SunshineTC

…… And more about M

2011-07-30T18:31:00.006+01:00

Today, I am happy to say that M highly verbal, in fact we struggle to get a word in edgeways. At Easter, his speech therapist told us that her assessments had shown that M is now comfortably in withinthe normal ranges for speech and language. She felt confident that M’s needs may now be adequately met within the school structure, with no further need for her intervention.

Whilst M still struggles with English and Maths, he met the expected criteria, for the class avwerage, in every other subject and exceeded in Art, IT and Religious education. The Dad was particularly pleased with the latter, since he is his Sunday school leader.

M is tuned in and interested in many subjects and particularly likes to learn about species of insects, animals and plants. He is a talented and imaginative story writer and also enjoys writing poetry.

He excels at most sports but is still a gifted runner and a respected member of the school basketball team.

Whilst M has a loyal core of six friends who have supported him since his early years at school, he really struggles with social communication and has received help with this. If you met M today, it would still be clear that he has significant special needs, but he is worlds apart from the frightened, vacant and anxious child who refused to allow the Reception staff to hear his voice at age four.

We had an extremely terrifying time in March, when M was rushed into hospital with a burst appendix. It became apparent that one of his sensory problems is an extremely high pain threshold and thus it was not apparent how gravely ill he had become.

I’d like to say that M is one of the lucky ones, in that we have been able to provide the services that he so badly needed, in order to progress. M's journey shows the outcome for children who have access to appropriate intervention. His success story comes with from me with a slight sense of guilt, for those who are not so fortunate. For those children, like M, I shall continue to share M’s story and campaign for better speech and language services

Let's Recap

2011-07-30T18:29:00.012+01:00

I had to look back at past posts to see where I had left M’s story and the last real post about his progress seems to have been in January 2010. I realise that if there are people still following M’s story, it kind of leaves things open ended.

So just to recap, we became aware that M had difficulties with speech by the time he was two and a half. He was referred to the local Speech and language therapy department at the recommendation of the local preschool manager at three and a half.

The speech therapist told us that M was 18 months behind in both receptive and expressive language and that this delay would severely impact on every area of his development and education. We were told that there was no one to one speech and language therapy available for children with complex disorders, but that should we wish to pursue this avenue privately, we should look for a therapist in the yellow pages. M had follow up visits over the next year, but was mute at every appointment and was therefore marked as 'Not Assessed.'There were no clear sign posts to ALTIP or for charities such as ICAN (please see links on left hand side bar)which would have given us alternative avenues for helping with M's difficulties.

During a further visit to the paediatric department, ruled out the possibility of autism, but when we asked what help was available for our child the doctor shrugged and showed us an empty pair of hands.We were told that his needs should be met by his independent education plan and that the Head master could call for funding and resources. Cue a bat a ball game between health and education authorities.

M’s behaviour deteriorated and the teachers at school, struggled to manage his needs. Whilst the headmaster called for some very helpful interventions such as the involvement of the behavioural support team, M’s language needs were not adequately met by the local authority.

After a two day assessment at ICAN’s Meath school at age six M was finally diagnosed with severe SLI. You can read a full account of this on the left hand side bar. We employed an independent speech and language therapist, who worked with M and trained his teaching assistant in the school setting. Initially this was weekly basis dropping to after the first eighteen months after diagnosis.

At six M was assessed at being between the 1st and 3rd centile for language almost across the board. Initially, M’s Teaching assistant drew pictures sequences on a white board, in order that he could understand class instructions. M was unable to tell the difference between What Where and Why and was therefore unable to ask questions to learn about his world. M lived completely in the here and now, with no concept of history or the environment he lived in other than what was tangible and visual.

An Update on Me

2011-07-30T15:45:00.009+01:00

It has been a long while since I have given an update on how we are, so I thought I’d start the ball rolling by telling you what I am up to and I shall shortly update you on M’s progress.

Life these days seems to be beyond busy and I have various voluntary roles within the church and wider community. I help out at a toddler group two mornings a week and have been able to provide resources such as ICAN’s communication cookbook and other literature that helps young children who are learning to communicate. I have to say that it is a bitter sweet pleasure witnessing neuro typical speech developing in these children, whose ages range from birth to three years.

I have also started a local support group for parents of children with special needs and this has grown very quickly from just six members to twenty seven. I have joined forces with a pretty dynamic lady who has a child with severe autism and we have recently put in a bid for funding from Aiming high, in order that we can run an evening support group once a month, at the local Children’s Centre.

In addition to this, the Dad and I have recently joined a Parent Participation group, which meets every six weeks, to take back the views of local parents of children with disabilities, to the local education authority. We have also agreed to give feedback at an LEA meeting for parents who have chosen to/had to opt out of the local provision for SEN services, in order to pursue an independent route.

I continue to be encouraged, moved and dismayed at the stories I hear about speech and language services here. I have heard positive reports of the ‘Every child a talker’ campaign from staff at the local Children’s centre and this gives me hope for children going forward. On the flip side however, I continually see and hear intelligent, switched on and caring parents having to wade through a mire of red tape in order to secure services such as speech therapy, occupational therapy and respite care for their children. I could weep at the impact that this has on relationships,family life and mental health.

I am as ever an optimist and hope that the reforms to SEN services, in the proposed Green paper 'Support and Aspiration A New appraoch to Special Education' outlined here; http://www.education.gov.uk/childrenandyoungpeople/sen/a0075339/sengreenpaper will make a difference.

BBC Radio Report on new Test for SLI

2011-07-30T11:24:00.004+01:00

Please click on the title of this post to listen to the BBC Radio 4 programme which features Professor Heather Van De Lely of Harvard University. During the interview, she explains why her "gaps" test 'was found to be 98% effective in identifying specific language impairment.'

ICAN Chatterbox Challenge

2011-02-27T20:21:00.005Z

I received this email from the ICAN press office earlier this week, which is fairly self explanatory;

ICAN have polled 2,000 parents with children 0-5, and 1,000 grandparents separately for I CAN’s 10th Anniversary of Chatterbox Challenge which as you know is our nationwide singalong event.

We have over 240,000 children registered to take part up and down the UK in over 7,000 early years settings. I CAN are coordinating a Guinness World Record TM attempt for the most people singing ‘Head, Shoulders, Knees, and Toes’ across multiple venues on March 1st at 11am and we have almost 100,000 children registered for the attempt.

We know that communication skills are so important for children’s life chances and it is interesting to see the really juicy trends that came out of our poll.

Some findings from the parent’s survey:
The poll found 75% of parents cited talking as the number one way of improving their child's communication and development skills
More than half the parents surveyed thought that the biggest influence on children’s speaking and listening was how much the family talk at home
62% of parent’s still value and sing nursery rhymes regularly with their children. However, popular songs such as the X Factor and Glee didn't fare well.
Parents are feeling the financial strain of the current economic climate quite intensely and over 56% of parents feel their child’s development would be hindered if community centres, children’s centres etc were all cut/closed down. They would also have to find extra money to pay for other services and activities for their children.
Parents are still putting their children first despite the pressures. 77% would reduce their own spending and cut back on themselves rather than their children’s activities.
Some findings from the grandparent’s survey:
53% of grandparents still sing nursery rhymes with their grandchildren
61% of grandparents strongly agree nursery rhymes are important and should be passed on the generations
Over 45% of grandparents think the main difficulty parent’s face if financial pressure
Over 31% thought the main strain came from parent’s having to work much longer hours
The findings really show how dedicated parents are to their children’s development - and show that talking and singing are popular activities to do with your children. Fun, free activities for families to do together are even more important in this current economic climate and it is great to see families doing this.

Please click on the title of the post to access the link, which includes details of how you can register for your free Chatter Box challenge fundraisers pack.

OEDn Online Education Database 20 best speech therapy-blogs

2011-02-11T22:05:00.005Z

Now, as a general rule I don't actually respond to requests to advertise or endorse other blogs, unless I have discovered and found them useful myself. I have made an exception for this one, however.

Whilst most of the blogs listed would probably be of more interest to those in the speech and language therapy profession, there were three that caught my eye, from a parent's perspective. The 'Play on words' blog, has a number of interesting articles and tips for parents; 'If only I had super powers' has some great resources and book exctracts for parents and teachers, particularly Readwork which has some ideas for teaching students concepts such as figurative language, including personification and idioms and finally the Autism games blog. Please click on the title to access the article.

Independent Article; Could the success of The King's Speech help highlight language difficulties?

2011-01-20T16:57:00.009Z

This is very interesting article, which mentions the plans for the National Year of Communication and the Meath School. The parent stories cited, very much mirror our experience, whilst fighting for services for M. Please click on the title to access the link.

Communication Trust 'Don't get me wrong'

2010-12-02T21:17:00.005Z

Please click on post title to access the link to the above, which is for a PDF of the Communication trust 'Don't get me wrong document. This has pretty extensive information for caregivers of children with communication needs. It covers a number of the different language and communication disabilities and explores the possible outcomes of the children who have these difficulties.

My hope for next year

2010-10-27T21:19:00.005+01:00

Hi, another posting from the Dad.

On Monday I had the honour of speaking at the Speaker's House at the House of Commons. This was an event organised by I CAN and the ACE Centre in advance of the National Year of Communication, and was introduced by The Rt Hon John Bercow, The Speaker of the House of Commons. Many will be aware that Mr Bercow produced a marvellous report that highlighted the needs for children with speech and language disabilities.

It was, of course, a wonderful to have the opportunity once again to lend a voice to those whose own voice is not heard. The chance to speak about the problems faced by parents, the frustrations and anxieties we have to deal with is always welcome in the hope that our story may prevent others from having similar difficulties in the future.

But for me, there were a couple of other aspects that really struck a note. The first was one of the other speakers, a young man currently attending Dawn House, I CAN's secondary school near Nottingham. He spoke about the difficulties he has faced in his school life, labelling, assumptions, etc. This was before Dawn House and it is amazing to see the turn around. He is an insperational person, currently attending college 3 days a week and hoping to go on to Uni. His mum was also there, and she has clearly had to fight the battles too many parents have to fight. But she has fought and she has won, but the question is; why does she have to fight for a basic right for her son.

The other amazing part was a video that was shown of Stephen Hawking talking about the value of communication. His speech ends with the statement; "...with a voice, we have the power to be who we are." http://youtu.be/xPoc7GOpPYo

My hope for next year is that the profile will be raised so that more and more children will be given the voice to have the power to be who they are.

Every child understood brings news of the unveiling of Hello

2010-10-27T10:11:00.005+01:00

As 2011 heralds the National year of communication, Every child understood- The Communication Trust blog, brings news of the Parliamentary unveiling of Hello the name for the campaign. Please click on the post title to view the link to this item.

Legacies Through A Lens Remember a charity week http://rememberacharity.org.uk

2010-09-17T14:04:00.019+01:00

On Tuesday, the Dad and I were lucky enough to be invited to a photography exhibition 'Legacies through a lens' hosted by the charity remember a charity in your will, at the OXO gallery in London. The photographs represent 140 individual charities and is aimed at encouraging people to leave charitable donations in their will.

