And the meltdowns get worse

Aspie boy's meltdowns hit a new level last week, so when Aleyna's Mum from Doing It All for Aleyna asked for a guest post, it was the only thing in my head.

Even if you don't want to read yet another meltdown story you should check out her lovely blog.

This blog has been nominated for lots of awards and her love for her daughter shines through every post she writes.

Things I like about the school holidays

Even the bus drivers were smiling more than usual as they dropped the children home for the last time till the end of August.  It was Friday, and the end of July provision, which for my kids was a school-based summer camp.

It means that I have all three children 24/7 for the next 5 weeks.   And while it gets stressful at times, there are lots of good things about the school holidays...

...I can switch off the alarm clock.

...I am lucky enough to have a home help on school mornings, but it's great to get a break from needing to be up and dressed and awake for 6.40am.

...Smiley's enormous school wheelchair - the one that takes lumps out of the doors - can go in the shed.  This will make much more space in the house.

...Smiley can enjoy her lie-ons and I'm hoping I might get a bit more sleep too.
 
...With no scheduled appointments or activities we can do our own thing.  Aspie boy thinks this means that he can sit in his den playing with his games consoles for the next 5 weeks.  But he would be wrong!  I plan to get him out of the house at least once a day.  There'll also be more time to enjoy shopping with Smiley and to visit friends old and new.  And my family are visiting this week.

On top of that, yesterday Smiley and I got the chance to enjoy an all-too-quick coffee with the lovely Lynne from The Giggle Fest and her gorgeous daughter Holly.  They were on a weekend break to Dublin while her son Jack, who is similar to Smiley in ways, was in respite.  It was great to chat and find out just how much we have in common :)

Finally, I just need to announce the winner of the Powermat Giveaway: It's LM, one of my Facebook friends, and I promise I'll get it to you in the next couple of weeks.

Taking children away instead of giving help

We thought it was finished. We're supposed to be living in this bright new future where children's interests come first.  For most children that means living at home with their families.  That's where they feel loved.  That's where they feel safe.  So when families are struggling - for whatever reason - surely the first response of the State should be to provide help and support.

In the Western World we think the State is on our side.  Our countries are democracies aren't they?  We don't expect the State to 'punish' us or our children unless we have broken the law.

So when families are struggling - for whatever reason - surely the first response of the State should be to provide help and support.

It's frightening to find out that this is not always the case: in Canada a little girl with autism was apparently removed from her home by social workers by after a runaway episode.  She is currently in foster care and her father will have to wait months before he can go to Court to try and bring her home again.  Her father is a lone parent and she has two brothers, one of whom also has autism.

This story feeds into some of our deepest fears as parents, especially if you have a child with special needs and feel overwhelmed at times by the challenges.  Do you ask and beg and plead for help and services, or are you afraid that if you shout "I cannot cope" too loudly and too often, that social workers will come to your door and take your child away? 

(I'm actually saddened to read the role of social workers in this awful story, as I have had a social worker for Smiley ever since she was born, and they've all been great.)

This post was written in support of the #blogforAyn campaign.  There's more information on Facebook and a petition and a donation site.  Another way to help would be to write to those people who can make a difference:

Stephen Harper 
Office of the Prime Minister
80 Wellington Street
Ottawa, ON K1A 0A2
Fax: (613) 941-6900
E-mail: pm@pm.gc.ca

Christy Clark
Premier of British Columbia
Parliament Buildings
Victoria, BC, V8V 1X4
Fax: (250) 387-0087
E-mail: Christy@christyclark.ca

Mary McNeil
Minister of Children and Family Development
Room 306 Parliament Buildings
Victoria, BC V8V 1X4
Fax: (250) 387-9722
E-mail: mary.mcneil.mla@leg.bc.ca

Thank you for reading and I'm sorry it's only a short post.  Please help this campaign in any way that you can.

Untangling the wires: Powermat review and giveaway

The Powermat parcel had been sitting on my desk for several weeks looking accusingly at me, and the lovely PR girl who sent it must be getting impatient, but I have been very busy.

Now summer is here and Smiley and aspie boy are at summer camp.  This means no homework battles for a few weeks, and a spare hour or two, so it was time for some unboxing.  Beautifully packaged, the parcel contained an assortment of boxes.  Like a lego kit with lots of little pieces that fit neatly together.

The idea of the Powermat is to reduce the clutter and tangled cables and wires that now feature in so many of our homes, especially from all those chargers.  It is also energy-efficient, as the Powermat senses when your phone or whatever is fully charged and immediately stops the power, a feature I really liked.

