Family Tradition

I am always amused by how reliably The Great British public can be counted upon, to follow the unwritten rules of quirky tradition. We battle the gales for the New Year sales, despite having spent a small fortune at Christmas and on the first warm day of late Winter/early Spring we can be found parked bumper to bumper in the car parks of Garden centres across the land. During the summer we shiver on beaches whilst our kids turn blue in the sea and Dads across the land, struggle in vain in the rain with barbecues and soggy sausages on bank Holiday Mondays.

Here, however M has a rather lovely custom of his own. He marks off the run up to Christmas, by events such as the school disco, Halloween and Bonfire night. We queue for miles for a coffee, to warm our hands, at the local Firework display and wait for hours as the crowd traditionally turns up late and delays the start of the event.

M believes that Guy Fawkes night, heralds the official run up to Christmas and thinks that our house will somehow be transformed into a Christmas grotto, by the time we return home. Sadly, he is disappointed when he learns that Christmas is still a little way off but begins to ask how many sleeps until Christmas will finally arrive. So for M and for all of those who keep Christmas in their hearts, this website link is for you.

http://www.emailsanta.com/clock.html

Fighting Prejudice

This week two headlines caught my eye and I have been thinking about the way in which schools and society down play derogatory terms and remarks about disability. The first was the guardian article about Pierre Lellouche’s response to the Conservative Party’s about turn on European policy. Lellouche accused the shadow foreign secretary of “Bizarre Autism”

http://www.guardian.co.uk/politics/2009/nov/04/france-autistic-tories-castrated-uk?CMP=AFCYAH

There seems to be a worrying trend in the media, for the term Autism to be applied to people who are dogmatic, rigid or even just socially awkward. As a parent who has seen dozens of reports and questionnaires’ about my son’s social communication deficit, it angers me that the term autism, which after all relates to a spectrum of neurological disorders, can be devalued if not degraded in this way.


It is also worth stating that the context of his statement, indeed the whole point of his argument, was that the behaviour of the Tory party was socially unacceptable, and would understandably result in their exclusion from Europe. Now his comment is intended as a political one (whether we should be within Europe or not) but his statement may be seen to imply that he also considers it understandable that ‘autists’ be excluded from society due to their unacceptable behaviour. Nice!

The second article, by Ian Birell, calls for prejudice comments and hate crimes against the disabled, to be treated with the same gravity as those against race and religion.

http://www.independent.co.uk/opinion/commentators/ian-birrell-mind-your-language-words-can%20-cause-terrible-damage-1815641.html

Birell not only refers to Lellouche’s use of autism ‘as a form of political abuse’ but also lists quotes from actors and people in the music industry who routinely use terms such as ‘retard.’ As a parent of a child with ‘profound disability’ he has experienced the stares and derogatory comments for the general public. Similarly, those children with social communication and learning difficulties like M, are the daily target of verbal bullying.

Recently, during a sports club meeting the children were asked to find a partner. M ran from child to child desperately trying to find a partner, whilst they made derogatory comments and sneered. Are we doing enough to encourage our children to appreciate all children? after all, it would be taken very seriously (and rightly so) if a child was excluded because of his ethnicity.

All Hallows'een

The worst witch had a costume upgrade this year

Were is M?


Gruesome Twosome

Daddy's home

The Motley Crew

Little and Large!

Who is the ghostly figure on the right?

Charlotte Vicarage

You may remember that I posted about Charlotte's dream to make animated films, about living with Autism. http://sunshinetc.blogspot.com/2008/10/five-little-speckled-frogs.html.

Here is an update on the eagerly awaited films by the newspaper Newbury Today;
http://www.newburytoday.co.uk/News/Article.aspx?articleID=11407

It's great to hear that Charlotte has finally made her dream a reality. I am very honoured that Charlotte has dropped by and left a comment. Here is the link to her films and web page;

http://www.itvfixers.com/index.php?option=com_comprofiler&task=userProfile&user=96&Itemid

They are all amazing and I can particularly enjoyed 'Charlotte's introduction to Autism' and 'Charlotte's Butterfly Metaphor.' I can see many parallels between the descriptions in film and the way that M learned to speak, especially his use of echolalia. I was also very moved by Charlotte's description of herself as a 'political prisoner' in a mainstream school and can see how this applies to so many children struggling to cope with inclusion. I am sure that the films would be a very valuable resource for every school and nursery Nationwide.

Proud Mummy Moment

The Dad had to attend M's parents' evening on his own this evening, since I am not very well. I was really pleased to hear about how hard M is working and was particularly relieved that his empathy for other children is improving. These are the markers that parents of neuro typical children, take for granted and yet it is so significant for children who have social/communication difficulties.

M has apparently made the gifted and talented register for sport at the end of last year, so I have to say that I am having a proud Mummy moment this evening. M's superb athletics club is under threat of closure, so we are all hoping that those who run it will continue to train and motivate young athletes.