Back in August we agreed that M could be photographed to represent ICAN for the exhibition and so we headed up to London to meet the ICAN press and PR team. Whilst M was not a particularly easy subject to photograph that day, photographer Ed Miller did a pretty good job of capturing something of his essence in the chosen shot.

Ed had taken many of the stunning pictures on display, but the exhibition also had photos donated by celebrities, including Gordon Ramsey and Alexandra Burke, depicting charities that they support personally.

It was also great to catch up with the ICAN team members Claire and Charlie and to hear about future projects in the pipeline. We had a sneak prelude of an exciting campaign which is to be be launched next year. M’s story will be featured on some of the literature for this campaign.

The exhibition runs from the 13th to the 19th September 2010.

Our thanks for ICAN's legacy

2010-08-23T21:00:00.013+01:00

Recently we were asked by ICAN whether M could take part in an event for the organisation ‘Remembering a charity in your will' The photo will be used to represent ICAN in an up and coming exhibition, at the Oxo tower in London.

This made me think about what these gifts mean, in terms of the living legacy to the children that ICAN have been able to help. I don’t think I have been direct enough in the past in spelling out exactly what impact ICAN’s intervention has had on all of our lives.

M is a beautiful child with complex needs. He does not neatly tick the boxes or meet the criteria for the most common disabilities such as autism, ADHD or Dyslexia. Whilst his language needs were pretty profound at an early age, we found that we were quite literally shown the door, when it came to early intervention here.

We were not offered any concrete advice, in meeting M’s needs and we felt helpless. The ICAN workshop gave us the much needed signposts and support that we had been searching and I found the Talking point website, pretty unique in terms of its content for parents. I could see similarities between M and some of the children whose stories were featured. This commonality, led me to contact ICAN.

The assessment was both holistic and thorough and whilst we were shocked to the core at the team’s conclusions, I feel that without this service, we would still be wading through the mire of special educational red tape.

We had a child who was isolated, angry and frustrated beyond words. At four M was only just putting words together into short phrases, by six it was clear that his language was disordered and that simple verbal concepts eluded him. The ICAN report galvanised us into action. There for the first time in black and white, we could see what M’s impediments to learning were and exactly what we needed to do to help with those difficulties.

M is nine next month and with extensive speech and language therapy he has blossomed. Something as simple as distinguishing the questions ‘why, what, which and where’ has given him a platform to make the connections he needs to learn. I cannot put into words what it means to hear M share memories from his past. Being able to give a simple narrative means that he can discuss a shared family history!

M has a thirst for knowledge that we couldn’t have possibly have anticipated. Last week he spent forty minutes listening to a detailed audio guide at a museum. He was able to follow the very detailed instructions, look at historical objects and talk to me about aspects of the story that interested him.

Inexplicably, now that M has managed to crack the code of learning language, the subject he shines at most is Spanish. It is an utter joy to read the stories and poems that he writes, because he is finally able to share his vast imagination. I feel as though a metaphorical bulldozer has smashed through the barriers that prevented M from sharing his world with us.

We have a way to go, but the constant anxiety around M’s care and provision is easing. We will always be grateful to the people who have donated and left legacies to ICAN. M has obliterated all early predictions because of the support and direction that ICAN have given us.

Changing Expectations

2010-06-17T18:03:00.007+01:00

Last night I was explaining to a friend, that my expectations for M are never constant. We were so in awe of our beautiful son when he was born and like many parents we imagined what his future might hold. Years ago a line from a poem about children struck a chord; "We who fail to be the authors of our own lives write theirs." I dreamed about a university education, a sparkling career, a wedding day and grandchildren.

Suddenly, without warning someone or something came along and grabbed the rug of expectation out from under our feet. I was angry, frightened and hurt by the gradual realisation that things were not as they should be for M. I adjusted his imaginary future and my hopes for him, moved down a notch or two.

Recently, I have come to realise that this was very wrong. The child of five screaming with fear under the nursery table has gone and with extensive Speech and language therapy, M has blossomed before our eyes. He is still very different from his peers, but on Saturday at a Birthday Party, he held the table of children in the palm of his hands, with his antics.

M is probably the best communicator I know, his face houses a thousand expressions and he has not lost the ability to impersonate the voices of his classmates. I now see a bright star, who has taught me more than the perfect child of my imagination ever could have!

Raging Thirst

2010-05-24T17:02:00.002+01:00

M was disgruntled at having to go shopping for food when he was feeling thirsty. "My mouth is like a desert" he exclaimed "and when I open my mouth my tongue tastes like the sea!"

Child Songs

2010-05-02T21:02:00.007+01:00

M has blossomed over the last year, his speech has burst through as if his words were water being held back by a dam. At times though, when he is under pressure to speak, his words are a little stilted. He can lack intonation and fluidity, yet his sheer determination to speak is shining through. This morning as he spoke over the microphone at church, he reminded me of a poem I once read from Spike Milligan's anthology 'Hidden Words.'

Child Song

"There is a song in man
There is a song in woman
And that is the child’s song
When that song comes
There will be no words
Do not ask where they are
Just listen to the song
Listen to it-
Learn it-
It is the greatest song of all."

Perfect poetry

2010-02-24T21:26:00.011Z

I have realised that there are some things too good not to share with you. Two years ago M could not speak in full sentences. Having specific language disorder meant that he couldn't share his world with us through words. On Tuesday, he came home from school, proudly wearing a Head teacher award sticker for this poem that he had written by himself.

(In case the words aren't clear, I have printed them out below)

I am

I m a Good boy who likes to run,

I wonder if its sunny outside.

I like to feel the warmth on my face,

I like to smell the fresh air.

I like to hear People cheer when I run.

I am a Good boy who likes to run.

I like to pretend I have special Powers,

It touches me when I cross the finishing line.

I like it when my friends are nice to me,

I like to make my Mum and Dad proud,

I am a good boy who likes to Run.

This week M found out that he has made the under eleven team at his athletics club.

Body brushing and deep pressure massage

2010-02-11T19:45:00.002Z

We have been using body brushing massage, joint compression and deep pressure for a while now. This site which explains the technique, which should be done under the direction of an occupational therapist.

http://www.autism-spectrum-disorder.com/deeppressureandautism.html

The Last Post

2010-01-14T09:04:00.007Z

Writing the blog has been an absolutely brilliant experience and I now have a reference point for all the different services and resources we have used along the way. I have met some fantastic people and have learned more from them than, I should have thought possible.

For those visiting via the ICAN website, our experiences with ICAN can be found near the top of the left hand side bar.

I'd like to thank everybody who has read and contributed to the blog. Be assured I shall be out there battling for better speech and language services for children and clear sign posts for parents.

Recently, M has become very aware of his disability and I feel it is now time to give him some privacy. I may pop back in from time to time if I find any useful articles or services, but for now 'Its goodbye from me..... and its goodbye from him.'

Medical News today Brain Imaging may help diagnose autism

2010-01-13T19:24:00.004Z

http://www.medicalnewstoday.com/articles/175479.php

I wrote a post a while back,
http://sunshinetc.blogspot.com/2009/03/mediscape-article-by-caroline-cassels.html on research into the effect that auditory processing delay, has on the development of language. This article explains a little more on how the research at Philadelphia Children's' hospital on how brain imaging, may be used as a diagnostic tool for autistic spectrum disorders.

Soft southern Brits in the snow

2010-01-10T20:01:00.014Z

Here in the South of England our schools shut, our infrastructure grinds to a halt and we all have time off to play in the snow.

The green green slopes of home, becomes a mountain for snow sports.

One boy and his sledge, explore a landscape in disguise.

And a kindly snowman provides a shoulder to lean on.

Having one eighth of Welsh mountain blood, means that this is one little boy who never feels the cold!

And a sensory seeking child, smells touches and tastes the snow, but the muffled silence it brings, defeats even the most sensitive hearing.

A Polite Notice

2010-01-09T15:09:00.004Z

Recently, I have received a large number of comments from people wishing to advertise products or companies on this web site. The purpose of this blog is to record our journey and to share our experiences with other parents of children with speech and language difficulties. Whilst I have listed many links, blogs and products that we have found useful along the way, I am not willing to use the site for advertising purposes, nor to endorse or market products. I shall therefore delete any comments of this nature.

Radio 4 Woman's hour Jenny Murray

2010-01-06T22:27:00.003Z

I have had a comment from Laura Root about an enlightening interview by Jenny Murray with Jean Gross on today's woman's hour. It is still available on BBC iplayer here http://www.bbc.co.uk/iplayer/episode/b00pjpwq/Womans_Hour_06_01_2010/

Thanks so much Laura for flagging this up, I know that The Dad is chomping at the bit with his two penn'th here are the salient points :-

Jenny spoke to a speech and language therapist (I think called Katrine) who confirmed some of the statistical data that I referred to in my earlier post. She commented that 1 in 6 boys have problems learning language and that this may be due in part to social factors. These include the suggestion that parents encourage their boys to be physical and their girls to be social. Alternatively, there is an argument that it is biological - ie the possibility that boys are visual spatial learners and whilst girls have a predisposition to communication skills. She also stated that 5-7% of children have problems with speech, which require specialist help.

When when parents should be concerned and to seek help, she said that a trained speech and language therapist would be able to asses the comprehension of language from a very early age. Babies begin to understand words at around 10 months. Katrine advocated the closer working of speech and language therapists with parents, to enable them to meet their child's needs.

Jenny questioned Jean about what her next steps would be in terms of the early identification of these difficulties. Jean replied that The heads of children's services, found it hard to prioritise children's' services and that childhood obesity was often given more priority.

She went on to say that 1/3 of children with speech and language difficulties go on to develop mental health problems and 2/3 of young offenders have communication difficulties, often undetected.

Jenny highlighted a couple of letters in The Times regarding the possible causes of language impairment, including a study on front facing prams and the lack of early local authority healthchecks, particcularly at age 2.

Jean spoke about her wish to speak to many directors of children's services, because she felt that there is a tendency for them to 'patrol their own boundaries' I have spoken of the continual bat and ball game between health and education authority, with regard to providing specialist care, in the past. She also spoke of her wish that schools share the speech and language training from therapists, in order to train adults and teachers.

Jean Gross' Survey on speech and language difficulties

2010-01-06T13:55:00.009Z

A survey by MP Jean Gross (England's communication champion) has found that almost one in six children have problems learning to talk, with boys facing more difficulties than girls. The Daily Telegraph article here
http://www.telegraph.co.uk/health/children_shealth/6926505/One-in-six-children-have-talking-problems.html reports that the poll of 1000 parents, also found also that boys are twice as likely to have problems with speech and language than girls. Here is a link to the BBC news item which includes an interview with Jean Gross. http://news.bbc.co.uk/1/hi/education/8436236.stm

I am not surprised to hear that "A quarter (23%) do not receive any help with speech problems, and almost half (46%) did not receive help from a speech and language therapist" and that many children are reliant on help from staff at preschools and nurseries.

