Saturday, 31 May 2008

Saturday 31/05/2008 The Birthday Feast

' Life Imitates Art'

Getting my lot together for a bit of a Birthday do is nigh on impossible, so our celebrations tend to be a little spread out. This is great since this year's was a significant one and I still have something rather lovely to look forward to in June.

Today we had an Italian meal with lots of/rather too much champagne. M was impeccably behaved and wanted to show his Aunt and Uncle around Reading museum. I think he might well get a job there as curator when he grows up, since he is becoming rather expert at showing people the highlights. Now that is all I have to say today, as the bubbles have gone straight to my head, hick!

Oh yes and here is today's link, is an article from speech-language-therapy.com by Caroline Bowen, on semantic pragmatic difficulties. The website is excellent, do take a look around.

http://members.tripod.com/Caroline_Bowen/spld.htm

Friday, 30 May 2008

Friday 30/05/2008/ Debbie Feit Parent’s Guide to Speech and Language problems cont.

I want to say a little bit more about this book, because it is one of the most comprehensive guides I have come across. I wish that I had found it in the early days.

The book details all the different disorders and disabilities that can impact on the development of speech and language. There are also a lots of advice and suggested questions to ask, when choosing a speech and language therapist.

I was really impressed by the chapter on alternative therapies. Some of you may remember my post on sensory integration therapy, regarding M's treatment at The Sound Learning Centre in Palmer's Green London.

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

Feit also details the benefits of essential fatty acids (fish oils) and cranial sacral therapy, a route we have also found very helpful. She explores the theories of the impact that diet may have on brain development. Gluten, casein and dairy products, if undigested become unbroken peptides in the bloodstream. This is thought to have a negative impact on brain function. Feit mentions the Sunderland University studies regarding this.

http://www.healthboards.com/autism/488.html.

The chapter is very thorough and balanced, as she lists all the scientific findings for and against all of these therapies and treatments.

The final area that impressed me was Chapter 9, ‘Home/Work creating a Communication-friendly Home’. Feit covers all of the basic tools needed to create the right environment for children with communication difficulties to learn speech. These include:-

Praising speech ‘I like the words you used to….’
Not speaking quickly.
Using clear short sentences.
Repeating back ‘modelling’ good speech rather than correcting a child’s speech ‘I like his punny face’ would be answered be ‘I like his funny face too’

She recommends reading singing and making the most of meal times together to encourage speech.

There is a lot more I haven’t covered including an excellent chapter on education. I know I shall continue to refer back to this book, for some time to come.

Thursday, 29 May 2008

Thursday 29/05/2008 Communication Passport

One of the things that M finds difficult is the transition into a new class. We find it equally difficult to go over old ground. As you can imagine M's file of paper work is pretty enormous and I shouldn't imagine that teachers with a large class and little time, have time to read everything.

Moondog from Mum's net has provided this link to information from Scope about setting up a communication passport.

http://www.sncwd.org.uk/documents/communication%20passport%20template.pdf

She suggests that this could include the child's picture and interests and it is designed to be a basic manual of the child's needs that can be accessed by any new professionals that care for him. I think that this is a fantastic idea and I shall certainly be slaving over a hot lamenator ready for the September term.

Wednesday, 28 May 2008

Wednesday 28/05/2008 Credit Where Due


When you live with a child day in day out, you can be inclined to overstate the problems and under value the achievements a little. I had this email from dear old Spuds (My Dad) today and it really bought home to me, how massive M's progress has been this year!

Hi Love

Read your post yesterday and I must say I was impressed by your handling of the potential 'meltdown' at lunch time and it is encouraging to note that these incidents are far less frequent than they used to be.

On the positive side I had to reflect on the amazing progress 'Musthava' has made over the past year in all of the following areas:-

1. Humour - Making up nicknames for us and comparing us to different species of owls - remember "Grandad's flying".

2. Reading ability - reading words he recognised and making a fair attempt to read words that he has probably never seen before.

3. Observation - Noticing and taking an interest in the wild life he saw from the smallest bug upwards

4. Communication - When the goat reminded him of the Grimm's fairy tale and he explained and demonstrated how the goat pushed the Troll into the river.

5. Joi de Vivre - Apart from the lunch time incident my lasting memory is of a very happy little boy having a great day out.

All of this has only been made possible by your unceasing love and dedication to ensuring that our special little man has a happy and secure future.

More strength to your elbow!

Love

Dad

xx


M came up with a new name for us all. M is Musthava,as in musthava icecream. I shall now be referred to as Mumpty and Mum and Dad are now Nanimpty and Granimpty! It is also worth noting that some of the time M is 'just being a six year old boy', rather than all of his behaviours being down to special needs.The lack of volume control, toilet humour and mess seem to be pretty much universal for boys his age!

Tuesday, 27 May 2008

Tuesday 27th May 2008 Debbie Feit's Website and Blog

We have had a really nice day out today at a local animal sanctuary. We narrowly avoided a melt down situation at lunchtime, when the 'I cues' worked really well for me. M is generally very hyper active during the first couple of days of the school holidays. He woke us about five or six times last night. We normally find a visit to our cranial osteopath, helps enormously with the sleepless nights. I am thinking of taking up the offer of seeing a sleep specialist at the hospital. I shall let you know of the outcome, as or when we get an appointment.

I was really impressed with Debbie Feit's website and blog 'Our Special Kids' http://www.ourspecialkids.com/debbie.htm Many of the anecdotes about her son Max's difficulties and achievements, could have been written about M. I particularly enjoyed the story, from her book, about the first time Max was able to sing along with all of the words at a school concert. Last year I too sat in the audience at M's Christmas concert smiling and sobbing, as he joined in with the singing and actions to the all of the songs. The year before he was mute throughout and the difference this year was, that school had provided a CD of the songs, which he listened to each night, for the fortnight before the concert! The greatest tool we can give these children to help them succeed is preparation, preparation, preparation!

Monday, 26 May 2008

M on Babies

M's teacher kindly put a book about the human body in his book bag. We were looking at the picture of the baby in his mother's tummy and he suddenly pulled an expression that suggested he had it all worked out. He pointed at the umbilical cord and said 'Look you pull it out by the rope!' He then raised his palms up and asked' but where does it come out?'

