Saturday, March 28, 2015

So the Daily Fail says that autism is not a disability?

This article - which I am not going to link to - annoyed me on so many levels. I wonder if the author's views were misrepresented, as scattered through the article are a few more measured comments that mention the difficulties faced by individuals and their families.

Saying that autism is not a disability implies that those with the diagnosis will need no help or support, yet as parents we know for sure that most do need help, especially when they are children. They need time, love, concern and expertise to help them to lead fulfilling lives as adults.

Often one or both of the parents may give up their careers to help their children, but if their children do not have disabilities then presumably the State would regard this as an indulgence and remove financial supports. Given that seems be the policy of the Conservative Party in the UK, I wonder is this article part of a softening up process to get public support for cutting financial aid to carers, which is under consideration according to today's papers.

Whether autism is disabling to the individual also depend on its severity and comorbid conditions that may include anxiety, OCD, ADHD, selective mutism, and many more.

I also feel that this article promotes the view that 'disability' is bad, so where does that leave people with physical and intellectual disabilities? Does that mean autistic people want to distance themselves from those with visible disabilities? Instead of embarrassment about the label 'disability', should we not actually be moving to a more tolerant society where all shades of human life are valued and respected?

It is highly likely that I have Asperger's Syndrome, like my son, and if anyone wants to say that I have a disability, that's fine with me.

Note: this was written during the drinking of one cup of coffee, so I may add to it - or possibly revise it - later!




Thursday, March 26, 2015

Making healthy "Twix" bars in minutes and other reasons to be cheerful

It's been a week of ups and downs, lots of good stuff, sad news and a few crises, so quite emotional at times. Hopefully you want to know a bit more, so here's my reasons to be cheerful for this week.

Healthy Twix Bars in minutes


We're totally addicted to the Happy Pear recipe for "Twix" bars thanks to Bumbles of Rice, but totally fed up with the amount of time it takes to make them! So one frustrated afternoon I used this method instead:

1. Melt the chocolate in the microwave.
2. Shove ALL the other ingredients in the food processor (plus a handful of rolled oats requested by number one daughter) and mix thoroughly.
3. Spread out onto a flat piece of baking/greaseproof paper.
4. Spread chocolate on top.
5. Freeze until set.
6. Cut up into shapes that won't resemble Twix bars at all. But I promise you, your taste buds won't know the difference...

If you haven't tried them, you really should. Perhaps over the Easter holidays?

My son


Things are looking up for him this week. It seems that everyone involved in his life is finally on the same page as me: I will say no more on here, but it really is good news. And I also may be on the way to naming another little problem that has been bugging him for the past few years. Thanks so much to the helpful parents who pointed the way..

A proper night out


Okay so it was only a couple of house, but I paced myself all day and managed more than the usual ten minute rush to get ready, which was great. It also got me thinking about my life, a dangerous pastime I know! You see I hang on to nights out like these as proof that my young self is still there, even now, ready to be dug out and dusted down when the time is right. But sometime soon I need to reinvent myself, just as my mother did around this age. Eventually the make up will not be able to cover the lines or disguise the jowls. I will need to find a new way to look and conduct myself, one more appropriate to my age. Well, don't I?


Reasons to be Cheerful



Tuesday, March 24, 2015

7 things my mother taught me

I've been thinking about my Mum again, perhaps because Mother's Day was last Sunday in Ireland and the UK, but there were other reasons too: sad news about other people's parents and friends, and the screening of a new version of the Cornish historical drama Poldark, that I couldn't bring myself to watch, because I watched the original series with my Mum in the long ago 1970s. She sadly died before this blog was born, though we'd been losing her one memory at a time for a number of years, and while the grief was knife-sharp at first, it has faded over time to a dull ache. But now and again something happens that makes it flare up and catch me unawares.

"Your lovely Mum", was how so many people described her, well before that adjective became overused. And she was, in her own quiet, elegant way. We clashed as I grew up and away, I was so different to her and she must've found me quite challenging to parent. For many years I mostly ignored her values and her lifestyle until I became a mum myself. And so it's over the last 20 years or so, that I've really absorbed some of the things that she tried to teach me.

1. Value the little things

My Mum taught me to value the little things, years before all those annoying internet memes. A light in the sky, the smell of baking bread, a reunion with a long lost friend. The unremarkable and the everyday. She adored the spring months and immersing herself in the thrill of new life and growth in the garden and the fields. I used to enjoy the heat of the summer break, then the colours of autumn, but now it's the promise of spring that I also love the most.

2. Pacing yourself

My mum worked hard, but she knew that life is more of a marathon than a sprint, and understood the importance of taking breaks during the day: I always remember her relaxing for a few minutes after lunch with the newspaper and a mug of coffee. Whereas I lived life at 100 miles an hour when I was young, packing as much into every day as possible. Sleep was a nuisance, to be avoided by keeping busy and ingesting large amounts of caffeine. That does not work when your life is under the control of two children with additional needs, and so I reluctantly learned to slow down and pace myself, and now I take breaks too - with coffee of course. Without them, there would be no blogging.