The report recommends parental and professional intervention, including limiting TV, reading, singing and using nursery rhymes at home, to help promote language development. This fits in with ICAN's 'Make chatter matter campaign,' http://www.ican.org.uk/makechattermatter but I believe that we need to go even further than this. The provision of a language rich environment for children who have atypical or abnormal language development, has to be very different to that of their neuro typical peers.

I believe that we saturated M with language and the ICAN/Hanen advice for us, was to say less and listen more, in order to encourage M to speak. Parents need to be part of the speech and language provision, we need to be included instead of being made to feel like unhelpful spectators. I should have jumped hoops in order to help my child, however looking back, I had neither the right tools or resources. There were no clear sign posts to help and no parent or language groups, where I may have been able to learn the skills needed. I believe that the system of assessments and huge waiting lists for therapy, prevent even the most well meaning parents from accessing the right help at the right time.

Whilst I am an huge advocate for early intervention, I also believe passionately that more emphasis on clear cut language provision, with regular assessment by a qualified speech and language therapist. There seems to be little consistency and continuity for children, even now when the Bercow and Lamb enquiries have highlighted the awful deficits within services for children with special needs. I was pleased to hear that Jean Gross would also like to see expert speech and language provision to be more readily available, but it would be nice to see some evidence of these changes actaully being implemented. I know that I have said this before on numerous occasions, this is after all my personal soap box!

Christmas snapshots

2009-12-29T23:23:00.010Z

Christmas Eve at Salisbury Cathedral

Cheeky chappie

Bumble

Flowers hastily done

Christmas cooking with The Dad

Santa's Little helper

Pretty Pressies

2009-12-22T15:42:00.004Z

This time last year I won Mr Carrots (on the right) by guessing the correct name at our annual Christmas fair. M has been coveting the doll and since and regularly kidnaps him from our room where he resides (in relative peace).

I have mentioned before that puppets and knitted toys are wonderful tools for role playing games, for children who have speech and language difficulties. Knitting seems to be a dying art these days, so I was delighted to finally track an identical doll on line at http://prettypressies.co.uk/page3.htm They also have a gorgeous selection of other knitted toys too.

Sue, from pretty pressies, has knitted the doll in record time and M has finally stopped harassing the postman. Due to the snow, we trekked to the post office to collect Mr Sausages today and M is absolutely delighted, particularly because he is even bigger than Mr Carrots.

Thank you so much ladies, you have made one little boy's Christmas!

The Lamb Enquiry

2009-12-21T21:10:00.025Z

http://www.dcsf.gov.uk/lambinquiry/

Brian Lamb submitted the final draft of his report to the Secretary of State, on the 16th Decemebr 2009. A while ago, we gave permission for ICAN to use our case study, as part of the body of evidence, that was submitted to the enquiry.

I have briefly scanned through the PDF detailing the report and there were some points, which immediately caught my eye;

"Type of need
For children below the age of 7, the most common type of need was speech, language and communication difficulties, 42% of all pupils at School Action Plus."

Sadly, this does not surprise since me the lack of provision of speech and language services, other than assessment here, have astounded me. I had hoped that the recent Bercow report and the reforms around the Early Years Services may have improved S&L provision for children who are starting out on their special needs journey. Unfortunately, I hear from others locally, that the waiting lists for referral are still long and that children are slipping through the net, even when speech and language problems are being flagged up by their parents or teachers.

"A consequence of the lack of expertise at school has been the inability to deal
with more challenging children within the classroom. However we cannot accept a situation in which children with SEN are eight times more likely to be excluded than their peers. With more expert support in schools and with new guidance to help schools deal with issues better and earlier, we expect to see a steep decline in disproportionate exclusions."

I feel that children with disabilities are easy targets and that often they have no advocate within the school system. I have an excellent parent partnership advisor to turn to and the school have support from various outreach services and agencies. I am never quite sure who M is able to turn to in times of duress and who it is that listens to his version of events. Add to this the hostility of some parents who resent inclusion and I can fully understand this worrying statistic.

I'd like to see more nurture groups; our school have recently has great success with a bush craft group to help children with disabilities, with social skills and teamwork. I'd also like to see more support for parents/teachers via behaviour support strategies and/or parenting classes.

"Bullying
Pupils’ self-assessment in the Tellus survey indicates that 48% of all pupils had been bullied and 61.4% of pupils with a learning difficulty had been bullied. Pupils themselves recorded whether or not they had a learning difficulty."

The parents that we met on a recent Anti bullying workshop, reaffirmed our own experiences around the bullying of our child. When a child with special needs has behavioural problems, it is easy to make the challenges of their behaviour, the sole focus, rather than looking for some of the root causes/trigger. For M, there is an ongoing undercurrent of ganging up, name calling and button pushing which seems to prevalent amongst the many of children I know within the special needs community. The starting point here, would be an acknowledgement, in every school, that bullying of special needs children IS happening.

The small knight's tale

2009-12-20T17:57:00.016Z

Once upon a time there was a brave knight

Who was trying hard to learn all the skills he needed to be a King.

Now not much fazed this little lad but he WAS afraid of fairies! He hid behind his Mum and watched as a beautiful young princess, ran straight into the fairy's arms.

The little knight cried and said that he wanted to be just like the girl. He was sad because he didn't want to be shy and different anymore. To cheer him up they went on a magical ride in a horse and carriage.

The Mum, who was a little teary eyed,wanted to say that 'Different' is challenging and tenacious and resilient, but what she told him was that 'Different' is special and magical and good!

So the brave knight practiced even harder at his King skills

And with the help of the Dad,

He finally got to sit on his throne.

I Love Father Christmas (By The Dad)

2009-12-15T23:34:00.003Z

Sometimes you have days when it seems no one understands M. I have heard him called all sorts. M is not easy; but then, it isn't easy for him either.

The other day I took M to a local garden centre. Whilst there we visited the grotto. We we went in, and M was greeted warmly by Santa who was dressed in the traditional coat, boots and beard, surrounded by the traditional decorations and presents and opened with the traditional questions. "What is your name?", "How old are you?" and the inevitable, "Have you been good?" We then had a little chat about being good, before suddenly Santa stopped. He looked at M and said, "M, I look at you and I can see it isn't always easy. You find it difficult sometimes don't you? Well, I can also see that you try M, and that is all I look for. M, you are a brave boy. If you carry on trying that hard, and being that brave, it will be all right."

So, here we are in the lead up to Christmas, when children all over the world have unparallelled hope for what might appear in the stockings. Many others of us have another hope for something even more wonderful. On Sunday I left the grotto with a hope that fell somewhere in the middle. That people might share Santa's willingness to look at the child and see the difficulties he faces rather than the behaviour that is evident in a single moment.

ICAN Adopt a word

2009-11-30T15:08:00.004Z

About a year ago I the Dad and I bought each other a word via ICAN's adopt a word scheme. When I recieved an email from them asking me if I wanted to renew the word. This year, however, I have decided to choose a different one.

http://www.adoptaword.com/index.php

I wanted to pick a word for all of the children including M, whom I have come to know and love. I thought about the term Pioneer, which a very learned friend had used recently to describe the way that these children burst into our lives and turn social normality and convention on its head. Although I liked this word, there was a different word at the back of my mind, which I couldn't quite call to mind.

M has both gifts and challenges that have shown me a different and simpler way to live. I have no choice but to slow things down to meet M's pace. Despite the deluge of labels and paper work we have to contend with, he has taught me a way of communication that is straight forward, pure and honest; A form of language with out clever play on words or dual meanings and which carries neither duplicity nor irony.

A long while ago I wrote a post when I described M and his friend as maverick souls. The definition of maverick is "someone who exhibits great independence in thought and action "and so for all of the children I know, who have know choice but to 'tell is as is is 'I have chosen this work for you.

Aston Tirrold Centre for Reflection (Preparing for Advent)

2009-11-28T19:45:00.011Z

We have had the most amazing Autumn this year and at the end of September, I finally felt ready to go forward for Baptism and Confirmation.

Today I attended an Advent quiet day at the Aston Tirrold Centre for reflection.

http://www.reflect.freeuk.com/

It was a very special day and it was wonderful to be able to share silence and prayer, with members of the Christian community, and particularly with two members of our own church. In some ways it has been a troubled week, so it was fantastic to be able to find such an oasis of calm to retreat to. I am already planning to go back to explore the beautiful village and three churches.

Earlier in the week we took part in a 'Get in the picture' event at our Christmas street fair. http://www.getinthepicture.org.uk/ The aim is to get families to take part in the Nativity story at events across the country, in order to share the real message, with family and friends.

Some of you will remember that last year, M finally got to take part in the school nativity play as one of the Three Kings, so he was more than happy to take on the same role again this year.

Modelling Good behavior

2009-11-27T09:13:00.007Z

Recently, there have been one or two incidents at school, which have concerned me. Once a week M plays basket ball after school and I have to catch him in the cloakroom, at the end of the day, to give him his kit. M was really happy to see me and in his excitement he ran straight to his class room door, ahead of a small queue of children, who were waiting to get in.

A staff member bawled at him "Yeah that's it M, why don't you push in front of the rest of the children, Yeah nice one M!" He has a very literal understanding of speech and does not understand irony or sarcasm and so he turned to the staff member with a beaming smile, which dropped immediately when he saw her angry face. M became very flustered and confused and had a meltdown. It is upsetting to hear any child ridiculed this way, particularly since last week the whole school focused on ' the Anti bullying week' campaign.

In a separate incident a child threw M's ball into a large puddle, in an area of the playground which is constantly flooded. M went to retrieve the ball and an angry teacher shouted instructions at him and the ball was confiscated. M is often unable to hear instructions in the playground, because auditory processing difficulties means that he hears things as a wall of sound. He was unsettled for the rest of the afternoon.

Since we have signed up to a behaviour support plan, which includes speaking to M in a calm way without shouting, I have suggested the following pointers, for everyone who is involved with M, during the school day.

1. Please call M by name in order to get his attention.

2. Please try not to prompt or speak quickly whilst M is trying to process what is being said, because he has a significant auditory processing delay.

3. Allow take up time, so that M is able to self regulate his behavior and comply with the request. He may need to go inside to his calm down space and M also needs time to be able to explain what is going on from his perspective.

4. Please be aware that M has a literal understanding of speech and does not understand idioms, irony or sarcasm.

5. Keep sentences short (10 words maximum) and give M the instructions in the order that you want him to comply with the request.

When a Mother’s Love is not enough

2009-11-24T14:28:00.015Z

I had hoped to write a post on Rosa Monctons’s documentary ‘When a Mother’s Love is not enough,’ whilst it was still available to view on BBC I player. Unfortunately been a little tied up and I seem to have missed the window. This is a link to the Telegraph review of the programme.

http://www.telegraph.co.uk/culture/tvandradio/6539642/When-a-Mothers-Love-Is-Not-Enough-BBC-One-review.html

Rosa Moncton is a business woman who campaigns for on behalf of children with severe disabilities and their parents. Rosa and her husband have a fourteen year old daughter called Domenica, who has downs syndrome.