The Powermat itself is sleek and discreet, so I was delighted when I saw it.  But not so much when I realised that becoming wire-free could involve a fair bit of work from me!  The rest of the unboxing went like this:

11.30 am: I sit down with a cup of coffee and unpack the big box, which contains 3 little boxes.

11.35 am - I read through the booklet.  Clearly I need more coffee, *goes off to make some*.

11.45 am - Finally I realise that the oblong bit of plastic is a 'plug', but not an UK/Irish compatible one, which is why it has to be plugged into something else (in another box).

12.00 pm Success!  I have managed to get one device charging - aspie boy's DS.  So I have replaced one charger with a Powermat, a power cube on the Powermat, another lead and a special tip to connect it to the DS.



Hmmm, this doesn't really work for me.  To be fair, if your phone and other devices can be charged directly on the Powermat, this could be a neat solution and it would make a smart desk accessory. 


My Powermat is barely used - some boxes are still unopened - so I'm offering it as a giveaway to someone in the Dublin area.  Just get in touch and I will pick a name out of a hat, if you want to leave a comment somewhere, even better :) 

One positive outcome is that I realised that this family only charges about four items regularly.  Each of us has our own special place for charging stuff, and actually we quite like our little routines...

Looking after your back: a guest post for SWAN UK

My back is in bits and it's partly my fault.  I'm too optimistic at times and still think I'm indestructible.  I don't want other carers of children with disabilities to make the mistakes that I made.  So this was the theme - based on a previous post - that I chose for a guest blog for SWAN UK (Syndromes Without A Name), a project run by Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions.  If your child is undiagnosed you will find great support at SWAN and they have a thriving Facebook page as well.

Thank you SWAN UK for this opportunity.

Not a boring week

....Partaaay night....

It all started on Saturday when I headed out to an 80s disco night in aid of Assistance Dogs for Autism with some of the gang from the autie facebook group.  Dressing up was no problem as my favourite 80s clothes and accessories are kept up in the attic - they're 'vintage' now, so Angel borrows them!  I did consider posting up a few photos showing the leg warmers,  fingerless gloves, a fabulous mullet wig and acres of denim, but perhaps they're safer left on Facebook...

Sunday was spent recovering, mainly from lack of sleep.  And the only pain I could feel was in my back and my knees.

....Treatment....

Tuesday morning was spent baking a batch of chocolate cakes - my way of saying thank you to all the people who help me.  Then I headed out to get some treatment.  It turns out that my back is not too bad this time, but I really need more equipment to help me manage Smiley, and because it will be built into the house, I can't get it until my final separation agreement comes through.   

As for my other problem, well it turns out that I have housemaid's knee.  And please don't laugh all of you who know how rarely I can be found scrubbing floors.  I'd say it's another consequence of the physical effort required to look after Smiley.  Of course the cure involves rest - what's that? - as well as regular iceing to add to my 30 minutes of back exercises a day.  What is going to give?  Well this condition is also known as runner's knee, so no more running for me for now, which will enable my middle-aged spread to spread further.

....Travelling and protesting....

I excelled myself on Wednesday: after waving aspie boy off to summer camp Smiley and I headed off on a 140 mile round trip to a car dealer in Athlone to look at wheelchair accessible vehicles.  They're lovely helpful people but it was depressing.   They look at me as though I'm mad when I start asking about bhp.   We got back just in time to squeeze in lunch and toileting for Smiley before heading to the Dail to protest about proposed cutbacks to special needs education.  It was very hot and Smiley was not impressed when she realised that it was not a shopping trip.  But it was good to see friends and familiar faces there and the politicians seemed to be taking it seriously - some gave speeches in support and others talked to the families who attended, including us.  



 ....Lots of chocolate....

Thursday's highlight was a trip to a chocolate factory with Smiley and friends and family from the Rainbow Junior Arch Club.  We all learned something new about how chocolate is made, enjoyed lots and lots of samples and got to decorate our own teddies.  Definitely to be recommended.



A spare chocolate teddy bear was found for aspie boy, but he didn't want it: it was 'contaminated' after being decorated with white chocolate.  Someone had to eat it though and you know how good chocolate is for stress...in my defence it's not all gone yet... 

The trip was open to siblings, so aspie boy was invited. He said no of course, as he refuses to have anything to do with the club now.  Just before the trip the school rang to say he'd been hurt during some horseplay but was fine now.  When I got home he did not appear to be fine.  But this is a boy who asks for a plaster and magic cream over every spot and cut, who demands Nurofen for every ache and pain and complains bitterly about how unfair it is that he hurts himself every day - ie when he stubs his toe.

So I didn't know what to think.  But I watched him very closely overnight and surprise, surprise there's not a bother on him now...

