Talking without words

Words, real words.  I've been waiting for 13 years to hear Smiley say some real words.  And I just can't give up, because more than anything I want to have a real conversation with her.   She does 'talk' and communicate, just not using words.

When she was little I tried every pre-speech exercise I could find with her:

She learned to blow little pieces of tissue paper off my hand.

She can now use a straw to give herself a drink because I kept squeezing cartons of juice into her mouth until she got the idea.

I gave her different tastes, and tried to help her to form different sounds.

I praised every effort that she made.

She learned about turn taking and looked at flash cards. 

She makes choices every day.  She chooses new clothes, which DVD to watch or toy to play with, and even the colour of any new equipment.  Photographs and pictures are used to give her choices, and to let her know what is happening next.

Most of all, I always try to answer her when she vocalises.

Through her school, she learned to use a Big Mack - a giant switch attached to a tape recorder so she can play messages with news from home and school: It gives her a voice of sorts.

She now has a whole set of different sounds and actions that indicate her needs, and a communication book which explains all of them.  This goes with her everywhere.   Next I hope to get an iPad, which will give her even more opportunities to communicate and hopefully the chance to play some computer games!

But I still want her to talk.

There are two memories that haunt me:

The first time I saw a group of children with severe disabilities.  They were silent, dull-eyed and withdrawn; as though they had given up on life, and lost hope that anyone would ever be interested in them.  No way was Smiley going to end up like that.

Even worse was the visit to a service that was offering a place to Smiley.   It was in the grounds of a huge complex, but the building for the children with severe disabilities was hidden away at the back of the site.  Not like the bright shiny school, which my daughter was not allowed to attend.  This service did not then provide any teachers for children like Smiley, despite her Constitutional right to an education.  

I so clearly remember being ushered into this grey room.  About six small children could be seen, some in standers, others in chairs, one reclining on a mattress.  One was holding a rattle, the others had no toys.  Mostly they were staring into space.  Three staff were talking and filling in forms in one corner of the room.  I went over to one of the children to say hello, I picked up a toy that was on the floor and asked if he would like it.  He made a sound, so I gave it to him.  

It was then that I heard it:  very indistinctly, but definitely there: "Thank you," he said.

  

"He's talking!"  

"Oh yes, he can a bit," said a bored-sounding adult from the corner.  

I actually wanted to thump her.  If Smiley had even one word, I would be working with her night and day to get more.  I just felt desperately sad for these children.  Were the staff not interested in them at all?  And why were they not trying to impress me?  After all I was there  to see what I thought of the service.

I soon found out why.   I was told that this was the only thing available (not true as it turned out).  It was implied that I should be grateful for anything I was offered.  As though I desperately wanted to be relieved of my child.

"Sure, where else would you send her?" was the response from the (now very senior and doubtless well-paid ) manager at this service when I politely expressed doubts about its suitability for my lively inquisitive daughter. 

Later I discovered that there were some very dedicated staff in that unit: I had to send Smiley there for a while after CD was born because he was a very demanding baby and I could not give her the time that she needed.  But after that visit I vowed that I would find somewhere suitable for her, no matter what I had to do.   And I did.

She's still not talking, but maybe she will one day.  I'm still hoping.

Treasure in the Attic

When I moved house last week, I was naturally hoping that I would find treasure in the attic.  Something valuable that I'd forgotten about.  Just to tide me over you understand until I win the lotto.  No such luck.  But I did find this random collection of bits and pieces ...  They're not entirely useless though:

The clothes I adored from the 1980s, including a real RaRa skirt *hides head in shame*  Now they count as vintage, so Angel borrows them.

All my Valentines cards: this is a very small collection. 

My first novel.  Well actually it's my only novel.  And after two years and about 40 pages, I lost interest.  I was only 10.

A recorder.  Unbroken.

My Hacienda membership card.  

A box of my Mum's favorite recipes.  I keep saying I'll try them one day in her memory.  Anyone for gingerbread? 

Angel's first rattle

A real playpen from the 1960s.  It's wooden.  It's huge.  And I'm hoping that my grandchildren will be the third generation to abuse use it.

Four little wooden elephants from my one big overseas adventure: maxing out my credit card on a trip to Sri Lanka.  As a student, this was obviously a very irresponsible thing to do.  I put myself in debt for years and nearly failed my exams, but you just have to do these things :)  It was absolutely worth it.

Oh and about 500 spare coat hangers, mostly plastic, pink and age 2-3.  But they will have to go...

Note to self: next time if you can't find half the pc, do not bother taking a picture of a picture, no matter how cute.  It does not work.

Home at last: with a little help from my friends

In the end it happened very suddenly. On Wednesday morning I saw Smiley off to summer camp as usual and sat in the kitchen wondering would RH turn up to discuss the move. He arrived, and raised yet another dilemma. By 9.30 am we had the answer: to move house, today. So I did. And 12 hours later, with the help of a team of friends and family, it was all done, lock, stock and a thousand bin bags full of stuff.

Where have we moved to? Well after four eventful years, we've come home. And RH is living in a house nearby. I really never thought that this would happen. After my separation, the family home was to be sold, but then there was the small matter of the property market crash. And this house was converted for Smiley's needs ten years ago, so it seemed like a good idea to move back in. Getting agreement on how was the hard bit.

Nor was I sure how we would all feel about going back. Angel was delighted from the start as she is much nearer to her school and all her friends. Smiley copes a lot better with change now, and she is already settling in well. CD? Well of course his Asperger's meant that he made everything as difficult as possible, and was sooo opposed to the move that I wavered a few times. I was also feeling uncertain about the whole idea as the family home was not a haven during my marriage breakdown. 

