Autism and feeling isolated

Well Christmas is now over.  We did well, but now reality is biting again.  Either I stop blogging altogether or I try to write about what is going on here without being explicit.  Because there is nothing else.   Our lives have mostly shrunk to these four walls, which means that there is very little of interest to write about, and autism is the one thing that dominates all our lives.

What happened two days before Christmas I cannot tell you, but it has left us all traumatised.  Apart from a handful of friends and a promise of help from Irish Autism Action, most suggestions from professionals and others have all involved doing things to my son to control or compel him, or sending him away.

The school system appears to be a large part of the problem - it has certainly affected his self-esteem very badly indeed.  So I plan to set up a more formal meeting with his current school at the start of the new term to see if a plan can be put in place to support him, before everything slides again.  The saddest part of it is that on a good day, he 'likes' school and loves learning.  I don't see how home education is going to be an option, given that I have no spare time now (I'm writing this between mouthfuls - mine and Smiley's - once again), but apparently the State will provide him with a tutor if he gets expelled!  Not a great option then.  I'm also looking at other schools and a request on twitter and Facebook resulted in a huge list of recommended schools for me to investigate.  Thank you to everyone who helped with that.  All I'm looking for is one where he would be accepted just as he is, and helped to become who he can be.  Does a school like that exist in Ireland?  I'm not sure yet.



But most of all, I cannot do this alone.  

Just telling me to love him and everything will be okay is not enough.  I need practical advice.  So if you have any, please do not hold back.

Note:  I know I have been very tardy in replying to comments on my last post, I promise I will soon!

Thirteen dwarves and a glint of hope

Special needs have made things difficult again here for the last while.  As the days got shorter and darker, one depressing day seemed to follow another.  One crisis after another.  Each one more worrying than the last.  The situation at secondary school has got worse, and plans to spend Christmas in Wales with my family had to be cancelled.



But there is a glint of hope.  One thing did go right in the past month.

All year we'd been talking about it.  But even so, I did not know if I would be going to see The Hobbit with one child or two, until the day itself.

But on Tuesday 17th December three of us saw the film.  My son has rarely been to the cinema for the past few years, and it was a big step for him to tag along with myself and Angel, and sit through the entire thing, and enjoy it!

It has also been the start of something.  Middle-earth has become a place of escape for all three of us now when the going gets tough.  The books have been dug out of the bookcases and I found out that I was right - Bilbo's conversation with Smaug is the only part of the second film that is the same as the book...  Angel is finally reading The Lord of the Rings, and I discovered that we now have two copies of everything, so I can reread it too.

We're watching the films as well, especially on Christmas Day. With my son this means lots of pauses to point out continuity errors and other points of interest. With my daughter it's all about elvish tattoos and which character you'd like to be (Éowyn in my case...).

It was very different to the Christmases we used to have. There were no visitors, and a choice of roast chicken or hotdogs for dinner, and despite not following most of the advice from family, friends and professionals (sorry guys, I hope you'll forgive me), but everyone was calm and happy, and that's the most important thing right?

And call me simple, but I still find the story of The Lord of the Rings inspiring when life gets tough. Okay so some people might find it a little odd taking comfort from the words of an old man with a pointy hat and a way with fireworks, and a motley crew of mythical companions, but there you go. If it works, it works.

So it was thanks to Professor Tolkien we haven't been bored, and we now have a glimmer of hope. And that's the best that I can hope for right now. So long, Hobbit-lovers!

Linking this up with Reasons to be Cheerful, currently hosted by Ojo's World.


Top 5 Personal Achievements of 2013

You may have noticed a trend on the blog lately.  Lots of 'Reasons to be Cheerful' posts and a few happy posts about Smiley.  And that's about it.  Because I promised not to write about the one thing that is on my mind all the time.  There's no room for anything else, so I cannot write.  But I can still have fun with my blog.  And that's why I'm joining in with Listography, my other favourite linky.  This week it's all about personal achievements in 2013, and while they are not all entirely positive, it's been a good exercise to do!



No 1: Admitting I needed help.


Because I find it difficult!  I felt so low, but the optimist in me kept thinking that something would happen, and everything would be alright again.  But it didn't.  It still isn't, but at least other people know and I am getting help for myself and my family.

