When school goes wrong for good girls

We're not talking heroin here or teenage pregnancy, just the slow descent from excitement and wonder into boredom and lack of motivation.  In her 14-year school career Angel went from this:

To that:

That being a fancy dress party last Monday in school.  The whole year was sent home early...just in case.  Apart from the exams school officially ended the previous Friday, but then she was back for a while on four of the days last week.  The emotional bit came on Tuesday evening when there was a Graduation Mass, with cups of warm tea and awkward conversations in the community hall afterwards.  

Oh the tears, the drama, the breaking of the fellowship!  And yet most of Angel's friends will be staying in Dublin when they go to College. 

For the parents it was a night to feel the passage of the years, and reflect back.  I still remember so clearly that first school morning, when she wriggled her little hand out of mine and ran across the school yard to her friends - without a backwards glance.

There was little drama in the classroom, and Angel sailed through her teenage years with the support of a great group of friends.  She speaks warmly of some of her teachers, but her last days at secondary school were marked by complete disinterest.  Chatting to the other parents, a lot of us felt the same.  The school overlooked our girls.  For school awards, for positions of responsibility, to take part in school events.  Basically the school seemed to have their favourites, and they were always picked.  Now these girls are very talented, and deserve to be recognised.  They will surely go on to be successful at whatever they choose to do in life.

But I think that every child is good at something.

Should schools not try to find that special talent and reward and recognise it?

Many parents do that at home as well, but it must be really good for a child's self-esteem to get praised in front of their friends and classmates?

At one extreme are the schools that ban competition altogether.  That have no awards and no winners.  I don't think that works either.   It's not a preparation for real life.  And unless you can wrap the children up in a bubble that excludes TV and internet access, they are likely to believe that winning is important, sometimes even when they are very young.  I think that children do need to learn about winning and losing.  They need to know when they could have won, perhaps if they had put in more effort or if something had not gone wrong.  They need to know that losing does not mean you're a bad person or a failure, but that you chalk it up to experience and learn from it and do better next time

One idea I came across was schools that only allow pupils to win an award once - even if they are the best in the school, someone else gets the opportunity the following year.  I really like this idea.

They have a great solution at Smiley's school too: here they make the awards fit the children, so last year she won the 'happiest child in the school' award, which I *may* have mentioned before.

Angel might've cared more about the school if she had felt that the school cared more and took more interest in her achievements.

Is this something that bothers you?

Taekwondo for special needs

If you're reading this in Texas, Thailand or even Tipperary, you're probably wondering why I'm boring you with some information about a little club for kids with special needs in North Dublin.  Well it might be little to you, but for me and my family the Rainbow Junior Arch Club has been huge part of our lives for the past ten years.  A place of refuge, somewhere to go every week where I could relax with the children and meet other parents.  Where my kids are accepted without question.   It all ends this Saturday, when the Club closes for the summer.  Smiley is now 14 and by far the oldest child so we won't be going every week from September.   I will no longer be Club Secretary and after the AGM - hopefully - someone else will be taking over.

The Chairperson is resigning as well, so we'd love for this Saturday to be a huge success.  And that's why some very special guests have been organised - a display team from the fabulous Red Star Sport Taekwon-Do Club, who will also be teaching some simple moves to our kids - non contact obviously.  

If you are interested in joining a club like ours, please drop in this Saturday and see for yourself.

One of the reasons I have to make these changes is that I currently feel like a general fighting battles on about a dozen fronts.  Some things have to be let go and I need to simplify my life.  Like so many families my income is going down as household expenses go up.  I've been trying to get a job that fits around the needs of my children but Government and banking policies mean that I may have to take whatever I can get - even if that means reducing time spent with the kids, doing things for the kids and fighting for them to get the right therapies and help.  Of course down the road their care may cost the state more, but that doesn't seem to bother anyone.... 

Oops did I miss the end of the world?

It looks as though I missed the end of the world - or did I?

Stolen from @jillsmo
I was watching for the count-down on twitter and I had my favourite song ready to play just in case.  Then I got distracted by one of the kids again and pressed play just after the 6pm deadline - and was quite glad to find I'd missed the rapture party.

