Into the unknown: life with an #undiagnosed child

Of course she’s not a child any longer. My disabled daughter B will celebrate her 21st birthday this year. At least, I expect she will. Because that’s the essence of having an undiagnosed child or adult in your care: nothing is certain.

Okay so nothing is certain in life, but it’s even less certain when your child is undiagnosed.

It all began at her first neurology visit when she was just a few months old.

“She’s very unusual,” we were told. And so it began. The inability to find a label that would fit.

In case you don’t know the back story of my disabled 20 year old, she was born unexpectedly at 26 weeks and spent 6 months in hospital, with a whole range of difficulties, many of them very rare. Yet her medical issues had largely disappeared by the time she was two, helped by an emergency tonsillectomy. But other issues remained: her physical and intellectual development almost stopped at the same time. And B was given a working diagnosis of cerebral palsy and an unknown disorder, mainly to get services, but she does not resemble most people with cerebral palsy at all.

And with no proper diagnosis there’s no road map.

There’s no list of milestones she can be expected to achieve. No guidance on medical issues she may face. No life expectancy. No support groups specific to her difficulties, no information. No other families to talk to about what works and what doesn’t. No experiences that other families can share. Even with the billions of pages on the world wide web, sometimes barely a handful cover some of her issues.

Her differences are many and rare so that everything has to be adapted: her clothes have to altered, equipment custom made – if it is available at all. She knows how to walk, and adored her walker as a child, yet no adult walker can be found that meets her needs. She uses a special toiletting sling that is falling apart, but all the new replacements are made of slippery fabric, and her tone is so low that she just folds up and slides through them!

Her differences are also wonderful and inspirational: she is unusually sociable and vocal for a non-verbal young woman with profound disabilities. She loves life and takes pleasure in the smallest of joys and her delight is completely infectious . Her smile is so radiant that you can feel it even when you are looking the other way, and then of course you have to turn around and smile back.

Not knowing what the future holds is not all bad either. She does not have a life limiting disease, so I do not have to worry that each day could be her last. I do not have to fight to get her medical care and she is rarely sick or in hospital. It does mean that every day has to count. As her mum I try very hard to make sure she has the best life possible. However long it may be. After all, when you have a daughter as wonderful as mine, why wouldn’t you?

B, Smiley,

There could be several thousand undiagnosed children and adults in Ireland, with a huge variety and severity of disability, and many isolated families. But there is help and support out there, and a very warm welcome for families like mine from SWAN, the UK organisation for Syndromes Without A Name, which celebrates Undiagnosed Children’s Day, today, April 28th 2017.

Contact details for SWAN UK

Email: info@undiagnosed.org.uk
Facebook: @SWANchildrenUK
Twitter: @SWAN_UK

SWAN

 

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Like the Wicklow Hills

So the Easter holidays were like the Wicklow Hills – lots of ups and downs, with storms and sunshine turn by turn. Beginning on the highest peak, with the Great Ireland Run, dipping down to a fairly grim valley during the first week, followed by a wonderful weekend of outings with my disabled daughter B, and then a few days that went surprisingly well.

And you know what happens when busy people finally get to relax? The germs all queue up to take advantage, so yes, I’ve been on sick list since last Friday. And feeling a bit numb and uninterested in anything very much. Even taking photos. Even taking blossom photos before the high winds scattered the petals into pink drifts along the pavements. So you’ll have to make do with this old one instead.

cherry blossom

So I’ve a few half hearted reasons to be cheerful this week. It’s not been bad, just a bit ordinary, and perhaps I should be grateful for that too!

My fitness levels paid off over the weekend – despite the stupid virus I was able to keep going and even push my daughter into town on Sunday – something I found hard to do at all two years ago.

I’m reading a book again. In fact I’m rereading a book, and it’s the real thing, solid with pages just starting to yellow at the edges, the spine with the smile lines of a book that’s been well loved.

And it got me wondering why I’m still struggling to find new authors right now. Where’s the next Nick Hornsby, John Wyndham, Nevil Shute, Graham Greene, J.R.R. Tolkien, Anne McCaffrey? All suggestions welcome.