Monday 26/05/2008 National Literacy Trust

I have just discovered this website and have found it to be pretty extensive in terms of content and advice. This link 'Developing Language For Life' explores the link between communication and language difficulties and has advice from ICan about identifying and supporting children with speech and language disabilities:-

http://www.literacytrust.org.uk/talktoyourbaby/SLDs.html#comdis

I know from the emails I have received recently that there are a number of parents at the beginning of the diagnostic route and think that this article, which gives a pretty comprehensive over view, is a good starting point.

Sunday, 25 May 2008

Sunday 25/05/2008 Debbie Feit

I’ve been promising a review of ‘A Parents guide to speech and language problems', by Debbi Feit. The reason that this has been a long time coming, is that it is such a fantastic book that, A. I haven’t been able to put it down and B. I’ve been hard pushed to prĂ©cis, what I want to say. My copy is completely covered in post its, so I’ve decided to split it into two or three posts. I really want to start with a subject that it is rarely covered in the speech and language books I've read.

Chapter Eight is entitled ‘Dealing with the Diagnosis: The impact on Your Child, as Well as Your Marriage, family and Job’. Obviously I can’t cover all of this, so have picked out the points that were particularly salient, and relevant to our family.

You may have read that we have been concerned about the impact that M’s disability has on his behaviour. I was interested that Feit refers to the Columbia University research that suggests that left brain abnormalities underlie both language impairment and behaviour problems in boys. She goes on to say that the way that children respond to their communication challenges, depends very much on their personality and the support that they receive. She described her son banging his head against the floor in frustration, something I could very much relate to. Feit also gives clear advice and strategies for parents to be able to help their children overcome these difficulties. These include keeping calm, being empathetic, reducing frustration by interpreting the child’s needs and trying other methods of communication such as signing.

The part of the chapter which really had the biggest impact for me was ‘Your emotional well being’. I feel that the needs of parents dealing with disabilities day after day can become neglected. I saw my own behaviour in terms of her description of the 'the five stages of grief' as:-Denial, Anger, Bargaining, Depression and Acceptance. I was even temporarily angry with God, for inflicting this on my child. I needed time and space, to take to process what was happening in 'my own' way. I would however, add a seventh stage to this process ‘Celebration’ of who and what your child is!

I am lucky that we have a strong marriage, which has weathered a lot of storms. I was interested in the way that Feit describes couples coping differently with the news that their child has difficulties. She refers to Marshank and Prezant’s theory of “Immersion” and “Distraction” methods of coping. I very much immersed myself in finding out everything I could to help M after a period of crying and raging.This preoccupied me day and night to begin with. The Dad distracted himself by working hard, striving to do well and holding everything together for all our sakes. I once asked him why he wasn't talking about how he felt about M's difficulties. He answered that he had to stay strong, in order to be able to function and provide M with all that he needed. I think that there is a value to both of these ways of dealing with grief and we have both now managed to find that balance between the two.

One of the reasons the Dad went part time last year year, was so that we could spend some time being a couple, rather than just being M’s parents and carers. I think that our humour has been our saving grace. I often think back to the section of the Parent Line Plus course that dealt with 'filling your own teapot.' That is where the blog came in for me. It has been cathartic and enlightening in terms of what I have learned and the people I have spoken to. I have given thought to what I need to stay on top of 'my game.' To this end, I have insisted that The Dad book a babysitter and takes me to see ‘Sex and The City the movie’ next Friday. There will be laughter and tears in abundance, and it will be fabulous, whether he thinks so or not!

More thanks to Total Chaos for recommending this book.

Saturday, 24 May 2008

Saturday 24/05/2008 Heaven Can Wait


It has been an amazing week in lots of ways. Aimee has been helping M with questions, since he often muddles those beginning with Wh. I have been doing the bedtime bath time routine and some of the topics M has come up with have astounded me.

Mum and Dad lost their tortoise Sammy, who was our childhood pet. She had lived out her days dining on strawberries and basking in the sun. M asked if they had thrown her up in the sky to get her to heaven.He also asked to see lots of pictures of Buddy, our elderly cat who died when he was little. The subject has obviously been playing on his mind, so he has been asking how you get to heaven. I explained that we would all live in heaven one day, but that it was our thoughts and feelings that went there, rather than our bodies. He asked if he would go there and I assured him he would and then he said 'Mummy and Daddy will be there too?' and I replied 'Of course',while keeping my fingers crossed behind my back.

The book 'No Matter What' by Debbi Gliori, has been useful, as it describes death in terms of love living forever. M seems to be reassured when we read it together.

Aimee has also had some rather good news and so 'babies' have also been a key topic this week. I wasn't quite prepared for the 'How do babies get in tummies?' question and he looked at me quizzically, when I started to mumble about eggs and seeds. Any suggestions for books around this topic, would be gratefully received. I think it might be time for a chat with the Dad about birds and bees!

The third thing that has really amazed me this week, is that M wrote his first sentence at school, without support. I wasn't surprised that this was inspired by the oceanarium visit, but was taken aback that he was able to construct this all on his own. M smashes down barriers and pushes the boundaries of everthing he puts his mind to.

I was very moved by this video, of a young woman who has achieved the seemingly impossible. It reminds me of how much we do not understand about the human mind and I stand in awe of her achievements.


http://abcnews.go.com/Health/story?id=4320297&page%20=1

Friday, 23 May 2008

Friday 23/05/2008 'Nobody Loves a fairy When She's 40'

The Dad pulled all the stops out to make it a very special Birthday

And he just knew that I wanted everything low key and tasteful this Year!




Because, to tell you the truth I've been feeling my age a little this year





And I'm a tad worried that I might be becoming a bit of a chip off the old block.



Luckily, at least one member of the family is photogenic,



And she bakes a marvellous cake.


Of Course There is somebody very special, who brings colour to my life
and keeps me young at heart!





Thursday, 22 May 2008

ICAN Communication Cook Book

I am eagerly awaiting the launch of ICAN's communication Cookbook in July. Meanwhile, schools and nurseries can pre-order their copy free at this link:-
http://www.ican-dev.org.uk/paypal/communication-cookbook.asp, provided they are registered.

