Dear Bumble and Spuds

I saw Mummy kissing Santa Claus

How did I know that The DS games FC brought would be a hit?

Nanny has only had one glass honest!

I fear I have omitted to write an important post this week, since I haven’t told everyone about our Christmas day. It wasn’t that this slipped my mind so much as wanting to enjoy the whole day with you both without looking at it through the eyes of a blogger.I sometimes catch myself writing an internal narrative, during day to day events. Its a bit like floating outside of your body and looking down at real life. Ah the perils of blogging!

For The Dad and I, Midnight Mass is a very important part of Christmas. It was great that we could take part in the candlelit service, knowing that M was safely tucked up in the family fold. It wasn’t until I became a Mother myself, that I finally understood what it must have felt like to be giving birth to such a special boy, in such meagre surroundings. No gas and air no epidural, no disinfectant phew!! Do you remember how Lily (my sister) once gave a lovely child's eye view of the nativity story? She said that the baby Jesus wasn't very happy, because he had straw up his nose. How like Lily to be figuring out how Jesus might have been felt, she is after all the family philosopher.

It is true that M has come on in leaps and bounds this year. He opened every present carefully and communicated his pleasure at every gift, both verbally and with by his expressions of delight. Earlier in the week, he asked how many sleeps it was until he could stay with Nanny and Granddad and he cried all the way home Christmas night, because he missed you already. Wasn’t it lovely when he sang Happy Birthday to Jesus during Christmas dinner? We have had very few meltdowns during these holidays and his questions about everything and anything have been a real joy.

I expect that you were a little puzzled by yesterday’s post and I hope that you didn’t think that I haven’t acknowledged that M has made massive progress. When we visited the Sound Learning Centre, Pauline Allen said that she expected M to be ‘A flyer’ in terms of how he was likely to develop. In many ways she isn’t far wrong. I often think of his development in terms of a climbing wall. M has times when he clings to familiar foot holds and old habits, sometimes even taking a backward step. At other times he leapfrogs up the wall, missing out several smaller steps along the way. It is as though he has a jigsaw puzzle with bits that don’t quite fit together. I sometimes have to stand back and take an objective look at how things are going.

In some ways, although he is making marvellous progress, he is still light years away from his peers in terms of emotional and social development. The things that he finds harder to read are the nuances of speech like insinuation, inference and irony. It is the small details and the idioms that we that we take for granted in every day speech, that are harder for M to learn. He lives in a very literal world. Between you and me though, it seems like a pretty nice place to be.

I have no doubt that M will make a considerable impact on the world and will win everyone he meets over with his honesty and his humour. His journey has been made far easier with the love of Two Grandparents who have every faith in him.

Thank you for a lovely Christmas!

George and Sam by Charlotte Moore

I apologise for the lack of posts recently and will make amends with a slighter longer one this evening.

A big thanks to Shells for recommending today's book; I have been glued to it for the past few weeks. George and Sam is a frank, informative and honest account of life, from the Mother of three boys, two of whom are autistic.

I could identify with many of Moore’s experiences, her description of the chaos Sam caused in the kitchen, by emptying a large container of olive oil, brought a empathetic smile to my lips. I literally begged the Dad to fit a lock on the kitchen door, not only to stop M's constant grazing from the cupboards and fridge, but to halt the unholy mess making that was a daily occurrence. M would seek out flour, eggs, sugar, and ketchup cleaning materials, poster paint in order to throw them at the kitchen floor from a great height. For a while we had sodden toilet paper sculptures on the ceilings and litres of shampoo or bubble bath on bathroom/cloakroom floors. Nothing was sacred, lipsticks were devoured, nail varnish used to paint the new sofa and bottles upon bottles of foundation tipped over carpets. Whilst this was by no means a short lived phase, I have noticed an improvement in M’s behaviour now that his language and imagination are more developed.

