Incredible Horizons on Sensory Integration Dysfuntion

Since the recent occupational therapy report we have received, has established that M has significant sensory integration and modulation difficulties, I thought it may be useful to post this link on by Incredible Horizons on Sensory Integration Dysfunction :-

http://www.incrediblehorizons.com/sensory-integration.htm

It not only explains what SID is but also the types of problems that a child can experience if they have this disorder. The article also explains AIT auditory integration therapy in more detail. This was a route that we took with M, via The Sound Learning Centre, in North London. there are also some pretty useful checklist, similar to those we completed during the OT visit in August.

I found this paragraph on sensory modulation particularly useful:-

"Sensory Modulation
More recent information supports the thinking that the issue at stake is one of a disorder of sensory modulation, which means that the person cannot properly regulate his sensory input, and that the ability to maintain a situation-appropriate state is faulty. i.e. just as the eye should respond differently to bright light and to darkness by adjusting the aperture of the pupil, so should the acuity of sensory processing fit the sensation. But these children and adults have senses that respond with random and variable effectiveness. - i.e. are ineffective for learning."

Behaviour Support

This week has been a tough one, since we had the behavioural support unit feedback, whilst still digesting the OT report from last week. The meeting was very useful and yet struck just about every one of my parental raw nerves. In addition to his two IEP, M now has a very specific 'Individual good behaviour plan' The plan sets out exactly what is expected of M in terms of compliance in the classroom, although the terms used are far more PC. There is a five stage set of guidelines for dealing with meltdowns or disruptive behaviour, ranging from diversionary tactics to spending the lesson with a member of the senior membership team.

In addition, there are a number of strategies for staff to support the plan, many of which are in line with the parent line plus techniques I use at home;
http://sunshinetc.blogspot.com/2008/03/13032008-parentlineplus-getting-on-with.html

http://sunshinetc.blogspot.com/2008/05/monday-05042008-mayhem-and-meltdowns.html
These include the use of I cues, allowing take up time for requests, ignoring bad behaviour whilst praising the good and (a new one for me) saying thank you at the end of a request rather than please.

On one hand my more reasonable side could see how a meeting with six professionals in a circle probably the best way to thrash things out, on the other I have it is pretty daunting to be handed a four page document that we haven't had sight of to sign. We are expected to use the same strategies at home, so I was pleased that M's anger management measures are the silent whistle and hand prints we provided with his sensory box.
http://specialchildren.about.com/od/sensorystrategies/a/sensorybag.htm

Whilst I managed to stay very calm throughout, there were points during the meeting when I wanted just to say "Ahhhhhhhhhhhhhh!" Coordination and keeping track of the who does who and what has been extremely difficult. The OT report had not reached M's teacher and so it may be that the sensory strategies will also help with some of the underlying causes of M's behaviour.

The only issue I had with this process was that M had to join the meeting at the end, so that we could all say that we would help him being good. He had had a bad day and was already crying and so I was very uncomfortable with this. He reverted to jargon, which is usually a sign that he doesn't feel comfortable to speak.

I liked the dragons on the behaviour plan, with the good dragon keeping his fire under control and the other steaming. We did have an issue with the "making silly noises rule" since echolalia is spontaneous and difficult to control. Some of the language may also need to be modified as I not sure M has a clue as to what 'respect' or 'sensible' actually means. I guess on the whole I am hoping for a positive outcome from all of this, if not I hope that we will be able to start the statementing process, in order to look at alternative education route for M.

Christmas is coming

Its been a tough week in many ways so the Dad and I took a day out.

And took some time out to light a votive for M and all his endeavours

We had time for tea somewhere lovely

And did some window shopping

Bath is a beautiful city by day and by night

King of Rock 'n' Roll

We had a little trouble with the lip curl

But with plenty of practice, the result wasn't bad.


He had the moves down to a tee


And we had smiles all round when I told him that Elvis was actually a King.

Thank y'all very much ladies and gentleman.

Today the children at school participated in the attempt to beat the world record for the most people singing at one time. From what I can gather, schools right across the UK took part.

The children were asked to come to school dressed as Pop/Rock stars and knowing about my fondness for all things retro, I'm sure you won't be surprised that M went as Elvis.

