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Undiagnosed But Not Invisible

Undiagnosed But Not Invisible

In that year so much has changed for us and Sam, although he is still officially undiagnosed in that we don’t know *why* this all happened to him, we do have a far clearer view of what changes exist in his brain and how these affect him day to day.

Probably the biggest change, however, is that attitudes seem to be starting to change.

There are still those who think/say that if a child doesn’t have a diagnosis then there’s nothing wrong/it’s due to parenting.

There are people who still seem to think that if you just changed YOUR behaviour then autism would disappear, or that children with ADHD just need to be told firmly that their behaviour is unacceptable and that will magically cure the problem.

For us, Sam’s issues are very visible (he’s in a wheelchair and is tube fed for crying out loud!) so we’ve been spared much of the rubbish our friends are forced to face daily… however, the word is getting out there far more.

Some families are finding that their Consultants actually know about Swan UK, and are able to signpost families to the support offered.

There truly is no more devastating or isolating moment than when a Dr considered a world expert tells you that they have no idea what is wrong with your child, so they can give you no idea of what to expect, or what treatments may be effective… because at that moment they’ve never seen a child quite like yours before.

It’s a hard thing to hear and leaves you feeling completely isolated.

Medical science has moved on at a spectacular pace – we have sequenced the human genome and can identify tiny changes in the DNA; what we can’t always say however, is if those changes are responsible for a child’s disabilities/issues.

We can test for all manner of substances that are present in either too high or too low a concentration, and we can identify children with problems much earlier in many cases.

However, we don’t always know why these changes occur or what they might mean.

For many of our children, the best we can ask for is symptom management.

For some finding out the answers has proven to be a bit like opening Pandora’s Box.

I am eternally grateful to Facebook for allowing us to get in touch with other families in similar situations… those parents are a wealth of knowledge and support.

And it’s not all bad... take a look at these images of my little hero – do they look sad to you?!

We have to remember to see the child first, and the disabilities second, because after all they are just children. x

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Carolyn Voisey

Meet Our Blogger

Mum to one incredible little dude, I work full time in higher education and have my own small business as a jewellery designer/creator. I love nothing more than having time with my family, being outside and with my animals (chickens, cats, dog..!).

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