Tuesday, 30 June 2009

ICAN's Parliamentary Reception


“John Bercow MP requests the pleasure of your company at I CAN’s Parliamentary Reception on Tuesday 30 June 2009”

Now, I am sure that Mr Bercow hadn’t actually said, “Make sure you invite The Dad”, but I still took this as quite an honour, and I went along to hear about the next steps following the publication of his ground breaking report, and also I CAN’s plans following the three year Make Chatter Matter campaign. There is so much to say, but to avoid rambling, I have concentrated on the speeches.

Michael Buerk, Diana Johnson (Parliamentary Under-Secretary of State for Schools) and Hilary Armstrong MP all spoke about the importance of communication skills. It seems fairly obvious (particularly when you have a child who finds language difficult) but as Michael commented communication is one of the “fundamental skills for life”. Diana went on to explain that we need language to “make friends, share experiences and express ourselves.” If you aren’t sure about just how basic this skill is, trying spending a couple of hours in a social occasion without communicating verbally in any way. Children like M have spent an age not being able to express their own thoughts, not understanding other people’s, and having no idea when this might change. Hilary put it succinctly – “Thousands of children don’t have a particular label…but don’t develop what you and I take for granted.”

Beth Hopkin, Head of a Somerset primary school. She explained that if a child can’t communicate, they can’t access the curriculum. She spoke of one child who arrived with no communication skills but can no access a curriculum. He had previously been described as having behavioural problems, but the truth was he was frustrated as he understood nothing about what was going on, and couldn’t explain how he felt. The school invested in some training so that the teaching staff could ‘spot the signs’ early on and thus identify that help was needed. And this is the crux of it. Teachers are, in my opinion fantastic people, but can we seriously expect them to manage very complex conditions without the necessary training? Can we really expect them to highlight that a child has a language disorder, rather than is autistic or has a behavioural problem unless they are given the training to do so?

Then came the most moving speech of the evening, and I don’t mind admitting it left me with tears in my eyes. The mother of a child who attends the Meath School (the wonderful people responsible for identifying M’s needs, etc) spoke about her and her daughter’s situation (at the end of the day it is practically impossible to separate the lives of our children and ourselves). “Life with a child with special needs has been a journey.” “L should be valued for being the wonderful person she is.” “L can learn, just more slowly and in a different way.” “It’s not about a getting a special education, it’s about the education she needs”. This wonderful mother then spoke of the struggle, not with L’s condition, but with the authorities; the need to go to tribunals to get a Statement of L’s needs, and the placement in a school that can make a difference. Horrifyingly, she spoke of the fact that 4 years on she is back at square one trying to ensure that L receives the help she needs – no, the help she deserves. Apparently large chunks of her Statement have been ‘erased’ so she is back to attending tribunals to ensure L is not further disadvantaged by the State.

Diana Johnson commented that much had been done, but confirmed there was much to do. Never was a truer word said. I am a guy whose glass is always half full – for me it has to be, life would be too difficult if it became half empty. But here I am totally reliant on people like I CAN. These guys lobby tirelessly, work in a field that is still not appreciated despite its fundamental significance and do so simply to give children a better chance of contributing. I hope they go home each night and realise that, “today I changed a life.” So thank you I CAN, and thank you to people like L’s mum. Keep fighting for children who can’t say, “Please help”.

Friday, 26 June 2009

Comfort and Joy


We were sitting out on the garden bench yesterday, when M noticed the brass plaque and read the words aloud. " To Nan who loved her flower." This referred not only to Nan's life long love of gardening, but also the way in which she loved her own flowers, her grand and great grandchildren. He continued, "Nanny is up in the sky with Burt and Buddy the cats" I must of looked a bit crest fallen for a minute because he said "Why are you sad?" I explained that it was because she wasn't here anymore and that it would be a long time until I could see her again. "You miss her don't you he said" his expression mirroring my own. "Yes I do M," I answered" and he turned to give me a huge bear hug.