ITV Lost for words

http://www.itv.com/News/tonight/episodes/Lostforwords/default.html

Thanks to Total Chaos for flagging this 'Tonight' news item up. The programme links the rise in speech and language delays, in children with who live in language poor environment. For the two children featured in the item, nursery places with specialist help in speech and language, speech therapy and more quality play and talk time with their parents, improved their speech dramatically. Both parents were eager to help their children and had obviously sought expert help and taken on board advice, about the problem their children had with language development.

Whilst the emphasis of the programme was, that the problem is caused by a lack of communication in the home, too much TV and even buggies that face in the wrong direction, there was one important element missing in my view. There are children who fail to learn to speak despite interested and communicative parents, who flag up speech problems early and ask for appropriate intervention. The specialist care, SALT services and nursery places with speech and language programmes are by no means available for every child in this country and so I believe that the programme over simplifies this growing problem.

We need speech and language groups so that parents and children who face similar difficulties, can learn alongside a speech and language specialist. I gleaned little from the general advice and black and white work sheets, given to me by the first SALT we encountered. I have learned from experience that giving a running commentary of anything and everything, is probably the last thing that a child with specific language disorder needs. When I said less, waited and listened more, M started to understand how communication can be a two way street.

I made mistakes in the early days by trying to cram M's world full of words so that we could share our experiences. I would have welcomed workshops and advice tailored to meet my child's needs. I therefore believe that is extremely important that children are assessed and treated as individuals, rather than a one size meets all blanket policy for schools and nurseries.

Its all going swimmingly

Today, M said he wanted to go swimming with the Dad. "I am going in the deep end all by myself and I won't need Dad's help" he said. Whilst the Dad was always close by, M managed to swim unaided for the first time and not only a couple of strokes, but about eight feet. Congratulations M!

More pieces for the Jigsaw

It has been a strange week with lots of reflection. We have finally received the occupational therapy report, which states that M has "significant" sensory processing and modulation difficulties. Now quite where that leaves us in terms of a correct 'label' for M's disability, I'm not sure. The Dad and I differ in our opinion of what is going on for M and we had one very difficult evening with long discussions.

The next day I travelled into town and we met up for lunch. We decided that whatever the label, M is simply M and we are covering all bases, with regard to his care. The proposed sensory diet, sounds like a godsend, I shall let you know how we fare, once we have received direction from the OT.

Virginia Beardshaw On Children's Speech and language Services

Today link is for Virginia Beardshaw's article on speech and language services, written for the Health service journal on the 8Th October 2008;

http://www.hsj.co.uk/opinion/speakout/2008/10/virginia_beardshaw_on_childrens_speech_and_language_services.html

This paragraph, really sums up what I, as a parent, am hoping for, with regard to the reforms suggested by the John Bercow review;

"With such a high proportion of the children's population affected, speech, language and communication needs are emerging as a new public health issue. That unwelcome fact, together with Bercow's legacy, might just help end the perennial pass-the-parcel funding rows about speech and language therapy support that create such anguish for families."

The child is King

At this time of year, I always seem to find something to cry about. Two years ago, I cried at the sight of my beautiful, silent angel in the school play. Last year, fat, silent tears slid down cheeks, because the angel sang the words to every song.

This year, M seems to have a brand new awareness of the Christmas story. He has ridden a donkey to Bethlehem

And held a brand new baby Jesus.

He has been practicing for a coveted role in the Christmas play for weeks. We even had to make a crown.

So when the letter came home to say that this boy WILL be the "King of Frankincense" this year, Mum let the side down and cried again.

We are so proud!!!!

We have had to make a chart to count off the sleeps, and I pray that he will triumph and be able to say his word.

If there is one song that sums up how I feel about M and the way he faces his challenges head on, it is this one!

http://uk.youtube.com/watch?v=qrctC6t0v4s

Proud Mummy moment

My favourite threads on Mumsnet are the proud Mummy moments, when parents share their childrens' achievements. These are sometimes little steps forward, or a break though in development that would be taken for granted by those with NT children.