....Harry Potter....

Three of us had been waiting for years for this day.  We were determined to get a really early viewing of the final Harry Potter film, so I booked tickets as soon as they became available.  The 10.30am viewing was perfect because Smiley was in summer camp and I could just take aspie boy out for the day.

But then he started to get anxious.  

He stopped going to the cinema last summer after being terrified by one of the trailers shown before a children's film.  And even though I offered to wait outside with him until the film started, he decided on the morning not to go, and went to summer camp instead. So it was just myself and Angel, which was lovely, especially as it rarely happens now.

And there were two more bits of good news... 

To go on chocolate factory trip I had to collect Smiley from summer camp, so before we left I put her on the toilet, to the surprise of the staff who had simply been changing her: her toileting programme was abandoned by the school some time ago due to time pressure as a result of cutbacks and changes, and I will blog about that soon.  Anyway an SNA came with me to the bathroom. She watched amazed as I placed a delighted Smiley directly on the toilet.  

This clearly made an impression because her home copy had this sentence in it today:
 
1 x BM in the toilet

I can't tell you how delighted I was to read that, and I'm just hoping that they keep putting her on the toilet.

Finally on Friday someone very close to me got the good news that the lesion that had been removed from her back in a hurry was completely benign, Phew!

I'm hoping next week will be a bit quieter, though that means more cleaning...

Not a sponsored post

From the sublime to the ridiculous

*Self-indulgent post warning*

My first car was a 1972 blue metallic Ford Capri, with a black vinyl roof and Rostyle wheels - I still remember every detail!

My next car could well be a Citroen Berlingo.  Otherwise known as a Granny car...



Yes it's very wheelchair accessible, good value, economical, will cost me nothing to buy as the dealer I visited today will take my existing car and just do a swap, and I'm sure that lots of families think they are fab.  But as a car lover I am mortified.  The dark glasses and loud music will be a permanent fixture from now on I think...



Blibbering Humdingers it's Harry Potter!

In this house we're potty about Potter.  The countdown to the release of the last Potter film started months ago...and discussing who would go and when.  Yesterday afternoon the excitement was building as Angel and aspie boy watched the live coverage of all the stars arriving at the premiere.  There were tears later from an inconsolable aspie boy who thinks he is losing his Hogwarts 'friends'.  Last night I was frantically checking the cinema listings for next week, until I'd safely booked 3 tickets for the first show on the first day.  It's perfect: Smiley will be at summer camp and if aspie boy cannot overcome his fear of ads (don't ask) then I can drop him off at his one too!

It really is the end of an era.  Like so many other families the Rowling Reading programme worked wonders.  Angel read almost nothing until she picked up her first Harry Potter book and she hasn't stopped reading them - and a few other things - since.  



Now it looks as though they will work the same magic for aspie boy who has been promised a trip to Harry Potter land if he reads all the books first....

I have been known to read them too....in fact I had to buy two copies each time a new one came out as neither myself or Angel was willing to wait.   Yes, we all have problems with deferred gratification in this house.  The spare book would then be donated to the school library.  No waste allowed.

Pottermania became a feature of our lives, especially for Angel.  She wanted the costumes, the lotions and potions - and made her own under the stairs in her den with her friends - the Barry Trotter books and all the DVDs as soon as they came out too.   She got to go to some of the Dublin film premieres and posed as Hermione for press pictures (she has the hair).  I nearly posted one up, but they were pre-orthodontic treatment - which Hermione obviously got from her dentist parents - so she'd not be best pleased.

Next Friday she will be watching the film two times: in the morning with her family and in the evening with her friends in full costume.  It's going to be an emotional day!


Compromise, confusion and a dash of aspie anxiety

This is a Smörgåsbord post.  Our latest trip to Wales to see my family had so many themes and undercurrents that I can't categorise it.  But at the heart of this visit was the chance to see my Dad again.  His health is not that good, but our relationship is.  My laptop remained closed most of the time and we spent the evenings talking about our favourite subjects: politics, economics, society and our family, with a bottle of red for company.  The only thing missing was an old-fashioned veranda and a couple of rocking chairs.

It nearly didn't happen: the trip that is.  What with my Dad having bad days and aspie boy being difficult about everything as the school term was ending and he doesn't like change, even when that means no homework for two months.  Yet he didn't want to miss the last day of school (a party) or the first day of summer camp (anxiety).  So I booked the first ferry out on Thursday afternoon and the last one back on Sunday night.  But I was tired...and somehow a mistake was made.  When we turned up at Dublin Port and I presented the ticket to the man in the hut (what is the technical name for these people anyway?) he said:

"So you just have two adults then?"  As he looked pointedly at Smiley and aspie boy in the back....Angel being one of the adults. 