Thursday, 25 June 2009

Black Sheep Press

This week we M was evaluated by the area educational psychologist. She said that he had made phenomenal progress and that in some ways it felt like she was looking at a totally different boy. I was pleased to hear that she could see the benefits of the sensory adaptions/diet and home environment and that she felt that we had a very good working relationship with the school. M is beginning to control his stims, no doubt helped by the sensory diet, which begins with, deep brushing, massage and blanket rolling each morning.

The Ed psych felt on one hand M does not fit the triad of impairments for autism, not just because of his vivid imagination, but the way in which he applies it. She did feel however that his speech development showed clear autistic features, that would fit with semantic pragmatic disorder. M does not have good social communication skills and struggles to say hello, goodbye and thank you at times. We have come a long way in terms of receptive and expressive language, but his speech can still be very functional and he often misses the little nuances and changes in tone, that we pick up in general conversation.

M's speech and language therapist, is working on his pragmatic skills using programmes from Black sheep press.
http://www.blacksheeppress.co.uk/cgi-bin/ss000001.pl?PR=-1&SS=listening&TB=A
There are some excellent games and resources here, although they are designed for schools and speech therapy.

Wednesday, 24 June 2009

....and why you shouldn't say it!


I left yesterday's post without commentary but speaking to my lovely friend again this evening, brought back a lot of memories of the day that we finally received our diagnosis for M.

When M was born, like most parents, we had great expectations. These weren't so much for M himself, but about how parenthood would be for us. We had moved home to a house with a large garden and I remember telling the removal man how I hoped that the little room at the back of the house would be a nursery. He paused for a moment and I like to think that he like me, could almost sense a baby there. The new house was seven minutes from a lovely school, and I'd gaze at the park with shiny new play equipment on the way to work.

Mother hood was so much better and so much worse than anything I could have imagined. I spent the first year happily ensconced in a bright bubble, where I could respond to every cry and meet every need. M was a happy, smiley, beautiful baby and we slotted in to the Mother and toddler world seamlessly.

The realisation that something was wrong was a slow process. As parents we are blinded by love and the belief that if there is something wrong we have the power to fix it. If a child falls and scrapes his knee we deal with it with a plaster and some TLC, if favourite toys get broken, we are standing by with an industrial size tube of super glue. Super glue, Supermum simple!

But here is the rub! When you receive a diagnosis of a life long disability, it strikes at the very core of your being. Paediatricians, speech and language therapists and other professionals spell out your child's limitations and their impediments. Whilst we know that there are many parents and children who are worse off, we cannot fix it. And that is our purpose as parents isn't it? We make it better!

We are helplessly reliant on the services of others and are often not eligible to access the care and support we need, because our children are considered to be high functioning.

Added to this there is the gradual loss of friends, who find it just too hard to offer the right words or who cannot cope with the challenges that a child with physical, social, emotional, and sometimes behavioural difficulties bring. Often people judge our children at face value, blaming our parenting, or worse still some obscure environmental factor.

I realise that the last two posts have been a little negative, so I shall end by telling you what we do need. Someone to listen whilst we struggle in vain to make sense of what is going on for our child. The acknowledgement that the circus that surrounds diagnosis, educational statementing and accessing the right help, can be a complete nightmare. Finally, please understand that although we may come across as strong and capable parents, we are like swans; appearing calm and serene on the outside, whilst underneath paddling furiously against the current.

Tuesday, 23 June 2009

What NOT to say!

This post is dedicated to a friend who has just had received a diagnosis for her gorgeous little boy. Here are twelve things that a parent grappling with the diagnosis of an invisible disability, does NOT want to hear!

1. At least its not life threatening.

2. You'd never know it to look at him.

3. Oh I'm sure he'll catch up.

4. You are very brave.

5. Its such a shame because he is such a handsome boy.

6. The special needs children are lowering the standard of learning for the rest of the class.

7. I don't know how you do it I couldn't!

8. You do wonder with kids with special needs, whether the behaviour is due to the disability or ................
simply bad parenting.

