Five ways to have a great summer while caring for an adult with severe disabilities

Remember those lovely but tiring days looking after your young baby? You lived for the smiles, the progress, the joyous moments, and enjoyed every precious second, while looking forward to the day when your child would not need you quite so much! Now imagine your baby weighs eight stone (or more) and will always need you to do almost everything for her. Caring for my daughter B is like that in many ways, even though she is also grown up. Catering to her needs is a full time job, but like most adults, it is not my only job, and so all the cutbacks to summer services for special needs have meant that by the beginning of August I am usually exhausted and overwhelmed. Not so this summer.

How did I manage it?

1. I made a plan

Normally I live from day to day and rarely know what’s happening next week. But for this summer I made an extra effort. I had a calendar of events I wanted to go to with my daughter, and a list of friends I to meet together. Plus the Rainbow Junior Arch Club summer camp.

2. Being prepared

Going out with a severely disabled young adult is not so different to leaving the house with a toddler. There are last minute toilet requests, bags to be packed with enough stuff for a short holiday, as well as a quick check on the venue to see if it will work. Since there are only three changing places in Ireland, toiletting is difficult or impossible while we’re out, and we often have to cut short outings to get home. I usually need to bring a ‘packed lunch’ of mashed potato as few venues have the kind of hot food that my daughter can eat, apart from baby bowls, and I feel embarrassed asking for one for an adult!  Obviously I have to check for basic wheelchair accessibility too. Eventually I hope to get a specially converted camper van that means I can bring all the equipment B needs with me. Something like this. Because even if there is a changing place in every shopping centre, there lots of other places that will not have them, including private homes.

3. Enjoying things together

One of my friends remarked on this, and it’s something I’ve tried to achieve with all three of my children. Sometimes I’ve had to learn to like (or tolerate!) activities that my children enjoy, and sometimes I’ve been able to convert them to my interests. Luckily B and I are both sociable, and enjoy music and busy places with lots going on. We went swimming and bowling for her, but we both enjoyed so many other things, including jogging races pushing her buggy, birthday parties, shopping, and music festivals.

4. Meeting your tribe

All my friends are great around my daughter, but sometimes it’s easier to relax around other special needs parents and their children. Because we all get it, no-one is ever bothered by what a child does or what they need. It’s just the way it is.

5. A wrap around service

This was the biggie this summer. This is what made all the difference. B’s fabulous two year Adult Transition Programme ran through most of July and August. It meant that I was able to give time and attention to my other children while they off. It meant that I didn’t have to give up any hope of keeping fit during the summer months. And it meant that when B was with me, I had the time, energy and enthusiasm to make sure she enjoyed every second.

You know what that means?

It means that I will not be accepting the HSE’s New Progressing Disability Model that shoves everyone with disabilities into the community. For my sanity and for her well-being, I am going to fight for a decent day programme for her .

That way we should both get the ‘good life’ we deserve.

Summer 2016

 

Pro choice and pro life?

If you ask me about abortion today I would tell you that I hate it, I hate what it involves, and I bet many other pro choice supporters feel the same way.

But I didn’t always think like that.

As a teenager growing up in the 1970s I saw friends getting pregnant. Some had abortions. Others married the father. Just a few became lone parents. And seeing the lives of mothers at that time, I knew which option I would choose.

My first pregnancy did not alter my opinion in any way, I even took part in the X case protest march over the Supreme Court’s refusal to allow a raped 14 year old to travel abroad for an abortion.

But once I held my firstborn in my arms, my strong views began to soften. It was as though I had not made the connection between foetus and baby until that point.

Then my second daughter was born at 26 weeks in 1996, and against all the odds she survived and continues to thrive even though she has severe disabilities. But always in the back of my mind is the thought that until 1990, babies like her could be legally aborted in the UK, and I do find that upsetting, I can’t help it.

I have other doubts too.

Remembering the teenager I once was, I certainly think that counselling should be a requirement before abortion is granted. If I had had an abortion when I was younger, I’m fairly certain I would regret it now.

I definitely don’t want any woman to feel ashamed of having an abortion, but nor do I want anyone to feel pressured to do so – by their partner, their employer, their parents. All these things happen here, and in other countries. I can think of actual examples, but I can’t tell you about them.

It should be a serious decision, and it should also be a personal decision, made with knowledge and understanding, but not as a result of outside forces or pressure.

There are many reasons for having abortions, and many of the issues discussed in the media like fatal foetal abnormality and saving the life of the mother are no brainers for me. I find it disgusting that anyone could deny an abortion to a woman in these and similar situations.