The chapter on the boys’ language development was particularly interesting. Like George, M enjoyed the rhythm of speech and could quote huge chunks of poetry by rote, whilst having no idea of what the words actually meant. "Twas the night before Christmas" was a great favourite from August onwards one year. Echolalia was and occasionally still is a feature and Moore advises “All echolalic behaviour should be investigated, unless you’re very sure that a joke is intended.” I was similarly struck by the use of made up words and phrases, I wrote a very early post on this, at the beginning of the blog;
http://sunshinetc.blogspot.com/2008/04/monday-07042008-jargon.html My own language development mirrored M’s ability to mimic and make up his own words.

M also used statements or partial sentences to make requests and called himself by his first name until he was at least five and a half. I have mentioned before that he finds pronouns tricky. I don't think I am alone in wondering whether some aspects of his behaviour relate to his language disorder, or whether high functioning autism could be an issue.

M, like Sam, also used to be totally unaware of danger and seemed to have no fear of being lost. He would run away in woodlands and didn’t respond to his name being called. This too developed eventually, albeit later than I would have expected.

I was equally drawn to the differences between M and the boys. He can identify the heroes and villains within a story, although this can be slightly skewed if the language and visuals are subtle. M has been a very talented artist from an early age and used gestures, and drawings to communicate. He has a full range of different expressions and responds to the changing faces of people around him. Whilst he has periods when he seems to be in his own world, we have come to realise that he is still taking in input from what is going on around him.

Moore cites a theory that autistic babies fail to cooperate with the birthing process and therefore have more complex births. I was left wondering whether this could have been an issue for M who was brow presentation and born by an emergency C section.

I was also heartened to read about her the boys treatment with auditory integration therapy, a route we have also taken. The fact that it worked well for George, but not Sam, emphasises how diverse and unique the different sensory needs of children on the spectrum can be.

All in all I found this book to be illuminating and thoughtful. Whilst Moore worries for the future of her beautiful boys, I found the overall tone of the book to be sensitive and optimistic. I am pleased and grateful that she has chosen to share her experiences with a wider audience.

My Christmas Gift

We had a really lovely day in Salisbury, with Lily and G today. We had breakfast together and then paid a visit to Salisbury Cathedral. There were eight beautiful stone angel heads, which had been installed to mark the Cathedrals 750th Birthday; http://www.telegraph.co.uk/news/newstopics/religion/3489867/Angels-adorn-Salisbury-Cathedral-for-750th-anniversary.html

M ran back and fourth asking questions and chattering nineteen to the dozen. I took a moment to savour the little character that has been emerging over the last twelve months. For most parents speech is something we take for granted and constant questions are what we all expect from a child of three or four. For children like M each tiny language milestone he achieves seems to be a giant leap to us.

He has given me knowledge not only of his own difficulties, but also those of other children who are unable to communicate well. I have learned to be patient and have had to slow my thoughts and the rhythm of my life, in order to help M keep pace with the rest of the world. M’s uncle G summed up my view of M when he said “We may never know what is going in that wonderful mind of his."

Warwick Castle

Warwick Castle is a family favourite and a visit is a Christmas tradition for us.

But this year we were greeted by an Elf.


Whilst there are times when M seems disconnected from his environment,

He loved meeting Father Christmas!


It was a joy to see him interacting with other children this year.

He found a princess

And chatted to other mystical creatures in the enchanted forest.

Thanks to all the staff at Warwick Castle, for giving us such a special day!

Splitting hairs

A good friend called into see me yesterday and we exchanged Christmas presents. M was very quiet throughout the visit.... too quiet. It would appear that he felt that his fringe had been rather long and tickly, so he had attacked it with a pair of scissors. He had cut the middle section right up into the hairline, leaving the sides long. It gave him the a appearance of a ernest Franciscan monk. At first I thought I should leave it to grow, but he woke up with a bad case of bed hair, so we hastened to the barber.

Despite my plea, he insisted that it would have to cut really short and the end result is a kind of urchin cut, which makes him look like a cross between the artful dodger http://uk.youtube.com/watch?v=yPGRUrvuNGk and Mia farrow. http://uk.youtube.com/watch?v=_8txW_kSwU4&feature=related

Thanks to Total Chaos for today's link http://www.dcsf.gov.uk/slcnaction/ to the department for children schools and families article, detailing the government's response to the Bercow Review. I have recently given permission for ICAN to submit the details of M's assessment including a detailed account our fight for SALT services, to be submitted as an example, for the Brian Lamb enquiry into parental confidence.

