This week's highlights

We've had some real highs and lows this week but we finished on a high with two really good days. Firstly, we took a train to Pangbourne, with Lucy, Jim and Rachel. The kids had a whale of a time playing in a small park. The highlight of the day for them all, was simply playing with some newly mown grass. They rolled in int, fought with it and made a huge grass pile with it. When Jim told me that this had been his favourite day of the whole holidays, I realised that sometimes you don't have to pull out the stops and that the most simple pleasures can sometimes transcend the generations.

On Friday we had a fabulous day out at Drayton Manor park. We had the great pleasure of meeting up with Total Chaos and her son Totally Gorgeous. The boys bonded really well, despite their differing ages, and despite a few meltdown moments (for M) the day was a big success. We sailed on a ship past knights and dragons, drank coffee whilst the boys,

(including the big one) went on the wet and windy rides and just about made the zoo and the end of the day. It was lovely to meet up with someone, who really understands, both the joys and difficulties of bringing a child with a communication disability. Thanks again TC!

A fond farewell but not for long we hope

Today was M's last assessment with super star and SALT Aimee. He has one more session with Aimee in school before she puts her feet up and waits for the arrival of her first baby.

M has made such amazing progress in such a short time and we will all miss you Aimee. Look forward to seeing the baby pics!

A down day

Now, I am right in thinking that you don't just want to hear about the good stuff aren't I? Today has been a really difficult day in terms of meltdowns. It is unusual for M to play up in front of family, so I was a bit surprised when he vented his spleen in front of Nanny and Grandad.

M's bad temper started this morning at bath time and carried on through out the day, at regular intervals. We couldn't get M to sit and eat lunch at a restaurant and he spent the whole mealtime crawling under our legs and the table. He was simply in 'that place' that we SEN Mothers know well and there was no easy way of reaching him.

I often find the comments of well meaning strangers hard to handle during these times. One lady told me that it was a terrible waste to leave a plate full of uneaten food and another hoped that Nanny and Grandad were only looking after M for a short while. The second lady went on to say that she had five children of her own, all perfectly behaved of course. As I listened to the conversation in embarassment from the supermarket queue I felt like saying "I wish he was just being naughty" but we don't do we?

So, I am feeling a little care worn and weary and the plastered on public smile, can slip a little on days like these. Sometimes, explaining that M has a disabilty which we live with each and every day, can be more than a little wearing. Nanny and Grandad were as always, complete stars.

On a brighter note, I found a great link for resources right under my nose today. This is a mumsnet link to Sense toys and this page has some great toys to encourage verbal play/listening skills:- http://www.sensetoys.com/RNEMLDRKAE

Let's go fly a kite

At some point this week I stopped what I was doing and breathed out. I felt as if a huge weight had been lifted. I don’t think it was because I suddenly felt that all M’s problems had disappeared, or that I believed that our worst days were behind us; I simply felt sure in my mind, that we have done everything humanly possible to help M.

The quest to help M has been all consuming. It has preoccupied my thoughts night and day. I have felt guilt, searched for answers and challenged opinions along the way. Recently, M was watching a delightful advert, where babies are chuckling directly into the camera. He turned to me and said “Why are those babies laughing?” I replied that is was because they are happy and added that M was a happy baby. He turned to me and said “I still am still happy, I am a happy boy!”

Today we bought a kite and took it up onto a hill at a local nature reserve. The views were stunning, there was a kestrel hovering nearby and the boys had the best of times watching and chasing the kite as it soared and plunged. As I watched from a little way off I thought, “It doesn't get a lot better than this”

The day out

We had one of those rare days when M and I felt in sync with the rest of the world, for once. We travelled to Reading and spent time at 'The Beach' at the Oracle riverside. Despite having to fight the urge to kick and burrow sand everywhere like an over enthusiastic terrier, it was actually hard to spot the differences between M and the other children. They were all simply kids having fun together, playing in the sand. M even shared an imaginative game with a younger child, making a sand bed and covers.