There are also some great games and activities, that can be downloaded, on the right hand side of this link. http://www.communicationcookbook.org.uk/

Websites

My links for today are from 'Help For Kids Speech'. This Q and A item, explains the difference between Semantic Pragmatic disorder and Specific language impairment. There are useful links regarding both disorders. http://helpforkidsspeech.com/articles/detail.cfm?ID=548

I found this link to the article 'Developmental Neurolinguistics Lab' by Speech-Language-Hearing-Sciences http://web.gc.cuny.edu/Speechandhearing/labs/dnl/sli.htm particularly interesting.

Thursday 22/05/2008 The Gift

The Dad is a man of few words when it comes to how he feels, but I know at some point today, he will take some time out, to think about his brother Clive. Today is Clive's birthday.

On the day he was born, Nanny P went out and gathered lily of the valley.It is such a pure flower and I think it must have made a beautiful bouquet for a brand new Mum.

Clive had severe epilepsy. The Dad who shared a room with him witnessed seizures so severe, that he once kicked a shelf from the wall.

I don't know quite how to describe Clive to you. He was a mathematical genius, who could see number patterns. Mark was inspired by Clive's visionary abilities and attributes his own talent and his career, to all that he learned from his brother. He was extremely kind and once offered to roll his sleeves up and paint a wall that had been damaged by a flood, when he came to stay.

Sadly, I only met up with Clive on a handful of occasions and I know, like M, Clive battled with a number of challenges throughout his lifetime. M has inherited his uncle's knack for telling it as he sees it.

I have been trying unsuccessfully to grow lily of the valley, but the plants have always been blind. A few evenings ago, we were enjoying a glass of wine on the patio, when we spotted this bloom. Now nobody is allowed to move the pot under any circumstances.

Wednesday, 21 May 2008

Top Tips from Roaring Mouse

I have been speaking to a lovely lady by email recently. She will hereby be referred to by her preferred title of 'Roaring Mouse' (Oh how I wish I had nabbed that one)

Here are some of her top tips top tips:-

1. Peter and Jane books. They come in a series and start with the very simplest words. The reason H likes them, I think, is because the story lines are very simple and very repetitive. Also, the pictures are clear, realistic and go with the words. The reason I got these books was because one day in the car on the way back form the zoo, I was reminded of them from my own childhood, when his dad and I were modelling the question "Did you like the zoo daddy' and he answered "Yes, I liked the zoo mummy" in the hope that we could convey to H the give and take of a conversation and about what it means to like something. Anyway, this is what the Peter and Jane books are a bit like and why I went out and bought them. They are by Ladybird.

2. By the same token, the Biff and Chip books. These are less repetitive, but the story is conveyed well in the pictures and they also have some slapstick humour, which H is starting to enjoy. (I can thoroughly recommend these to they are the Oxford read at home scheme and can be ordered on line from the book people)

3. ABA - Applied Behavioural Analysis. Often used with children with ASD, but also helpful for children with learning difficulties. There has been/is controversy about the use of this therapy, to which I remain mindful, but we are currently happy that it is appropriate and helpful for H. I can tell you more about this if you're interested. (watch this space there is much more to come!)

4. Many websites : our favourites - http://www.thomasandfriends.com/uk/index.asp?origref=, http://www.juliasrainbowcorner.com/html/ants.html, http://www.muddlepuddle.co.uk/, http://fun4brains.com/, http://www.storyplace.org/

5. The Jolly Phonics system, which having got my head round the whole phonic way of learning to read, we've been dutifully practising. (Hmm! yeaaah......No!. This was a year late for us and we kind of by passed it by. Naughty, hope you aren't reading Miss B!)

6. Trampolining. We have a small one in the living room, and H uses it as a way to use up pent up energy, to help him regain focus, to count bounces,, to have fun etc. We were also told by the OT that we saw last year that H has a huge appetite for pre rioceptive (sp?) input and trampolining stimulates the necessary body mind connections.(Genius!)


7. A visual timer, which also has an audible alarm. This helps H when he has time-out or when he needs to know how long something is going to take - for example, sharing with others (taking five minute turns). We ordered ours from the States and it's been very helpful. They also have watches etc., along the same lines. http://www.difflearn.com/products.asp?dept=48

8. School - Home link book. The school write down a few words from the day, so that you have a 'way in' to conversation with your child at the end of the day, and also tells you a bit about their day. (Thumbs up this works for us too)

9. An auditory processing and related skills software programme to help develop listening and sound awareness skills - Earobics. From the States, same place as the timer. There's also a cushion I've heard about that children who have trouble sitting still can use. It sounds like a sort of water-cushion, which enables the child to continually move but remain on their seat. I thought this might be helpful at school, for when he has to sit for a while.(investigating this one)

Thanks RM!


BBC News Item

With thanks to cyber of Mumsnet for the heads up on this link that I have missed. http://news.bbc.co.uk/1/hi/education/7398743.stm

Wednesday 21/05/2008 Mum


At the weekend I found myself think a lot about disability, sensory problems and more precisely about my Mum.

Mum was born after a very difficult delivery during which forceps were used. The doctor pinched her spinal cord and as a result she suffered severe spinal injuries. She spent the first six months of her life in a plaster cast from her neck to the top her thighs and wasn’t even able to move her head from side to side. Her Mother said that when the cast came off, all she wanted to do was swivel her head back and forth to show off her new found mobility.

Mum was left with palsy down the right side of her body. Her arm was twisted up and she had to endure nine operations to straighten it. She is still unable to straighten her wrist and is loosing strength in her hand as the years go by. She wore a calliper on her leg until she was about eight or nine. She missed huge chunks of her schooling and despite being bright and creative; she went to a secondary modern school. She often underplays her intelligence and skills because of this

Mum had to endure the taunts and children copying her strange gait and her bent arm. I can only imagine the hurtful names they called her.

As children, we grew up with Mum’s ‘floppy hand’ and I loved to trace the intricate pattern of her scars, which seemed to my childish eye to look like lace. I thought and still do think that she is beautiful. I don’t think that you truly acknowledge some thing that has always ‘been there’

At the weekend I got into a discussion that I shouldn’t have, about children with disabilities. On Monday I had a very strange feeling all day, that I couldn’t quite put my finger on. Gradually, I realised what it was.Sorrow!

