugh off.
You just want to be faceless ghost in the crowd, because you’re a commuter, a parent or a friend. Those immediately apparent things, they are not you. You read, you write, you sing or perhaps you just like sleeping.
Notice me when I want to be noticed; but the rest of the time; I just want to be anonymous.
I know that sounds like an odd thing to say; but it’s about having a voice of your own, about me being in control of the conversation.
Recently I had interesting experience; I queued up to board a plane and I just queued up.
There was no fuss, no hassle, I was just another person in the crowd and I loved it. I had anonymity. The very thing that I had been wanting all my life and never knew it. So I have spent a bit of time thinking about how I arrived at this point and I thought I’d share.
You might not agree but hopefully it should get you thinking….
Anonymity is all about planning…
Travelling on a plane for me, means ensuring that no one forgets to put my chair in the hold!
The standard guidance says to book your assistance 48 hours before. But as with many other forms of assisted travel, it is perfectly acceptable to just turn up (although I would suggest otherwise).
If you do decided to take a spur of the moment trip, miss a flight (I have done this) or have to take the long way round, just make sure that you arrive in plenty of time. Airports can usually accommodate you so long as they know you are there.
My top tip is actually to always leave yourself a buffer. If you have to get a train, all manner of things can befall you. The train could be late, they could be late getting you off and maybe it could be cancelled all together.
If you are there in plenty of time, the rules actually state that they have to do their best accommodate you – you’re entitled to random trips.
For more info on booking flights see: https://ethosdisability.com/wheelchair-flight-guide/
Having the right mix of products can make a big difference.
Sometimes we avoid thinking about problems because they cause anxiety and reservations. But thinking about the potential problems that you might face is a road to possible solutions.
For example, I don’t like putting things in my pocket because it can be hard to get them out again!
So I have started using Quokka bag as man purse –
If it works for Ragelio – it works for me). Read our full review of Quokka here. You can buy Quokka here – http://www.bettermobility.co.uk/catalog/product.php?CI_ID=2734
But for me hand luggage is a problem that I had to think about – I have all the wheels that I can handle, so why would I go for a wheelie?
Nah I need a Cabin Max because it keeps my hands free –
I always find my smartphone to be a important tool. When I’m flying – I always have my boarding pass on my phone ready. Less paper is not only better for the environment but also less fiddle things to mess around with.
Planning and products are the keys to becoming Anonymous….
Winter is coming. The leaves are falling from the trees, the temperature is dropping and you’re starting to see adverts for Xmas. A lot of people enjoy this time of year – you can stuff yourself with indulgent food and that cosy onsie that feels like sweat suit during the summer.
However if you’re a person living with Cerebral Palsy, the change of season can be a tricky thing to deal with. Our bodies’ don’t do well in the cold and I think all of us would agree – if we could all live in the Orange County – we would. I’ll keep holding on to that dream.
But fear not friends. I’ve picked up some helpful tips over the years that I thought were worth sharing.
Boil Yourself In a Morning
I use to prefer baths – I use to think that my Cerebral Palsy did better in baths. How wrong I was. Showers are the way forwards. Get in there, turn the temp dial up and don’t come out until your pink. The heat and steam will help all those tricky spasms just drop right out of you.
Scarfs and Cerebral Palsy – A Winning Combination
A proper winter coat – check. Thick cotton socks – check. Most clothing options for in winter are obvious. But one accessory that I always seemed to miss was a scarf. And yet for a lot of people with Cerebral Palsy, a scarf can be the most important choice. Certainly with my Cerebral Palsy, I use my neck as a fixing point and this means that it can stiffen up quick even when it is warm. Check out some options here – check out some options here.
Get Out and About
Getting out and about as it gets colder and darker can be very hard. But us humans (even ones with Cerebral Palsy), are designed to move around. There are a variety of things that can help such as hand cycles and big tires. Check out our guide to winter in wheelchair for some helpful ideas.
Google Maps is fast becoming my must have tool for independence. Being both visual impaired and wheelchair bound, I always have additional considerations when planning a route to go anywhere.
Google Maps not only helps me plan my trip in advance, gets me out of trouble if things go wrong. It is not just the route planner, it is also street view – which allows me to figure out which I need to go to find a drop curb or the safest crossing.
Google Maps – My Safety Net
I cannot see all that well. My spacial awareness is pretty poor and from what I understand, these are very common problems for many with Cerebral Palsy and associated neuro conditions. If I am going somewhere unfamiliar or via different route – I often became nervous at the prospect.