M knew exactly how we were going to spend the afternoon, but he didn't react negatively to me nipping into a couple of shops on route. We had one hair raising moment when he made to slide down the banister of a two story flight of steps, but he responded immediately to my request for him to stop.

I was so very proud of M today because he behaved impeccably. He became a little anxious on the way home and slipped into echolalia, because he was unsure whether the train would stop for us to get off. I turned it around so that I asked where the train was heading and where it would stop, so that he could give me the answer. For some reason this worked beautifully and he was reassured in no time.

Occupational Therapy

Yesterday was really busy. We had more SALT assessments with Aimee in the morning and M worked really hard. he did particualrly well on the categorisation tasks and we were all very proud of him.

In the afternoon we had an hour and a half visit, with two occupational therapists at home. We went through the usual sensory checklists questionnaires with one lady, whilst the second worked through some pre-handwriting writing tasks with M. He hid in the corner for the first five minutes, but at the mention of his Spongebob picture, he climbed up on to the arm of the sofa and threw himself down onto it, by way of a hello.

Whilst M was very competent in completing the latter, a number of issues were flagged up, via the sensory questionnaire. here are some of the boxes we ticked for M.

Throws him self down or bangs into objects and people on purpose.
Fidgets, yawns squirms and is unable to sit still
Mouths and touches objects constantly
Seems to have poor awareness of where he is in space and time.
Risks safety of himself and others when using climbing equipment/ little sense of danger.
Is unable to respond to his name, when there is background noise
Is sensitive to loud noises
Often Spins, runs, jumps up and down
Is sensitive to certain fabrics
Seems both over and under sensitive to touch
Has gross motor planning difficulties
Problems with knives, forks and trousers zips and buttons
Has problems integrating his senses.
Has auditory processing problems.
Is constantly seeking sensory stimulation by constant movement, wet and messy play.
Is distracted by sights and sounds around him and often fails to finish tasks unless helped to re focus
Often gags on foods he doesn't like and is sensitive to very soft or lumpy foods.
Poor muscle tone in his upper torso
Talks through verbally what he is doing.

The therapist who worked with M will be visiting him at school, which was a relief as his ability to concentrate at home is far better than it is, within a noisy classroom environment. We'll also receive a copy of their report and recommendations.

In the meantime we were advised that the following would be useful and given some very useful websites for purchasing these items :-

Junior caring cutlery; these have groves to guide the fingers to hold the item.
http://www.benefitsnowshop.co.uk/shop/detail.asp?bid=GDSJ-572036&item=4704

Move 'n' Sit Cushion (Junior)
http://www.norlite.co.uk/acatalog/Balance_and_Co-Ordination.html
This is more appropriate than the disco-it seat I had been considering because the wedged shape will help with posture and stability whilst still satisfying his need for movement. He'll need one of these at school, as well as at home.

Left handed scissors (this is a no brainer really!)
http://www.anythingleft-handed.co.uk/acatalog/childrens_scissors.html

I shall add these links to the useful links section as usual and am hoping that this intervention may be the missing part in the jigsaw puzzle, in making life easier and more comfortable for M.

I have to smile, whilst I have been writing this M has been beavering away and has just presented Gizmo the car with a beautiful Valentine. I think we can guess which episode of Spongebob he has been watching.

From Here To There and Back " My brain is talking to me"

When I read this post from Kristen Spina's Blog, 'From here to there and back'
http://kristenspina.wordpress.com/2008/08/13/this-is-your-brain-hello-are-you-listening/ it really struck a chord with me.

M has been telling me over and over recently that "His brain is working now" I was equally touched to hear him say that Aimee has helped him make his brain work. M often gives us a verbal commentary of his thoughts, especially at the cinema.

Good news this evening, Spuds in being discharged from hospital in the morning!

The Good Fountain

I've spent most of the day with Spuds, who is comfortable, but has to stay in for at least another night.