Whilst on paper the action plan, which includes a review of all children's speech and language at age 2 to 2 and a half, sounds promising, I shall be watching with interest to see just how this translates into practice at a local level. It worries me to read that SALTs will decide whether a child should have one to one sessions, or whether to train others to carry out the speech and language work. This simply did not work for M. The work set by the NHS, SALT termly, in no way met his needs and these failures were highlighted by the the ICAN assessment.

M has been know to power through an IEP objective in three weeks. I would question whether an LSA or even a teacher would be qualified to set new speech and language objectives and/or have the capacity to find the relevant resources.

"You are the Sunshine of my life."

Its been a really long and tiring day and it is the Dad's night out. I have been ignoring the sound of baby elephant feet, running back and forth between his lordship's room and the bathroom. I knew I shouldn't but I just needed a sit down, some trashy TV and a cuppa to unwind with.

Ever since M was Elvis the other week, he has been trying to re create the quiff with all manner of substances. We have had hair spray, shaving foam and even perfume so far. Tonight he has finally managed to get the desired effect with........ toothpaste. Am a bad Mummy for thinking that there are worse things in life than spending the night in spearmint fragranced sheets?

http://uk.youtube.com/watch?v=uPyq4iqt6Go&feature=related

Sigh. I'm never quite sure who rescues who.

Donna Williams

I am a recent, but huge fan of Donna Williams and am really honoured that she stopped by the blog today to leave a comment;

http://sunshinetc.blogspot.com/2008/05/tuesdsay-20052008-donna-williams.html

I am currently re- reading "Somebody somewhere" which is a source of inspiration and comfort to me and will certainly be logging on here http://www.myspace.com/donnaandtheaspinauts to hear Donna's latest tracks.

Speech-Language-Development.com

I discovered this rather fantastic blog today, written by speech and language pathologist Robert Kurz. I really like the straight forward advice and matter of fact style of his writing, particularly the sites homepage;

http://www.speech-language-development.com/index.html

There are some great facts and advice for parents starting out on the speech and language evaluation path.

I also loved this post;

http://www.speech-language-development.com/preschool-temper-tantrums.html

It seems especially apt for this week. M has been out of kilter with the lack of routine and chaos, which inevitably comes with Christmas. The idea that children with speech and language difficulties use more energy than those who aren’t impaired seems highly plausible. Krurz suggests that the answer to the meltdowns this causes is for children to take “Brain breaks” doing activities which do not require language input.

Kansa University Studies on Speech and Language disabilities

A few weeks ago, I posted about the ITV programme "Lost for Words"

http://sunshinetc.blogspot.com/2008/11/itv-lost-for-words.html

During the programme, there were some interesting snippets from the Kansas University long term studies on the correlation between the about of verbal communication in the home and language acquisition in children. Whilst I couldn't find anything online about this study specifically, this link details the publications by the Merrill Advanced Study Centre;

http://www2.ku.edu/~masc/publications/science_intro.html

The Nativity (A star is born)

M has had a fantastic day. I was lucky enough to see both of his performances in the school play and he was an absolute star. He sang, danced and did all of the actions. There was a wonderful ad lib in the first one when M picked up a piece of paper from the floor, during a quiet moment and announced "Its a straw". I was really pleased when his speech therapist said that he is a natural performer. She admitted that she had choked back a few tears at his progress this year. What a wonderful job SALTs do. I can't find words to express the difference weekly SALT intervention has made!

It is a relief to know that M is finally coming out of his shell and wants to communicate to an audience a little wider than just Mum and Dad. I wish I could show you the video of his special King dance, but of course I have to respect the privacy of the other kids. Suffice to say it was unique!!!

