When you don’t realise what the problem is

I’m one of those people who can’t always identify what is upsetting or worrying me.

Something I thought was just a niggle turned out to be much more than that when I finally managed to overcome it this week.

I live in a big old house with lots of steps – only the well insulated extension is wheelchair friendly, so that’s where my severely disabled daughter spends most of her time when she is at home.

The worst time is at night, when I have to leave her downstairs and go up to bed. She seems so vulnerable down there on her own, even with an impressive array of alarms and locks and a baby monitor. But I was finding it increasingly difficult to get out of bed into a freezing cold room and stumble down two flights of stairs in the middle of the night to find out what she needed. Sometimes I’d do it over and over again. So I usually went to bed feeling stressed, slept with one ear permanently glued to the baby monitor and woke up stressed too.

Finally this week it proved possible to sleep downstairs, just the other side of the partition from her, and in the warmest room in the house.

So on Tuesday morning I woke up refreshed and calmer than I have in a long time. Of course life had other plans and I then got hit with three bits of bad news that day. But I coped, and that’s an improvement too.

Other reasons to be cheerful for this week:

B’s bus driver bringing in my bins for me. A wonderful random act of kindness that he does regularly.

The father of my lodger installing my new oven – so that Christmas can actually happen here (the old one gave up half way through baking a birthday cake in October).

My eldest daughter bringing chocolate home for me after a difficult day.

The GP telling me I didn’t need another scope just a higher dose of medicine, and it’s working too. Terrified of how I’d manage the scope with no respite.

A long overdue coffee meet up with a friend, and B came too.

A successful protest outside the Irish Parliament with my daughter and other disability advocates, but sadly very little media coverage.

disability-protest-leinster-house-december-2016

Publishing a great post by a disability advocate about Ireland’s failure to ratify the UN Convention on the Rights of People with disabilities on another blog to widen its readership. It was a great to help and feel useful and competent!

Bringing B to visit a community disability hub in a nearby town – a base from where a small number of people with disabilities can access community life, which is supposed to replace day services in Ireland. I also got the chance to properly meet an autism mum who I’ve always admired. More on the hub when I have time to write about it properly.

Coffee and cheesecake outside last Sunday with B.

I have decided that my Christmas present to myself will be to uncancel my cancelled gym membership. In my defence I did look at gyms that appeared to be cheaper and would be quicker to get to, but they were mostly grim and not cheaper if I was to get the help I need to keep going. This helped too ha ha!

Milon, ICON gym, .png

More Reasons to be Cheerful over at Lakes Single Mum who is hosting this linky for December.

 

Finding Allies in the Special Needs Battle

As a special needs parent you become an army commander fighting battles on many fronts at the same time. But you usually have to do this with no troops, no weapons, and little understanding of opposition tactics. Because the State and the organisations  that are supposed to provide services often seem to be the enemy, withholding information, refusing to engage, and denying the help that you believe is needed. So you may be ignored, patronised, discussed behind your back, punished and accused. And your children may suffer as a result.

About ten percent cent of the population have some kind of disability or special need so you would think that such a large army of people would have clout, that politicians  would care about the issues involved and would listen. Far too often they don’t.

But sometimes you do find allies.

And you know all those people who knock social media? Well they mostly don’t appreciate the opportunities it offers. Like the chance to help your family and explain the issues that affect your children. I got such a chance on Thursday, when myself and my disabled daughter went to meet Senator John Dolan in Leinster House (the location of the parliament here in Ireland). Senator Dolan is also the CEO of the Disability Federation of Ireland.

The meeting was about Changing Places, why children and adults like my daughter need them for toileting and/or changing, how providing them would fit in with current disability policy and also provide business benefits, as well as ways to encourage organisations to install them.

The Senator was very receptive, listened carefully and was lovely to my daughter (who wasn’t particularly impressed with being at a boring meeting!).

me-b-senator-john-dolan-disability-phantomloos-worldtoiletday
Where’s the chocolate cake and the music, Mum?

I also raised some of my concerns about how current policy seems to be ignoring the needs of those with severe and profound disabilities. And he listened once again. So I may have found another ally in my fight to make sure that my daughter – and others – have the best life possible.

And I can’t think of a better reason to be cheerful for this week.

 

What job would you suggest for my daughter?

** an update of an old post from a previous blog **

Don’t get me wrong. I would love to see emails pinging into her inbox offering her employment. I would love to see her heading off in the morning in her wheelchair to a paying job where she is appreciated for the talents that she has. Because she does have talents: she can radiate happiness and calm to others, soothing those struggling with distress or depression and she can pick a pop hit from the first viewing of a video, but somehow I don’t see her being hired by a record label.

You see she is is severely disabled.

And not the kind of severe disability that means you can still attend a third level institution .

No, my gorgeous daughter is non-verbal, and cannot use an iPad or any other form of assisted communication – but she knows how to express her feelings, and I’m very glad about that. But I’m not sure that smiling and frowning would be considered a sufficiently useful contribution in the average workplace

She is partially toilet trained, but needs a Changing Place with a hoist and bed to use a toilet outside of the home. How many offices have one of those?

Despite years of physical therapy, she cannot walk and her arm function is so poor that even getting a spoon to her mouth is almost impossible for her.

Because of her multiple disabilities it is difficult to assess her functioning age: but reports suggest that physically she is under 12 months, and intellectually about 24 months.

But perhaps she doesn’t really exist, or is not an actual person at all?

Because according to a report in The Irish Examiner yesterday: “Having a job is essential in order for those with intellectual disabilities to participate in mainstream society and take an active part in the community.”

The report also said that “3,200 disability allowance recipients” were surveyed about their attitudes to work. No-one surveyed my daughter. In fact since all respondents ‘said’ their answers, presumably no-one unable to communicate was included in the survey.

Once again the small number of adults like my daughter are being excluded and ‘othered’ by the conversations about disability.

I feel angry and insulted and it’s happening more and more.

I learned that at least one Minister in the previous Government believed that every young person with a disability is employable. Are we heading towards the workfare scenario in the UK that has led to the deaths of thousands after their benefits were withdrawn? Where my daughter would be called into an interview about work and perhaps her benefits would be cut when she didn’t answer the questions? Does the State and the Disability Organisations really believe that they can develop training courses for young people like my daughter, that will achieve what 15 years of intensive schooling has failed to do?  Equip her with the skills to go out and get a job?

And here is B with some of her favourite toys, and the equipment she needs to get through each day. And once again I’m asking everyone out there: What job you would suggest for my daughter?

 

severe-disability-my-daughter-what-job-would-you-suggest-for-my-daughter

 

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/