Just a little post for today. The Good fountain is a great blog that charts the journey of a Mum whose daughter has a number of sensory based diagnoses. I particularly liked this post concerning 'a sensory diet.' this is something I have been exploring recently and will be asking the Occupational therapist about on Wednesday:-

http://goodfountain.wordpress.com/2008/06/15/the-power-of-the-sensory-diet/

Get Well Soon Spuds

Grandad Spuds has not been too well of late and we are all a little relieved that he is spending the night in hospital. Get well soon Dad xxx

http://uk.youtube.com/watch?v=6WMyF9rouZs

Summer holiday Snippets

Digging to Australia

Castles in the sand

Boom!

A real castle


And a castle of my own

Sorry the posting has been a bit sparse this week. The Dad has been off to celebrate his birthday and our Anniversary. Good planning on my part, he doesn't need a present he has me!!!

House of Commons debates the Bercow Review (Monday, 21 July 2008)

Today’s link is to the Commons debate concerning John Bercow’s review of children young people and speech language and communication.

http://www.theyworkforyou.com/debates/?id=2008-07-21a.554.0

John Bercow speaks of this review as “The single most stimulating and rewarding endeavour of his political life.”

I am heartened to hear that the emphasis going forward will be on early identification and intervention for children who struggle to acquire speech. Added to this is the promise of “specialist services” for children like M, who have acute and ongoing needs, rather than the current drive to prioritise those children with needs that can be treated swiftly. The lack of services for children with Autism in particular was highlighted, as was the need for a broad range of services.

John Bercow refers to the need for "joint working of services". One of my biggest frustrations has been the fragmented and disjointed approach of the various agencies who provide M's care. There seems to be a vital need for someone to take responsibility and to coordinate the needs of children holistically.

David Blunket emphasised the need of services for the family as a whole, rather than just for the child. Since my skills in helping M have been learned mostly from books and from the fantastic ICAN workshop, I couldn't agree more with this statement.

I felt that it was a shame that such an important debate to place to almost empty benches.

Michael Phelps' Olympic triumph

Today's link is to an article about Olympic Gold medallist Michael Phelps by the Additude website.

http://www.additudemag.com/adhd/article/1998-2.html

Michael's Mother Debbie speaks of her feelings, when she received Michael's diagnosis “That just hit my heart,” says Debbie. “It made me want to prove everyone wrong. I knew that, if I collaborated with Michael, he could achieve anything he set his mind to.”

She discusses how she encouraged Michael to channel the excess energy he had due to his ADD, into his outstanding gift for swimming.” Over time, as his love of swimming grew, she was delighted to see that he was developing self-discipline." “For the past 10 years, at least, he’s never missed a practice,” she says. “Even on Christmas, the pool is the first place we go, and he’s happy to be there.”

Debbie, who was a teacher herself, challenged the opinions of teacher's who focused on Michael's weaknesses "“Whenever a teacher would say, ‘Michael can’t do this,’ I’d counter with, ‘Well, what are you doing to help him?’”

Whilst life was probably far from easy for Michael and his family, it is encouraging to see that what can be considered an impediment in life, can also contribute to such an amazing triumph.

Contact a Family

I have gone through various stages in terms of talking about M's disabilities. Last year was particularly tough in terms of dealing with parents in the playground. As a result of this, I felt I had my fingers burned whilst trying my best to discuss M's difficulties with other parents. I resisted all offers of help and nudges in the direction of support groups, because I felt that we should be entitled to come to terms with the problems in privacy.

Little by little I formed a close network of trusted friends, with whom I felt safe talking things through. Over time I began to wish I could speak to other Mums who were dealing with similar issues, on a daily basis.Those of you who read the blog regularly, will know how much advice and support I have received from Mumsnet. It came as an immense relief to be able to talk to people, who really understood the impact that M's diagnosis has had on our lives. For the first time I have felt that I am not alone.