No 2: Getting off Social Welfare


Thanks to my job and couple of other things coming right, I am no longer claiming carers' allowance, and I am very happy about that!  I loathed being on a means-tested benefit.  No more having to write to social welfare with every last financial detail of my life, and no more letters back to tell me that I am ' entitled to a reduction' in the small amount of money that the State was giving to me in recognition of my caring duties.

I am all in favour of universal benefits though, and was delighted to read that Carers UK has now started a campaign to provide a statutory allowance for all carers.

No 3: Blog Awards Ireland


So delighted to be a finalist for the second year in a row, and the awards ceremony was possibly the best night out of the year so far.

No 4: Going for a Gastroscopy


Without sedation.  This is where you have to swallow a tube so that they can look in your stomach, so it was a challenge.  But I coped, and I was very proud of myself afterwards, and very happy that nothing was found.  I'd do it again too.

No 5:


I'm leaving this one blank as I hope to have something bit to report after Christmas, and you'll just have to pop back here to find out...


I like driving in my... (wheelchair)

Walking has become a problem for Smiley.  Despite all the hope two years ago, when I got her back in her new walker, it has just not worked out.

But she loves to move, and she loves a bit of independence, and the opportunity to do her own thing.  So to see these photos in her home/school copy today of Smiley trying out the new school AKKA were just an absolute joy!


Just to explain:   The AKKA is an electronically controlled mobile base which uses photo-electric sensors to follows a predetermined route and the wheelchair user can control the movement using a switch - Smiley has a big yellow one.


Reasons to be Cheerful 12.12.13

Between a sprained ankle and trip to A&E, I have - again - not been feeling particularly festive or joyful for the past week.

But some good things have happened, so there are some reasons to be cheerful...

New Doors


Smiley's room used to be a playroom off the kitchen.  She's using it as a bedroom now, so obviously it needs a door or two.  But I didn't want to block off the room in the daytime, and it took ages and the help of Jazzygal to find a company that would make a pair of good value bespoke sliding doors that would be invisible most of the time, but block off the room at night and when she needs privacy.

They were finally installed this week and I took great pleasure in crossing that item off my to do list!

The Hobbit


It officially opens tomorrow, and all going well, myself and TWO of my children will be going to see it, now that we have found a 2D showing.  Yep, aspie boy says he is going to the cinema with us, if that works out, I will be very happy.

Still on the subject of The Hobbit, I discovered something new on twitter a couple of days ago after innocently sticking a #LOTR on the end of the retweet, only to find it featuring later in something called Middle Earth Times.

As a Tolkien-head I may never be bored again...

A Bottle of Baileys


Well the cheap Lidl version anyway (and I've opened it)

Christmas


Enforced sitting down with a swollen and bruised ankle meant lots of times for Christmas-card writing and on-line shopping.  I *think* that everything is done.  Including the decorations, courtesy of Angel and aspie boy.

The relief is great!


Ojos World





In which I discover that health and safety only matters in the workplace


I was walking through the park, minding my own business, as you do, when all of a sudden my world turned up side down.  Literally.  I'd put my foot on the side of a pavement pothole, there was a sickening crunch and my ankle turned right over. So did I, and a spilt second letter I found myself staring up at the sky with a searing pain in my ankle.

And what was my first thought?  How on earth am I going to manage Smiley and the hoist?

I may have made some kind of unhappy sound because a face blocked out the sky and asked if I was alright, and luckily I had the sense to say 'no'.  My Good Samaritan helped me to my feet, I mumbled a brief  thank you and he left me clinging onto the railings...

I wish I could've been a wee bit flirty or something -  it could've been the start of beautiful friendship, who knows?

Anyway, I was able to hobble home, dig out the crutches and crash on the sofa with an ice-pack.  My Facebook friends rolled round and offered help with cooking, cleaning and shopping.

Once I'd got over the initial shock I got on the phone, because I assumed that despite the cutbacks there would be some help in a crisis like this.

Wrong.

Less than 10 years ago I could have rung Smiley's school - still part residential then - and asked them to keep her overnight.  I rang the new service provider and I was offered a respite cancellation for this Thursday, which I have taken, but nothing for the day I needed it.   Not even advice as to where I could get help.