It seems that I *may* have forgotten the children.  Luckily he just added the names, at no charge, perhaps because we are regular travellers.  I wonder how certain airlines would have dealt with that?

The drama continued...of course!  The wine and conversation really helped my Dad to relax and he slept like a baby, but I was not so lucky.  Rewind to Thursday lunchtime when Angel and aspie boy were watching telly - I thought they were bonding.  But apparently this show featured these supernatural monster things that come into children's bedrooms while they are asleep and suck out their talents. So guess what happened at bed time?

"Don't leave me alone Mammy!  You need to watch over me!"

No matter how many times I explained that it was just a TV programme he kept saying with impeccable aspie logic:

"But anything is possible!" and I bet I was the one who said that to him first...

Since she was partly responsible Angel agreed to stay with him for the first night until he went to sleep.   Problem solved I thought.....until he woke up at 2 am to use the bathroom and then demanded that I stay awake for the rest of the night to watch over him.  It took a long time to sort that one out. 

On the Friday there was a mass family meal complete with one son going AWOL and one chair collapsing - my Dad's, so we all got a fright, but luckily no lasting harm was done.  I also got to escape for a run over the fields.



On Saturday we headed up into the Welsh hills to spend the afternoon at my brother's house.  We wandered around the village, where half the shops still close for the weekend at lunchtime.... but I was able to buy a bag of goodies to put an even bigger smile on Smiley's face.


And aspie boy's cousin got him back on a bicycle for the first time this year.  I was sooo delighted. 


Good company and a break from cooking and cleaning means I'm feeling relaxed three days later, even though I still have to watch over aspie boy as he sleeps....

If interns work for free, who will be next?

There were shocked whispers in the office when we first heard.  It was less than ten years ago and the word was that some PR consultancies were taking on young graduates and not paying them.  We couldn't believe it.  In the company that I worked for the policy was clear: everyone who worked there - even for a short time -  was paid.

So I think that unpaid internships are a recent phenomenon, at least in Ireland, yet already there is a drive to normalise the idea that young and not so young people should not be paid for working.  I wonder if those offering unpaid internships also agree with the view that people don't value what they get for FREE.  One of the basics tenets of capitalism I believe...

This should surely apply to labour too.  If you're not paying your employees, why would you value them?  Why would you bother giving them meaningful work?  Why would you care what work they did at all - if any?   Most people have heard anecdotal stories of interns being told to walk the MD's dog and the like.  Can you imagine the effect this must have on the self-esteem of a 21 year old who has just spent 15 years or so studying in the expectation of an enjoyable career?  And the sad thing is that interns can be a huge asset to any firm: I always enjoyed the chance to work with them.  Mostly, they were enthusiastic and had great ideas.  In PR it was easy - you just gave them a project and supervised their work.  And I loved their delight when they saw coverage in a newspaper of a press release that they had drafted :)

And how do employers regard unpaid interns?  Why would they be impressed that your skills, enthusiasm, determination and abilities were worth absolutely nothing, when they see on your CV that your only employment was not paid?

I think there is a role for internships with nominal pay as part of a college course or training programme.  But a job is a job and should attract a proper rate of pay.

I left college in the dark days of the early-1980s, but there is no way that I would have worked - except in a voluntary capacity - for no pay.  In my first job the basic pay was good and there was paid overtime, premium pay on Sundays, annual increments and an excellent pension scheme.  Oh and the company made a profit.  But now it seems that some graduates, school leavers and even mature adults are expected to work for nothing.  So what has changed? Are today's young people less well-educated and less employable than my generation?   That's certainly not the message that the Irish Government promotes overseas when it is trying to attract foreign investment.

The most frightening part of this is wondering how far the no-pay culture will be extended?  For now, it is just interns, but who will be next?

International Handstand Day



Did you know that last Sunday was international handstand day?

No, me neither.  

And only for Angel I would never have known.  Which is sad, because I recently discovered that many children cannot do handstands, or cartwheels or tumbles.  To me, they're as much a part of childhood as jumping in puddles and playing tag.  But the average kid no longer has these skills it seems.  I think they're missing out.

In this house even aspie boy will make an effort to practice basic gymnastics, egged on by his big sister of course!  Being upside down has always been her thing.  Especially after meals, which used to worry me no end, but nothing bad ever happened and I've now learned to trust that she knows what works for her.  And one of my proudest Mammy moments was the gasps from other parents when Angel walked across the stage on her hands at her primary school leaving event.

Do your kids do handstands or is it now only gymnasts who have these skills?