Sometimes the end of the world seems like a good idea when you're faced with yet another stinky nappy at 5am or you hear of another horrific atrocity on the news, or a massive meltdown when you've got to get somewhere or when the kitchen looks like this....again.

Mostly it doesn't.  Seem like a good idea I mean.

But I do wish those pesky people would stop predicting imminent Armageddon as it means days of twitchy fingers as I keep switching the radio off so aspie boy doesn't hear - his reaction doesn't bear thinking about. Because if it's on the news, it must be true, right?  

NB: once again, no offence intended to anyone, I love the black humour of the tombstone site, apologies if you find it tasteless.

Save the Children

Our children are our children forever.  But they don't see it like that:

"I'm not a child!" says my ten-year old.

Well son, technically you are.

Nor do all children become adult at 18, because some, like Smiley, will always have the mind of a child.

And even if they are officially adults, sometimes they are still treated like children.  Angel turned 18 last September - a very emotional day for me - and since then she has voted in a general election, bought drink legally and taken her own medical decisions.  But the education system does not recognise this, and as her Mum I still have to make decisions on her behalf and write and sign all school absence notes.   That all ends tomorrow - another landmark day - and her last proper day in school.  On Monday there is a fancy dress party and then she has study time at home until her final exams in June.  She has her future all planned out: a college course has been chosen, and her social life will be funded by her part-time job as a gymnastics coach.  Somehow I suspect that she is hoping that I will still fund her gymnastics training.  You see this girl still has big dreams.  This is who she wants to be:

Angel is lucky that she can dream big dreams.  She knows that there are other children in the world whose dreams are for clean water, safe food and modern medicine.  That's why she drew the above picture - our contribution to a meme supporting the current Save the Children Campaign.  

This aims to save the lives of up to 4 million children by vaccinating them.

Delegates at the upcoming global vaccine summit on June 13th will be asked to fully fund a vaccine programme for the world's poorest children. 

Please sign the petition to support this campaign.

I don't do many memes here, and I know they're out of favour at the moment, but this is important and I was delighted to be tagged by Mummy From The Heart.

These are the rules of this meme:

1) Get your child to either draw or craft a self portrait of themselves now or in the future.
3) Sign the Save the Children petition and then pass it on to your friends.
4) Write a blog post about it as soon as possible, including info about Save the Children and the petition. We want as many people linked up AND signed up the petition by Sunday 29th May 2011.
5) Tag 8 fellow blogger friends.
6) Come back and link up your posts at Red Ted Art
7) If you have time, visit each other posts and say hello!

I'm asking these bloggers if they will help:
Wendy @ Savette Gazette

To get the latest news on the campaign, you could follow the twitter accounts and blogs of Lindsay Atkin (@Liliesarelike), Chris Mosler (@christinemosler) and Tracey Cheetham (@tchee) who are going to Mozambique with Save the Children this week.  The twitter hashtag for the campaign is #PassItOn.

Recipe for Respite

NB: This is an update on respite and there are a few details that I have included before, so you might not want to read it if you've read my previous posts on this subject.

I was going to apply for a job this morning.  Instead, as I was skimming the top few layers of my in-tray I noticed a letter to say that Smiley is in Respite tomorrow for one night.  And I am so not ready!  You see there was a respite review meeting last week, and I agreed to make lots of changes to help the staff and improve her experience.

That sounds like she was having a miserable time.  Not at all.  She comes home happy and smiley and buzzing.  But the first thing she usually does is drink about a pint and half of juice, then she goes to sleep and then she sometimes develops constipation over the next 24 hours or so.  At the review I discovered that she often sleeps for less than 6 hours a night - at home it's more like 9 hours - and she wasn't getting her medicine because I hadn't sent in the prescription.

So I spent three hours this morning preparing for tomorrow, thought there *may* have been some tweeting involved too.  The preparations including ironing her PJs - something I've never been known to attempt before - just so they know I'm serious.  I've bought a special speaker for her iPod shuffle, so she can have soft music to play as she sleeps.  Everything is now labelled with her name and packed in an enormous case which includes a check list of all the contents.  I've updated the information on her daily routine, what she likes and when, and how she tells you what she needs.