The documentary begins with Rosa’s very frank descriptions of her feelings towards her daughter’s birth “I felt a sense of horror and despair, which completely overtook my maternal instincts." She voices the opinions and feelings that parents of children with disabilities are used to having to hide. There seems to be a popular myth that these parents are somewhat 'special.' There is often an implied sense that these people are equipped with extra strength or coping mechanisms. The reality is very different and I applaud Moncton's honesty. She also describes the practical difficulties and fears that the family have faced over the years.

The documentary details several high profile cases of parents who have experienced disability hate crimes. Sadly, several parents driven to the brink by despair have killed their children. These include the recent case of Fiona Pilkington, who burned herself and her daughter to death, after experiencing years of sustained physical and mental abuse.

Moncton also interviews parents of children with profound disabilities, one of whom has seriously considered suicide. These parents receive very little support and respite from the Government and one Mother was asked to syringe the urine from her child’s nappy, to prove that her request for more nappies was justified. Yet another couple, struggled daily with the aggression and violence from their son who has Asperger’s syndrome. As he grows in height and strength, the couple are more and more at risk from his attacks, which seemed to be spontaneous and impulsive.

During an insightful interview with David Cameron, he calls for "A huge clamorous voice to say that we need to look after these people" A recent Mumsnet thread, in response to the documentary, calls for a unanimous approach to members of parliament and government departments, to call for disability hate crimes to be recognised as a criminal offence.

http://www.mumsnet.com/Talk/am_i_being_unreasonable/859373-In-wanting-to-make-disability-hate-crimes-as-illegal-and?reverse=1

Moncton concludes the documentary with these words "What is missing is the help, what is missing is the compassion and the common sense. Surely what is missing is the money that would render State compassion effective."

King of Cool

2009-11-18T20:57:00.006Z

M has always been a delight to dress, since providing that the fabric is not 'Snitchy' he is usually happy to go along dressed in what ever we put him in.

Recently, however, I have been tearing my hair out at the amount of different outfit changes he needs for school and clubs. This term we have school uniform, football kit and one set of trainers for two lunchtimes per week, PE kit with a second set of trainers, basketball kit, athletics kit with a different type of trainers yet again, forest school/bush craft kit with wellies for Thursdays, blue for anti bullying day for Friday and on the 5th of December he has to dress up as a Roman soldier.

I am also beginning to resemble a pack horse on the way to school, as I do not drive. Since the bank balance and my sanity is slowly emptying, I tried to get away with buying a couple of pairs of cheap trainers. I was promptly marched out of Next and into Clarks where I was informed that trainers had to be 'Cool' My boy is growing up!

Family Tradition

2009-11-12T21:15:00.012Z

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

2009-11-06T21:06:00.011Z

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

2009-10-31T20:36:00.011Z

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

2009-10-24T16:04:00.010+01:00

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

2009-10-21T22:10:00.005+01:00

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

2009-10-09T22:00:00.014+01:00

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

2009-10-06T20:06:00.002+01:00

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

2009-10-06T10:53:00.006+01:00

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

2009-10-03T16:23:00.004+01:00

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

2009-09-25T21:46:00.005+01:00

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.

Basket Ball

2009-09-16T20:14:00.003+01:00

Its been a tricky week at school, M is very tired and not a little disorientated after our busy weekend. He has been sent to the head of year twice for misdemeanors, but on the flip side has earned twelve stars so far this week, so we must be heading in the right direction.

Since we have been seeing so much improvement socially over the summer hols, I took a leap of faith and signed him up for after school basket ball. The coach was absolutely excellent with just the right balance between firm/fairness. M amazed me by following the instructions brilliantly and the only time he fazed out was when he had to sit down and listen without actually doing something active.

Not only was he able to shoot baskets well, but he showed a huge improvement in coordination. He was able to dribble whilst running (previously he has been very single task focused) and was able to move the ball around his body and from left to right. There was one little incident and a bit of a scuffle when a child pushed in front of him, but on the whole I am a very proud Mummy. I also have to wonder how much of the improvement is down to the sensory diet and listening programme.

Milton Hill House Hotel, special events and special needs

2009-09-16T11:09:00.018+01:00

I wanted to write a short post about planning a special event, when you have a child/children with special needs. Since children are pretty central to our lives, we wanted to invite many of the kids who have inspired the blog, to share our special day. Quite a number of these children have challenges and so we needed to search for a venue, that was not only lovely, but would be able to cater for these requirements. Some of our adult guests also needed ground floor accommodation and there was a lovely annex across from the Italian gardens, which was ideal.

We found everything we could have wished for at Milton Hill House Hotel in Abingdon Oxfordshire;

http://www.venere.com/hotels/abingdon/hotel-milton-hill-house/?ref=755394&#pictures.

The hotel is set in 22 acres of parkland and has numerous out door activities for children (and adults). These include football nets, croquet and giant Jenga, but most importantly they have the space for children to run around and let off steam. The events coordinator Amelia and food and beverages manger Luca, worked tirelessly to meet our many requirements, not least of which varied special dietary requirements. We were able to have a table of indoor activities within the main venue and this helped the parents enjoy themselves in the knowledge that the children were within their sight.

Kathy 'The Cupcake Baker' http://cupcakebaker.co.uk/ is based nearby at Culham. We were we delighted by the presentation, service and great value for money of the cakes. Kathy wasn't phased by the varied dietary requirements and sourced recipes for our a number of our guests with food intolerances. These included vegan, lactose and gluten intolerance.

Finally, I just wanted to mention Daryl from 'Classic Alternative' http://www.classicalternative.co.uk/, who provided our transport for the day. The car, a gorgeous 1952 Pontiac, was spacious enough for the three of us to travel together in the back. I have rarely met a gentleman so courteous, kind and welcoming. Having a child who likes to touch everything in sight, including beautifully polished chrome, may have been a bit of a trial for many classic car owners, but Daryl was extremely understanding of M's needs.

OK so quite a bit of an unashamed plugging in today's post, but we are all still floating about on a rosy cloud this week ; )

Perfect day

2009-09-15T22:40:00.018+01:00

Bubbles and cupcakes after the service

Handsome Husband

Beautiful Car.

The service was held at the church where M was Christened.

I carried the prayer book that Mark's Grandfather gave to Nanny Peg, on their wedding day.

Dressing up

Time for play

The service included a puppet show
And M was given a puppet for being such a star

Happy Day!

On the 12th September 2009, we had a very special service of Blessing, to give thanks and to celebrate our marriage. It meant a great deal to the Dad and I to finally be ready to make our vows to each other in Church. The last few years have been an incredible journey for us, full of highs and lows. We have grown closer together both as parents and spiritually. It was an incredible day and we felt very blessed to be surrounded by our family, church family and friends. The service was lead by our vicar and friend Hugh, who has been a guiding light in recent months. Here are a few snap shots of the day!

Thank Goodness For J

2009-09-09T09:09:00.007+01:00

I have been guilty of sweating the small stuff this week and so a brief conversation I had with our friend J this morning, pulled me up short and made me feel humble.

J " I have autism and that means I am hyper at times, does M have autism?"

Me " No but M has something very similar and he feels very hyper too at times too" Sometimes, being hyper can be a good thing, because it means that M can run really fast!"

J " When we run to the alley and back I beat M twice by two seconds. I can run up and back down the football pitch five times, without getting tired, because I am hyper. I am the fastest boy in my year, but I think that M is probably the fastest in his class, because he is younger than me.

Me " So yeah I guess that there are good things about having a disability and sometimes it means you can do certain things better than the other kids.

J " There is a girl in my class who has dyslexia and she can't add up things in her head. I can add up numbers just like that!"

Me " Actually, M finds it really hard to add up numbers in his head, he needs to use counters or his fingers."

J "24 add 24 is 48, I did that by adding up the fours and the twos."

We reached the classroom by then and both of the boys melted into the throng, without neither a backward glance nor a goodbye.

Summer Fun

2009-09-03T12:47:00.014+01:00

CCamping with Dad whilst Mum took a trip with Nanny

Discovering Rock pools

Giving Dad a helping hand with the chores

The Listening Programme goes on under canvas

Eating Al Fresco

Long Coastal walks in the rain.

You make me wonder what I missed,
and as always are you are my inspiration!

Life is Good

2009-08-16T10:58:00.008+01:00

I'm not going to pretend that parenting a child with special needs is easy, sometimes it can feel like trying to navigate uncharted waters without a map and compass. Yesterday was a typical example of this when M had a complete meltdown. Over the last year or so we have had less of these, but at times it can feel like he goes from nought to sixty on the temper scale, leaving little time to intervene with distraction or calming techniques. I took M aside and found a quiet spot and listened whilst he raged and cried, to give him the opportunity to communicate what was going on for him. I tried to use empathy, so that he knew that I understood what was going on for him and finally I was able to give him little shopping tasks to distract him.

A few minutes later I was stopped by a man who said he just wanted to say how nice it was to see parents treating their children kindly and that I had done all the right things. When I explained about M's disability he said that he had guessed, because as a social worker he had worked with children who had similar difficulties. I have lost count of the number of people who have criticised M's behaviour or my parenting, so it means so much to receive this kind of praise. As parents, we all need that kind of affirmation at times don't we?

In the evening we went to a wedding reception, which was a real old fashioned family knees up. We were armed with computer games, because we are never quite sure how M will react to unfamiliar surrounding. We needn't have worried M was captivated by a little boy who was dancing and it was as if a penny had dropped. To our amazement he mastered this dance
http://www.youtube.com/watch?v=6IRgbJypep4
and didn't sit down for the rest of the evening!

Trophy Time

2009-07-21T17:20:00.005+01:00

Two wet Boys

M astounded us by winning first place in the boys under 8 category of the Long Whittenham 5k fun run. He ran most of the way and I think that the thunder storm and torrential rain, actually helped to improve his time!

Sadly, M was under par, due to a nasty infection, during the Didcot fun run this year, but he still managed 7th place in the under 11 boys category. Considering the calibre of some of the club runners he was up against, we think that the boy done good!

The Listening Programme

2009-07-21T16:51:00.008+01:00

You may have read my post regarding the treatment M received at the Sound Learning Centre at Palmers Green. We attended the clinic for ten consecutive days and M had auditory integration and light wave therapy. I have to say that M's response to this treatment was pretty amazing:-

http://sunshinetc.blogspot.com/2008/03/11-march-2008-sound-learning-centre.html

Since our SALT is a trained practioner of the Listening programme, http://www.thelisteningprogram.com/ we have decided to give this treatment a go over the summer holidays. TLP works by using 'psychoacoustically modified music to stimulate or 'exercise' the functions of the auditory processing system.' Please don't ask me to explain this! ; )

Although the system sounds very similar to auditory integration therapy, this programme involves the patient listening to structured tracks from ten CD's for two fifteen minutes intervals, over twenty weeks. The advantages are that this can take place at home and that children are able to do passive activities such as colouring or lego, whilst they listen to the programme. Whilst expensive, the Cd's are a one off purchase, which can be used regularly, even after the twenty weeks, to maintain the progress.

I have read that some children have had a negative reaction to the programme, but have heard there is substantial anecdotal evidence, that reports significant improvements. That is good enough for me.

I shall let you know how we get on.