During M's IEP meetings, we spend a lot of time talking about managing behavior and the Dad and I sometimes give his academic development a lower priority. It is of the up most importance to us that M is happy and can fit in with his classmates. This week, M was visited by the language and communication advisory service and the advisory teacher was really impressed at the progress he has made with sequencing. During the previous visit, M was able to describe one picture but was unable to link it to another. This time he was able to sequence three cards and tell a simple narrative and then progressed to sequencing six cards giving a simple narrative.

I was astonished to receive a photo copy of the story he was able to reproduce in writing, with help from his teacher. I smiled when I saw that he had written, "Little red Riding Hood was rood to Granny", since I had no idea that he knew what rudeness meant. It is such a non concrete, wooly concept. I thought about the great advice, given by a parent, in a recent AFASIC news letter "Have high expectations for your child, not low ones and celebrate success-nothing builds confidence more than this." I am constantly amazed by my son!

Today's link is for the Speech Disorder website and this page gives information about receptive language disorders;
http://www.speechdisorder.co.uk/receptive-language-disorders.html

It was from this page that I found a link to propeller products, which has some great resources;
http://www.propeller.net/?gclid=CKy934jC-ZYCFRLRugodHGy3ZQ

Family Traits

We always start our Christmas proceedings with a Trip to see Auntie L and uncle J. M, who adores cats, is in his element since there are three, much loved felines, happily in residence. Unlike our by now slightly deranged moggy, two of the three are very tolerant to M loving, plucking, squashing and nigh on choking them to death.

I realised this evening that we had probably stayed an hour or two two long, when I had the following conversation with DH:-

DH: "I saw a cat up the road, with a white spot on his throat and I told him he looked like just like Gizmo."

Me: (incredulous) "What did he say?"

DH: "He said Meow!"

Me: "So what did you say?"

DH: "I said, "Well you don't sound like Gizmo"

Me: "Snort, why did you say that?"

DH: "Because Gizmo says Meooooh, it's at least an octave lower!"

Me: Rendered unusually speechless.

I worry!!!!

Pyjama day Grrrrrrrrrrrrrrrrrrrr!

Mum: "Come on M we need to get ready for school, you have to wear your
pyjamas today"

M: "What Pyjamas? why?"

Mum: "Yes pyjamas. It is to raise money for the children who don't have enough to eat or who are poorly"

(Mum is thinking how the heck am I going to explain Children in need in literal terms?)

M: " No school uniform for school pyjamas for bed"

Mum: " Yes, but today everyone will wear pyjamas in class seven so they
won't laugh"

M: " Will everybody be wearing pyjamas, what to school?" (incredulous)

Mum: "Yes everyone, will you come and get changed we are going to be late."

M: " I don't need to get changed I am already wearing my pyjamas!"

Glimmers of empathy emerging

We have had some pretty remarkable strides in terms of M's social development, this week. On Monday, he was watching a Blue Peter appeal about world nutrition with great intent. I was surprised, not only because the I should have considered the language too complex for him, but also because I could see he was very engaged with the content of the item.

The child featured was an African boy, of around fourteen years old, who had been orphaned. It was quite a powerful story in that the child's loneliness was really palpable. M asked why the boy had no parents and was visible shocked that an awful gruel like substance, was all he had to eat. He picked up on the fact that if the child didn't a more varied diet, he was likely to die at a young age. M was also visibly relieved to see the new school vegetable garden which would bring the children much needed fruit and veg. It was some time however, before M could be pacified about the fact the the child probably wouldn't find new parents. He suggested that the presenter might like to become his new Dad.

I often find that I have to use what M has already understood, to help build him a bridge to help learn a new concept. Whilst we sometimes have to over learn these concepts, once they are concrete, he is often often able to make further connections himself. I am so pleased that M seems to be gaining more awareness to the outside world. It gave me the link I needed, to help him make the connection to the pictures of the little boy that we sponsor in Uganda. I hope that this will to help him to understand that there are people in other parts of the world who greatly need our help.

A round up of this week

I have so much to tell you about this week, that I haven't written a post for two days, because I didn't know where to start! Firstly, on the behavioural front, school is referring M for behavioural support. I'm not too clear what the role of this agency will be, but we welcome any advice and strategies that help M cope with his school day. We'll also get an opportunity to attend the feedback meeting, which is a relief. I don't think that there is anything worse than, than important decisions being made for your child, by professionals who don't take you through their findings.