Bag packed and ready to go

Here is my recipe for respite - so if you don't have a child with special needs, now is the time to stop reading this and go and find something more interesting... 
  • Don't introduce your child to respite until you are both ready: I waited until Smiley was 12.
  • Check out the accommodation: make sure it's suitable and welcoming.
  • Meet some of the staff and talk to them about your child's needs.  Are they listening?
  • Who else stays in the respite house?  In Smiley's case it's other children from her school, so she's with friends.
  • Talk to your child about her 'sleepover' and explain to her that's she's going to have lots of fun with her friends.  Or read a social story.
  • Prepare a schedule for the staff showing all the important details of your child's normal day.
  • Send in everything you think she might need - a midnight trip to the respite house with something in the middle of the night is to be avoided at all costs!
  • Label everything clearly and prominently and provide a check list of all items that are in the bag - it helps the staff to make sure that they are returning all her belongings.  One of her many pairs of jeggings being left behind is not a problem - it would be more serious if her medicines got forgotten.
  • Communicate - more often than I do - with the respite house to make sure that all is going well.
  • Finally respite should be a break for you and fun for your child, so enjoy it.  I used to feel guilty, but I don't now.
I'm hoping that this recipe will work really well - or have I left out an important ingredient? Please let me know...

Can't walk, can walk

Do you ever marvel at your ability to walk?  The way you lift up one foot and then the other and move smoothly forwards, without thinking about it, collapsing or falling over - well usually.  Most of us take this for granted, unless we are - or become - disabled.  More than anything else, walking gives us freedom.  To do what we want and go where we want, on our own and at our whim.   Not being able to walk makes you dependent, on people and technology.

Of all Smiley's problems, the one question that most people ask about is 'will she walk?"  And the answer is: yes she can!

She has always been able to walk, it's just that she needs help.  As a toddler I would hold her up and her little legs would do exactly what legs are supposed to do, except that she would fall if I let go as her knees would buckle.  There's no strength in those joints and her legs are not straight.  

I tried her in a baby walker.  She looked really cute, but could only stand in it.  Occupational therapists and physiotherapists tried out different equipment, most of it complicated and ugly.  Then one of them found this. 

It was one of the happiest days of my life when I finally saw Smiley walking and smiling, happy and free :D  I know I've used this photo before but it is just perfect.

You see, I am convinced that walking - even with help - is very very good for Smiley, physically, mentally and socially.  I know it helps to stop the constipation and I'm sure it has other medical benefits: because people are meant to walk.  Walking also makes her equal to other children, she's no longer the one in the chair who just watches and waits to be included.  This made a huge difference at the Rainbow Junior Arch Club where she used to toddle around the gym hall following the other children, laughing and smiling, and part of the gang.

In her walker she gets the chance to be mischievous, which the school has encouraged (under supervision obviously) by leaving the classroom door open to see what she will do and where she will go.  One Christmas she headed straight for the school Christmas Tree and was found giggling under the branches as she played with the shiny baubles.  She also delivers messages by walker at school - with a guiding hand as her steering can be a little suspect!

But about four years ago she started to grow... and grow... and grow.  She was wearing toddler clothes.  Now she needs adult sizes.  The growth spurt has resulted in physical changes too, including contractures and windsweeping and she struggles to manage many of the skills I helped her to develop: sitting unaided, crawling on her tummy, even rolling over.  She is also now too big for her walker.  A replacement has been trialled in school for the last number of months, but she no longer flies around the place.  At home she doesn't bother with the walker, and some weeks it felt pointless to drag it up to the Club.  Last week it took three of us to lift her out of the buggy and position her carefully into it and ready to go: And what happened?  She scrunched up her hands and her head hung down.  He shoulders hunched and her feet stayed still.  Was this the end of Smiley walking?  Well I don't give up easily and last Saturday I brought the walker again.  This time it was like I had a different child.  

And here is the proof of how much she loves it, with me encouraging her, *cringes at sound of own voice*.  This video is a few months old, but you get the idea:


So I guess I'll have to keep finding ways to make sure that Smiley can walk, even though she can't.

