Friday 25 April 2014

Undiagnosed Children's Awareness Day

"What on earth is that?" I hear you say. And a few short years ago I would have been saying the same. How in the 21st Century, can doctors in the Western World not work out the underlying cause for a collection of symptoms? But you would be surprised. There are many, many people living without a name for their difficulties, disabilities and challenges. Most of them are children - because some do go on to receive a diagnosis as time (and medical science) progresses, and also because some of them don't grow up to be adults. Too many. And children without a diagnosis are more likely to receive poorer care and support as with a diagnosis, comes understanding and a degree of expectation. There is none of this without a name.

Bringing up a child - or children - with additional needs of any kind is exhausting and often overwhelming. There is a wonderful essay called "Welcome to Holland" by Emily Kingsley which sums up so eloquently the painful journey parents of children with additional needs and disabilities go on. It is now a moving YouTube video here.

You see, without a name for those symptoms and challenges your child or children are struggling with - that you are drowning in as a family, you become even more isolated. There is no signpost to direct you to a support group, someone who knows what you are going through, no online information on what to expect.

Diagnoses open doors, and sadly-  without one you can feel utterly alone.

What IS shocking is how easily this could be your kids. Or mine. Because that's the isolating position we find ourselves in here - a growing collection of symptoms, many of them with a name but no definitive umbrella term to explain why we are dealing with so many different things.

It would be all too easy to get constantly caught up in it all, and sometimes we do. It's unavoidable. But most of the time, we are parents with four wonderful children. Maybe life isn't exactly what I planned, but in many, many ways, it's actually better.

If you haven't seen it yet, I urge you to see the amazing video Renata from Just Bring the Chocolate has made for Undiagnosed Children's Awareness Day.

It is a masterpiece which has taken many hours of work, and which carries such an important message-

Children with or without a diagnosis are still children and deserve the chance to BE children. No one with additional needs should be defined by their label - and those without one deserve their childhood as much as any other child. The intensive focus on symptoms whilst seeking diagnoses should never hide the child within.

Which made me think.

Because in recent weeks I have become increasingly aware how we are blurring the boundaries between childhood and adulthood for ALL children, and in seeking to support children's "rights" and "needs" I believe we are actually depriving of them of their one fundamental right - the most important of all, to be the child that they are.

My sixteen year old had blood tests and I couldn't access his results without his permission. Yet he's a child, and I'm his mother with parental responsibility. My twelve year old is supported at school through the CAF process and, as a twelve year old is officially supposed to be present for meetings, involved in them and receive copies of the minutes. He's twelve. With Autism. So his emotional age is considerably lower than twelve - but that's almost irrelevant as in my opinion any twelve year old would be too young to hear adults discussing them in this way.

Then there are the doctors who discuss scary medical conditions in front of young children, even sharing diagnoses (like our son's Aspergers Syndrome) with the six year old child without consulting the parents to find out whether their views on this.

Children should not be "seen and not heard" they DO have rights and needs, but the most fundamental of those is to be allowed to BE A CHILD. And that means being treated as such. In an age appropriate manner which always recognises the need to preserve that innocence which - once lost, can never be regained.




Children with additional needs often grow up faster than their peers, facing issues most adults never have to consider. For those without a diagnosis the world can seem an uncertain place. If we cannot give them a diagnosis, at least give them their childhood.

Think out of the box - see the child underneath.





29 comments:

  1. Truly inspiring and spot on. This is so hard for the parents and families going through experiences that have no diagnosis. Great to make an awareness day.

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  2. A very interesting read. If 'they' don't know a diagnosis, how can a parent look for further help?! Must be such a difficult situation for those families that have to deal with that. Thank you

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  3. I suffer from an undiagnosed neurological illness myself and it is so hard, people don't know how to help an illness that is yet unnamed. I'm a grown up though and can bear the brunt of this. For a child it must be a million times worse. Just because it may not have a name doesn't mean it's not there.

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  4. Doctors haven't got the superpowers we all think they have. I have had an undiagnosed medical issue which caused me to collapse and end up in hospital and they never got the the bottom of it. Labels help in some respects but hinder in others x

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  5. Oh I so agree with you on this - in my eyes, they're still children up to the age of at least 18. Even further if they're not mature. Every child is an individual and they should be allowed to have fun and not responsibility pushed onto them. Loved the video, was fab x

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  6. I agree, children need to be children whatever other problems they have to face.