The Dad finally had a phone call from the occupational therapist who visited Matty at home in August and at school in September. The observations were very similar to those that were made two years ago at the Sound Learning Centre;
http://sunshinetc.blogspot.com/2008/03/11-march-2008-sound-learning-centre.html

M has problems with his vestibular system, which affect his motor planning skills and balance. This means that he has difficulty knowing where he is in space and time, is under sensitive to touch and to the info that he takes in orally. I guess this explains, in part, his constant sensory seeking by mouthing, need for movement and to touch objects. His oversensitivity to sound and auditory problems go without saying. The feedback has given me nothing but relief and I was pleased at how well his fine motors skills and visual perception have improved. I was also heartened to hear the words "sensory diet" since I have been recently been reading The Out-Of-Sync Child by Carol Stock Kranowitz . Whilst the book is very helpful I didn’t want to implement any strategies without the guidance of a professional. I'm sure I shall have a lot more to say once the report is here and the recommendations are in place, but the OT said that it was highly possible that these sensory difficulties contribute to M's behavioural problems.

We have received a reply to our letter to our MP Ed Vaizey. We wrote to him to raise awareness of the difficulties we have encountered in accessing the right services to help M. Ed has considered our points regarding the lack of clear signposts to charities, independent services and support groups and has asked the minister he would consider asking all authorities to provide guidance to parents, around this. Ed has also written to John Bercow and the County Council to put forward our concerns about the special education system/speech and language therapy provision and advised us that he awaits the delayed publication of the Child Health Strategy. We are very grateful for his consideration; it is great to feel that we are being heard.

Finally on a personal note I want to thank my friends at Mumsnet for their continued support. Ladies what would I do without you? x

An Extra special post for today

I wanted to write an extra post today, for a young man who was six, before he came to know his Father well. Although I never got to meet him, I know that the airman must have made up for lost time, because his son went on to become the most fantastic Father and Grandfather!

This poem is by John Gillespie Magee Jnr, a young man who sadly didn't make it home;

High Flight

Oh! I have slipped the surly bonds of Earth
And danced the skies on laughter-silvered wings;
Sunward I’ve climbed, and joined the tumbling mirth
of sun-split clouds, — and done a hundred things
You have not dreamed of—wheeled and soared and swung
High in the sunlit silence. Hov’ring there,
I’ve chased the shouting wind along, and flung
My eager craft through footless halls of air....
Up, up the long, delirious, burning blue
I’ve topped the wind-swept heights with easy grace
Where never lark nor even eagle flew—
And, while with silent lifting mind I’ve trod
The high untrespassed sanctity of space,
Put out my hand, and touched the face of God.

But is it age appropriate?

I find it quite difficult to make decisions for toys and films for M at times. On the one hand, since he doesn't have learning difficulties as such, he enjoys age appropriate toys such as his Nintendo DS and on the other, he needs films and books that have age appropriate language. Whilst M has learned to read relatively quickly, we have to check that he understands what he reads.

I tend to let M take the lead in choosing his own gifts, but am wary of buying games, with a complex set of rules. M can be easily disheartened and frustrated if he is unable to understand to complete a game. He recently was able to articulate how it feels not to be able to join in the those that other children his age play with ease "I don't know why I do everything wrong!"We found old classics such as snakes and ladders, frustration and build a beetle, useful for teaching turn taking. Last year we bought, twister (to play with my more agile sisters) and lotto, both of which he absolutely loves. Matty adores cartoons such as Walle and Tom and Jerry, where it is all action and little talk.

I sometimes worry about the way he appears to his peers, (most of the boys who live near us are football mad and pretty sophisticated) but at the end of the day we both enjoy singing and dancing round the room to the Christmas Tweenies. M is hoping to be cast as one of the three Kings in the Christmas play, all thanks to Jake, another little boy who sometimes struggles to get things right.