Or I could've spoken to the district nurse - they are always good in a crisis.  Yesterday I was not allowed to speak with her without a referral from my GP.  I organised this by fax, but did not get a phone call until 24 hours later.  When she rang, she was very helpful and told me what I should have done.  No-one told me on the day.

So back to Monday afternoon.  It was me, a pair of crutches and a severely disabled girl.  Now everything did get done, with the help of my other kids, but there were a few scary moments, and I did fall over Smiley once, but she wasn't hurt.

As a special needs mum I expect to face challenges, but not that our lives will be unsafe or humiliating - you want to try crawling on the floor pulling your daughter inch by inch on a mat from the bathroom to her bedroom, because it's the only way you can manage?

Luckily it wasn't a bad sprain and I was able to hobble around without the crutches the next day.

But I still feel let down.  And then a friend in the know explained that health and safety only matters in the workplace, not in the home, even if you're a carer.


Silent Sunday 7.12.13






How to get ready for a Christmas party in 10 minutes

With the festive season approaching, you may be planning on attending a few parties, and I was reading a lovely blog this morning with some really good tips for getting ready when you don't feel like bothering.

But for those of you who find yourself knee deep in nappies with 15 minutes to go, I'm going to let you in on my beauty secrets.

So this is a *slightly* tongue in cheek guide to getting ready for a Christmas Party in just 10 minutes…..

It does involve some advance planning:

Shower


In the morning, just in case of last minute child- related interruptions.

Hair


If it's high maintenance like mine, you might need to got to the hairdresser while the little darlings are in school, or attack it with a GHD on the morning and avoid drizzle thereafter....

Nails


I do try and remember to cut my nails.  But I know some of you actually like to paint them, so you might want to do this earlier too.

This is what you will need for your ten minute plan:

Baby Wipes - the ultimate solution for freshening up in a hurry.  Just remember the deodorant too. 1 minute.

Contact Lenses - you don't need them?  Lucky you, knock three minutes off the getting ready time.

Boots - dressy ones obviously, then no need for leg shaving. 1 minute.

A dress with sleeves - even less shaving required and no need to worry about those bingo wings. 30 seconds.

Spanx - no need for advance dieting either.  See how easy I'm making this?  30 seconds.

Make Up - I do like to wear a bit of makeup, but if I'm pushed for time, I just stick on a bit of powder, kohl and mascara.   Another five minutes and you might see me with real foundation, blusher and maybe even eye shadow as well….  2 minutes

Toothbrush - pretty essential even if I do say so myself.  1 minute.

Sparkly Earrings - personally I don't feel dressed without them.  And obviously perfume and lippie if they're your thing. 30 seconds.

Evening Bag - mine is half packed at all times, with lip gloss, tissues and spare kohl, so all I need to add is money, keys and a phone.  30 seconds.

Then kiss the kids, wave goodbye to the babysitter, jump in the taxi, and have a fabulous night!

That's not so hard, is it?

And it does work!  See here and here.  Although one or both of these looks *may* have involved slightly more time...

Happy Christmas!




Blue Velvet, Toy Boys and Reasons to be Cheerful

This week it's all about friends.  Well actually I'm celebrating the social whirl - special needs style -  that has kept me busy since I last posted up my Reasons to be Cheerful in mid-November….How did that happen?

Since them I have spent time with friends from every era of my life, right back to my teen years in school.  Thanks to the internet I'm more connected with those friends I used to hang out with years ago than ever before and sometimes they actually come over to visit!

This lovely lady and I have been friends since we
met at work in the early 1980s
The previous week I spent a few days with one of those special friends from my crazy teenage years.  Both friends brought their husbands and I spent a couple of happy days in Dublin exploring all the touristy places that I normally forget to visit.

I also managed to squeeze in coffee with Jazzygal, a trip to Newry with one of my autie mum friends and a night at the cinema with my eldest daughter.

Oh yes, I nearly forgot: there was also the Autism Mommies Christmas Party

You wanted to see the dress, right?  Weeeeell, I still love it cos it's so comfy and low key and just right for me.....but it doesn't look so great in the photos.