I grieved for the baby, who was denied the chance to explore her world and investigate her brand new senses. I cried for the little girl who learned to fear the chloroform mask, the endless painful operations and the electric shock treatments. In my mind’s eye, I could almost picture her alienation as she faced the taunts at school.

I’m pleased to say that Mum’s story is one of strength and success. She worked as a teaching assistant in a school for children, with behavioural difficulties and learning disabilities, for over twenty years. As if that wasn’t enough, she went on to work for social services, ironically helping people like the Dad and I, who have children facing a challenge. We are proud of what and who she is. What a role model for M!

Tuesday, 20 May 2008

ICAN Parent Point News

I have been perusing The ICAN Parent point news section and have noticed a couple of items of interest. There is a Tree House training course on the 17th June 2008. It is aimed at 'Improving the opportunities and independence of children with autism within the home, school and community settings' Here's the link http://www.treehouse.org.uk/treehouse-services/development-and-policy/training-consultancy/th-training/

The newly launched Early support government website http://www.earlysupport.org.uk/ also promises training for parents/carers of children with a disability.
http://training.earlysupport.org.uk/modResourcesLibrary/HtmlRenderer/supportingchildrenadditionalneeds.html

Tuesdsay 20/05/2008 Donna Williams

Total Chaos sent me this link earlier this week. Donna Williams is an extremely talented Artist, Poet, Author and singer song writer. She writes of her Auto biographical book 'Nobody Nowhere':-

"And it was in this year that I stood on the edge of a breakdown but instead found my scream through the writing of Nobody Nowhere, the book that came to give a dynamic, human, real-life living face to the word Autism and explode the existing stereotypes laying bare its incredible diversity and ultimately the essential humanness we all share."

Her first album of the same name is really incredible and I particularly liked the tracks 'Sometimes' and 'Still awake' http://cdbaby.com/cd/donnaw

Do you remember the post about M's Jargon? http://sunshinetc.blogspot.com/2008/04/monday-07042008-jargon.html? After reading Donna's poem 'When Mitsy Flew', I realised I have under valued the genius behind M's special words. Here is an extract:-

"Figaro was the word given to the 'foosh' pattability
Which trilled 'brrook-brrook' in fluent 'cat'.
I pursued it, I loved it.
Black fur moving fast on legs.
The fluttering of birds swam in the air"

I was most moved by Donna's art work, of which she writes "There's an interaction between autism and artism on so many levels which I hope you'll enjoy exploring here through my painting and sculpture." I wonder if you can spot the image that made me catch my breath, when I watched her You tube film, 'From Autism to Artism'. Answers on a post card please.

http://www.youtube.com/watch?v=ekW3IfEMf9w

Thanks again TC!

Monday, 19 May 2008

Monday 19/05/2008 About.Com Parenting Special Needs

I had to do a double take earlier today, when I saw my own words staring at me from one of my favourite websites, http://specialchildren.about.com/ (Blog Entry Sunday 18th May) This site is extremely extensive and is great for special needs resources.

I actually thought that my eyes had deceived me, so I had to go and fetch The Dad from the garden, to double check for me. Those of you who have been reading for a while, may remember my link to this site regarding the sensory box which we have found to be such a useful tool, in helping M tune into his feelings. http://sunshinetc.blogspot.com/2008/05/monday-05042008-mayhem-and-meltdowns.html

I am very pleased and honoured to have been included by Terri Mauro in the item, 'Sunday Quotations'. I can also highly recommend the free news letter.

Self Eteem

I just wanted to add a footnote about yesterday. I always take a peep at M before we go to bed. I often lift him from his usual upside down position and tuck him in safely, before turning out his pirate light. Last night I was moved to tears, since his hand was curled around a tiny trophy, excavated from deep within the toy box. I could have taken a picture to show you, but that would have been lazy blogging. Children with SLI, often have fragile self esteem and finding M's gift has been a blessing for us all.

Sunday, 18 May 2008

The Winner Takes It All!

An Under Sevens 750 Meter Race

He Did It!

Sunday 18/05/2008 Applied Behavioural Analysis

My post today is more a plea for information concerning the above. I have heard this treatment is successful and appropriate for children on the autistic spectrum, but wonder if the strategies involved would benefit children with SLI?

One of the ladies at my 'Speak Out' support group, has offered to lend me a book on the subject, but I'd be interested in hearing other people's views. The two links I have found useful are:-

http://autism.about.com/od/alllaboutaba/a/abaoverview.htm

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1390&a=3697

The latter is a parent's experience of ABA.

Saturday, 17 May 2008

Richard

We had a really great week at Centre Parcs. M was really well behaved and as always, has learned lots out in the natural environment. He went to the time out club for three hours, without a backward glance. This would have been inconceivable a year ago. I was really pleased that he was keen to join in with other children particularly at the banquet, when he joined in with all the instructions and joined the cast up on stage.

We sat next to a lovely couple and their son. Richard has severe Autism and has never spoken a word. We were told that Richard loves classical music and how he enjoys hearing his Dad play the piano. I was fortunate to be able to share Richard's view point for a little while. He loved the music that the minstrels played on fiddles and was fascinated by the crumbs on his plate. Richard really enjoyed the rhythm that the sound his spoon made when he tapped it on the table. I was privileged to be allowed to join him in this game and was rewarded by several of his beatific smiles.

I began to understand that autism can be a bit like a kaleidoscope. The image of the world that most of us see, becomes more fragmented, with each twist and sweep along the spectrum. It struck me that both these views of life, are equally vivid and valid. The short time I spent with Richard reminded me of how I felt, when I first gained an insight into the meaning behind a Picasso Painting. Once again, I have learned something new and gained a perspective that had previously been beyond my peripheral vision.

As we got ready to pack up the car and leave the next morning, we realised that Richard and his family had been staying in the villa next door, all along.

Saturday 17th May 2008 Oh No The Holiday Snaps!

What has M been doing this week?

I met lots of friendly animals, this is Humphrey Bogart the duck.
'Here's looking at you kid!'