Having Google Maps on my phone as often put me at ease. Even if I cannot see the map clearly, audio instructions can be fed through my earphones. This means that half the time – people do not even know that I am using Maps.
Recently, one of Google’s new objectives that includes sending men to Mars and building robots – also includes mapping the world. Through direct teams and freelance contributors – Google hopes to map the entire world.
Providing panoramic images of streets and places across the world. These images are integrated into Maps, the reason I love this feature is I can use Maps to form a plan of attack.
Want to avoid cobbles? No problem.
Want to go the flat way round? Cool.
Also if you want to be really strategic, you can even plan a route that takes important stops like accessible loos.
Maps also boasts a bunch of integration with other apps that I love. The one that I am loving most at the moment is booking Uber through Google Maps for journey that I’ve just entered.
If you’ve got poor coordination like me, chopping fruit and veg can be risky business. I nearly lost the top of my right thumb once trying to cut a potato once…
But recently I came across a nifty little life hack that I think really useful for those who like food and have poor coordination.
The hack is a pretty simple one – us a hair grip to hold the onion and chop it in the gaps. I’ve done this myself and I like it. The first thing is the hair pick keeps the onion stable. It also keeps your hand away from the blade.
Check out more life hacks here: https://www.youtube.com/channel/UC0rDDvHM7u_7aWgAojSXl1Q
Your health condition changes over time. Whether the changes come because of the nature of your condition or because of your environment – your condition will change.
And it is important to recognise those changes and it is important to be able to think through what they mean.
I think a good analogy is buying a car. That sporty little number that you loved in your 20s isn’t so great when you have a family of four and a dog. Your needs change over time and for a variety of different reasons.
Becoming Condition Driven Consumers
Here at ED, we recently had a young man come to us because he sensed that his condition was changing. He was older, he was working and he felt that his current wheelchair wasn’t meeting the needs of his condition anymore.
But here’s the thing… He had no idea what to do about it. So we gave him some advice that he said was good so I thought that I’d share it with you.
Write down your goals and think about what you want.
I think that this is a big one that not enough people with long-term conditions think about. What your goals are and what you want are big important things. Going to university, getting involved in sport or even just taking the dog for a walk.
Look for information on your condition
This is something that we at ED can offer. But there are now many good quality sources of information around. Here are a few:
Facebook – Facebook now has lots of condition specific groups that are filled with active community members.
Scope Community – Scope’s community pages have lots of really useful contributions on a variety of different topics.
Our Blog – We tag everything that we write by conditions so if you go to our blog page, you can filter blogs by condition.
Step 3 – Tell Someone
Our client decided that it was a new wheelchair that he needed – one that better fit the changed needs of his condition. Said client was worried though – he was worried because he’d long since been given a new chair and thought that meant the NHS wouldn’t support him getting another.
That is not the case. The NHS are happy to support you with voucher (see Buying A Wheelchair) for a new wheelchair if you can demonstrate your the needs of your condition have changed. Your condition is more than some medical label. Its how old you are, its where you in your life’s journey and its about what your goals are. That is your condition. That is why you need to be an active consumer.
Here at ED, we’re always here to help you. We can listen and support you through the process of deciding what is important to you. Contact Us today.
Getting in the gym with Cerebral Palsy should not be scary. In fact, I love the gym and when I have the CP problem – the gym is the place that I go to. So I decided to share my Cerebral Palsy gym session secrets. I’m going to try cover a lot of ground in a small amount of words – so if you have any specific questions, please either leave comments or message me directly.
Working in the gym will not increase the spasticity in your muscles.
All gyms have a legal responsibility to be accessible and cater for disabled people.
You can OVER stretch your muscles – so be careful.
The Cerebral Palsy Gym Session Golden Rules
- Work the legs – one of the keys to a good Cerebral Palsy gym session is to include exercises that work your legs.
- Get out of your chair.
- Always try and work the bad side!
- Don’t be scared of free weights.
- Always go for less weight and better form.
This is a variation of the session that I would do myself. If you want to lose weight, tone up or get stronger, this session will help you on the way to achieving those goals.
The Warm Up
Following gold rule #1 (work the legs), I like to start the warm up with 10 minutes on the recumbent bike. Recumbent bikes are easier to mount then regular gym bikes so you should be able to transfer to and from your chair easily. If you’re not use to cycling, just try and turn your legs over. No need to go crazy.