Some of the autism mums at the Christmas Party
It was a recipe for an almost perfect Christmas party.

It had all the right ingredients:

...Great clothes
...Fab company
...Feeling like part of a community
...Food cooked by someone else
...A drink or many, depending on whether you were driving home or not.
...A bit of dancing.

And the method worked pretty well too:

Mix all the ingredients together thoroughly, season with a few surprises and serve!

The surprises

A wonderful autism themed goody bag
Chocolate for comfort, mints for fresh breath, a charm bracelet to put a smile on your face and a couple of bath bombs for a bit of relaxation after all that dancing.  No they weren't fizzy sweets, and I glad that someone else tested that theory before I made the same mistake…

Now the other surprise was that the goody bags were given out by some very young men wearing very little, to the delight of most of the women there!  I was quite happy to let the other Mums enjoy their company though.

So apart from the scary toy boys, and one missing friend, it was almost the perfect Christmas party, and a great reason to be cheerful!

Ojos World

Reasons to be Cheerful is currently being hosted over at Ojo's World who also writes about special needs.


Perhaps secondary school and aspergers just don't mix?

(Published with permission)

Because we're in trouble again. The move to secondary school went really well at first. Academically he was flying, and he seemed to be coping with everything else too.   But then things started to slide.  He would get annoyed in school by something or someone, but would be unable to explain what was wrong before getting into trouble.  Later in the day when he'd calmed down at home, I would usually get the whole story.

Now he really is struggling.  And what does the school do?

Punish first, and ask questions later.

Or perhaps they don't ask the right questions at the right time. 

And I know I'm a 'soft' parent, but I just don't think that this approach works.  At least not for my son (and it didn't work for me as a child either).  With every punishment he gets angrier and more upset.   His self esteem is now at rock bottom, or so he says.  Now he's even finding it hard to get up for school in the morning.

What would help?

A rewards chart?  We have one, agreed between us.  He has only managed one daily reward in the past four weeks.

An IEP perhaps? Except they don't do them in this school - even though it is a recommended and supported school for teens with aspergers.  In fact IEPs are not actually mandatory in Ireland.

Should I have sent him to another school?  Well funnily enough, this was the only school that offered him a place - such a contrast to the cute pre-diagnosis four year old who received an offer from every school in the area.

Should I be supporting the school by punishing him even harder at harder at home? Is that what I'm supposed to do?
Plenty of people have suggested it.

Harsh discipline does not always result in obedience. Sometimes it just leads to despair.

I feel that I am living in a Hall of Mirrors, with everyone reflecting a different picture of what is going on, or give different advice.  My son tells me one thing, the school another.  Perhaps the truth is somewhere in the middle.

Those are good days when he says how much he likes school.  But the bad days are NOT GOOD AT ALL.   Today he feels sick and is in bed.  I think he may be sick of school.

More help has been promised beginnings next week from his service providers, but I'm so afraid that this will just muddy things further. Or maybe it will be another set of strategies that I will be expected to implement with my son to make sure that he can fit into the the school system, instead of it adapting to try and help him.

And yes I know the school offers some concessions to the students with aspergers, and gives lots of time to the parents and pupils to talk about their needs,

But there are two things that I have come to believe since becoming an autism parent.  I'm just not sure that everyone else agrees with me…










Listography - Top 5 Christmas Songs

So the countdown to Christmas begins. And hopefully it will take my mind off the other stuff!  What better way to celebrate than compiling a collection of my favourite Christmas songs -- the latest Listography, hosted this week by Plus 2.4.


A Good Old-Fashioned Christmas


Well I have to take the opportunity to support my musician friend Mikey Cooling who was involved in the making of this charity Christmas single - out now!




Stop the Cavalry


Just love the message of this one, and the tune has stuck in my head over the years.



Christmas Wrapping


Think you can't dance to a Christmas record - well you can to this one!



Fairytale of New York


No Christmas list would be complete without this classic from my favourite ever band!



Once in Royal David's City


Every childhood Christmas Eve, the BBC broadcast of carols from Kings College were the backdrop to all the preparations.  Sad and happy memories at the same time.


What are your favourites?