3. Reinventing yourself

My mum had her three children close together, so once we became teenagers she had a bit of free time and I remember her going to different evening classes. Then she discovered yoga and everything changed.  Over the next 20 years the house began to fill with yoga books, her wardrobe with leotards and leggings, and her days with learning and practice. She became a much loved and well-respected yoga teacher in the town until she retired - still able to do the splits - in her early 70s. She was living proof that yoga really makes you look and feel good as you get older. And that's why I'm doing it. But I'm still looking for a way to reinvent myself. More of that another time perhaps.

4. A thrift too far

The war years and rationing had a profound effect on the thinking of my parents, especially my Mum. Even when they were living a comfortable lifestyle, my Mum was never extravagant. Clothes were from M&S, holidays were self-catering in the Lake District and plastic bags were never, ever thrown away. I feel a little sad that she felt she had to constantly wash and reuse plastic bags: such a messy time-wasting chore - I've tried it. She certainly taught me that you can take thrift too far.

5. The wild places are healing

Many of my childhood memories involve being reluctantly dragged up mountains bribed by the promise of a Creme Egg. At the time I was not impressed, yet now it's the sense of well-being and well-used limbs that I remember.  I learned that a walk in the wild places, where the weather and nature is king, puts most problems in perspective. Why do you think I run off to the sea whenever I feel overwhelmed?

6. Mums understand Mums

As a teenager I was so angry with my parents, and now I wonder why they weren't angrier with me! Raising my own children has totally changed my understanding of what my parents did. My relationship with my Mum was completely healed after Angel was born. She never interfered or offered unwanted advice, even though I didn't breast feed. She was a wonderful Granny to my daughter, and a supportive mother to me, even though the Irish Sea divided us. I just she'd been around for longer to see her grandchildren grow up. I think she would have been very proud.

7. It's not a sin to say "no"

Another lesson that I took a long time to learn. But my Mum was courageous and said no throughout her life to people, requests and conventions. She and my Dad married very young but waited ten years to have children, because they wanted to travel and have fun during their twenties, before settling down - as they saw it - to start a family. Later she refused to allow any of the ageing grandparents to move into the family home, because she knew she would not be able to cope. There were many other things too, they were not done selfishly, but instead of doing what was expected, she looked at what would be best for her and for her family. And I think she was absolutely right.



Thursday, March 19, 2015

A funny thing happened on the way to the parade

Another year, another St Patrick's Day, and this one was supposed to be extra special for Smiley. I'd forgotten to apply for a space in the disabled viewing area for the Dublin Parade, so I was looking for something else to do on the day. I actually enjoy the smaller parades, they're usually just as much fun, a lot less stressful and you can see everything, even without special viewing areas. So I got complacent, but more of that later.

In the hunt for a another parade, I asked on Facebook and the lovely Wholesome Ireland suggested Balbriggan, which sounded great, especially as it would give me another excuse for a walk by the beach. Then an unexpected email arrived from the wonderful Snowflakes Autism Support with an invitation to march in the Swords Parade with them. Obviously it was aimed at my son, but I cheekily asked if I could bring Smiley instead, and of course they said yes.

Meet us at the school, they said, so I thought I'd be clever and park in the retail park on the other side of the dual carriage way. That is until I saw the big "we will clamp you" sign. So I sighed and drove off towards Swords. The nice people at the barriers let me through and I pulled up outside the school and tried to turn in, until a worried looking official tapped on my window and informed me that this was just a dropping off point. Who was I going to drop off? Smiley? On her own? Obviously not, so I pulled away and drove on. And found myself on the parade route, following a police buggy, with NO WAY OFF.  Yes my mortification was complete as we cruised the entire length of the Swords Parade. We even got a few waves. Obviously I had planned this outing very badly indeed.

I dumped the car in a housing estate and there followed a very sweaty jog pushing Smiley in her buggy (remember she's over 8 stone) which nearly came to a faltering halt when I got stuck on the central reservation. Our adventure might have ended there, but for a kind samaritan who obviously spotted that my reserves were depleting rapidly and stood in front of the cars so we could cross. This really happened!

And yes, people, we made it! With five minutes to go, and wow it was absolutely one hundred per cent worth it and really the only reason to be cheerful that I need this week.  My daughter laughed and giggled and smiled the whole way down the parade route. I think she thought that everyone was there to see her. It really was one of the best days of her life.