I’ve been playing game of thrones with the dandelion hordes – either decapitating them with a well aimed kick or pouring boiling water on them. Oddly satisfying and at least I’m not using chemical warfare.

A morning spent at a carers’ forum, billed as an opportunity for carers to express their grievances and suggest improvements directly to Government. I’m not expecting anything to change as a result, but it was a great opportunity to catch up with Facebook friends old and new.

With a bank holiday weekend and lots of appointments next week, things are about to get more interesting…

Head over to Lakes Single Mum for more reasons to be cheerful.

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All the fun of the farm

Farms don’t usually feature in the fun activities I organise to entertain my disabled daughter B. After all, they don’t generally feature live music, busy shopping streets or even chocolate cake!

But this particular farm trip went unexpectedly well. From our home to Newgrange Farm in Co Meath was a good 40 minute car drive, plenty of time for dancing down the back to her favourite tunes. And it all got better from there. Organised by the Rainbow Junior Arch Club, the trip was held on Easter Saturday, which meant the place was buzzing, but not too busy.

B petted the baby animals, laughed at the other children and even went exploring in the hay maze.


Sunday featured a big roast dinner with all three of my children at the table at the same time (hadn’t happened since Christmas) followed by a yummy cheesecake made by my eldest – my belt has been loosened..

And Monday was even better: B and I headed out to sample the inaugural Cruinniú na Cásca Festival that was providing free events all over the country. The most publicised was in St Stephen’s Green in central Dublin, but as that seemed aimed at families of small children, we took a chance and headed for nearby Smithfield instead, which promised interactive science activities, wall painting, slam poetry and artisan food and drink.

Best of all, there was lots of live music. Even so I wasn’t expecting to see bands I actually love including The Heathers and We Cut Corners, nor was there any advance mention of the elevated disabled viewing area, meaning we had a fantastic view of the stage and B loved every second as you can see if you click on this video snippet.

It was a wonderful way to end the Easter weekend: my reason to be cheerful for this week.

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Why I’m angry about the Prime Time respite special

After watching the Prime Time programme on respite this week you would think that Official Ireland has a grudge against disabled people and their carers. We’re all an expensive annoying nuisance, and they wish we would just go away. So when we get angry and have to be given a bit of airtime, Official Ireland sets things up so that each interest group is guaranteed to piss off one of the others, and the smooth talking promises of the politicians are what remains in people’s memories.

Those poor carers, thank god something will be done to help them now. Now let’s have a cup of tea and watch something more entertaining.

That was the reaction that oozed from social media last night from those not actually involved.

While disabled people and carers were very angry on social media for different reasons…

Divide and conquer, yep that certainly seems to be Government policy in this area, as in so many others.

I put most of the blame for the programme squarely at the door of RTE, Ireland’s national broadcaster. Stuffed full of intelligent, highly paid people, there was no excuse for their presentation of disability issues.

It began at the beginning, when the presenter referred to the ‘burden’ that intellectually disabled adults placed on their carers. First black mark. Cue blood pressure spikes in disabled viewers all over the country.

You see any time that carers try to get their needs recognised, the publicity and headlines are always twisted around to suggest that these particular carers are being selfish and looking for sympathy because their lives are made so hard by the ‘burden’ of caring for their loved ones.

NOT TRUE

Our lives are difficult because the State will not provide adequate supports and services to disabled people and to their carers.

To make things worse, the show also featured parents discussing the difficulties of caring for their disabled adult children. In front of them. I guess most parents have to do this at times in meetings. But surely not on camera, on a programme where every detail would have been planned? Perhaps it was thought the disabled adults would not comprehend the conversation, but it made me uncomfortable, and I cannot understand why no one at RTE could see that this was very inappropriate.