There are also downsides to wider availability of abortion.

If it became available on demand, what could that do to supports for families? Would all the ‘hard-working’ tax payers look for further cuts to child benefit, supports for those with disabilities etc etc on the grounds that the mother ‘should have had an abortion’?

Those worries equally apply to the organisations that want no abortion in Ireland, whether you call them pro life or anti choice. Because how many so-called pro lifers…

Support cuts to child benefit?

Support the legislation that removed lone parent allowance once a child reaches age 7?

Believe that parents should be jailed if their kids miss too much school?

Believe in corporal punishment?

Say you shouldn’t have kids unless you can afford them, but also don’t believe in sex education or the living wage?

Vote in governments that promise tax cuts, not parties that want to provide services.

Subtract those pro lifers from the total and would there be anybody left?

I’ve said it before and I’ll say it again: I believe that most so called pro lifers are only pro life until birth.

After that mothers and babies are on their own.

Only this morning, there was a comment on an Irish radio show about work shy single mothers living off the state: and as long as there are people who think that way, there will be lots of women looking for abortions.

Abortion is not the ideal solution to many crisis pregnancies, but sometimes it may feel like the easiest one, at least until attitudes change and support for families increases.

So society bears a lot of responsibility for the demand for abortion, and while I would love to see fewer abortions, the way to achieve that is not by banning them. Better sex education and cheap or free contraceptives are also only part of the answer. Society needs to believe in the importance of babies, of children, of families, and especially of parents and their role in raising the next generation. And it must provide whatever supports are needed. If prospective mothers know that they or their partners can get secure well paid jobs, free or subsidised childcare and stable accommodation, wouldn’t that go a long way towards reducing the need for abortion? But how many people are really willing to pay more to ensure that being pro life, means being in favour of a good life for all, and a chance for every child to fulfil their potential.

There are two more very good reasons why I am pro choice and I love both of them very much: my daughters. And there is another issue. My middle child B is severely physically and intellectually disabled. What if the unthinkable happened and someone took advantage of her vulnerability? She would not even understand what is happening, and while I support the wish of people with learning disabilities to choose to be parents, I don’t believe that my daughter would be capable of making that choice. Should she be made to go through a pregnancy and birth, when her mind and body might not be able to cope?

Nor do I want either of my girls to ever have to make that lonely trek across the Irish Sea. If they need an abortion, I want them to be able to have it here, on the island of Ireland. Because I am pro choice and pro life, I am pro their lives first and foremost, because I’m their mum.

Further reading:

https://minisandmum.com/2016/08/24/the-down-syndrome-paradox/

http://www.badmammy.com/dear-rte-sydney-rose/

Reasons to be cheerful 19.8.16

It’s been a very sociable week with visitors at the weekend, and all of us getting to spend time with friends during the past few days. The week also included these reasons to be cheerful:

Cycling in the Phoenix Park with one of my teenagers.

Trying out new dinner recipes, and then watching my children put their empty plates in the dishwasher!

The living window is no longer painted shut, now I’m ready for the next heatwave ha ha.

Spotting an ad for two part time professional jobs. So they are still out there, and eventually I hope to be in a position to apply for one.

As you may know my daughter B is on a two year transition programme for young adults with disabilities. One of her friends graduates today and I heard this morning that he has been offered a place on another similar programme, which means there is hope for B that she won’t just be dumped in the community when she finishes next year.

And finally, in case you missed it (you didn’t, did you?), B and I enjoyed a wonderful day trip to the country on Tuesday.

Linking up with Reasons to be Cheerful at Lakes Single Mum.

 

An Adventure in the Country

“Let’s just see what’s around the next corner,” are words my children remember me saying all too often when they were getting tired and wanting to go home. You see I used to love an adventure, but special needs has worn me down so that I usually play it safe. So many unsuitable places, so much planning involved.

Just occasionally I get a push to do something new or make a promise that I’m not prepared to break. Even when I wake up on the morning of the big adventure and wish I could just stay at home instead.

Yesterday’s adventure was part of the summer camp organised by the Rainbow Junior Arch Club, and I was bringing some children with me, so I had to go. The destination was Greenan Farm and Maze in County Wicklow, over an hour’s drive away and even from the website I could tell that the facilities for people with disabilities would be limited, so I had to bring a huge amount of stuff, from magic cream to muffins. Just in case. We were heading to the country after all!

the nature walk

It was a lovely day out and a wonderful place to visit, and we were blessed with the best of weather: warm sunshine and a cool breeze, but I couldn’t help looking at the venue through a disability lens. And it was a long way from perfect.