Butlins

2009-07-21T16:22:00.006+01:00

M has recently become aware of adverts on TV and this year he decided that he would really like to go to Butlins. The reality was somewhat different than the glossy ads, but M had a brilliant time. He joined in absolutely everything from the football academy to the competitions.

We were very pleased when he was selected to go up on stage for 'good dancing' (even though he dances just like the Dad) M managed to answer all of the questions and spoke clearly into the microphone. Speaking to a stranger let alone to an audience full of children would have been inconceivable even six months ago. You can tell from his body language that he struggled with the last question and was anxious about getting it wrong. I brought home to me how much we take communication for granted and the weight of expectation that we place on our children generally.

Although these days, M speaks clearly and fairly fluently when he is in familiar surroundings, he'll often lose his confidence and revert to single words or short phrases with strangers. It is important that we continue use the OWL methods and avoid prompting children with SLI, in order that they have time to process and respond.

We are very proud!

ICAN's Parliamentary Reception

2009-06-30T22:04:00.002+01:00

“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”.

Comfort and Joy

2009-06-26T12:16:00.003+01:00

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.

Black Sheep Press

2009-06-25T11:29:00.003+01:00

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.

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

2009-06-24T20:27:00.014+01:00

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.

What NOT to say!

2009-06-23T10:31:00.007+01:00

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! ; )

In The News

2009-06-22T22:47:00.005+01:00

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

Daniel and the Lion

2009-06-11T13:49:00.009+01:00

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!

Special Smile for the Sunflower Princess

2009-05-29T13:51:00.011+01:00

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.

Speech and language downloads

2009-05-28T17:06:00.002+01:00

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.

The Birthday Bandits

2009-05-23T20:04:00.010+01:00

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!

A little update

2009-05-21T19:34:00.014+01:00

It’s been a while since I have written specifically about how M is doing speech wise, because I have been a little distracted by the sensory side of things. We have recently experienced another of M's language explosions, since we have been following the sensory diet. M's syntax has improved dramatically, as has the rhythm and intonation of his speech. Whilst pro noun reversal is still a problem, the emergence of the Wh questions has heralded a real jump in the number of new words and concepts he has learned. When M was assessed at age six by the Meath school, he was struggling to follow two stage instructions. He is now following three stage instructions competently and in recent weeks, he has been managing to remember four. He has a small leather bracelet with four wooden beads on his wrist.

His SALT has taught him to repeat back each instruction and to touch each coloured bead by way of multi sensory reinforcement. He is then able to use the beads as a visual aide whilst repeating back the set of instructions, which helps to improve his auditory memory. I was completely amazed after school one day when he was able to re tell a long and detailed story that he had constructed with the aide of a series of pictures, earlier that day.

Being able to read well has really helped strengthen M's vocabulary and he seems to be making far more connections. Adjectives and categorisation seem to be a particular area of strength for him, although his use of the past tense is still fairly problematic. He still says 'didded' and 'hadded' a lot especially when he is tired.

Turn taking, beginning and ending conversations and social language such as saying hello and goodbye is still a problem for M. It struck me recently that he may not tune into faces easily, because he has to look away from a face to process the speech. His EP told us a while ago that he is very single task focused and planning tasks can still be problematic. I am very proud of his progress and am anxiously awaiting the annual assessments from his SALT.

I am hoping that the huge improvements in his functional speech will be a platform for his social communication, an area he still struggles with. I have a visual feelings chart and we talk about the feelings of the characters in the story books that we read together. I feel that the more structured social stories will be more useful in the near future. M is now showing an interest in pleasing others and the other day, he drew and cut out a heart for me that read 'I Love you'. I shall be keeping that one in my memory box, to look at when he is a grotty teenager.

To put into context how these improvements have impacted on M's progress at school, one of his IEP targets at the beginning of last year was to sit still on a yellow spot at carpet time. M now volunteers to do tasks in front of the class on a white board. He enjoys making the other children laugh with his ability to mimic and his sense of humour. M also loves anything to do with dressing up and role playing. On days when things have been difficult for M at school, I have to remind myself just how far he has come.

Today's link was recommended by a Mumsnetter and is for a blog called Autism Games which is written by a speech and language pathologist http://autismgames.blogspot.com/. Whilst it is based around children on the autistic spectrum, I feel that some of the posts would be useful for parents of children with SLI, especially for those with younger children.

Autism genetic break through

2009-05-19T16:55:00.003+01:00

Well it is official, I am definitely losing my memory. Firstly today, I managed to delete all of my links and have had to page through the bog from day one to reinstate them. Then, when the Dad kindly sent me a link to the Daily Mail article on this news:- http://news.bbc.co.uk/1/hi/health/6369347.stm I insisted that I have already written a post on it!

Nuts and Bolts # 2. How to help your child to cope with Bullying

2009-05-19T10:58:00.011+01:00

This workshop was pretty enlightening, not least because we were able meet other parents of children who have experienced bullying. The mood of the group was unsurprsingly subdued and some of the stories pretty grim. The course was run by Mencap and I was shocked by the statistics quoted from the NAS ‘B is for bullied’ report:-
http://www.autism.org.uk/bullyingengland
The report on a study of 1400 children on the autistic spectrum, states that 40% of children on the Autistic spectrum are bullied. Another study investigating the bullying of children with special needs found that 54% of the children surveyed in mainstream schools had been bullied and that 25% of these children had been excluded for their own safety.

Bullying includes persistent verbal abuse as well as behaviour which constitutes physical harm. This includes name calling (particularly names relating to the child's disability), excluding children from conversations and play, ganging up or groups of children who send children to Coventry. In short this is anything that reflects sustained behaviour which undermines children with or without disabilities.

The group leader gave some general advice such as keeping a detailed log of the incidents including dates and locations, both inside and outside of school. This would form the basis of a report of evidence, in order that schools can investigate the matter thoroughly. She also indicated some signs to look out for, which may indicate that a child is being bullied. These include torn and dirt clothes and withdrawn behaviour and changes in temperament or a child refusing to go to school. We have experiences all of the above over the last few years.

She also suggested that parents should follow the school complaints procedure from speaking to the teacher through to complaining to the board of governors. If matters cannot be resolved this way, the next step is to speak to the local education authority and the LEA anti bullying officer. In cases where the matter cannot be resolved locally, parents can consult The Children’s Legal Centre http://www.childrenslegalcentre.com/ for advice.

Each school should have a disability equality scheme which should enable to school to positively discriminate for children with disabilities. In our case this has taken the form of the school allowing me to drop M off a little later and collect him a little earlier. Schools should also have an anti bullying action plan, of which a copy should be available to parents on request.

In the event that a child is affected severely enough mentally to warrant being kept away from school, parents should obtain a medical certificate from the GP.

The group leader also suggested some strategies that have worked well in other boroughs such as a buddy scheme, circle of friends and a school map with safe places, for children who feel vulnerable. there are also a number of useful organisations that I shall post on the sidebar under bullying.

NIDCD

2009-05-19T09:36:00.004+01:00

Today's link is for an article from the US National Institute of Deafness and other Communication disorders website. It gives a fairly extensive view of speech and language development and includes language milestones and lists of useful US organisations.

http://www.nidcd.nih.gov/health/voice/speechandlanguage.asp

Parent Partnership Nuts and Bolts Day #1. Social Communication

2009-05-17T21:04:00.013+01:00

On saturday we took the opportunity to attend a conference for parents of children with special needs. This was run by Parent Partnership and there were a number of workshops to choose from. These ranged from specific disabilities such as ‘Living with ADHD', to more general workshops on bullying and CAF and TAC. The children were also catered for and were able to choose from activities such as messy fun, football and chilling with songs and stories. I was really impressed by the way the event was run and by the stalls which had leaflets and resources for children with special needs. We will definitely be paying a visit to Thomley Hall activity centre http://thomleyhall.org/ which is a play which is designed to be safe for children with disabilities.

Since each workshop was worthy of its own post, I shall start with the ASC workshop on social communication. It was run by an SALT and special needs teacher and kicked off with a brief chat about the issues that a child with ASD may have when it comes to communication. These included the obvious language barriers for some, lack of eye contact and repeated loss of concentration, for those unable to screen out the sensory output around them.

We were split into two groups and played games to that would help with social communication. One team were asked to hold up a card with an object or card detailing a specific interest and they were asked to list three facts about the subject, before letting the next person take a turn. This was designed to help the more verbal children on the spectrum limit the amount of time they are allowed to speak and to practice turn taking. In our group we played a game which was like a non verbal version of Chinese Whispers. The first person would pull an exaggerated expression and the next would mimic this to the next person and so on, all around the group. This is designed to help children tune in to facial experssions and emotions. We also played a game where you had to give a mane for something in a certain category such as a zoo animal or a girl’s name. This again reinforced turn taking and categorisation.

We were given lots of hand outs with strategies such as allowing the child to draw cartoons in order to help express a difficult event, and using PECs to help with social skills such as saying ‘hello and ‘goodbye (we haven’t managed this with M yet.) It was suggested that the child is shown the picture sequences repeatedly and praised when he/she complies. We have used drawing as a medium to help M express himself, from about the age of four. He is now a pretty talented and prolific artist. I think that the cartoons will help to take this on a stage, although M has now started to write notes and is beginning to touch type. This again has been a real platform for learning and expressing ideas. There was also a hand out which detailed how helpful labelling, sequencing and visual timetables are, which I can already second from personal experience.

Finally we had just about time for a question and answer session. One of the Mothers wanted to know how she could stop her young son from hugging everyone in sight. I was really impressed with the idea of presenting people in coloured circles, which start with the child in the centre, through to family and friends and eventually strangers in different colours. The idea is that you take the child to the chart to explain when and whom it is appropriate to share different behaviours with. I am going to give this a go with the shouting problem which seems to be a tough behavioural nut to crack at school. I also liked the five point scale PEC style chart for both voice volume control and from anger to calm to help children articulate how they are feeling. I shall also be pinching both of these ideas.

M coped well except for one minor episode when he was hot by another child and wanted to retaliate, the play worker got him to squeeze her hand, a distraction technique similar to our silent whistle. All in all it was a really useful day.

The Great British Countryside

2009-05-11T16:57:00.008+01:00

For those of you tuning in for helpful advice about speech and language, you may be excused because I am about to spin a yarn. About a year ago my doctor advised me in no uncertain terms that I must loose at least a stone and a half in weight. I should, she chirped brightly, forget the gym and walk for forty minutes a day, five days a week. I have managed to loose about twelve pounds, but the dial on the scales has stuck stubbornly in the same place since the New Year.

At the weekend the Dad bought a book of circular country walks in our neck of the woods. Since the day dawned bright and fair, we headed off to a local beauty spot for a long ramble. When we arrived the Dad realised that he didn’t really know which direction the walk should start off from, since we didn’t have a compass or an ordinance survey map.

A very cheery looking woman strode into view, wearing a dark blue turban, luminous pink socks, three quarter length trousers and a large orange fleece. Since she looked the friendly sort, we asked her if we could kindly help us with directions. She snatched the book from the Dad and declared that we should follow her, since this was her Boxing Day walk.

