Saturday, June 15, 2013

Still no diagnosis

Every couple of years I meet with Smiley's neurologist, and every time the result is the same: she is still a medical mystery.  She's had the MRI scan, she's been through the genetic testing and the latest micro-array, and nothing, nothing, has showed up of any significance at all.

Yet she is so very different to other children.

And cerebral palsy was not mentioned at all at this meeting.  It clearly has become a badge of convenience: a label she needs to get services.  Undiagnosed was the term used by the neurologist, so perhaps it is time to embrace the unknown.

He noted that she has contractures but no spasticity, severe disabilities but no seizures.  A difficult premature birth, but no apparent brain damage.

Most of the time we just motor on, but sometimes I really wish that I could find a community of other Smiley children.  Wouldn't it be lovely to make contact, to discuss how we all cope, what might lie ahead, and even better, to see the joy of a room-full of children like my special girl?

And I remembered another reason this week too.

I had a little wobble about Smiley thanks to an article in the Irish papers about adult services being denied to a teen with severe disabilities.  Just like her.  And she is leaving school in two years time.  What will be there for her, and who do I ask?  Her social worker is out, her replacement is on two week's holidays, and no-one else will talk to me.  It's not urgent, so why should they?

I asked Google what happens to children with severe disabilities when they grow up.  I wanted to know who they live with, how they pass their days, what services are available, and what does my daughter deserve.  Google suggested my own blog, which shows just how little information there is out there.

I spent Friday afternoons ringing around organisations in the UK and Ireland, but with very little to show for it.  No, I don't think my daughter will be attending workshops, no she has no diagnosis, so no there are no specific organisations that I can ring for advice.

There was a report some years ago on Irish television about a couple who were caring for their adult son with severe disabilities, and some days they could barely find the energy to get him out of bed.  It stuck in my head.  I hope my future with my daughter will not be like that.

I just want her life to be like this all the time...

Saturday June 15th 2013

25 comments:

  1. In Israel there is one adult residential village that I know about. It has individual chalets where small groups of handicapped adults live together with carers in a family atmosphere. There are facilities and activities on site. I'll try and find it online for you.

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  2. I found it - http://www.aleh.org/eng/branch_negev.asp

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    1. That looks like the gold standard - and now you've left the link on here, I'll be able to find it :D Best of all it's for day services as well as residential x

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  3. Patrik has still some years to be out of the school and anyway I'm dealing with this kind of questions all the time. What will happen to him? Who will take care of him after I'm gone? His sister? Yes, for sure, but nevertheless I always remember a movie (Love Actually) where a sister takes care of her disabled brother who is in some kind of 'home' and yet she has a little of life of her own. I just don't wish such a life for her neither.
    I just wish to know if there is any country that has this things sorted out? I need good practice for this... but through the years I haven't found any... Is this our reality? To be scared what will become of our children all the time?

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    1. I try not to worry about the future all the time Petra or I'd go crazy. I have no solution to what will happen to Smiley after I'm gone - I just can't die - but I need a solution for what will happen to her when school finishes: for her sake and for mine, she needs a day time service so that she can meet people and enjoy new experiences and so that I can recharge my batteries - and work!

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  4. My heart goes out to you. In my previous existence I worked with Smiley adults in Australia, many of whom had no offical diagnosis, but there, they work on symptoms and muddle through. But there, like here, there is a huge black hole of service delivery.

    You can get good services, but you will need to fight, like you have thus far. It is heartbreaking and hard, but lean on us, People like me will be happy to help where we can, chart your course in uncertain waters.

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    1. I think that middling will certainly be going on :) And thank you for your offer of help x

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  5. These questions are getting closer for us, my oldest lad has just left school (but is going back to 6th form). He is lucky he has a diagnosis (although it's Aspergers which now doesn't exist) and even that is hard.

    At least when you find the answer google will help people come to you. Fingers crossed you find it soon.

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    1. Best of luck to your oldest lad, I have that to deal with too in a few years x

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  6. It must be so difficult to live with caring for your daughter but having no set diagnosis for her sake. Hoping she stays smiley and looking happy which shows that you give her a good quality life and she deserves it too . Stay strong :)

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    1. I think it is a lot easier for me because she has such a lovely temperament and is so rewarding to look after :)

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  7. She has got a stunning smile.

    I hope some answers become clear in the next few years as both she, and you, deserve some reassurance for the future. It always seems so incomprehensible that gold standard services are not provided for everyone, everywhere. You've obviously given Smiley, and your other children the best start and I do hope there are the resources or at least plans of how to carry this on into adulthood. I hope you find some peace with finding other parents via SWAN or other networks. xx

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    1. Thank you, and yes I'm hoping that things become clearer as time goes by x

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  8. This has to be the hardest part of being an undiagnosed parent. We do not have the community, network and known strategies available to others. My heart breaks a little for what you are going through and I am so grateful that I have at least 12 years before I have to undergo what you are currently in.

    On the other hand, I think it is super awesome that your blog was number 1 hit when you looked for resources :)

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    1. Confession time: it wasn't number one... lol

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  9. I can't offer any advice. I just wanted to say that Smiley really deserves that name, seeing those photos all in a row really shows off her total jubilation with life.

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  10. Oh, Blue Sky... I know EXACTLY what you are going through. There just isn't enough out there for our children when they become adults. Nick has just been accepted onto the waiting list of a home (the wait is over ten years!).. BUT, although the home is great, they don't have a clue about autism! Thinking of you. xx

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    1. Residential is very scary to think about alright. I'm still not looking that far ahead: I'm hoping she can continue to live at home with the right support and services - which should be a cheaper option too! xx

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  11. I can't offer advice, this is outside my area, but I reckon if you want to keep your beautiful girl smiling I think you will do just fine x x x x

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  12. I can't offer any advice for the future as my little medical mystery isn't yet one. But I am a member of Swan UK (which seems to also cover Ireland) which is a lovely virtual community of parents/carers to undiagnosed kids. There might be someone there who has better\any info.

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    1. Thank you so much for your comment, I have made contact with SWAN UK, and I'm starting to realise that I should make more of an effort to keep in touch with the community there :)

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  13. I don't know what to say that's any help or reassurance and can only hope that you get some answers in the future. Hopefully, as science progresses you will too. In the meantime I can only share your despair at the cuts to services. Seriously I could cry at what is happening in our countries; it seems so unfair that our most vulnerable are doing without support. Its a concern I personally share too because we really do not know whether our son will cope or not and what support/services he will need. For the time being we're focusing on looking for a specialist college and him acquiring some life skills but beyond that I don't dare try to imagine what his life will be like. Deb xx

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