I was Robin Hood at a banquet


And a Pirate captain.


I swung as high as the sky,




And got a strike at bowling.






This week M scaled new heights, both literally and in terms of communication.
We are very proud!






Sunday, 11 May 2008

The Holiday

Just recently life has become a bit hectic of late and I have been feeling a little like my favourite childhood hero in this clip,

http://www.youtube.com/watch?v=a7ySmnxy29Q

So my ladies (spoken with my best Carrie Bradshaw accent) and a few rather distinguished male readers, I shall be taking my leave of you for a few days of R and R.

Before I go I must just tell you about a conversation I have just had with my sister Lily. As well as having great careers, and a thriving allotment, Lily and G have a beautiful garden. Lily has been suffering from an infestation of snails and lily beetles. She is a gentle soul and so has been dutifully gathering them all up in their dozens and relocating them to her local park.She thinks the snail head count alone is at about 600 this season. I have visions of a poor public sector gardener, scratching his head and wondering why, despite his best efforts, are all manner of wildlife are descending on his patch for a municipal munch! I mention this only in case you were wondering, from which side of the family M gets his eccentricity.

Sunday 11/05/2008 A Catty Comment

One of the great thing about joining the parent support group 'Speak out' is that we, can compare notes and swap books. 'all cats have asperger syndrome' by Kathy Hoopmann is a little gem. It is factual, whilst also being entertaining, sensitive without being over sentimental and the photographs of the cats are both beautiful and evocative.It is also very humorous. Both M and I lovvveed this book and I shall be ordering myself a copy forthwith.

Here are my three favourite quotes:-

'Sometimes his parents feel sad, wondering why they can't understand their own child'

'But as he grows older he senses that he is different from everyone else.....and feels as if he belongs on a different planet, like an outsider looking into a world he never truly understands'

and finally,

'Everyone can sit back and enjoy the unique individual he becomes.'


I wonder who else those could apply to?

Saturday, 10 May 2008

Saturday 10/05/2008 Support For Parents

We are a way down the diagnostic route now with M although the road has been far from smooth. This week it occurred to me that whilst each parent of children who have special needs is different is different, we seem to go through the same phases. For the Dad and I, these were denial, shock anger grief and finally/thankfully acceptance.

Last year I did not want to know about support groups, despite some well intentioned prods in the right direction. I needed the head space and time to come to terms with my own thoughts, before I could consider what M needed. This sounds a little selfish, even to my own ears, but this time was utilised by researching, reading and finding 'my own path' through these problems. I needed 'a say' or what some might call might call 'some control,' over M's journey.

As you might have guessed, I am now ready to share my thoughts and feelings with other people. I have the most fantastic support from a group of 'special mums' and from my family.This week I have also joined a group called 'SPEAK OUT' . Whilst it is a support group for children with Autism, ADHD, Aspergers and Dyspraxia, I have already spoken about the ways in which there are behaviours common to both these disabilities and SLI.

The group was fantastic, it meets fortnightly and alternates between morning and evening sessions, so as not to exclude working parents. One of the group leaders was a lovely lady, who has a sixteen year old son with HFA.It was great to speak to someone for whom autism strategies and behavioural management was a road well trodden. I was really impressed with the way in which Mum's can brainstorm certain problems by exchanging ideas, experiences and strategies. I came away not only feeling that the group was a valuable source of information for me, but also that what I had to contributed to the group mattered too. We need that don't we?

Friday, 9 May 2008

Let The Good Times Roll

I know that there are quite a few Mum's who are at the beginning of the diagnostic route and who are feeling down this week. I just wanted to end this week with some good news and a message of hope.

Yesterday, I walked the seven minutes from our doorstep to the school. It was warm and sunny and the doors to the assembly hall, were wide open. The children voices floated out as they sang 'Stand by me' which couldn't have sounded more perfect to my ears. The Dad had a meeting with M's class teacher, who said that she felt on balance, that M was best suited to mainstream. Now, I know that we have a long way to go, but this means that M may well be able to stay at the school that both he and we love.

http://www.youtube.com/watch?v=x325VCoA8Jw

Thursday 09/05/2008 The Dad, The School Trip And The Lesson


The Boys had a fantastic day yesterday, so I've asked the Dad to write today's post,


Yesterday I was once again lucky enough to be ‘a responsible parent’ on a school trip. I always consider these trips to be well worth a day off work, but when you think that today’s trip was to an aquarium on the coast with sandwiches on the beach, and temperatures in the high 70s you will understand why this was appreciated more than most!

It was a good day. M was alive and communicative. On the way down he was talking constantly with his friend, another M. Granted approximately 20 minutes was spent laughing about various items being, “in your pants” (and we had everything from ants and sand to elephants and Great White Sharks) but, taking the positive from the situation, it was clear that his vocabulary has widened considerably!

M really enjoyed the visit to the aquarium, as did the whole class. And much of the reason for this was due to communication; more specifically, communication of the guide on the tour of the aquarium. Johnny was, and I can’t find a better word, awesome. He grabbed the children from the moment he started speaking – no, communicating. It wasn’t just the words (although it is important to point out his choice of language was very age appropriate) but rather the passion behind the words. He so evidently loved his subject and there was no doubt that he wanted needed to share his love. For around 40 minutes he held the children in the palm of his hand, they wanted to listen to what he had to say, and he wanted to share what he had to say with the children. When a child asked a question, or even showed an attempt to ask a question, Johnny was there wide eyed and ready to listen before responding.

So, where does this bring me? I guess a few questions. Does M have something to say? Absolutely. Are there things that he loves, that really get beneath his skin and which he wants to share? There are too many pictures that show a fire in his eyes to suggest this is not the case. Do I always listen? That is the one I don’t want to answer. OK, he doesn’t always have the words, but he so often has something to communicate, and when one is 6 and the other is 40 who should make the greater effort? Johnny taught me a fair bit today, not just about fish, but far more importantly about communicating.

Thursday, 8 May 2008

Thursday 08/05/2008 An Email To John Bercow

Well, I have finally gotten round to sending 'that email.'

Dear Mr Bercow,

I have read your interim report of ‘Services for children and young people with speech language and communication needs’, with great interest.