Little Charities giving to Big Charities

Bag packing for charity is not my favourite way to spend my Saturday mornings.  But for the sake of Smiley's Saturday Social Club I've gritted my teeth and got on with it.  Several times.  And just because I've stood at the checkout and been ignored and patronised does not mean that I like it any better now!  Some people are lovely about being ambushed to have their bags packed, and are very generous.  Others are not.  But it is an easy and fairly lucrative way for small community groups and charities to generate funds.  Most supermarkets - and their checkout staff - could not be more helpful.  Bag packers are often allowed to put up posters, we clutter up the checkouts with our buckets, sometimes our noisy demanding children are with us too, and we are very grateful to the supermarkets for putting up with us. 

Hopefully thank you letters are sent to every supermarket that hosts bag packing, but should we be giving them something more?

This week I was told about a small community group that held a very successful bag pack at their local supermarket.  But they didn't get to leave with all their takings.  They were asked to give a small percentage to the main charity supported by that supermarket.  Now nominated charities are usually big national organisations with paid staff and a high profile. They do very good work, but should they be taking money from small local groups?   Bag packing could be the local group's big annual fund-raiser.  Sometimes volunteers have to make complicated arrangements or even pay babysitters so they can take part.  Should they then have to give back some of the money they raise?  Or is this a reasonable way for bag packers to express their thanks to the supermarket that is hosting the fund-raising effort?

Blog Gems - Air Your Archives #15

My friend Jen is taking a break from hosting Blog Gems for a few weeks as she deals with much more important stuff : looking after her son HRH who has been in and out of hospital for the past number of months.  HRH has autism and you can read more about him and his brother and sister on Jen's fabulous blog, The King and Eye.  Jen is one of the first people I met from the autie Facebook Group and I am really honoured that she has asked me to help keep Blog Gems going.

And this is what it's about:

How many posts do you have languishing in your archives? Great posts that will never be dusted off and brought out to breathe again! Maybe you created fabulous content before you had lots of followers, or maybe you have been blogging for years and your current followers haven't seen your older material.

Blog Gems - Air Your Archives is a fortnightly linky list where we will give a prompt and you select a post from your archives that fits the prompt. You do not have to create content for the prompt, unless you want to. All you have to do is copy and paste the url of the post into the linky list. Voila, an old post gets a second shot!

To take part:

1. Follow my blog to get future Blog Gem posting information and linkys.

2. Grab the Blog Gem button and place it on your sidebar (html code
here or above) Putting the button on your blog is not a dealbreaker, some people just don't like doing it and I have no problem with that at all. What I will say is that something like this can't be successful without 'word of mouth' so I would appreciate if you could find another way to let people know that this is available and they are welcome to join in.

3. Enter your link.

Read and comment on the submissions of the two blogs posted before you on the linky list. (Please!)

5. Help me spread the word by telling your blogging friends, either by tweeting this or blogging about your entry. 

Allison at Life in a Pink Fibro and I have gotten together to generate some cross-hemisphere linky love. Allison runs Weekend Rewind every weekend and is also based on posting up your favourite oldies. It is one of the friendliest bloghops I have ever taken part in! Her linky is closed now, but will be open again next weekend. Remember to go have a look!

Michelle at Mummy from the Heart has started a lovely new meme called
Reasons to be Cheerful, have a look.

For any newer bloggers don't worry if you have to link up posts that you have linked up before, it is very unlikely that you will end up with the same readers as last time so continue to join in and have fun. Many, many thanks to those of you that blog about Blog Gems, I really appreciate the links and help getting the meme 'out there'. 

I was thinking about Jen and how brave and cheerful she has been over the past while, and what an inspiration to all her friends.  So the prompt for this week is to link up a post that has inspired or helped other people: broad interpretations are encouraged!  I'm looking forward to reading them x

Wash Your Hands!

A slightly shaky pic thanks to CD!
I washed my hands ten times today between getting up and shooing the kids out the door.  Not something that I would normally count, but a chance remark got me thinking...

There was an Open Day at Smiley's school recently.  It was great to see again just how happy she is and how loved.  And I also got to catch up with some of the other parents.  I don't see them very often as the school is nine miles away and Smiley travels by special bus with some of her friends.  There was all the usual how are yous, how is she/he getting on, and then one of the Mums suddenly said to me out of the blue:

"Do you find that you're always washing your hands?"