Conjunctions

Now M can tell you that he was cold...

Because he did this

and then this...in October.......for hours!

Conjunctions, does anyone else get excited about conjunctions? They are such little words aren't they? And, because, but, so & then. M has started to use these with a flourish and suddenly we are having a really good two way conversation.

I often think that we take speech development in children for granted. We marvel at their first words, perhaps even recording them along side the date of a first tooth or their first steps. For those of us who have longer to wait, every new speech and language milestone is like music to our ears.

M has had a fantastic week at home and school and he came out brandishing a certificate for getting all his spellings right. We have a reward system of points and he had reached his target, well before the end of the week. I told him that he could have the prize that he had been working towards and he turned to me and said "really Mummy? so now we can play it together?" It doesn't sound like much, but I will hold the moment in my memory, along with all of the other subtle changes that mean so much.

Navigating this site

ICAN have kindly provided a link to this blog, on the site page which details their assessment process. Our ICAN story can be found on the left hand sidebar.

Steve Barclay's Blog

Today's link is for for a post by Steve Barclay on the lack of speech and language services in a Cambridgeshire constituency;

http://stevebarclay.necambsconservatives.com/2009/09/23/speaking-up-on-speech-therapy/

It highlights, not only the lack of trained professionals within speech and language services, but also the huge case load of children that those within the profession have to deal with. It concerns me that that something as specialised as speech and therapy is provided in the most part by teaching assistants and not fully trained speech and language professionals.

Each year we have a new teaching assistant and whilst they have all been brilliant, I feel as though I have to start again, with regard to explaining M's very specific problems needs

In my experience as the parent of a child with SLI, it has taken me years of dealing with M at the coal face, before I have been able to fully understand what a providing a language rich environment means for someone with such specialised needs. Even today, I don't fully grasp the concepts that his independent speech and language therapist teaches him. Would I have been able to support M with ten hours of training? I think not.

My hope is that this will change with the proposed reforms, going forward from the impact that The Bercow review of children's speech and language services has had.

Marnee Bricks's speecch therapy Blog

I spent quite a while looking around this blog today http://tinyeye.wordpress.com/ and was really impressed by what I found. Marne Brick leads a world wide speech therapy telepractice and there are a number of really good videos on this site. I have picked this one about teaching concepts to children with speech and language difficulties, in order that they are able to carry out classroom instructions;
http://tinyeye.wordpress.com/2009/08/25/video-blog-helping-your-students-follow-instructions/

The advice, which includes using the child's body to teach concepts such as top, middle and bottom, is straight forward enough to appeal to parents as well as teachers. I have added this site to the useful links my sidebar.

Thanks giving For ICAN

Hi its the Dad here. Yesterday I had the absolute honour of speaking at a lunch held by ICAN for some of its trustees and donors. I was asked to talk about M’s difficulties and experiences, including ICAN’s involvement.

Now my job means that, on occasion, I have to talk to large numbers of people about certain things, and I am quite used to the whole thing. Many of those who know me and work with me will know that I have always got something to say. Sometimes it’s even relevant. But this was something different. Here I had to speak about something that really matters, something important, something that is very close to my heart. So I knew it wouldn’t be easy, but I had no idea just how tough it would be.

TClanger prepared the speech and having read it I knew how hard it had been for her. Each day, each week, each month we deal with the next ‘challenge’, the next difficulty for M. But each of these is dealt with in semi-isolation. This speech brought all of that together into 10 minutes. 4 years of battles, heartbreaks, breakthroughs and victories into 10 minutes is a heck of a lot to take.

The first time I read it aloud, it was difficult, but I got through relatively unscathed. I continued to practice the speech, wanting to make sure I could really draw out the highs and lows, the effort that has been put in by all 3 of us. But when it came to the day itself I realised this was going to be a lot harder than I had expected. I practiced a couple more times and could just about get through without choking, but I sensed it was going to be an emotional time.

When it came to the lunch itself, I was very nervous, but I have to say everyone helped to put me at ease. This was true of both the people from ICAN, and all the guests who were there to hear about ICAN’s fantastic achievements over the past couple of years and their plans for the future.

However, when I started speaking it all became increasingly difficult. I had to stop and recompose myself half way through, when I talked about how it felt now to look back at the times before he got the help he so deserved. And then it nearly became too much – I delivered the final minute or so practically blind with tears. I was speaking about how M is now, how he has regained his smile, how he has regained the spark. So much of this is down to ICAN – without their intervention; their assessment of his needs, we would still be struggling with a boy without his smile. The song says, “sorry seems to be the hardest word.” But actually “thank you” can be just as difficult, because sometimes “thank you” just isn’t enough. I guess there are times when even those without SLI find communication impossible, so perhaps I should learn from those few minutes and realise just how it is for a boy who has spent years not being able to say what was in his heart.