I have joined a local support group and have recently been looking at 'Contact a family':-
http://www.cafamily.org.uk/index.html I think that it would be really useful to speak to other parents of children with SLI, as much to compare notes as to offer mutual support.

Hyper sensitive kids’ blog

This week we have been exploring our options with regard to occupational therapy for M. We asked for a referral via our paediatrician last October, but despite many phone calls this has not materialised. I am particularly concerned that M has sensory integration difficulties and muscle weakness in his upper torso, which aren't being addressed.

The Dad managed to make contact with an independent OT yesterday who recommended balance balls and disco-sit- seats:- http://www.benefitsnowshop.co.uk/shop/detail/3075.htm

Whilst looking for these items on the net, I found this incredible blog by Mama Rose, written about her son who has a number of sensory related difficulties. I absolutely loved her recent post on Thomas Edison :-

http://hypersensitivekids.blogspot.com/search?updated-min=2008-01-01T00%3A00%3A00-08%3A00&updated-max=2009-01-01T00%3A00%3A00-08%3A00&max-results=2

Mama Rose’ post sensory processing disorder in the class room was particularly helpful and relevant:-

http://hypersensitivekids.blogspot.com/2006/05/sensory-processing-disorder-in.html

I also found the website and article she quoted from extremely useful:-

http://www.sensory-processing-disorder.com/

The Joint Meeting

I'm not sure if I have mentioned that our independent speech and language therapist is going on maternity leave very soon and so M is having his CELF assessments over the summer. In some areas he has made tremendous progress over a relative short period of time, but in others he is still on the 3rd centile. This indicates that he is still at the severe end of speech and language impairment. We are really pleased with his progress and are very aware that we are in this for the long haul.

We have found a lovely lady (whose particular area of interest is in ASD/SLI), to cover Aimee's leave. We all met for the first time (without M). The meeting went really well and I am more confident that the transition in September will be a smooth one.The first few weeks of the new school year are often difficult and unfortunately we weren't able to meet M's new teacher, because she is new to the school. We are therefore anticipating a few teething problems next term

I spent the last few weeks prior to the end of term, finding out which professionals deal with what in terms of care and coordination at school. I now feel I have a clearer picture as to what the State are providing with regard to SALT provision and I am hopeful that we can access the help that M is (should be) entitled to, alongside that which we provide.

Nanny P’s Special Day

It would have been Nanny P’s birthday today and so my thoughts have been with her for much of the day.

Although officially she was the Dad’s Grandmother, over the years she inexplicably filled the void that my own Grandmother left. She'd tell me often that I was quite an old fashioned kind of a girl. I took this as a compliment.

Nan liked things done properly; she liked hats and gloves for Church and embroidered tea tray cloths. She could bake, knit, sew and crochet, skills that I have clumsily failed to master over the years. She told me lots of stories, about life in her post war prefab which had a wooden floor that she polished until it shone. I loved to imagine the grand dances and big bands that she enjoyed so much with Granddad R; but I was aware that if you looked beyond the tales of the good times, there was a subtext of a life that was sometimes far from easy.

Nan and I loved to exchange letters; she particularly liked my stories of M and his escapades. I wrote to tell her how proud I was of my first antique, a beautiful Victorian chest of drawers. The next letter described how M had shown off his writing skills, by carving his name right across the top. He had even underlined his efforts with a flourish. I knew as I wrote this, that Nan would be tutting and hiding a smile when she read my letter.

She would assure me that we were doing a great job at being parents, as she knew that at times, I felt far from confident. She called M her little dumpling, which was a fair description of the delightful toddler that he was. If I had to sum up what I learned from Nan, it would be that you should keep your dignity above all else. I miss so many things about her, not least of which her visits which gave us all a sense of occasion. I still look out for trinkets and pretty things that I know she would have liked and mentally make notes for letters that I can no longer send.