According to Prime Time there are 28,000 people recorded as having an intellectual disability, and 69% of them live at home with their parents. That means 16,800 families where respite is needed. Yet respite beds are being closed all over the country, affecting the ability of carers to continue helping their loved ones to enjoy the lives they deserve. Respite is also needed in emergency situations, it’s a break for the disabled adults, a chance to mix with other people, and get used to being cared for by others, and perhaps a transition to living independently of parents before they die, instead of a traumatic transition after their death. These issues were covered in a much more balanced way on a follow up programme on Radio Kerry.

After the film there was a studio discussion with family carer Damien Douglas and Minister for Disability, Finian McGrath, TD. Personally I believe the Minister – who has a daughter with Down Syndrome – has made progress since he took office, and it was always going to be an impossible job to please everyone as there is a very long shopping list of disability and carer issues that need to be addressed. Unfortunately he said some unhelpful things on the Prime Time show:

On the postcode lottery for respite: “There’s better respite in parts of Dublin.” Perhaps, but many disabled children and adults in Dublin have had no respite for years, and that statement increases rural resentment at the idea that their needs are ignored in favour of families who live in the capital.

“I’ve restored the respite care grant.”  This provides a welcome income boost for many families but cannot be used to purchase respite if there is none available. Even getting a sitter can be completely impossible, especially if the disabled adult has high support needs.

“We need to build the respite services around the person with the disability.” That’s all very politically correct, but the needs and situation of carers and their families also have to be taken into consideration.

He seemed to accept the need for 2000 respite beds over the next 4-5 years : “I’m determined to fight for that. We’re now moving on to investment in respite services.”

“Already this year I’ve managed to get 182,000 respite nights for adults with intellectual and physical disabilities.” I’d love to know who got these!!!

“In the next few months we’re putting in €16.2 million to develop home support services within the home for those families who don’t want to send their children or young adults to services outside the home. I’m also talking to people with disabilities and they tell me they prefer to have the respite services in their own home paid for by the HSE.”  Cue an eruption on social media.

Take note: The anger about this issue isn’t going to go away any time soon…

 

 

The Great Race #greatirelandrun

“Aren’t you being a bit ambitious?”

That’s what I was told when I announced I planned to run a 10k in under an hour in 2017.

In all fairness, what the speaker could see in front of him was a fat middle aged woman swaddled to the nines in ancient running gear. Not an inspiring sight!

But what he didn’t know was that I have a track record of proving people wrong, and those words spurred me on over the past year as I slowly prepared to tackle the Great Ireland Run.

#GreatIrelandRun, 2017, me

You see I’ve been waiting to do this for more than ten years.  I tried in 2011, but didn’t make it across the finish line in under the hour. And this time it felt even more important. Age is not on my side, and 2017 was the perfect year for the attempt: my eldest is still living at home, my disabled daughter is loving her day programme, but it’s only guaranteed until the end of August, while my teenage son has no exams this year.

As well as that, the training went well: I had a partner in crime, my friend Lisa, and we pulled and pushed each other on many runs, often as part of Pat’s training group in the Phoenix Park – held in the mornings, so I can actually get there.

Lisa, Candi, Great Ireland Run 2017, the start,
Lisa and I on the start line

My eldest daughter looked after her brother and sister for me as I squeezed in random training runs whenever I could. And I also benefited from going to gym. It was not a heavy training schedule – no more than 3 1/2 hours a week in total – but it was hard, and I was stiff and sore for most of the past three months. But now I am slimmer and fitter than I have been in a long time, which will help me continue in my caring role too.

Race day was perfect, cool and calm and everything went to plan. Just as well, as the Great Ireland Run is not an easy course: You’d lose count of the number of hills, and I certainly slowed down to a crawl on the last one: so thankful to the lovely woman who encouraged me to keep going, and told me that I was still on track to make my target time. So I sped up as soon as the course levelled off over the last two kilometres, desperate for a sight of the finish line.

And then I saw it.

And the time read 57 minutes. I couldn’t believe it. First came the smiles, and then I was overcome when I finally crossed the line. I staggered to a halt and burst into tears. So of course the medical team rushed over with concern and a sick bucket! And I gabbled on about how important the day was for me. I expect they thought I was completely mad.