When I went to see it last weekend, I started to feel better. It is a beautiful house. But what is that tree outside the kitchen window? Four years ago that was just a little shrub. And were Angel and her friends once so small that they could squeeze into the tiny cupboard under the stairs? It was still furnished as her den, with potions and posters and pens strewn all over the floor.

During our visit, CD just wandered in and plonked himself on a sofa in the living room and got stuck into his DS. He even consented to climb the stairs to the attic room and agreed that this would be the perfect place to put up his telescope. On moving day, I left him with one of my wonderful friends after frantically ringing round to see who was free. But then I had to work out how to avoid the mother of all meltdowns when he realised that he was going home to a different address.....In the old house CD had more or less adopted the living room as his personal fiefdom: he would have slept there as well if I had let him! The solution? I replicated this room here, so that when Angel and her team of friends helpers fetched him, we were just able to walk him in, sit him down, hand him his controllers and he barely knew he'd moved. There have been more tantrums and demands to go back to the other house, but the gaps between them are getting bigger *relieved sigh*.

As for me? Well until this morning I have rarely been alone: once again family and friends have rallied round and arrived on the doorstep bearing gifts: bleach, hammers and paintbrushes. Having 'a lot on your plate' has its advantages at times......and I've learned to say yes to (almost) everyone who offers to help. I can't believe how happy I am to be back, and how peaceful and lovely it is here. It just shows that even after the most bitter marriage breakdowns, things can turn out well in the end.

It's good to be home.

The Best Week Ever

I had a horrible week. I never ever want to move house again: and I still haven't moved in, we're 'in the process'. The move was on, then off, then on, and is now hopefully happening next week. Angel vanished into the Oxegen rainclouds on Thursday, so, apart from Smiley, there was only one person to keep me together: CD. And he played a blinder. We've had five fabulous days. Not one meltdown, not one swear word, no arguments, and no self-pity. He won't admit it, but he's happy :)

So what, you might say, it's the summer holidays, of course he's happy. Er no, it doesn't work like that in this house. His behaviour was appalling for the first four days. Presumably, for a child with Aspergers, the change in routine is very difficult, even when that child claims to 'hate' school. It was a daily struggle to get him to put down the game consoles and do something, anything else. The few boys in this estate who still play with him have all gone for the summer, so he is completely alone.

It's not the first time he's been to summer camp, but up to now they have been more about endurance than fun: something he had to do so I could work. This time it was very different. Instead of the usual sports and games, CD's summer camp was on web design and astronomy.

It could have started better: "Can I quit if I don't like it?" asked CD as he headed into the College lecture hall, a very formal setting for a 9-year old. My heart sank. He can be so negative at times. Somehow I managed to say nothing and left as quickly as I could. I kept the mobile close by me that first morning, expecting a call at any moment to bring him home. Much to my delight the phone did not ring.

Three and a half hours later, he skipped out, another boy in tow. On the way home I learned about the Big Bang theory, the giant rings around Saturn and how evolution works. He did tell me that most of the children were cleverer than him, as they knew a lot more more about astronomy. I explained that cleverness is not about how much you know, that's knowledge. Cleverness is about how you apply your knowledge and the connections you make. So he was delighted then. He has learned that his interests do not make him a freak - there are other children like him. He is walking taller.

He even made a new friend.

And once again it was thanks to the Irish Autism Facebook Group, which has just welcomed its 700th member. They suggested this, and it just shows how powerful is the advice and information from other parents. I may have had a bad week, but for CD?

It was the Best. Week. Ever.

Carry on Camping

Santa bought the tickets. Of course they didn't arrive. So there was a last minute panic this week trying to get them. Lists have been made. A tent was purchased, and the girls have organised practice sessions to make sure that they can put it up in the dark after a few beers...I'm trying to be realistic here...

A trip to Tesco is on the agenda with the essential camper's survival kit as compiled by 17 year olds:

Tinned spaghetti hoops (ring-pull)
Crisps
Coke

And a few slightly more sensible items:

Baby wipes
Hand sanitizer
Toilet roll

I'd like to add fire extinguisher, panic button and stomach pump to that list. But perhaps I'm worrying too much?

There was a mass raid on Penneys, and the gang returned with raingear, wellies and other Festival 'essentials.'

By now you've probably guessed.....my baby girl, aka Angel, is off to the drink music fest that is Oxegen. For the first time. And she's going tomorrow.

It seems like only yesterday that she was singing 'S*x on the Beach' at the top of her (5 year old) voice. Now I'm worried that she'll be doing more than just singing a silly song from the '90s by the Vengaboys. Can't find a video of it either that I think you'd all like to watch. Funny that.

Anyway Angel and her friends are a great bunch, but they are teenagers. And this will be their first break with absolutely no supervision. Pity they're not into something a bit less scary, like clay pigeon shooting. We've had the chat about sticking with your friends, minding your drink and lashing on the sunscreen. I could lecture her from now until she leaves and not cover every possibility. And she'd probably hate me for it. So does anyone have any last minute tips for a worried Mammy and an excited 17 year old off to her first music festival?

Moving Madness

The whistle has blown.  And we're off.  The move has been agreed, and on a date yet to be fixed (just to add to my stress levels) we will be packing up and heading for somewhere wheelchair-friendly.  It's like a kind of madness, there's boxes and piles of random stuff all over the house, lists lying on every surface, phones ringing, and I'm running round fuelled by coffee and panic.  Arranging broadband for the new place is my top priority, but there's a good chance that I may be absent from this blog for a wee while.  The girls are delighted or in blissful ignorance of the move, but CD says he is staying put...or else!  So wish me luck.