All I want for Christmas

Apologies for the lack of posts over the weekend, I have been quite poorly. As my thoughts turn to Christmas shopping,my sister Lily is having a year of re gifting, in order to reduce her carbon footprint. The idea is that you don't buy anything new, in order to reduce the amount of unwanted gifts going into landfill. It has made me think more about what we buy and Christmas shopping this year has been....interesting

I came across this genius idea on the ICAN Talking point website http://www.adoptaword.com/
Here a list of words I'd like to adopt:-

Malapropism
Russet
Reach
Ditto
Soothe
Crocodile
Pelican
Elevate

What a great idea for a gift, especially as all proceeds go to ICAN. What are your favourite words?

In my language

Our minister has kindly forwarded today's link, which speaks so beautifully for itself, that it requires neither my comment nor commentary;

http://uk.youtube.com/watch?v=JnylM1hI2jc

Genetic Study Insight into SLI

A while a go I wrote a post on the Oxford university study into the theory that a faulty gene may be responsible for severe specific language disorder;
http://sunshinetc.blogspot.com/2008/04/monday-2104008-genetics-and-sli.html

Mumsnetter Brioche has kindly flagged up the media coverage of Dr Simon fisher's genetic study into the association between the gene called CNTNAP2 with SLI and, interestingly, possible links with the language disorders associated with autism.
http://www.ox.ac.uk/media/news_stories/2008/081106.html

The Times coverage of the study on 184 families can be read here;
http://www.timesonline.co.uk/tol/life_and_style/health/article5092857.ece
and here;
http://www.timesonline.co.uk/tol/life_and_style/health/article5092883.ece

It is hoped that these findings will go some way in helping scientist gain a greater understanding of how and why this gene effects language development, in order to help find ways to treat SLI.

The listening ear

I have had a tough couple of weeks with M. His anger seems to flare quickly and this in turn becomes aggression. It is sometimes hard to know what triggers this, but I wonder if it is because we haven't been communicating well with one another. I am a little care worn and weary, but I prefer to look for solutions, rather than being problem focused these days.

I read this article a while ago and at times like these, I often return to it;
http://www.foreverfamilies.net/xml/articles/listening_to_children.aspx

Apart from all the down to earth practical advise about listening as well as hearing, I love the owl poem by an unknown author, which I read for the first time during the ICAN workshop;

"A wise, old owl sat on an oak
The more he saw, the less he spoke.
The less he spoke, the more he heard.
Why can't we all be like that bird?"

Keeping it real

I've mentioned before that M loves to read and that he sometimes seems to have difficulties distinguishing what is real and what is make believe. M has recently been watching 'The Polar Express' and asked if he will be the boy who is chosen to receive the first present from Santa this year. I guess this links in with his semantic pragmatic difficulties. This link to family education, gives some tips and practical advice about using books to help children learn to tell the difference; http://school.familyeducation.com/school-readiness/early-learning/30618.html

In case we forget

Whilst, we live in a town we are surrounded by country side and in the summer we have some pretty spectacular fields of poppies nearby. M's eye is always drawn to them and he shouts "Look Mummy the fields are all red!" Last week, we spent the day in Reading where we visited the rather spectacular statue of a Lion, guarding war memorial, that honours soldiers who died in the 1880 battle of Maiwand.

http://gallery.future-i.com/England/reading/pic:Lion/

M ran to the poppy wreath that lay there and had to be dissuaded from running off with it. Recently, we bought poppies from a gentlemen wearing a regimental blazer, which displayed his military medals. "Who is he?" asked M "and did he win a race?" I realised that despite M's limited language, I would have to explain why we wear poppies and the subject of war. M lives in a world that is in the here and now, where by and large people are kind and good.

I wondered how to put this into a context he would understand. I thought about M's great Grandfather and the friend of my father, who had witnessed things I cannot imagine on the beaches of Normandy.How would I convey the fact that there are evil people out there even today? I'd need to explain that there are soldiers and sometimes even Dads and Mums who fight and die for causes and politics, I cannot hope to fully understand. On the one hand I have always told M that it is wrong to fight and hurt one another and yet on the other, I felt I compelled to tell him why war is sometimes necessary.

In the end I decided to tell him that there were people who were a bit like a bad king, who took away people's homes and hurt them. I went on to say that sometimes the good guys need to fight to save them. "But why do we wear the red flower" he said. I paused for a long time hoping to find the right words, and then answered "It is to help us remember all soldiers who have helped to keep us safe, in case we forget."