I have three children. All three have an undiagnosed genetic condition. One is a wheelchair user, has feeding tubes, and complex medical needs, one is a bit wobbly on his feet, is on the autistic spectrum and falls down a lot and one does ballet and walks in a straight line, but can't ride a bike, has bowel and bladder issues and her knees do things that make me feel a bit nauseous.
They are all very different children with very different needs, and thanks to them I have experienced the good, the bad and the ugly faces of children's services.
Having a child with disabilities can be tough. Having a child with an undiagnosed condition can be especially difficult. Problems include accessing services that rely on a diagnosis to know how the should help you; problems being dismissed as unimportant as they can't be if there isn't a 'proper' diagnosis; the uncertainty of not having a prognosis.
There are no medical books for doctors to turn to, no specialists to advise them, no advice for teachers to rely on about what issues to expect in the classroom, parents accused of fabricating their children's symptoms when the doctors can't find the cause. The list goes on.
These children are complicated, they are unknown qualities that professionals are trying to fit into systems that rely on measuring known parameters. We don't have a system that can support everyone, so without assurances that a prognosis brings, it can be easy to dismiss the undiagnosed child in order to support the child that you can predict the outcomes for.
So how do you change a system that is built for children with a diagnosis to recognise and support children that have a condition that is so rare that they may never be diagnosed? When you are living in an ongoing limbo, scared to know the future and scared not to, it can be easy to be angry at the system, and to be angry at the people working in the system.
When I was thinking of ideas for this year's Undiagnosed Children's Day video and going over the issues that families write about in the SWAN UK community the exhaustion and frustration of many of the parents are starkly apparent. We SEND parents are very quick to share our frustrations on social media. It can make you feel so much better to thoroughly annihilate a jobsworthy middle management type who has just acted like a dick on the phone to you when you just needed something to be simple.
Those formulaic 'ten things that people without a disabled child say that are really stupid' posts are the most shared SEN posts on Facebook. I have a feeling that it's because we are all secretly delighted that someone has identified us as smarter, wiser and more broad minded than those other people, so we share it with as many people as we can and feel somehow slightly superior to the other parents as you walk across the school playground that afternoon. And when we do this, and click the 'like' button, and share it with our friends saying, 'please share this to to help raise awareness', we get to convince ourselves that we are educating people at the same time as reminding them of our moral superiority.
But if we were being honest with ourselves, do we really think that those posts do anything to help encourage inclusion in our society? Just think about it for a moment, when was the last time someone told you that you were an idiot, and you thought, 'Oh wow, thanks so much for pointing that out, and I especially appreciate the fact that you took the time to share it on Facebook with all your friends. As I now feel so warmly towards you, I suddenly feel motivated to take everything that you say onboard and change my stupid ways'? Yeah, not so much.
We know with our children that praising them when they get it right is the very best way to teach them right from wrong. So why do we continue to convince ourselves that we are helping the SEND community and encouraging inclusion by excluding the very people we are telling ourselves we are educating?
There will always be many frustrations being a parent of a child with disabilities, especially if the path isn't that clear cut. But this is just one part of our lives; it shouldn't overshadow the funny, embarrassing, joyous, loving, amazing parts that can be found when you least expect them. I come across people everyday that are kind, considerate, helpful and delighted by my children, and I have had the privilege of meeting some professionals that I will never forget because of small acts of kindness, sensitivity or thoughtfulness that have made a real difference to my children's care. Isn't it about time that the SEND community educated society by applauding the people who have got it right? By making an example of the ones who are making a difference and who are working with us to try and make services work for our children?
It was with this in mind that I started putting together the film for Undiagnosed Children's Day with my children. Our effort to educate professionals who might not always be getting it right by saying thank you to the professionals who already are. Hope you like it!
Previously Renata has been at the forefront of successfully changing government policy so interventions are needs-led and no longer diagnosis-led, and creating the world’s first specialist nurse for undiagnosed children at Great Ormond Street Hospital.
She also helped establish and grow the first online support community for families of undiagnosed children and spearheaded the very first undiagnosed children’s awareness day, including producing information videos that were shown in parliament.
She is a regular speaker on TV and at events, is an RSA Fellow and the mother of three children with disabilities, two of whom have complex needs and one of whom also has complex medical needs.
- Neurodiversity and Ableism – a young person’s perspective - April 28, 2023
- Where is the Best Accessible Museum for Children? Vote now! - March 27, 2023
- Nowhere to go: The lack of provision for young people with complex needs - February 22, 2023
Love it. We have many people to say thank you to, too. Great reminder x
Fab video. Love this, really inspired.