I am the Mother of a six year old son who has specific language impairment. We have only recently received the correct diagnosis for our son, via a two day ICAN assessment at the Meath School in Surrey.

It has been extremely difficult, to access adequate services to help my son overcome his difficulties. We have received very limited intervention from our local speech and language therapy services, which were often unable to assess M, because he refused to talk.

As parents, my husband and I have often felt lonely and isolated. Whilst SLI is extremely common, I haven’t managed to meet any other parents locally. We don't have an active local branch of AFASIC. I have also spent many hours trying to find the best information and resources available, for children with speech, language and communication difficulties. I have started a blog to share our journey and the resources and information I have found. This is the link
http://sunshinetc.blogspot.com/

In recent weeks I have received a large number of emails and comments, from parents who are sharing similar experiences, country and even world wide. These parents are intelligent, clued up and sensitive to the problems their children are facing. None of these children come from a 'language poor' environment. I have been very moved and feel humbled by their stories, which they have kindly let me post on the blog .These parents have to provide a voice for their children, who are unable to articulate their own needs.

Two of the Mothers have been told that NHS SALT services concentrate on the problems such as stuttering, in order to see a large number of children who can be helped swiftly. I cannot comprehend how children with more complex disorders, can be left to flounder.Whilst most SALTs do a fantastic job, I feel that their services are stretched to the limit.

I was also disappointed that our local speech and language therapist 'was not allowed to point us in the direction of independent help', despite there being a long waiting list for one to one speech therapy. We were told to ‘look in the yellow pages’. I feel that doctors and NHS speech and language services, should be able to direct people to ASLTIP, The Royal College of speech and language therapists, or to AFASIC. My son has improved enormously in the short time he has been receiving the regular intervention of an excellent, independent speech and language therapist.

Whilst our son’s school have had access to some excellent out reach advisory services, the visits tend to be sporadic. I also feel strongly that every school should have information on hand regarding organisations such as ICAN and their excellent website Talking Point.

I am delighted that your interim report highlights the need for early identification and intervention for the children who have to endure these disabilities. There are times when we have felt extremely bleak and fearful for our son’s future. I hope that you can make a difference.

Best Regards

TC.

Here are Mr Bercow's details, should anyone wish to contact him,


Email: bccaagent@onetel.comTelephone: 01296 714240Fax: 01296 714273Website: http://www.conservatives.com/redir.cfm?ref=http%3A%2F%2Fwww%2Ebuckinghamconservative%2Eco%2EukPostal Address: House of Commons, London, SW1A 0AA.



Wednesday, 7 May 2008

Wednesay 07/05/2008 Late Bloomers or Language Problems?

The difference between speech and language delay and disorder, was something that preoccupied me a lot, when M was a toddler. At first, he was bang on target and we had a stream of words. I guess that I became concerned when M was about two and the other kids in his peer group, were speaking fairly fluently in short phrases. The Preschool leader, acknowledged that M was behind with speech, but initially he played happily and bonded with another little boy over computer games, for which he showed a real aptitude. I guess the big pointers for me were, an absence of verbs, using two words for the same thing 'I just only want', using incorrect tense and sentence structure and muddling pro nouns. M also referred to himself by name rather using 'me' or 'I'.

Another of M's speech quirks was that he would remember stock phrases and repeat them. During his first week at nursery he realised that 'I like trains' helped him to initiate play, so he used it at every opportunity.

As you know, I am a big fan of the American website, LD on line. This article by the American speech-language-hearing assoc, explains the differences between language delay and disorder, in a matter of fact way which is parent friendly. http://www.ldonline.org/article/6232. I also found this article, by the same association, interesting http://www.ldonline.org/article/6231

Tuesday, 6 May 2008

A Little Break Through

We have had a really difficult couple of weeks. M hasn't been sleeping and to be honest we are feeling pretty exhausted. Some times just as I think that things will really be OK, his behaviour takes a backslide and I am left wondering where I am going wrong and what else I can do.

This afternoon we were due to be meeting a friend (another little boy with special needs) at a local pub. M was disorientated because they weren't there and flew into one of his meltdowns. I tried all the techniques I have suggested in my earlier posts, but was getting no where fast! It didn't help that he was copying the bad behaviour of a little boy much younger.He refused to make eye contact at all and was kicking the radiators and me. In the end, I apologised to my friend and walked swiftly out of the door. M followed with tears streaming down his face, and I explained very firmly, using I cues, that I wasn't prepared to put up with any more bad behaviour and was going home. I could feel the disapproving looks from the parents, who probably wondered why this awful woman could not control her child.

Suddenly, it was as if we had a light bulb moment, M said 'I will be good and play beautifully' and do you know what? he did.

Tuesday 06/05/2008 Too Quick To Prompt


As a family, I'm sure we'd all agree that we love to talk, but aren't that great at communicating. I've always believed I have the gift of the gab and was taken aback, when somebody once asked me, if I had felt I needed to shout to be heard as a child! At family events there are usually several different conversations going on, and I tend to be involved in all of them. Whilst learning about speech and language disabilities, I have been forced to examine my own style of communication.

Adults are generally generous and kind, when speaking to children, especially if they struggle for words. We instinctively want to jump in to help them succeed. This is a conversation I over heard between M and a friend of mine recently.

'HelloMdidyouhaveanicedayatschool,whatdidyoudotoday,isthatyourpaintingdidyoudopaintingtoday,that'snice,whodidyouplay with,didyouplaywithSam?'

M was silent, throughout the whole conversation and looked very perplexed. The kindest thing you can do for a child with speech and language difficulties is to OWL, observe wait and listen. Prompting, however kindly meant, will interrupt the flow of thought, for a child with an auditory processing problems, or a processing delay .We were incredibly proud when M sang every word in his Christmas concert last December.In previous years he had always been mute, despite knowing all of the words to the songs. He finished a couple of seconds behind everyone else, so his precious voice rang out and was heard for the first time, alongside his classmates'.

Monday, 5 May 2008

Wonder Boy

I wanted to find some video of M, so that you could hear his voice. After all he is what the blog is all about. It is very hard to find any footage of him speaking, as he is often mute if he thinks we are filming him. I've chosen this clip which is silent, just because it seems to capture the very essence of M.


video

Not bad for a boy who once had a box ticked, as showing no interest in his environment.
video

Another Voice

I was moved to tears by this beautiful email, I shall let it speak for itself.

