In 2021/22 11% of children were living with a disability. I was only 15 months old when I was diagnosed with Rheumatoid Arthritis - something many people associate with older people. Since then the diagnoses have kept coming. I now live with an ileostomy due to Crohn's Disease. I was diagnosed with uveitis at the age of seven and have regular flare-ups. This has left me with little sight in my left eye and is a condition often found in children who have arthritis. I also have Adrenal Insufficiency, which was only diagnosed last year. I had a hip replacement at the age of 23 and my elbows are stuck, permanently bent. Due to the damage caused by arthritis in my right knee, I am unable to kneel on it or bend it too far as it locks.
Despite all this, I feel that I am a pretty positive person most of the time. We all have bad days and I occasionally get down and utter those inevitable words - why me - but on the whole I enjoy my life. While I appreciate that my own outlook, positive nature, and tenacity help with this, I do feel that the supportive team around me growing up had a huge impact on my mindset and outlook.
For Children's Mental Health Week 2024, I thought I would share my 10 top tips for parents and carers of disabled - how you can help support them and their mental health as they navigate the world.
1) Allow them some autonomy
As with any child, the more they grow and develop, the more autonomy we have to give them to help them become independent, This is the same and potentially more important, when your child has a disability. They need to learn about their condition, understand their medications, and be able to communicate with their medical team.
I was really lucky as a child to have a family and medical team that nurtured me in many different ways. My pediatrician and rheumatologist pioneered (at the time) a joint clinic that I could attend with the two of them there, plus my O.T. and physio. It meant less time off school for multiple different appointments and made sure we were all on the same page as we moved forward. As I got older, they started to ask my opinion on different procedures and medications they wanted to try. The final decision rested with my Mum, but being part of the conversation really helped me gain confidence and an understanding of my conditions.
As a teacher who previously worked in a SEND school with non-verbal children, I realised even the smallest choices, such as choosing their outfit each day, is one that shouldn't be underestimated.
2) Be realistic
Children spot a lie from a mile off and aren't afraid to call you out. One thing that has always frustrated me is the 'you can do anything' saying. I can't do everything. I can't go skiing for example, since my hip replacement. To be honest, I'm less action Barbie and more 'sit in a cosy lodge next to an open fire drinking hot chocolate' kind of girl, but this can get frustrating as hell. I am so proud of the achievements I have made despite all my health issues. I got a first-class honours degree, had two children, completed my teacher training and am now teaching in an amazing primary school. This isn't about setting low or no goals - but setting realistic ones is important for all children.
3) Make sure they still get the chance to be a child
So important! Accessibility is getting better all the time and a disability shouldn't stop you from all the 'normal' kid activities - going to the park, going swimming, theme parks, beach days, sleepovers with friends. While adjustments may need to be made - the sleepovers may need to start at your house so you can give medication etc. as needed, a disability shouldn't stop a child from enjoying all these experiences.
4) Seek out child-centered charities
There are a wide range of charities that support disabled children and their families in the UK. A quick Google search can help you find support available near you. There are also many condition-specific charities with dedicated support for children and young people as well.
As a teenager, I went on a long weekend with (Young) Arthritis Care and we did a huge range of workshops and activities together which was amazing. 24 years on and I am still in touch with a couple of the other teens I met there. Having people who understand and have similar experiences to you cannot be underestimated.
5) Ask for help with your child's mental health - and the whole family as needed
Not only is mental health support something you can ask about from your child's medical team, but it is something you should also seek out for yourself and other family members as needed. Going to your GP is often the best idea to find out what is available in your area, but many charities can also help with this. A diagnosis can rock your child's world but is also impacts their parents, carers, siblings, and possibly even wider family members. Seeking support for yourself will not only benefit you but your child too. Not only are you setting a positive example but you will be better equipped to support them as well.
6) Help them grow their identity outside of being a disabled child
I happily identify as a disabled woman. However, I am keen to point out that my disability is only part of me and I am many other things as well. Growing up with a disability can mean you spend a lot of time in the hospital. Ensure your child can pursue their talents and interests away from all this. Can they join a local music group or a sports team? Do they enjoy creating art, making up stories, or cooking? Encourage their pursuits outside of being disabled, while encouraging a positive attitude toward their disability.
7) Liaise with their team and school regularly and effectively
I was lucky enough to have a fantastic medical team that made this easy, but keeping open lines of communication with everyone involved in your child's care is really helpful. Ensuring the medical team are in touch with your child's school can help make sure they have the equipment and understanding needed for them to thrive and do well. For instance, I was always sat facing the board in classes, had a sloping desk when I needed it and got extra time in my GCSE exams so I could take regular breaks from writing.
8) Encourage them to take ownership
As your child gets older, have them start to take ownership of things. Get them a calendar to keep track of appointments, let them (under supervision of course if younger) sort their medications and learn to do injections etc. When you start to feel like you have control, you no longer feel that your condition owns you anymore and this can really help your mental health.
9) Listen and allow them to express their feelings
Sometimes you're child will be angry at the world for having to deal with this, sometimes they will be sad. Learn to listen and allow them space to feel their feelings and let them out. Rather than trying to get them to squash these feelings or fix them, tell them you understand and it is really rubbish! If you feel like they need more support to deal with their feelings, again, seeking professional help is always good.
“As a child, I always knew I was different - and not just in a teenage angst type way. This was dismissed too often; as it turns out, I’m Autistic! And this is too common an experience. This dramatically impacted my mental health, in terms of its set up for later life - enough so I recently started treatment for anxiety. We need to tap into our children, their nuances - and to care more outside the platitudes that stop at the age of 18.”
Lydia Wilkins, AccessAble Ambassador
10) Use the AccessAble Access Guides
The AccessAble Guides are great for plannng family days out. You can check out all the facilities a place has to offer and decide if it is suitable for you and your family to visit. Checking the app takes no time at all, but helps give you the peace of mind before travelling somewhere new.
I hope these tips will be useful to some of you who have children and young people navigating chronic illnesses and disabilities. While it is not always easy, there are also many positives and happy moments to be had from life along the way.
See more from Natalie
What to read next:
Disability History Month - a letter to my younger self by Emma Purcell
Using AccessAble for an Accessible summer holiday by Joanna Brett
15 Tips for Planning an Accessible Day Out with Kids by Natalie Gardner