It began in the car park, where there was no disabled parking, just gravel, which is difficult for buggies, let alone wheelchairs.

My favourite attraction was the nature walk down to the dragon fly ponds that could be reached by two routes, one had a covered path which was doable with care (and muscles). The other ran alongside a stream and was gorgeous. I felt a welcome million miles away from the city. But the path was narrow, steep and sloping in places, with tree roots at every turn, and we had to give up at the Rowan tree above.

We tried out the two mazes, one has hedges and one doesn’t.

The hedgeless maze

We looked at the animals, and B got to make friends with a horse.

We admired the exhibits outside and inside (some areas of the two museums were not accessible either)

And of course we tried out the café and the toilets. The café was lovely with gorgeous coffee, which is always essential for tired special needs parents, but a limited menu though so I brought my own lunch for B. Better for cakes than savouries and good on intolerances and allergies. However my daughter could not use any of the three toilets and had to wait until we got home.

So the drive back had an added urgency, but I was still enjoying a natural high from a day spent in the country with lungs full of really fresh air, and that lovely feeling of sun kissed skin which I’ve mostly missed this summer.

I would love more adventures in the country with my daughter, but it is almost impossible to find anywhere off road that is wheelchair accessible. Greenan Farm worked for us yesterday because B was in her adult buggy, and there were lots of friends on hand in case I needed help. But with a few tweaks and a decent disabled toilet (preferably a Changing Place) it could be so much better for people with disabilities – and families with buggies too.

 

 

 

 

Priorities

 

My house is clean. No, I mean really clean. If you know me, you’ll know the significance of that.

It was the prospect of visitors that brought on this duster and J-cloth marathon and helped by the trial of a new medication that stops me feeling angsty about the drudgery, but also makes me feel sick when I look at a screen. So of course it’ll have to go.

The cleaning gave me a lot of time to think, and I began to think about priorities and how they’ve changed, and how I ended up here, mop in hand.

I’ve always worried about being judged. At least since I became a teenager and discovered that plaits, glasses, swotting and girly dresses were judged as unacceptable and led to bullying. Since then avoiding conflict and criticism has been a major aim of my life. It hasn’t stopped me though, it’s just changed the way I do things as I discovered you could be a party girl and study too.

For people in their twenties the accepted priorities appeared to be career and having fun, so I concentrated on them, with a fair bit success too. Then I got married and started pushing out babies, and everything changed.

Overnight it seemed that certain sections of society regarded the state of the house and the way that the children were turned out as the top priority now. Not easy for someone who will see something dirty and walk past thinking “I must deal with that sometime,” and who is still discovering things around the house that have to be cleaned. Clue: everything needs to be cleaned, but no-one had actually ever told me this.

The instinct to dress up the children seemed to kick in with the Mammy hormones, but they didn’t have the same effect on my urge to Hoover.

Yet babies need a safe and clean environment, so I had to acquit myself with a crash course in housework. Especially as I found that more people spending more time at home equalled a lot more mess.

(Even so I was perplexed when a neighbour gave up her beautiful red brick terrace to live in a new build suburban house on the edge of the city because she couldn’t manage four kids, a crumbling home and a largely absent husband. Now I know better!)

Most of the time I resent the tedium, repetitiveness and fleeting success of housework, but I know it’s bad manners to expect guests to stay in less than pristine surroundings, so with family due to arrive last Wednesday I stocked up on bleach and dusted down the steamer and fought my way through the cobwebs into the shed to grab the lawnmower and garden shears and got stuck in. It only took me two weeks, and even then the weeds are cheekily still popping up and the windows already looked speckled.

But at the end of my cleaning marathon even I could see the difference. And you know what? The end result made me feel much more cheerful than I expected…

A clean house

I’m linking this up with Reasons to be Cheerful over at Lakes Single Mum.

 

 

My Sunday Photo

You might think this is just another photo collage of my lovely Smiley daughter B. And you would be right. But there’s a heartwarming story behind it too. It was our third visit to the Lovely Food Company in Drumcondra and another big match day so B and I were happy to sit in the shade on a hot day, watch the excited crowds heading for Croke Park, and soak up atmosphere. The yummy coffee and cheesecake was an added bonus! The staff must’ve been exhausted with all the visitors, but they all smiled at my daughter as they passed, and then one young woman offered me some water.

I said “Yes, please!” as you do on a hot day.

But she returned to our table with two glasses, one for me and one for my daughter, with the bendy straw that B needs to drink anything. I didn’t tell her, but someone had remembered from our previous visits.

It’s the little things isn’t it?

Lovely Food Company,