' I have just come across your blog (via Mumsnet), and details of your recent Meath School assessment, which I read with great interest. Thank you for sharing this information.Your experiences with your son and his difficulties sound so similar to mine. My boy has just turned four and I have spent the last year and a half trying to get to the bottom of what's going on for him. Reading your experiences tonight has been of comfort and relief, to know that our family is not alone in this and that somewhere like Meath School exists, which might also help us.

When I read about you and your son on the train, listening to another child chatter excitedly, you could have been describing H and I. H is not able to have conversations with me yet, and uses quite a bit of echolalic language, as well as some peculiar placement. He doesn't initiate conversation much, except when he wants something (like 'Let's go to tescos shall we?' because he wants me to buy him a new toy train), preferring to absorb himself in lining up trains or cars, or watching Cbeebies. He will comment on things now and then, like telling me it's dark outside.

He did tell me he was 'scared of monsters' the other night, which had me crying with joy (!) because he wakes up hysterical every night (and has done his whole little life) and has never said before what's been wrong. He also told me that 'he lost me' which I think meant he missed me, when I picked him up from nursery. Of course, it could have meant that he thought he'd lost me, could have meant he loved me, or could have meant nothing at all.'

Monday 05/04/2008 Mayhem and Meltdowns

I have probably mentioned before that M was a happy, placid, smiley baby. There wasn't a lot that fazed him and he was happy to point things out and share every new discovery. We knew that he was behind on his speech, but hadn't suspected a developmental delay of any kind. M was rather late reaching some of the major milestones, crawling at eleven months, walking at fourteen months and he still wasn't feeding himself with a spoon at twenty four months.

I enrolled him at the local preschool and the first couple of terms were uneventful. We were really shocked when M's behaviour started to deteriorate at three and a half. M suddenly became very anxious and clingy. Worryingly, he began to throw toys, hit and push other children and even kick out at staff. On the one hand I have to say that this was the wrong preschool for M, as they did not have a special needs policy in place at that time. The preschool leader, was concerned that M wandered around and wouldn't cooperate at carpet sessions. In retrospect, this was hardly surprising, since M would have understood very little, of what was being said.

M was fretful and very scared at night. He'd would wake on average five to six times a night, in the grip of awful night terrors. We took him to see a cranial osteopath, which helped an awful lot with the night times, but we still experienced terrible rages during the day.

I'd like to be able say, T' Da! this is the solution, but we are novice parents on a steep learning curve. These are some of the strategies that have helped.

I Cues :- We keep language simple, direct and in the correct order. 'I'd like you to sit down and eat your diner.' 'I need you to stop at the road and wait'. 'I feel sad when you hit me, please stop now'.

Social stories/ visual time table:- M needs a order to his day, especially if we are doing something out of the ordinary. I draw a series of small pictures (these can be stick men) to illustrate what we will be doing. I also draw scenarios to show Matty how to/how not to interact with his friends. These could include sharing, turn taking, saying please and thank you or hello/goodbye.

Time Out:- This is a tough one, it takes patience. We take M to the quiet step and he has an egg timer to allow him the time calm down. We sometimes have to repeatedly lead him back there.

Sensory Box:- We have a box with laminated foot and hand prints which can be used as deep pressure points to push or stamp on. We also have a dog/silent whistle he can blow and an unbreakable mirror to help M tune into his Emotions. There is also a flannel to wipe off the sad/angry face. http://specialchildren.about.com/od/sensorystrategies/a/sensorybag.htm

Reward scheme:- We have a jar with a happy face, each time M does something good, he receives a marble. Ten marbles equals a reward.(positive reinforcement.)M responds very well to praise and encouragement.

Empathy:- There are times when M's rage has reached such a level that none of the above would be appropriate. on these occasions, I use the same phrases over and over to soothe him, 'I can see you are very cross/sad' 'I'm sorry that you are feeling angry' 'I can see that the boy wasn't being fair' We talk about the bad behaviour once he has a grip on things again.

I'd love to hear what works for other parents, we are also awaiting a PCAMHS referral, so I'm sure I'll have some more tips to pass on at a later date.

Sunday, 4 May 2008

Plea For Information on Specific Language Disorder In Multilingual Households

I've receved a couple of emails from parents of children with SLI, who live in households where more than one language is spoken. I was particularly touched by this lady's words;

' I was searching for articles on SLI on the web and came upon your blog. What a wonderful gift you have given me. Your writings are beautiful and touching and makes me feel I am not alone.'

She has asked me if anyone has any information or literature, that will be useful and to be honest it isn't an area I have really covered, as a parent. We tend to skip the chapters that don't apply to our children don't we?

This is a topic that has come up recently on this thread from Mumsnet

http://www.mumsnet.com/Talk/1373/521783

Moondog, has particular experience in this area, she write:-

'If more than 1 language is natural for you at home,then continue to use it.I'm a salt and a product of a bilingual home, and work in a bilingual community',

and continues,

'I really really worry about denying a child access to one language. It will only exacerbate their isolation. It might be something to consider if maybe only one person in the child's entire circle speaks a language but i would argue that the emotional trauma of pulling a language from under their feet suddenly, far outweighs the benefits.I work in 'Welsh' Wales where most of the population is Welsh speaking. I can put my hand on my heart and say that i don't think one of the people I work with has problems in this respect.'

I'd be interested to hear the views of other parents and professionals, regarding this please. Like many of us, this lady is concerned for her child's future and ends the email,

'I wish I could talk to other parents whose kids were in similar situations so I can get a future picture of how life would be for my son. I know every child is different, but I would love to see some light at the end of the tunnel.'

I don't print any personal details from any emails I receive, nor any extracts without permission, but I have forwarded the Mumsnet link, to this lady.