My reaction?

A sense of relief that it's not just me...

I'd started to wonder if I had OCD* because I seem to spend half the day washing my hands  when the kids are at home.  If I did more housework it would be the same when they are in school as well.  Friends have recoiled at the sight of my hands in winter when my skin goes red and sore and rough and sometimes splits and bleeds, and my nails are a disgrace.  I do my best: every sink has its dedicated pot of handcream, but even so..

The early morning count today involved dashing from nappies to packed lunches to bins to runny noses to breakfasts to toilets to teeth to washing to the front door and back.  Last Sunday at one point I was running between the Xbox (CD) the toilet (Smiley) and the chicken (a roast dinner especially for Angel) and washing my hands at each stage!

Do other people do this or is it because I'm a carer?  Perhaps it's the same for all mums, especially those responsible for the housework as well.  Is it because I am always going from something dirty to something clean?  Smiley has to be toileted four-five times a day and her nose is often running.  All three children want food and drinks all day and sometimes I have to get it.  There's dangerous household cleaners, dirty bins, raw meat, garden waste...most days my hands would come into contact with all of these.

So can I do anything about this.  And should I?

*I hope this does not offend anyone who does have OCD

Boys, baking and bananas

Some say that sex only started in the 1960s.  This is obviously not true.  And some say that faddy eating only started with the arrival of McDonalds.  Not true either.  I was that faddy eater as a child, and so was my Dad in the 1930s.   So I guess I deserve to have children who are picky too.   And boy did I get faddy eaters.  Oh I started them off well: as smallies they drank only water and ate raisins as snacks, but somewhere it all started to go wrong and now I usually find myself cooking four separate variations on the same meal - did I mention that I am fussy too?  Luckily I have a lovely kitchen with a very energetic dishwasher.  
Today they often prefer takeaways and processed food to my home cooking - which really isn't that bad.  Perhaps if they make it, they'll eat it?  So I'm trying to get them to help, and I think baking is the way to start: cooking with chocolate is a lot more exciting than cooking with chicken.  Yes, I know the sun was shining all Easter, but it's easier to get aspie boy into the kitchen than out to the park.  
Yesterday we made fairy cakes for Angel, and Smiley held the recipe book.

Then CD wanted scones, so we made them together.
Last Friday we made chocolate brownies before breakfast as we were due to meet my bloggy friend Jazzygal to introduce her son to mine, as we had a rough idea that they just might get on well.  And so they did.

Thursday was the highlight for CD, when we made banana bread, which is his number one favourite thing to eat right now, and a teeny bit healthy perhaps?  In fact he was so cheerful afterwards that his big sister was able to do an extra long training session with him, part of the programme to tackle his anxiety.

And here's the recipe - who knows, it might make your kids happy too :)

Banana bread


285g/10oz plain flour 

1 tsp bicarbonate of soda

½ tsp salt

110g/4oz butter, plus extra for greasing

225g/8oz caster sugar

2 free-range eggs

4 ripe bananas, mashed 

85ml/3fl oz buttermilk 

1 tsp vanilla extract

Preparation method

1) Preheat the oven to 180C/350F/Gas 4. 
2) Sift the flour, bicarbonate of soda and salt into a large mixing bowl.
3) In a separate bowl, cream the butter and sugar together until light and fluffy.
4) Add the eggs, mashed bananas, buttermilk and vanilla extract to the butter and sugar mixture and mix well. Fold in the flour mixture. 
5) Grease a 20cm x 12.5cm/8in x 5in loaf tin and pour the cake mixture into the tin.
6) Transfer to the oven and bake for about an hour, or until well-risen and golden-brown. 
7) Remove from the oven and cool in the tin for a few minutes, then turn out onto a wire rack to cool completely before serving.
8) Eat and enjoy :)

I've been somewhere else...

It's been a very busy two weeks, and I have lots of half-written posts about all sorts of stuff....hopefully I'll get to finish some of them soon.

But in the meantime I dug out an old post to share on the Irish Autism Action Blog, where I guest post from time to time.  Sometimes I even write new stuff for them!

Anyway if you don't know this award-winning blog and you've an interest in special needs, you really should check it out, there's lots of ideas, information and heart-warming stories.