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The Hub

It’s the word that got me first. What does ‘hub’ conjure up to you? I keep thinking of a hive of insects, which is obviously wrong. Or the hub cap covering a car wheel, often dirty and broken. Or the centre of a bicycle wheel with spokes heading out in all directions. Actually I think that last one is probably what is meant by a hub, at least in terms of the Hubs that are being set up for disabled adults under New Directions, to provide a base for accessing services in the community. However the name does not give me a warm fuzzy feeling, or suggest somewhere welcoming. At least not to me.

But I’m always willing to be converted, so I happily accepted an invitation to visit a Hub in Drogheda, about a 40 minute drive north of Dublin. Obviously I brought my disabled daughter B with me, so I could see what she thought, and whether it would suit her.

the-hub-drogheda

This Hub is a revamped building in the grounds of a Rugby Club in Drogheda, it was set up as a partnership between parent group Autism Support Louth&Meath, the Irish Health Service (HSE ) and non-profit Praxis, and parents sit on the steering group. It provides a service for 15 adults, all bar one have autism. and most have moderate intellectual disabilities. The adults spend 75 per cent of their time in the community and go out in groups or on their own – everyone has a personalised programme of activities. There are also group activities like yoga and music and the adults can choose to take part or not. There’s even an allotment with chickens!

the-art-room

Specific life skills are taught, like how to use a pedestrian crossing safely. Specialists come in to the centre to meet individual needs, such as occupational therapy. There are a number of different rooms for different activities, such as this lovely relaxation room.

relaxation-room

The Hub was wheelchair accessible but there were no changing place toilets for those who need a hoist for toileting or changing. Nor was there a medical team on site.

The atmosphere was quiet, friendly and purposeful, perhaps a bit too quiet for my daughter, who was a bit withdrawn during the visit. The adults at the centre all seemed content and occupied, which was great to see.

Perhaps there will be different kinds of hubs, maybe some will be more lively, and with a wider range of facilities, who knows? My daughter follows a very similar programme, and spends a lot of time in the community, but it’s not ‘her’ community, it’s a couple of miles away, and under New Directions, she’s supposed to be closer to home. Also her current service is on a campus – which means it has lots of specialist facilities that are not available in the community – but campuses “do not comply with the criteria.” This makes me sad.

I can see how hubs could offer a much better lifestyle for those with autism and mild to moderate disabilities, who can easily enjoy and take part in community activities.

But I’m not convinced yet that hubs could work better for adults with multiple disabilities and complex medical needs. My daughter seemed to agree, she was interested, but not excited.

looking-around-one-of-activity-rooms

 

Do you mind?

Do you mind that this is an old style blog? An on-line diary that mixes angry rants with reasons to be cheerful.

Do you mind that it’s mostly about disability and carers? Because that’s my life now.

Do you mind that I don’t have time for polished writing any more? Because blogging now feels like a self indulgence since I can no longer justify it as honing my writing skills or learning about social media and coding.

They say that those who matter, don’t mind. I hope that’s true, because no-one has to read any of this stuff if they don’t want to.

But if you do want to read on, here are this week’s reasons to be cheerful

Finally getting a new coat for B. Not as easy as it sounds. Black doesn’t suit her, puffy jackets don’t work, other coats are too big, too stiff, to hard to get her arms into, or the sleeves won’t roll up so her hands are free. This one is perfect, and she seems to like it too!

b-pink-coat-new-look

Getting over my current fear of being too boring and miserable and returning to my running group. AND completing 5K in 30 minutes – a great start to my aim of running 10K in under 60 minutes in the Great Ireland Run in April.

popes-cross-phoenix-park-jan-2017

Totally enjoying a nostalgic rewatch of my favourite ever TV series Blake’s 7 on YouTube (but don’t tell Netflix!).

Depression at President Trump’s inauguration being eclipsed by joy at the resistance movement and the wonderful women’s march.

A little four hour holiday on Monday, with a trip to the gym, coffee with Jazzyville and a tiny bit of shopping too. And I bought something for myself that I didn’t absolutely need. It felt great.