I found this link from china sprout today,by a speech pathologist named Dr Nancy Eng. The only thing is the bottom half of the report seems to be missing: http://66.70.209.234/community/guestcolumns/2

This link looks useful for resources: http://www.multilingualfamily.co.uk/index.html


Sunday 04/05/2008 Introducing my first guest blogger Total Chaos

I've had some lovely emails this week from parents of children of about three to four years of age. They have asked me what M's speech was like at that age. I thought that you might like to hear from a Mother who has recently gone through the process of assessment and diagnosis. My Mumsnet pal Total Chaos (mumsnet name) has kindly agreed to be my guest blogger for the day. here is what she has to say.

At 36 months - DS (dear son) had about 100-150 single words (including shapes and colours and a few verbs such as climb! and slide!), and a handful of two word phrases (up the stairs etc). He knew me by name as mummy, but could not call other family members by name, although he knew the name of television characters.

He was assessed by private SALT as having receptive speech at an 18-24 month old level (1 word command level), with expressive speech being a little better, and overall as having a severe language delay. He was about to lose his only proper 2 word combination for "I want +object" which was "yaya +object), without properly replacing it with another verb.

At 42 months, and after a Hanen course, DS had more single words, and could put together two word verb phrases, with the odd 3 word sentence, such as "mummy brush hair" Despite this improvement, a private SALT still described him as severely delayed in both expressive speech and comprehension. He could by this stage answer the question "What's your name" but not other questions other than basic choices of food/drink/toys, and only really lived in the present language wise.

At 48 months DS had made a huge improvement in his expressive and receptive speech (both assessed at 36 month level, with receptive speech at 2/3 word level). He now has I estimate several hundred words. He can put together sentences of 6 or 7 words when motivated e.g. "I want mummy run on grass!", but can require prompting verbally or visually to put together sentences. He can answer basic questions about his school day - such as what he ate, what he drank, who he played with, and can talk about past experiences in a basic way with some prompting - e.g. respond appropriately if I ask which animals we saw at the zoo, or tell me what I and he ate at the cafe at the zoo, and will sometimes do this spontaneously.

He will also occasionally mention things he wants to do in the immediate future "get home and watch cbeebies DVD, OK?" He still tends to speak about himself in the third person rather than using the "I" form, and "I" and you can get rather entangled. If he bangs his leg he can tell me he hurt it, but if he has a cold he would struggle to tell me what hurt. Part of the credit for the significant improvement between 42 and 48 months has to go to private SALT for her suggestion that DS use PECs to help him retrieve words and start putting together more sentences. After a week of PECs DS could say "I want more juice" instead of a garbled "havva more juice". ___________


There are many similarities between our boys. M had less verbs and couldn't follow two stage instructions by the time he was four. M could pick out key words and make the connection once he had been shown a number of times. Total Chaos has found' like us, that the level of intervention and care her son requires, was not available via her local NHS SALT services.



Thanks TC you are a star!

Saturday, 3 May 2008

Saturday 03/05/2007 Lily my Lovely


I am lucky enough to be the middle one of three sisters. Whilst I sometimes feel like a thorn between two roses, I am incredibly proud of them both. I have mentioned Grace several times, but have been waiting for the right time to introduce my sister Lily and her husband G. Lily is a lecturer of theology and her husband G also lectures at a nearby university. Lily is also a yoga teacher and she and G are M's God parents, affectionately named ' the fairy frog parents' In the same way that Grace and her partner S, bring art and colour to M's life, Lily and G provide music and fun. Lily can dance and twist her body into poses that I couldn't even manage to prior to my pregnancy days. It is also amazing what you can do with yoga blocks! Both she and G are talented guitarists and G and M's version of 'wild thing' is a joy to behold.

Lily is my older and infinitely wise sister in many ways.During our school days, She confiscated my pot of worms, during assembly to avert catastrophe and detention! During my darker days, she was there for me, giving gentle counsel. Although Lily doesn't have children of her own, she has the ability to nurture and care for all those around her, often giving little thought to her own needs.In troubled times she has been my rock and my solace.I often feel that I am a lousy sister in comparison, as she will often phone minutes before I pick up the phone to dial her number.She is however, often in my thoughts.

There are also some stories about M and life, that I can only tell to Lily. She totally understands my ironic, slightly manic humour and I know I can count on a silence on the line, followed by a unanimous snort of laughter from us both. I hope when we are old, we shall wear purple together, although I imagine I'll be staring down at her from my zimmer frame, whilst she will be standing on her head!

Friday, 2 May 2008

A special last post for today

M had a pretty rotten day yesterday. I had been ill the night before and the Dad whisked him off to school, without seeing me. He told M that 'he couldn't see Mummy because she was poorly. M spent the day telling the staff he had lost his Mummy. When I say he climbed the walls trying to get home, I mean he literally tried to scale the school fence. It transpired that when Dad said that he couldn't see me, M thought that he meant forever! On the way home just now, M said ' If I losed my Mummy, I would have to ride my scooter to school on my own!' Then he turned to me and said' You make me happy'.

Friday 02/05/2008 Don't play the blame game

(M on his christening shawl chrocheted my Nanny Peg)

The truth is I don't know what has caused M's disability. There have been times when I have blamed myself, for failing to give birth to him naturally. I was also unwell for a period, during the crucial period that M was beginning to develop speech. We decided to go ahead with the MMR jab, despite some niggling concerns. I have wondered whether I was deficient in omega oils whilst pregnant or whether the usual childhood mishaps and falls, could have caused M's problems. I have looked at family history, discussed cousins and distant family members who may have had similar problems. I have even wondered bizarrely, whether the nearby electricity pylons can have caused problems for M and the two children living in our street who have autistic traits. Are these worries justified? perhaps, will worrying about these things change the situation? probably not. Are these worries helping me cope with the day to day care of M? No!

Mother's guilt seems to passed on from each generation, along side the prominent family nose or eye colour. Despite being emancipated, free to juggle careers and family life, most Mums are programmed to nurture and thus to worry. It has taken me a while, but I have accepted that I shall always have these thoughts, they are part of my make up and are not something I can easily change. What I have learned from my experience with M is that I have strength and courage, I didn't know exsited. I can't change what and who my son is and I wouldn't want to. What I can do is make the right descisions, with the Dad and the professionals who help care for M, so that he can reach his maximum potential. My greatest wish is that M will be happy with who he is and confident of my love for him.