Happy Birthday Nan xx

All that Glisters

This has been a week of pirates and buried treasure. The sandpit has been transformed into a smugglers cave and we have had to have many many treasure maps where ‘X’ always marks the spot.

Poor old Granddad Spuds isn’t feeling too well at the moment, so M and I took the train Home to see him. We took the short walk through past the Church where a girl I once knew well, got married in an enormous dress about million years ago.

M ran ahead and as usual, I was distracted by the narrow gravel path that runs along the back of the Church. My eyes came to rest on the small marble tablet, that bears the name of a childhood friend, who will always be seventeen.

From the corner of my eye, I suddenly glimpsed M flapping his arms excitedly and jumping from grave to grave shouting "Look Treasure!" I realised that M believed the numerous Victorian stone crosses at head of the graves, marked the site of buried treasure. He seemed equally impressed however, when I told him that there were skeletons down there and that we mustn't step on them. His eyes grew bigger and rounder and he asked if the bones were buried in a treasure chest."Errr sort of" I replied, hastily checking that no one had left a shovel lying around!

Sacha's story

Today I visited to Mencap's website and I have to say I was very impressed. I laughed and cried watching Sacha's video about her son Joshua :- http://www.mencap.org.uk/landing.asp?id=8

Sacha mentions how she got over her initial embarrassment about her son's unusual behaviour and came to embrace and even join him doing things his way. This echoes the way in which I learned to reach M by trying to look at the world from his perspective. She talks about Joshua's ability to opt out and switch off as being '"a beautiful space" and says of their life together; "As much as there being tears heartache, there are equal amounts of joy"

I also loved Sacha's video about accessing support and how being the parent of a child with communication difficulties, can feel isolating and exhausting. She emphasises how important accessing the right services and getting the right support can be.

http://www.mencap.org.uk/externallink.asp?id=2959

Echolalia

I know a number of my regular readers have younger children, with speech and language difficulties and a recent comment on mumsnet, has inspired today's post.

I can't remember exactly when I became aware that M was displaying more and more repetition, during his speech. I think he must have been round three and a half to four years old. It was at about that time that I began piece all of my concerns about M's development together, to make cohesive sense of things. I began to do some research on the net and read that M was displaying both immediate and delayed echolalia. Worryingly, his patterns of speech were an indicator towards the behaviour of children on the autistic spectrum.Red warning triangle here,(and you know what's coming) It is always better to discuss you concerns with a professional.

M would repeat back the last part of each sentence as an affirmation, for instance I'd ask "Would you like a drink?" and he'd reply "Like a drink". He'd also pick up a catch phrase from the TV, or a particular expression of speech from another child, which he'd repeat over and over again. M would associate these repeated phrases with a particular person or place and would repeat them each time visited. This would happen even if the event was months apart. One phrase that sticks in my mind is "Catch a ball and saileys down" which made little sense to me. M would also slip into this mode if he was anxious.

As the full time parent of an only child, I found this phase difficult. I felt quite isolated and lonely and I don't mind telling you that on some days I felt I was being driven mad. It sounded as though M was like a broken record at times. I became acutely embarrassed when visiting friends, especially as the children found this funny and would encourage him to repeat favourite phrases. In retrospect I feel slightly ashamed of having felt this way, but I felt less and less part of the mainstream world. At times I felt as though my only function was to service his needs, that communication was purely for his benefit and that conversations were in no way reciprocal. We seemed go round in speech related circles as did the sole question that haunted me day and night Why us?.

M's Spontaneous speech gradually took the place of the echolalia and I began to find ways of moving him on when his speech became repetitious. Sometimes simply repeating back what he had said, reassured him that his message was getting across.

I found this article "Echolalia and Autism" by Gary J. Heffner, M.A. Judevine® Autism program at ECRH published in July, 2000 comforting :-

http://groups.msn.com/TheAutismHomePage/echolaliafacts.msnw

It discusses research that suggests that echolalia has a specific value, in terms of speech development.