Hope you have a good week, and head over to Mummy from the Heart for more reasons to be cheerful.
R2BC at Mummy from the Heart

Lots and lots of lovely appointments

There may be a bit of sarcasm in that title…

The news:
Nothing sinister was found in my scope, but no real explanation for my symptoms either, so I’m stuck with a very restrictive diet for the moment.

My disabled daughter B finally got her neurology appointment, it means she has a lead hospital consultant now, who is really interested in her, which is good. Not so good is the news that she is having small brief seizures – she actually had one during the consultation. So she’s now on a low dose of medication that will hopefully ensure they don’t develop further.

On Wednesday B got her therapeutic Botox injections that help reduce the stiffness in her legs, which could get progressive without her comprehensive medical and exercise management programme. It was less than a week after an Irish celebrity received cosmetic Botox live on Ireland’s premier TV chat show, and I felt the feature was such a missed opportunity to cover its other uses – and my daughter would probably have loved the attention of live TV, if she could’ve had her treatment at the same time!

Today is the wheelchair assessment and another protest in support of disability rights outside Irish Government Buildings.

And in really good news, I have the following reasons to be cheerful:

A new goal, doing a parkrun with B, inspired by BuggyWalks Ireland.

Possibly joining the no beer for a year campaign, inspired by my blogging friend Kate Gunn in the Irish Independent.

Eldest bought B an unbirthday present of a mermaid blanket for floor time especially when it’s cold. Pink of course, and she looks soooo cute in it…

B has started wanting to share my dinner even when it’s not red (ketchup) or brown (chocolate) culminating in her eating purple coleslaw on Monday!

A hospital visit and finding a free and available parking space easily in the adjacent cul de sac. I think hospital car parking charges are an insult to sick people and I hate paying them so that was a win.

 

And finally, look who was thrilled to be back at the Rainbow Junior Arch Club this week.

b-disability-smiley-rainbow-junior-arch-club
Have a great week, and why not check out more cheerful posts over at Mummy from the Heart.

A crazy week

My head is in a spin from everything that has happened over the past week, good and bad, and next week promises to be even busier, with 7 appointment for the children and myself on top of everything else. Last week saw the launch of Profound Ireland, in which I played a small part, as this new group will be campaigning for better supports and services for children and adults like my disabled daughter B, as well their carers. There’s also been a lot going on with he who shall not be written about on this blog. And finally the response to my post on respite continues, with phone calls from people who’ve been avoiding me for months (looks like you really do have to go public to get results, which is very unfair), but also the unexpected kindness, support and more, from the really lovely bloggers in the Irish Parenting Bloggers Group. I cannot find the words to thank them enough for what they did for me this week, including organising the delivery of this beautiful bouquet of flowers.

flowers, Irish Parenting Bloggers, .png

And there were other reasons to be cheerful too…

Meeting a twitter friend by chance in the street. When I say meet, he called my name, and I looked blankly back, never having seen a picture of him before! And it was really special to meet someone I talk to on-line in real life, it doesn’t happen that often.

Going to collect B from her day programme for an eye appointment and hearing her laughter at the end of a very long corridor before seeing her ..

Getting a buggy organiser. I love the internet, and without googling for ideas for a replacement changing bag and even a cup holder, I would not have discovered the joys of a buggy organiser: I believe you can never have too much storage when you’re out and about with a disabled person, another reason why I hate wheelchairs.

And talking of wheelchairs, the assessment for a replacement for Bs old model will happen this week after an 18 month wait. I really hope that the team will listen to the practical things I need to support my daughter’s lifestyle, rather than just focusing on health and safety.

Have a great week and head over to Mummy from the Heart for more reasons to be cheerful.

 

Social media does get results

R2BC at Mummy from the Heart

When I scribbled a few words over breakfast on Wednesday I had no idea or expectation that thousands of people would read and share them, or that by the end of the week I would be in direct contact with politicians and the director general of the Irish health service. Hopefully it will change things for all carers who need respite so they can get their own health needs attended to, so they can continue to care of course!