Damn I had my heart set on him being an Olympic athlete, not a world class actor ; )

All Good Cheer

I find that Christmas is actually quite a difficult time for M. It must be over whelming for children who have sensory modulation difficulties. A quick trip to the supermarket this afternoon, was an absolute nightmare. The Salvation Army band were playing cheery carols in the entrance, different Christmas jingles were being broadcast over the sound system, giving the effect that you get when you set off ten of those awful Christmas singing toys. Added to this was the fact that the whole store was heaving with shoppers. I wondered for the millionth time what it must be like to be M.

At school, all of the routines that make him feel safe and secure, are thrown out of the window. Since September, we have had three different dressing up days and play rehearsals, Christmas crafts and costumes, take the place of the normal syllabus and the familiar school uniform. We are also trying to input all the strategies on the really useful behavioural plan. All in all we are not at our most perky.

The other day I felt quite sad as I watched M struggle with his temper. The cat had scratched him and he had taken refuge in the cupboard under the stairs. When I opened the door I found him screaming silently. I'm not sure if this is a sign that he is learning to control his anger, so much as suppress it.

At this point I'd like to come up with a ten point Christmas survival plan, but unfortunately I don't have one. So if anyone out there has some tips or handy hints they could share I'd be most grateful.

As is always the way, I came across this great post from the sensory foundations blog, after I had written my post for today:-

http://sensoryfoundations.wordpress.com/2008/11/28/save-it-for-a-rainy-day/

I shall be pouring over this one as bedtime reading.

Useful Links

Since the blog this week has been light and fluffy, I thought that I'd redeem myself by posting some information and useful links.

Recently, a couple of people have asked me about M's treatment at The Sound learning Centre. Whilst their link is permanently on my side bar, the information in my original post,
http://sunshinetc.blogspot.com/2008/04/thursday-17042008-auditory-processing_4958.html is a little light on content. Here are the information links from the revamped Sound Learning Centre website, which explains Auditory integration and light wave therapy in more detail:-
http://www.thesoundlearningcentre.co.uk/treatment/sound-therapy/

http://www.thesoundlearningcentre.co.uk/treatment/light-therapy/

I also came across this website,
http://www.wordswell.co.uk/latest-news.php a Cambridgeshire based organisation, which has a wealth of useful links and news items, including the SEDIST petition to Downing street.

Finally, M's SALT mentioned speech bubbles, during our last meeting. Total Chaos has kindly pointed me in the direction of pragmatic semantic speech bubbles from Winslow resources, product number 5003. These are work packs which depict familiar scenes with speech bubbles, which can be used for visual or written cues.
http://www.winslow-cat.com/cgi-bin/Winslow.storefront

Ladies and gentlemen introducing 'The Voice'

I had something else planned for today's post but, I was very honoured that M let me video him singing for the first time. I thought that I'd share it with you.

Whooo!

"All I want for Christmas is my two front teeth"

I haven't been too well this week, so I was pleased that the Dad is back from his business trip, because we had planned a day out together. We had just parked the car and gone into a fabulous deli in a nearby town, when the Dad's mobile phone rang.

Now I am used to our time together being punctuated by work calls, but this time it was the school to say that M had had bumped heads with another child and lost his two front teeth. We arrived at the school to find him cheerfully hold one tooth in an envelope and displaying the other which was still hanging from a thread in his gum.

I blame Nanny, since she has been singing this bloomin’ song for weeks; http://uk.youtube.com/watch?v=SOYRdvyttW0&feature=related

Silent Whistle

Sorry for the lack of posts this week, I have been a tad under the weather. Now if I said that to M, he'd be looking out under the skyline for me.

I think that I mentioned earlier in the week that we have gone back to a number of strategies that we used when M first started school full time. One of the sensory overload/anger management tools that we used were hand and footprints for deep pressure and a silent whistle.

Since our sensory box has disappeared into thin air I ordered two more silent/dog whistles from eBay. They arrived promptly enough, only they are not silent and M isn't only using them when he needs to calm down. There is currently a noisy squeal following me from room to room..........

Anyone know where I can buy a really quiet silent whistle PLEASE?