9. If you ask me its all down to his diet.

10. At least he is not (insert) deaf/blind/unable to walk/starving.

11. He just needs to learn how to behave/what is and what is not acceptable.

12.You should think yourself lucky my child doesn't have any extra help in class!

That was very cathartic! ; )

Monday, 22 June 2009

In The News

I was delighted to read that the government have pledged 10 million pounds, to train 4,000 teachers specialising in dyslexia. I have heard a close friend's first hand experience of an education system, that was woefully inadequate in meeting her needs in this area. The lifelong impact that this has had for her. This week has also brought the news that one of M's close pals has received a diagnosis of dyslexia and dyspraxia and I am hopeful that this news will make a difference for him in the near future.
http://www.guardian.co.uk/education/2009/jun/22/4000-dyslexia-teachers

In addition I am delighted to here that John Bercow has been elected as Speaker of the House. In view of the sterling work he has done for children with speech and language disabilities, I feel that he has a proven track record in bringing about radical reform.
http://news.bbc.co.uk/1/hi/uk_politics/8111887.stm

Thursday, 11 June 2009

Daniel and the Lion

Michael Rosen the author of 'We're going on a bear hunt' came for a visit at school last week. This was part of national book week and the children were also asked to dress up as a character from their favourite book. When we asked M what his favourite book was, he answered the bible which gave us rather a lot of scope. We decided together that M would be Daniel and as the photos show he loved dressing up and taking his toy Lion to school for the day.

The early years at school for M must have sometimes felt like wrestling with lions. For children with sensory difficulties, finding your way alongside neuro typical peers, can be far from easy. Added to this M's inability to communicate his fear and discomfort means that meltdowns have been a common occurrence. M is now highly verbal and is finding his own strategies and ways of coping with outside stimuli, that can at times feel like an assault to his senses.We are very proud to witness him blossoming into a funny, happy, gifted and chatty young man.
I'm not quite sure that Daniel would have worn trainers though!

Friday, 29 May 2009

Special Smile for the Sunflower Princess


I was most honoured to find myself on the blogroll for this http://mysunflowerprincess.blogspot.com/ lovely blog which I must confess, I have only just worked out how to translate into English from the google translate icon on the blog's right hand sidebar! It is always interesting to read the stories of other parents navigating the same kind of difficulties with their children. M sends his best smile and I have added this link to my blogs of note.

Thursday, 28 May 2009

Speech and language downloads

This is a speech and language therapy blog that I have featured before;
http://www.speech-language-development.com/index.html

Whilst having a good look round this old favourite recently, I noticed this link http://freelanguagestuff.com/ which has some excellent free downloads.

Saturday, 23 May 2009

The Birthday Bandits


It has almost become a family tradition, that my Birthdays past have been hampered by 'The Birthday Curse.' In times past they have been marred by dying relatives, floods, divorce and a whole host of other misdeeds or bad luck.

Today, was no exception. We had planned a quiet picnic by the river, but M who seems to has developed either a tic or a cough which fell foul to a fully fledged asthma attack on route. After an emergency dash to the chemist, the rest of the day went off without a hitch and was really rather lovely.

Since major disaster seemed to have been averted, I decided to treat myself to a Birthday nap. I settled down under the duvet taking care not to disturb the nest of discarded gifts envelopes and wrapping paper. Suddenly, there was an almighty crash and two bandits waving light sabres burst into the room hollering a ferocious war cry. As I stumbled around in the darkness semi dressed, the Dad was nowhere to be found.

'Where is Dad?' I bellowed. "We have banished him and disappeared him to the dark side" came the helpful reply. Thankfully he had merely decided to do a rare bit of tidying up in the garage and had left the front door on the latch!