Reasons to be Cheerful








Monday, March 16, 2015

After school with severe disabilities. Part 2

This is part two of a planned series of posts about our experience of the transition from special school to adult services for my middle daughter who finishes school this year. She has severe physical and intellectual disabilities and realistically will need twenty four hour support for the rest of her life. Most young adults like Smiley attend "adult services": training centres for the more able and day centres for the rest. I know as little about them as you do, but I am trying to find out. There is a process to be gone through, and I plan to blog about it here, but without using too much jargon or pointing too many fingers, as I imagine that most of the large organisations that provide services for children and adults with disabilities operate in a similar way.

No premises


I've already discovered a few depressing things about adult services, and the second meeting just added to this list. The real situation is as clear as mud. The only clear facts seem to be that in Smiley's area there will be training places available for young adults with mild disabilities, but nothing is in place for those more severely affected like my daughter. No premises you see. This is because of the budget only being announced in June, or so I was told. That lack of planning doesn't make sense to me. But it seems that no-one is to blame for this situation. Apparently there is a good relationship between the health service and the organisations that run adult services. Perhaps the management all play golf together? Of course it will be the young people caught in the middle who will suffer: they will miss out on activities, therapies and socialising with their peers: being stuck at home with ageing parents is NOT a good substitute. Even though I bring Smiley out into the community, we never meet anyone like her, and we've never found activities for adults like her. I don't know where they go, or what they do.

Lobbying


Parents like me are being asked to lobby politicians for more funding for services - yet another job dumped into the laps of already overwhelmed carers. A job that surely these organisations should be doing themselves. I did try this once, bringing my children in the rush hour to a local 'clinic' and then spending two hours apologising to everyone else for taking up so much space and other things, and then getting five minutes with the man himself. All for a standard letter that I received about three months later. I've no wish to put any of us through that again. But I might call them out on twitter.

Transport


There may be no transport either to any service that is provided. Yes I know that's a privilege. But it means I have time for my other teenager in the morning, and it enabled me to work for many years, as dropping Smiley to her school in the rush hour involves a round trip of about 90 minutes on a good day, when you include the loading and unloading of the van, and then settling her in the classroom. It's not the same as dropping your average teenager off at the local secondary school. I have no idea where the adult service might be located. And neither does the organisation that is supposed to be providing it.

What happens next


Nothing. At least until the end of June, or so I've been told. So far not one mother I have spoken to has anything positive to say about adult services or the transition process, and I'm starting to understand why. Yet I know that there are good services out there and good people working in them, I hope I can find one of those places for Smiley, but they should be available for every school leaver with disabilities who cannot access meaningful employment. In the meantime, it's a game of writing, waiting and wondering.



Organisations that can help in Ireland


Special Needs Parents Association

Inclusion Ireland



Thursday, March 12, 2015

Peaks and things beginning with 'B'

It's Thursday again, so it's time for my reasons to be cheerful, hope you have some too.

Free Medical Services


In Ireland we don't have a National Health Service, we have a multi-tiered health service, with some people paying almost nothing, some people paying a little, and some people paying a lot. Now that Smiley is an adult with her own small income, she is finally entitled to free health care.



Not that she will need to use it very often as she is pretty healthy. Just as well, as I shudder when I read the latest trolley count figures from our accident and emergency departments....

Boohoo


No I'm not crying. It's about a clothing website that Angel has been nagging me to use, since shopping for clothes in real shops is getting harder and harder. It turned out that the most difficult part of shopping on Boohoo.com was choosing what to buy. The slow delivery option took two working days and I've got a new jacket and boots for spring that are smart and hopefully vaguely age-appropriate too...

When relaxation isn't relaxing


Hands up who else doesn't like the 'relaxation' bit in bendy sh*t yoga classes? I mean it's not really relaxing lying there wondering how you're going to fix this, resolve that and deal with the twin peaks of laundry and paperwork when you get back home? But this week I found a solution. As you know, I've a huge choice of beaches within 30 minutes drive to escape to if needed.  On Monday I did, so during Tuesday's class, I just retraced all my steps in my head, instead of sneaking out the door with the latest excuse. The unexpected benefits of walking.

Long lost cousins


Okay, so not really "lost", just the other side of the world, so out of mind for a very long time. But last Friday I got to meet her, my only female cousin, after a gap of almost 40 years. Our meeting was too short to do more than touch on the stories of our lives, and much more entertainingly, the mad stuff that goes on in Australian political and civic life. Like this giant balloon with six boobs.

Reasons to be Cheerful




Monday, March 9, 2015

Not soup, sea

Because I can't blog about it. Because my world has shifted. Because I feel lost. Because I don't know where to turn. Because those who are supposed to be helping me, seem to be making things worse. Even because my broadband provider blocked this blog today. Because the sea always makes me feel better. Because I needed to calm down. Because I've got to do it all again tomorrow. That's why you're getting sea pictures instead of soup recipes. But I will get to them, I promise.





There's a bit of wind shake included for free...