So my first reason to be cheerful for this week is gratitude to everyone who helped, I was blown away by the support.

No more panda eyes

If you know me at all, you will know that I am rarely seen in public – or private – without lashings of black eye liner. For the past 40 years I have been searching for the perfect pencil: it has to be soft, stay in place, and suitable for sensitive eyes. And finally I may have found it. This baby survived swimming, the death of Carrie Fisher and forgetting to take my make up off one night.

Make Up Forever, eye pencil, black, .png

Let me eat cake

My current medical issue means I’m on a ridiculously strict diet that bans almost everything I like. Except cake. Cake is okay. Though preferably low fat and chocolate free. Hello meringues!

Making mayonnaise

This used to be a daily guilty pleasure, but Hellmanns had to go as part of the diet, so I tried making my own mayonnaise. I didn’t much like the result, and it didn’t really agree with me either, but it worked, and it didn’t curdle. Go me.

Journaling and a Mindfulness course

I’m giving both of these a go to see if they help reduce my stress levels. Just have to make sure that adding more into my day doesn’t increase them…

Friends

After a very quiet Christmas, it was lovely to get a call to go for a long walk earlier this week – with B of course, who loved it.

B, Smiley, severe disability, .png

Have a great week and head over to Mummy from the Heart for more reasons to be cheerful.

 

No respite, so what happens when carers get sick?

From a letter send to the Director General of the Irish Health Service (HSE) and others

Dear Tony,

I know you have a lot of issues to deal with in the HSE and the concerns of a few hundred thousand family carers are not up there with the trolley count and the cancer survival rates, but please can I draw your attention to the health costs of lack of respite.

I’m off for a scope again in a couple of weeks, thanks to one of my medical conditions deteriorating, exacerbated by stress.

And you know what caused most of the stress?

Having to fight every day to get even basic services and support from the Department of Health and Education for two of my children.

I will be having the scope with no sedation as I have NO RESPITE and will have to look after my children when they get home from adult services and school.

It will be horrible and a challenge, but I’ve done it before.

But I may also need an operation. WITH A SIX WEEK RECOVERY TIME. And that’s if they don’t find anything sinister.

What then?

How is that going to work?

My severely disabled daughter needs two fully trained staff to look after her for health and safety reasons (though it’s okay for me to manage alone) and then there’s everything everything else I do too. Almost entirely on my own as I’m a lone parent.

If the dates suit, I suppose I would have to pay for some 24 hour home cover, if all I need is a short hospital stay. But what about after that? Both my recovery and the health and safety of my children will be at risk. Yet no one seems to care.

Do you think you can just send my daughter to a strange respite house where she knows no one, and no one knows her needs? When she hasn’t stayed away from home for years? When her last two experiences of respite left her traumatised?

If it all goes horribly wrong, will everyone just wring their hands and describe it as a terrible tragedy and then go about their daily lives as before?

I have been looking at options for respite for several years in anticipation of something like this happening, but without success so far. My attempts to make contact with anyone who might be able to put a service in place have been mostly met with indifference or just simply ignored.

Luckily the lack of respite has not become critical until now. And it’s not been my number one priority. Battling to get services for my teen and my severely disabled 20 year old has taken up most of my time and energy.

And there are similar stories all over the country as most families now take on most of the caring responsibilities for their loved ones with special needs. So these situations are going to arise more and more often. I have Facebook friends right now who say they can’t have operations because they have no respite.

There is nothing in place for my children. No plan. All the work I have done to give them a good life could be undone by lack of planning by the Departments of Health and Education and their lack of interest and concern for the future of my children.

Hopefully I may not need an operation yet, but respite and long term planning needs to be put in place NOW, so that my children are happy and familiar with it, for when an emergency does happen. Which it surely will.

All I’m asking for is someone to contact me and help me to make this happen. Is that really too much to ask?

Yours sincerely

A very tired and worried special needs mum.