“I’m not going to take you down that way”, she said “because this walk is my treat for doing the recycling. I know the walk you want to do, because it is my Boxing Day walk." She repeated. "One can come up here to get way from the b----y family” she quipped. We wandered over hill and dale, trailing limply and despondently behind the lady. “Oh it’s a day for the great outdoors” she boomed “I’ve got rid of the telly, well not the telly but a telly” “Oh right yes” I agreed in a small voice. She eventually handed the book back to a hand, now worried looking Dad and waved us off cheerily in the direction of some woods.

We trundled through the woods (which I have to say were beautiful) and across a field where we were chased by a herd of goats. I swallowed a fly, argued with the Dad about which set of arrows we should be following and nearly expired climbing a gentle slope (read gigantic hill) I hate to admit that some of the stiles were so high that I couldn't’t lift my leg over without assistance! (Oh that it has come to this!) How glad I was to finally see the car.

"Fancy a bar snack?" said the Dad "Go on you've twisted my arm," I replied just a second too soon to be convincing. On reflection, I have to thank God for great British eccentrics. We are a hale and hearty breed!

Stephenson's Rocket

2009-05-10T22:04:00.009+01:00

Blenheim Last year

I am sorry for the resounding silence lately, I seem to have lost my blogging voice a little of late. When I was a child I was mortified at being given the nickname Stephenson's Rocket. http://www.bbc.co.uk/history/british/victorians/launch_ani_rocket.shtml This was bestowed on me by a delightful teacher, who was referring not only to my surname but also with irony, because I learned French at a snail's pace.

I wish in retrospect that he could have seen my son today, since I should imagine he would have been forced to eat his words. M's first race of the season was held in the beautiful grounds of Blenheim Palace. It was a one mile fun run and he finished 30th out of 158 finishers. M came in 2nd in the under nine category and was competing against many children from good athletic and running clubs. He finished in 7 minutes 18 seconds, shaving 50 seconds off last year's time. The core stability exercises in the sensory diet have obviously paid off.

I was even more impressed by the fact that M managed to speak into the microphone, for a local radio station that were covering the event. For a child who up until recently was often rendered mute, this is a massive achievement and I hope that you will forgive me for having a proud Mummy moment!

Overheard

2009-04-24T21:18:00.005+01:00

Darling Grandad, I must be miffed or else I should have referred to him by his honorary title 'Spuds,' has taught M to parrot back everything people say to him. I was rather touched when I over heard this exchange between him and the Dad the other evening;

The Dad: Hello M how are you today?
M: Hello M how are you today?

The Dad: Daddy is brilliant!.
Matty: Daddy is brilliant! .

The Dad: Daddy is the best Daddy in the whole wide world. (The Dad does have a rather over inflated ego at times)

M: Daddy is the best Daddy in the whole wide world. (No, the other bit was an aside)

The Dad: I love Daddy better than Mummy. (Don't worry I'll get him at playtime)
M: I love Daddy AND Mummy better than anyone.

I was rather pleased!

Stanley I Greenspan

2009-04-21T16:48:00.013+01:00

I don't know it's like buses, no posts for ages and then you get three in one day. I have unashamedly pinched this link from Mumsnet, since for the first time in a long while I feel quite excited about reading something new.

www.icdl.com/distance/webRadio/documents/2-26-2004.pdf

The radio transcript details an interview with Stanley Greenspan into his study into the misdiagnosis of autistic spectrum disorders.

Greenspan gives some examples of other developmental disorders which may produce traits similar to those common to children with autistic spectrum disorders. He suggests that children who have speech delays, for instance may repeat back the words they hear (echolalia) as a strategy to help them process the language. Our first independent SALT, referred to this as a key factor in M's speech.

Similarly, he suggests that children who are under reactive to touch may jump and bounce to arouse the central nervous system. Greenspan also mentions that children who have gross motor planning problems may repeat movements over and over, (self stimming) to help with sequencing skills. Since sensory modulation, integration and gross motor planning skills have all been flagged up by our recent OT assessment, this article rang very loud bells for me.

Our SALT pointed also out that, despite some rigidity M has a clear capacity for abstract and independant reasoning. The ICAN report also referred to his excellent non verbal communication skills such as tuning into facial expressions and use of gesture (although this isn't the case with strangers). Whilst I am sure that I shall read other articles or books which may throw the possibility of autism back into the mix, I am so grateful to have a seemingly rare moment of clarity.

This link is for Dr Greenspan's website which gives more info on the Floortime programme. http://www.stanleygreenspan.com/

Caring Cutlery

2009-04-21T10:35:00.002+01:00

Since I am feeling guilty about my lack of posting lately, I shall do two today. Whilst Matty's fine motor skills have improved, he still has problems integrating his left and right hand when using a knife and fork. The junior caring cutlery st, whilst useful is now a little small and I have ordered an adult set from this website http://www.focusondisability.org.uk/cutlery-kitchen.html

The price of these items can vary enormously, but I thought that this site was very reasonable.

A trip to the Grandparents

2009-04-21T10:06:00.014+01:00

Trees to climb

Plants to water

Best pals

and puppets

Grandad is an ace puppet maker

Perfect Pitch

2009-04-07T21:39:00.009+01:00

Although it rarely happens I think I have just had one of those lovely days that has flows easily from hour to hour. I managed to get a good nights sleep, after a week of sleepless nights and M has been.... well positively delightful. We have been using our new Now Next Later chart and I have been reinforcing this by giving him the same cues to repeat back, when we are out and about.

Occasionally I am hoodwinked into thinking that he is just like any other child on a day out. We went into Pangbourne on a train, counted the stops and named the stations along the route. There was a bit of a wait before the train departed and M gave the magic numbers 1, 2, 3, 4 and five, just like Peppa Pig, and hey presto we were off. This was, he informed me gravely, proper magic.

We had lunch in a cafe 'Lou La Belle' and found a basket full of lovely children's books to read. M found one about a magician and a magic dragon egg, which fitted in nicely with our latest obsession around the film 'The Water Horse' this week. He read to me beautifully and I marvelled at how well he has progressed in the last few weeks.

It was only when surrounded by children at the local park, that I noticed the big differences, between M and the neuro typical kids playing there. "What is your name?" asked a very pretty and eloquent little girl aged about three. M mumbled his name under his breath and refused to make eye contact. "What is your name? I willed him to say silently from where I sat watching. It wasn't to be, M had spied a young boy sprinting round the outskirts of the park and as usual expected to be allowed to join in the middle of his game, without exchanging any social pleasantries. Occasionally, M would bellow "Its a strawberry!" Or "Hello Mr Bumble" to anyone who might be interested.

Out of the corner of my eye, I saw the posture of the boy's Mother change almost imperceptibly. She drew back her shoulders and drew her lips up into the shape of a cat's bottom. Her nostrils flared slightly, as if she had suddenly noticed a bad smell. " Giles come here now and play with your brother!" she trilled. An obliviously M took this as an open invitation to join them on the see saw and as there was no seat, he balanced himself precariously on the middle of the bar, grinning beatifically.The Mother glared first and him and then across at me and her hands flew to her hips.

With a small sigh, I realised that it was that it was probably time to go and called across to M to ask him to gather up his things, " Would you excuse me for just one moment please" he quipped with perfect pitch and in our speech and language therapist's rather lovely voice. As the lips of the Mother dropped into the shape of a perfect O, an imaginary fist in my head punched the air and I thanked God for echolalia.

Anthony Browne Day

2009-04-02T16:27:00.016+01:00

Little Beauty

King of the swingers

' Oh Oooh Bee Doo, I wnna be like You hoo hoo!'

M’s class have been studying books by the Author Anthony Browne, for their Topic this term. The children had an open afternoon to show case all of their hard work. They were asked to dress up as one of the characters and M's costume arrived a few weeks ago. Whilst strictly a monkey suit rather than a gorilla outfit, M was so delighted with it that he has been trying it on constantly and counting the sleeps until he could wear it.

Early one morning he gave me the fright of my life, as I stumbled into the kitchen still drowsy from sleep. I suddenly spotted a huge orange shape out of the corner of my eye, moving across the climbing frame at lightening speed. I have to say that the sensory diet seems to be giving M Super Powers when it comes to balance!

He decided to go as as the gorilla from 'Little beauty' an ape that has learned to communicate by signing.

http://www.independent.co.uk/arts-entertainment/books/reviews/little-beauty-by-anthony-browne-945058.html

I love Anthony Browne's books, since they tackle the subject of feelings and this one seemed particularly apt, because it deals with anger. We have been trying our best to use strategies at home, to help M express his anger in a safe and appropriate way. We all have to sit on the time out stair, if we use our shouting voice or rude or unkind words.

I think that children learn best if you model the way you'd like them to behave, rather than setting a set of rules around manners that you don't follow yourself. For a child who spoke so late, speech is still very functional and M has a tendency to say it as he sees it. Whilst we are using lots of books about feelings and social stories, the subtleties of polite conversation and manners still often evade him.

M's work was brilliant! He had made a beautiful hand puppet, worry doll and had written some really fantastic stories. We have given M three extra reward points this week and an A for effort!

The Reading Half Marathon Official Photos

2009-04-02T16:20:00.005+01:00

Just Enough left For A Sprint Finish.... but it hurts!

Home Straight

A Strong Start

(Photos by Marathon Photos)

The Autism File

2009-03-31T17:00:00.015+01:00

http://www.autismfile.com/

I nearly flicked past an article on six ladies featured in one of the Sunday Supplements. I saw the photo of six glamorous and and seemingly high profile women and it was only when I spotted the word Autism that I gave the article my full attention. The women have been photographed by Terry O'Neill to raise awareness of Autism for Thursday's United Nation World Autism day. They are campaigning for mothers of children with Autism, across the world to get together in groups of six to be photographed striking the same pose, in order to ' Show how autism mothers are strong and are 'Delivering Where Governments Have Failed'.

It was actually quite refreshing to read the stories of these successful women, speaking so passionately about a condition that is often considered to be 'invisible' to the outside world. It struck me and not for the first time how disabilities can strike at the heart of any family. When things are difficult and I am feeling low I sometimes ask 'why us?' but I already know that the answer is 'why not? ' I love the concept of these photos raising awareness, by making the parents and advocates visible through media images.

The Autism file is a journal set up by Polley and Jonathan Tommey. It has been running for the last ten years and from what I can gather is pretty extensive in its content. There are links to the Autism one radio station, book reviews and blogs, together with articles written by parents and doctors. The journal is published magazine format quarterly. There is also a helpline for parents in need of support. The couple have also set up The Autism trust, in order to raise funds to build a community for 50 young adults with autism. http://www.autismtrust.com/default.asp Please take time to watch the video if you can. This Telegraph article also gives more insight into the project and what the Trust hopes to achieve http://www.telegraph.co.uk/culture/3559925/Autism-A-different-life.html

The Dad the run and ICAN #2

2009-03-29T21:36:00.012+01:00

Those of you who have read my blog before will know of our involvement with ICAN and their help in obtaining the right diagnosis and help for M. Our ICAN story and information about the organisation, can be found on the left hand sidebar. The Dad has been training, very diligently, for some months to run in The Reading Half Marathon. He has also been raising money in sponsorship, on behalf of ICAN, by way of a thank you to them for the difference they have made to all of our lives.http://sunshinetc.blogspot.com/2009/01/dad-run-and-ican.html

We feel very honoured to live next door to Stan Eldon, former Olympic athlete and one of the founder members of the race. Stan recently reieved an MBE for his voluntary services for sports and athletics for the disabled:- http://www.getreading.co.uk/sport/s/2041510_queen_presents_mbe_to_post_writer_stan

The Dad was pleased to see Stan start the race and to received a blast of encouragement from his hooter.