For the past 30 years, I’ve rated running the London Marathon as one of the biggest achievements of my life. It’s now been beaten.

Finally I have to mention the glorious Liz McColgan, whose winning 10K run at the Tokyo World Championships in 1991 is always at the back of my mind any time I felt like quitting. Thank Liz!

Adding this post to this week’s Reasons to be Cheerful linky because I’m still taking it easy after all that hard work on Sunday 😉

A bang on the head brought me to my senses

I don’t know if you know much about disability equipment? It’s designed for disabled people, but not particularly for the carers who use (and clean) it. Especially not carers who are stressed and tired.

The accident happened on Monday night while I was hoisting my disabled daughter B. I leaned over too far and too quickly and hit my head on a metal bolt. And for the first time in many years, I actually acquired an egg on my forehead, luckily hideable with my fringe!

It made me think. It made me realise how badly I needed a break – before something else happened. And the universe answered.

On Tuesday I got one: an empty house during school hours and no commitments. So after ticking off a few chores, I went for a run and even spent a quiet half hour reading a book – in a hidden corner obviously, just in case anyone came home and caught me! Mammy guilt is never far away…. Thursday was very similar, which means I’m recharged and ready for whatever the Easter holidays throw at me. Well hopefully! The egg is not very sore now, anyway.

Since this is also supposed to be a reasons to be cheerful post, here are some more:

Reasons to be cheerful 6.4.17

A lovely and unexpected Mother’s Day gift from B.

An evening watching Star Wars with the teen, followed by 7 hours sleep with only 2 interruptions. Bliss.

Going out at night without a babysitter. Because for the first time ever I brought B with me. It worked because I have lovely friends, we went out early evening, and I made sure that food and dessert were included. Something else I hope to do more of in the future.

I also jogged down O’Connell Street without feeling like a freak as the quickest way of getting to yet another disability protest. For non-Irish people, O’Connell Street is one of the busiest and most important streets in central Dublin.

I made the most delicious healthy Brownies ever, and ALL my children enjoyed them.

I hope you had a good week too, and head over to Lakes Single Mum for more reasons to be cheerful.

 

 

5 reasons I’m not marching today #EnoughisEnough

Enough is enough posterI planned to march today, I made this poster and I shared it on Facebook. I asked who else was marching. The response was not encouraging. It was the same people yet again. But I still planned to go ahead, until the venue was cancelled. The one that made sense to me, the one where actual decisions are made about health, where I’d be standing shoulder to shoulder with people I know. And here’s another five reasons too:

One

I was talking about it over the weekend and someone commented that marching is something socialists do. When did that become a thing? In the 1980s my first march as a middle class student was with lots of other middle class students protesting over rent increases in student accommodation. Then I marched in support of the right of the 14 year old at the centre of the X case to go to the UK for an abortion in 1992. Then I marched in anger over the Government’s failure to improve the health service during the Celtic Tiger years, which caused so many needless deaths, including that of Susie Long. Remember her? I do. More marches followed, but yes I also noticed they were inevitably hijacked by the left wing parties, regardless of the views of the marchers.

Two

I would be marching at a location that has nothing to do with my children and the services and assurances they need.

Three

I am concerned that no-one will care that I’m there, because I’m always there. At every march and every demonstration. It’s new faces that are needed, I just look like a serial protester now. And since #EnoughisEnough is mainly about services for young children with autism, my presence is not really relevant.

Four

My face has never been a good fit anyway. Not poor enough to claim carers’ allowance any more, but not enough time or expertise to use my savings to find services privately. And anyway having to pay for everything when you can’t work drives carers into a poverty trap with no escape route due to their caring duties, as happened to Transitioning Angels.

Five

Will the march achieve anything? Except a chance for camaraderie and to let off steam (which is useful). Yesterday’s Sunday Mail reports that internal Government papers show that the health services cannot deliver on rights for disabled people. Due to funding choices, and disability not being a priority for most politicians, in my opinion.

I hope I’m wrong and I wish the marchers every success. But I’m going to sit this one out.