The mat is the place where you get into gold rule #2. You can get out onto a mat and perform all kinds of exercises that will increase your range of motion and help iron out wrinkles in those naughty muscles.
Here is what I do in my Cerebral Palsy gym session:
Lateral leg raises – lie flat on the mat, raise your legs and then slow extend one leg at a time. Do 5 on each leg.
Butt Clenches – lie on your side and pull your knees close to your chest – then slowly raise one knee off the other. Do 5 on each side.
Wing stretches (use a theraband) – take the band in both hands and put it behind your head, then stretch out your hands as far as they will go. Hold that position for about 10 seconds and then rest. Repeat 4 times. If you have a bad side, then I suggest trying to work it by holding one side of the band with your good hand and pulling with less mobile hand. No matter how limited the movement might be – some movement is better than none – golden rule #3
You can buy a Theraband pack here.
If you can stand, then do stand for this. If not try kneeling so that your bum is in the air. Your going to need dumbbells for this – so if you have gripping problems – consider using these Active Hands gripping aids – they’ll help you.
Whether your ambulant or use a wheelchair, this shoulder conditioner should be in your Cerebral Palsy gym session.
One of the keys to this exercise is to get a good range of movement. So do not worry about the weight of the dumbbells – I’d start on 2.5kg to begin with. You can always add weight later.
- 6 x lateral raises – hold the dumbbells with the back of your hands facing outwards and raise them up to the top of your chest.
- 6 x bicep curls – try not to swing your arms.
- 6 x shoulder presses – try and keep your elbows level with level with your shoulder line.
If you are hemiplegic try and do all these exercises, no matter how limited the movement might be. If you are hemiplegic, change the shoulder press for a raise. Try and raise the dumbbell as high as you can, do this one arm at a time.
Rest for 2 minutes between sets and repeat 3 times.
If you can – try going on the rower for 15 minutes to finish. You want to going along at no more than 27 strokes per minute. Remember to try and keep both sides of your body even and use a gripping aid if you need to.
Why Trust Me?
I’ve been a competing para sport since age of 11. I have competed as wheelchair sprinter internationally for Great Britain all over the world. I also have a degree in sports science and have worked with many disabled athletes over the years.
You’ve over-indulged during Xmas and the new year. You sat there on the stroke of midnight and promised yourself that this was the year that you were going to get fit!
But getting fit with physical disability can seem like a daunting prospect . You don’t want to do anything that might aggravate your condition or cause you to unknowingly injury yourself.
Your probably asking yourself these questions:
- Where do I go?
- What do I do?
- How often should I do something?
The first thing that I will say is: IF YOU HAVE A LONG TERM CONDITION, ALWAYS SEEK GUIDANCE BEFORE UNDERTAKING ANY PHYSICAL ACTIVITY.
Right now the disclaimer is out of the way, lets get on with the meet of this blog.
Getting Fit With A Physical Disability Whilst Having Fun
Getting fit with a physical disability should not be daunting and can be a lot of fun. It can be a chance to make new friends and try thins that you never thought were possible. Here I will run down quick list of some organisations that can provide you with some new and exciting opportunities:
CP Sport England and Wales – Their motto is ‘Play. Participate. Enjoy.’, and I can tell you from personal experience that is exactly what you’ll get. They welcome people of all ages and abilities, and you don’t need to have Cerebral Palsy to participate either! They offer football, athletics and swimming as options for getting fit with a physical disability. They operate more in the midlands and the north,
WheelPower – WheelPower are an organisation based in the legendary Stoke Mandeville and offer many of the same opportunities as CP Sport but just based more in the south.
Smile Through Sport – STS is a new organisation created by the living legend Stephen Miller Mbe to create more opportunities for people to get fit and have fun in the Northeast.
Wheelchair Rugby – Getting fit with a physical disability does not always have to be safe. Wheelchair Rugby is the option for those of us who like life a little rougher.
What If I Don’t Want To Play Sport
Getting fit with a physical disability does not have to be all about getting involved in sport. Equipment like hand cycles can transform your wheelchair and get you going places that you never thought possible! Read our guide to buying hand cycles here.
Upgrade Your Wheelchair
Maybe the key to getting fit for you is a new wheelchair? The right wheelchair can open up the world for you. Check out our guide to buying a wheelchair here.
What About In The Gym
That’s my good friend Rob Smith in the gym using Active Hands. Active Hands’ gripping aids are a great way to make the most annoying gym equipment accessible!
Over the next few weeks, I’ll be blogging from the gym about how to achieve your fitness goals, whatever your disability is!