It was a lovely day, fantastic atmosphere and there was plenty of support from the locals. He particularly enjoyed the music on route from various bands, musicians and even some stereos. The Dad completed the course in two hours five minutes and raised a tidy sum for ICAN. I am very proud of the tired and foot sore veteran runner!

The God Book

2009-03-27T22:02:00.004Z

The Dad is my favourite guest blogger, and since I have been a little lacking in blogging inspiration lately, I shall hand you over to him this evening .

We make a lot of choices for our children. We decide certain things on their behalf, until such time as they might be able to make choices for themselves. Hopefully, as they grow, we allow them to change some of those decisions based on their choices. One of the decisions we have made for our son is to bring him up in the Christian faith. This isn’t always easy for a child with a language disorder, but recently we have extended story time when M goes to bed. So now we have M reading to me about Biff, Chip, and Wilma’s latest adventure; and me reading to M a story from the Bible….or “The God Book” as he recently renamed it.

Now The Lion First Bible is excellent for any child, but particularly for a child who needs pictures as well as words to learn, as it has many illustrations to add to the stories. And so, over the last few nights we have had a number of stories from the beginning of this book, which has highlighted an interesting theme…and need for M, highlighting one thing that, at least in M’s eyes is missing from the pictures…..

Day 1 – How the World Began

The Dad (reading) “So God made the first man and the first woman, to look after the world…”

M “Is that God?”
The Dad “No M, that is Adam. God made Adam. God isn’t actually in this picture”

Day 2 – The First Sad Day

The Dad (reading) “God made the beautiful garden of Eden for Adam and Eve to enjoy….”
M “Is that God?”
The Dad “No M, that is still Adam. God still isn’t in this picture”

Day 3 – Rain, Rain, Rain

The Dad (reading) “Noah did as God said. He always did as God said….”
M “Is that God?”
The Dad “No M, that is Noah. God isn’t in this picture either”

…….

Day 7 – Jacob Runs Away

The Dad (reading) “…Jacob had a dream. It was a good dream. In his dream there were stairs right up to heaven, with angels going up and down them! Then God was right there….”
M (certain God must be in the picture now – God after all ‘right there’)
“Where? Is that God?”
The Dad “No M, that is Jacob dreaming. Sorry, but God isn’t in this picture either”

Now the Christian part of me is used to us all wanting ‘proof’ of God, but how difficult a concept is this for a child with SLI? The poor boy learns from pictures more than words and none of the pictures have the main man there!

BBC News item

2009-03-24T21:01:00.002Z

Just a quick post this evening to report this rather lovely item. I'm pleased that my favourite super hero saved the day, yet again

http://news.bbc.co.uk/1/hi/world/asia-pacific/7961208.stm

A Happy Mother's Day

2009-03-22T22:03:00.009Z

Here is my Lovely Mother's day butterfly, which I had intended to photograph before it got covered in spaghetti Bolognese. I am very proud of M's efforts even though he may have borrowed some of the lines from Anthony Browne. I know this only because, I am by no way shape of form a good cook. M was so excited to give it to me he bounced up and down like Tigger, on the pavement outside school.

I was so pleased to receive it, I bought him an ice cream from the van in celebration. M seems far more loving these days and so it is so nice that he is finally able to express his affection. It is something that most parents would take for granted, but being able to write his feelings down, in a card like this, is a huge deal.

The Dad pulled out all the stops to make today special for me and my own dear Mum. We had a lovely roast followed by a trip to a local farm. Bumble and Spuds had M over night, so my favourite gift, was a lie in and time to actually get out the best china and cutlery, to make the table look nice for once.

Thanks to all my special people and Happy Mother's Day to all!

Mediscape article by Caroline Cassels on a study of Auditory processing and Autism

2009-03-16T16:45:00.009Z

Today's link which has been provided on by Mumsnet poster Nikos.
http://www.medscape.com/viewarticle/584572 It is an article by Caroline Cassels, on the RSNA 2008 study by Timothy Roberts, 'which may explain language delays in autism.'

Using brain imaging equipment MEG, it was observed that children with ASD showed a small but significant 'delay in processing vowel sounds and tones'. It was reported that the greater the delay in processing the sounds, the more serious the impact on speech development. Dr Roberts also suggests that MEG may be a useful tool is diagnosing autism, since it does not rely on a patient cooperating in behavioural tests, to which some children with ASD are resistant.

Potty Time

2009-03-12T16:23:00.010Z

This is a pic of two pals and their pots. Simon and M were as happy as pigs in mud yesterday, which is probably a pretty accurate description of the state that the pair got into. We are growing giant sunflowers (hopefully). The disaster that was my garden is of the boy made rather than natural tornado variety.

Last week I told two little boys, who have a very literal sense of language, that they may dig around in my flowerbed. This was because I had caught the pair excavating one of my neighbour's boundary stones, to discover what lay beneath. When I said that they could dig, I had in mind a gentle scrabbling around or panning for gold on the surface of the soil. What I have is a hole which is getting on for two feet deep, as I had underestimated Jay's enthusiasm. I shall soon be needing my copy of 'Gardening with kids' in order to put the plot back into some semblance of a place where things actually grow!

http://sunshinetc.blogspot.com/2008/10/gardening-for-kids-by.html

Sometimes....

2009-03-06T20:47:00.003Z

Sometimes when we have a really rotten week there are moments that shine through the gloom like a ray of sunshine. M really wasn't himself this morning when we started to get ready for school, he had a temperature and there were purple shadows under his eyes. I don't think that he really knew which part of his body the hurt was coming from, but his uncharacteristic complaining convinced me that he had better have a day off from school.

We read a book that I shall be reviewing shortly about disabilities and as painful as it was we had 'that discussion' We talked about things that we were good at too and I explained that I could not build anything other than brick walls form Lego, when I was a little girl. To rub into salt to the wounds, he then insisted that I try and build a Lego house whilst he looked on roaring with laughter.

Then we had to be worms gliding across the floor, which is no mean feat when you are fat and forty. We laughed and laughed til our sides ached and he turned to me and said "I love you Mum." When I thanked him profusely he turned to me and said "No I really REALLY love you Mum."

All Kinds of feelings By Emma Brownjohn

2009-03-01T20:46:00.007Z

There has been a shadowy spectre prodding me in the back for some time now and it took me a while to realise that it is in fact my conscience. I know that I have to talk to M about his disability and I have been putting this off. The recent spate of verbal bullying incidents at school, are showing no sign of abating. I am painfully aware that M is upset about being different from his peer group. This is the downside to inclusion because there are few places for children with special needs to retreat to, in open plan schools like his.

Help has come from an unexpected source. I have been working hard on talking about feelings and helping M to manage his anger. Although I have no doubt that he feels empathy, his grasp of the right ‘label’ for want of a better word for each different emotion is very subtle.

We have been sharing this wonderful book by Emma Brownjohn. The book really held M’s interest, as there are flaps to open and wheels to turn and each emotion is beautifully illustrated in the pictorial format that he needs.

When we came across a page about about other people feeling prejudice for all sorts of reasons including disability. there was a picture of a child with one leg and we talked about disabilities that we could see and some that we can't, like finding it hard to speak.

Suddenly, I could almost see M making the connection and the floodgates opened. He was able to articulate how he had been feeling. “They call me Tele Tubby because I speak like a baby” He said. “And how does that make you feel” I asked softly. “Sad and Angry” he said emphatically, with blue eyes brimming with tears. The book says that sometimes when people feel things about us because we are different, it is unfair and wrong!

He's really growing up

2009-02-22T22:18:00.018Z

M has had a really great week and we have had one of his language spurts. He is using past and present tense more freely, although we still have a few diddids and haddids. His sequencing skills are really coming on too and he can give us an idea of the chronology of events from his past.

This evening M took a liking to one of my dust covered exercise DVDs. All week he has been urging me to do some exercises on the telly, 'like when I was a little boy and laughed alot'. I couldn't quite winkle out the reason for this new found interest in my fitness levels, until he explained that he'd rather like me to be able to do back flips and save Lazy town like Sportacus.

I wish I had introduced him to Davina long ago. Not only did he manage to keep up with every thing and do a whole hour, he was chatting with her as she shouted encouragement through the TV. I thought that his improvisation with tins of spaghetti for weights were particularly resourceful too!

EARTH FROM THE AIR AT OXFORD CASTLE

2009-02-20T10:50:00.010Z

M with Lucy and Jim at Oxford Town Hall

The world at his feet

We had a fantastic day yesterday, with Lucy and Jim. We visited a museum in Oxford, which I have to say is the whilst interesting, was the least child friendly place I have ever visited. I'm sure one staff member was following us because at every turn she bellowed "Don't touch, don't run and don't breathe" Suffice to say that, whilst I won't name and shame them, we won't be going back!

On the way back, by chance we decided to have a look around Oxford Castle.
We were amazed by this exhibition

http://www.wecommunic8.com/earthfromtheair/

'EARTH FROM THE AIR AT OXFORD CASTLE, by Yann Arthus-Bertrand, is an astounding exhibition of 120 giant sized floodlit pictures. It is a photographic portrait of our planet illuminating its beauty whilst raising awareness of man’s impact.'

The giant photos were stunning and the kids totally engaged. The sheer diversity of the subject matter and scale of these photos are hard to describe. The sight of the man made and natural disasters were the most moving for me. The exhibition ends on Sunday so I shall be taking the Dad tomorrow They evoked every emotion possible and I walked away thinking "Oh Lord what a mess we have made"

'My Funny Valentine'

2009-02-14T16:01:00.012Z

http://www.youtube.com/watch?v=YP6MAo57zdA

We were very pleased when M arrived home from school yesterday, with this rather lovely offering. I am rather hoping that he meant 'dear' rather than 'dire' parents!

We spent this morning shopping for all things sensory. Our haul included a balance ball and hula hoop. I realised that we had turned a pretty big corner when M told me several times that the noise of the people talking and music hurt his ears. We bought a rather unsuitable pair of earphones, but I have just ordered these,

http://www.amazon.co.uk/KIDS-GREEN-EAR-DEFENDERS-PR0TECTORS/dp/B000VWP9BW/ref=pd_cp_ce_2?pf_rd_p=136153791&pf_rd_s=center-41&pf_rd_t=201&pf_rd_i=B000O31HOQ&pf_rd_m=A3P5ROKL5A1OLE&pf_rd_r=0JAPW196ENFAS6AEK73D

I shall let you know how are sensory diet is going very shortly, but the massage with lavender oils, and blanket rolling, have definitely had a calming effect.

