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 looked very like this:

By digitalFRANCE

My next car could well look like this:

 

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...