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  7. The welcome to holland essay and the video are both amazing and moving. It must be so difficult, but as you say the reward is your lovely children. I am not sure I completely agree re the age medical thing- I do think there are good reasons why older teens need privacy in their medical treatment at times, but there should be flexibility within that allowing parents full involvement where the child needs/consents.

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    1. Thank you for following the links :) Thing is - with older teens, I see your point, but it assumes they will be sensible and proactive about their medical care. if your child has a life threatening heart condition and they don't bother to collect their results, or involve you then it can be rather tricky....

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    2. I quite agree there are times it can be complex, but then again my eldest is 18 in 3 months time and I can't see she will grow more responsible overnight! I have to trust her, and trust my relationship with her. I do think Drs should be able to over-rule with under 18s in situations such as you describe though, and also have friends with children whose special needs mean they are certainly not ready to be responsible for their own medical care at 18, and this can cause complications too. Like all areas of life there are some very grey areas contained within it aren't there!

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  8. great post, and I agree to, children are children until they're 18 x

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  9. I never knew there was a day for it. I'm actually quite happy with all the support we've had so far despite our son being undiagnosed, but then I think the kind of pushy parent helps with that. I still remember how much was taken away when they decided that it wasn't autism though.

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  10. Spot on - like others have said, children are children until 18!x

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  11. A great post, i agree too xxxxx

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  12. It is surprising that so many conditions are undiagnosed, but then doctors are only human and just do not know everything yet!

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  13. Great post, i definitely agrees with everyone that children are children until they are 18 x

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  14. It must be hard not having answers to what is wrong with your child. If you have a diagnosis you have something to work to for treatment x

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  15. A great post that helps t shed light on people living with undiagnosed illnesses, and it is ridiculous that you aren't able to get your son's blood test results! especially as he is not legally an adult until 18. x

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  16. Great post and thanks for sharing this day

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  17. This is very interesting post. Do you think our doctors are failing us? Sometimes I wonder if this is the case... or is it us who suppose to look further and search for answers...

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    1. I think more are surviving wih complex problems medical science have yet to understand, but I think medical specialities are very guilty of tunnel vision and poor communication between themselves, sometines unaware someone has wider issues. The loss of real family GPs also plays a part. The NHS has become very much crisis management rather than the holistic care which would undoubtedly help with understanding and diagnosing complex conditions.

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  18. Thankyou for the fantastic post this is very inspiring x

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  19. great post, thank so much for sharing x

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  20. A nice read. I am nodding while reading this in agreement. I really thought that everything has a name already being it the 21st century. I am wrong. This post is an eye opener. Thanks for sharing your thoughts. They are thought provoking.

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  21. It isn't always even that the condition itself is unknown, sometimes its purely that the medical professional you are seeing doesn't know about it. My daughter suffered for years crying at night in pain. She was exhausted all the time purely because she hurt. Our GP knew nothing and refused to refer us on to someone who might, he just dismissed everything. It wasn't until I spoke to a friend of a friend that things fell into place. I then had to fight tooth and nail for referrals to the right people. She was finally diagnosed with Ehlers-Danlos Syndrome-Hypermobility Type at GOSH.

    I can't believe that you couldn't have access to your son's results! My other daughter who is 13, has an hereditary type of high cholesterol(from me) and has lots of blood tests, there have never been any issues with me accessing the results #pocolo

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    1. Yes there is a to of ignorance about EDS, that is the "umbrella condition" GOSH believe we have which is causing so many problems, but local have very fixed (incorrect) ideas about EDS so have written to everyone stating we don't have it and it shouldn't be in anyone's notes!!!

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    2. That's just ridiculous, I can't understand how they are even able to do that! Surely a speciality team outranks local?
      LM has diagnosis letters from different departments/specialities giving her different variations of 'hypermobility' and giving completely different advice as to how to treat her. The LEA's Inclusion team wouldn't do anything to help her in school until we had the HEDS dx so that's the one I'm sticking with!

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    3. Sadly local is often "first" even more so with GP commissioning :(

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  22. what a really super post my lovely and in fairness if you had not shared i would have no idea about this.

    thanks for linking up with #PoLoCo

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Many thanks for taking the time to comment, I really value your responses.

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