This scooter board;

http://www.benefitsnowshop.co.uk/shop/detail/3388.htm

is absolutely fabulous and so much fun. I hope that it helps with his coordination too.

We have also purchased a weighted neck wrap that can be warmed in the microwave from this ebay seller (also recommended by our OT)

http://stores.ebay.co.uk/therapistchoice_Weighted-Items_W0QQcolZ2QQdirZQ2d1QQfsubZ10385724QQftidZ2QQtZkm

The weighted vests sold from by this seller, seem very reasonable, compared with others I have seen.

Happy birthday dear blog

2009-02-09T08:53:00.004Z

I can't believe that it is a year since I started writing about M's journey. Putting my thoughts down in writing has not only been cathartic, but it has given me a permanent record to refer back to. I have met some wonderful people, who are dealing with the same issues Total Chaos, Shells and Roaring Mouse spring immediately to mind. I've gained a wealth of knowledge from speaking to people and hearing their stories and felt most honoured to have the multi talented Donna Williams drop by and leave her comments.

Sadly, I feel I must scale back on my posts. It is not so much that I have run out of things to say (family and friends can wipe off that smirk) but more because I seem to be having more and more trouble juggling every one's needs including my own. I hope that when I do drop by to write a post, that they will be heavier on content. All that remains is to say a big thank you to all of those who have followed the blog and kept me going with your encouragement.

Minor Musing

2009-02-07T19:48:00.004Z

Two things happened today, that made me really tune tune into the implication of language disorder for M. Despite having problems with a small number of children at school, M does have some of the most wonderful classmates. One little boy in particular, idolises M and is a loyal companion. Whilst out in the car today, I was relaying a story to the Dad about a conversation, that this little lad had with his Mother. She had been asking him if he would like to have some posters for his bedroom wall and if so which super hero he would like. He answered that he would love a poster of M! On overhearing our discussion, M got into a bit of a flap and I had to adapt my choice of words to explain what had been said. "I can't be a post" he said "No" I replied "he wants a picture of you to hang on his wall" The bottom lip trembled and he squeaked "I can't be on his wall, how would I get down?"

Later, M had been downstairs watching a DVD for some while. I often worry a little if things are too quiet, so I padded down to join him. It was his favourite Sponge Bob movie, but he had watched the whole thing in German. "Can you understand what is happening M?" I said "because its a different language and I don't know what they are saying" He eventually tore his eyes away from the screen and said "Yes because I can see what is happening!" It occurred to me that, whilst these children have to find totally different mechanisms to make sense of the world, they arrive at the same conclusions the end.

Whoooooeeeeeeeeeeeee!

2009-02-06T14:56:00.008Z

Too slow, too fast, just right!

Speech language and ABA

2009-02-05T08:02:00.004Z

We have well over four inches of snow so I shall keep it brief today. I came across this blog http://www.speechandaba.blogspot.com/ recently, which is pretty illuminating.We have briefly explored ABA, but I found that in some ways the concept didn't seem to sit well with the speech and language pathology route. This blog gives examples of ways in which the two may work together harmoniously.

This site http://www.mariposaschool.org/curriculum.html which was recommended to me, explains ABA in more detail.

Verbal Bullying

2009-02-04T13:11:00.008Z

I have been putting off writing this post for a long time. As the parent of child with with fairly complex difficulties, the issue of bullying has been a complicated one. It is part of my nature to protect my child with the ferocity of a miniature Yorkshire terrier. In other words I have to bite back my instinct to snap at children and indeed the parents of children, who are unkind. People judge M by his behaviour, often without appreciating his disability. My Mums eye view of M's early years at school, seemed like an exercise as painful as cutting my milk teeth. We had the slow realisation that M's problems were not transitory and a prolonged plod towards an inevitable diagnosis.

As M's Mother, I felt his pain acutely and I am sure that this coloured the way in which I reacted to the name calling and nastiness from other children. I can now take a step back and look at this objectively. Teasing and goading is an inevitable part of growing up, I sometimes think that it is almost a rite of passage. The problem for me is that M is not socially or emotionally equipped to deal with the escalation of the 'Get M' games and the gradual slide from fairly innocuously 'naughty M' and 'Baby' to labels such as 'retard' or 'idiot'. His reactions to this, coupled with his language and sensory difficulties, have resulted in him changing from a placid toddler to an angry and aggressive, confused school boy. It isn't just a bit of fun, or kids just being kids and it really isn't OK.

This link to BBC Ouch its a disability thing:- http://www.bbc.co.uk/ouch/fact/ouch_q_a_12_bullying.shtml has help me to sort out the wood from the trees, in terms of when I need to let things go and when to make a stand. I don't view the children that torment M as being 'bad' kids, they are merely struggling with their own feelings . I do see the need to help nurture a good understanding of disabilities and differences from a young age, in order to help stamp out these prejudices.

AFASIC

2009-02-03T20:02:00.005Z

I have recently come to the point where I feel I have a reasonable grasp of M's difficulties. It has been a long haul to get to this point and it hasn't been made any easier by the different opinions of professionals, that we have seen along the way.

I am finally happy that the specific language impairment label best fits M. There are a number of differing opinions about SLI and I have found it very hard to fully comprehend where this differs from severe language delay. I have found the AFASIC pdfs quite interesting, although I have to confess that I only have an understanding of the content, from a layman's perspective. The pdf on specific language impairment is of particular interest, for obvious reasons:-http://www.afasic.org.uk/pub.htm#glossary

This http://www.kidsource.com/NICHCY/speech.html Link is also useful.

A special day

2009-02-02T20:18:00.012Z

Cheating a bit as this one was taken last year

It has been a beautiful day today; everything felt soft and muffled. The Dad and I visited the gorgeous venue, where we will be hosting something rather lovely later in the year. I shan't tell you about it just yet, as I have that strange sense that it is fragile, like one of those iridescent bubbles that M loves to blow and burst. It seems strange to be planning a celebration, in these difficult times.

On the way back, we drove past the school and I caught snatched glimpses of M through the gaps in the school hedge. He was rolling a huge snowball across the school field to make a snowman. M's eyes were bright and his face flushed, with the cold and exertion. He was completely absorbed and connected to the everything around him.

After school, the Dad took M out up on to the mound. Father Christmas had bought a bright red sledge and they spent over two hours making good use of it, by sliding down the huge slope. I was heartened to hear that M shared his sledge with a little boy who had been resourcefully trying to use a body board, with little success.

M came home calm and chatty and he ate a huge dinner. He fell asleep as soon as his head touched the pillow. It occurred to me that these boys really should be outside doing rather than sitting inside a classroom.

The lovely surprise

2009-01-31T20:07:00.008Z

The Dad came home early on Thursday to bring me something rather lovely.

He had spent many hours working on this beautiful book.

With the help of http://www.mycreation.co.uk/photobooks.php

(Even the back ground is made up from photos)

It is the story of M's early years with a lovely tribute to me on the back page.

Thank You x

Supportive Behaviour Management

2009-01-30T12:26:00.005Z

I was really pleased this week to receive an email from Mike Temple, behaviour expert and author of this website http://behaviourmanagement.ning.com/
Mike has had extensive experience working with challenging students, within mainstream education.

He describes SBM as ‘an inclusive, emotionally intelligent approach to behaviour management which open the doors for teachers and pupils to access on-demand support and strategies to manage the sometimes difficult situations that can occur in the classroom’

In this video link to a Teacher’s TV item on behaviour management, Mike explains the impact that exclusion from school has for children with emotional, behavioural and learning difficulties and how SBM may be used to help them .
http://www.teachers.tv/news/31486

The Dad and I have put a lot of thought into the language we choose, when dealing with difficult behaviour. The importance of this was emphasised during the ICAN and Parent workshop: - http://sunshinetc.blogspot.com/2008/04/friday-040308-i-can-workshop.html and the parent line plus parenting course:-http://sunshinetc.blogspot.com/2008/03/13032008-parentlineplus-getting-on-with.html. I really liked Mike’s link to the ‘Teacher’s at risk blog’ http://www.teachersatrisk.com/2009/01/09/this-is-not-a-punishment/ to a post about the words we choose to speak to children who are disruptive in class.

My final link from this excellent site is to ‘My Tree’ http://behaviourmanagement.ning.com/profiles/blogs/emotions-tree this enables children to pick a character, whose emotions they identify with, In order to leave a post which expresses their feelings.

Mozart

2009-01-27T17:45:00.010Z

I have been on a quest this week to source all of the tools and equipment we need, to begin M's sensory diet. One of things suggested was the calming effect that Mozart or Gregorian chant music has, for children who suffer auditory defensiveness. Some Gregorian chants are winging their way to me courtesy of Lily, my learned sister.

I was interested by this article, written abort the calming effect of Mozart music for a group of schoolboys with behavioural difficulties, in a school in Aberdare:- http://news.bbc.co.uk/1/hi/uk/387632.stm

The article mentions the Tomatis listening method, which seems to work on a similar principle to the Auditory Integration Therapy programme. I'd love to hear more from the experts on this, if anyone has more info:-http://www.henryspink.org/the_tomatis_method.htm

The Vikings

2009-01-26T16:06:00.005Z

At school this term, M and his classmates have been learning all about the Vikings. They had a Viking dress up day when they had to adopt a nordic name. M was Rig which means King. I thought that this was a fitting name, following his sterling performance of one of the three wise Kings in the Christmas play. We also had fun on a fact finding mission, surfing the net to find out all about the food, clothes and roles that children had to play, helping to work alongside their parents.

Of all the subjects that M finds difficult, history seems top of the list. He lives very much in the here and now and finds it very hard to imagine scenes from the past, to which he has no visual connection. He doesn't yet have the extensive vocabulary he needs, to help him link history to things that are familiar to him. Whilst the creative curriculum helps to bring projects to life, learning about history in the classroom, does involve sitting and listening to facts which are not tangible.

Last Thursday, I braved my fear of lots of people in a confined space and volunteered to help out in M's class for the morning. A local lady had brought in hand looms, similar to those that would have been used in the days of the Vikings. The children were given some wool to hold, whilst she demonstrated how it would have been spun, using a potato spindle.

After this, we split into groups of three and the children were shown how to weave the yarn on the looms. M was completely enthralled and we did not hear a customary growl, grumble or moan for over two hours. We were told about locally run, family loom days, where families get to weave a piece of cloth to take home. I shall definitely sign up for this, since M gained much from this hands on approach to history.

A Little Time out

2009-01-25T18:59:00.004Z

The Dad and I have had a lovely weekend. M stayed with Mum and Dad for the weekend and by all accounts has had a lovely time. He didn't want to leave and cried all the way home :(

Yesterday, we went to see the new Will Smith 'Seven Pounds'. Although we had lots of plans for today, we slept until ten and then had a very leisurely lunch, followed by a read of the Sunday papers .I hadn't realised just how tired I have been of late, but a little time off has made me feel like a human bean again! I'm looking forward to sitting down with the Dad tomorrow, to work out what equipment we needs for M's sensory diet.Some of the strategies, we use having leaned what works by trial an error.