Son1 is 15 today-and proof that the right support can work miracles

Today is the International Day for Persons With Disabilities, which will be marked worldwide. It’s also Son1’s 15th birthday and I would like, today, to offer a message of hope for parents of children with behavioural problems and Asperger’s who are worrying what the future may hold for their children.

Son1 - All rights reserved

Aged 7

When Son1 started school, we already knew that it was not going to be an easy ride. Fiercely intelligent and sporty with a bright blonde mop of hair, we still hoped for the best. At pre-school, the undertrained staff had already shaken their heads at his unwillingness to go along with everyone else. If he couldn’t have the colour cup he wanted, he would rather not have the drink. He would tear around, regardless of who was around him.

Within the first few terms of reception, he had a behavioural chart. He couldn’t bear to be anything but first in the queue and if something went wrong, he would sit under the table and refuse to move. He found it impossible to see others’ point of view; on outings he was a danger to himself. Making and keeping friends was another issue. Needless to say, this all had an impact on his learning.

He loved football but would often sulk on the sidelines if he couldn’t play where he wanted. At home he would have rages, was often uncontrollable and nothing we did seemed to make any difference.

Needless to say, we were drained, stressed and desperate to help him. I even helped in school twice a week to make sure I knew what was going on there. My husband became a team football coach – something he still does – to support him.

So, lacking any useful help or advice from school, I got wise, did my research, got a referral to a paediatrician and discovered what the problem was – Asperger’s with Hyperactivity. I worked really hard to get him the statement he needed to support his social and emotional needs. We tried and discounted medication; we tried a different diet. This was against a backdrop of having a younger son with medical, social and educational needs for whom we also had to find a solution.

And find it we did.

For the last five years, as you may know, both our boys have been at the most fantastic independent specialist school that is designed for bright boys who find it difficult to learn in a mainstream setting. They may have dyslexia, dyspraxia, increasingly Asperger’s or another learning difficulty. Schools like this are few and far between and, as far as I know, there is no comparable girls’ school. We even moved house to be closer for the daily school run.

Son1, now he has been getting the right education in the right environment, is growing into an independent, clever, thoughtful young man. He has a love of, and a talent for music. He has a sense of humour. He still has his impulsiveness and stubbornness but he listens to reason – as long as you don’t ram it down his throat. Best of all, he has friends.

Some of this is down to growing up in a stable home with a family who work hard to make sure that he has what he needs – which is not always the same as what he wants. But mostly it’s the intensive input and care from the experts in the Learning and Development Centre at school

Son2 winning Chairman's Player of the Year for 2012

Son2 winning Chairman’s Player of the Year for 2012

I’m telling you this because I know very well that there are parents reading with younger children who are still at the ‘before’ stage. Who may be wondering where to turn, who can help them or if their child will ever have the kind of life they had envisaged for them. They will have faced disapproving looks from parents at the school gates and from teachers who are not trained in either recognising or supporting this type of child.

On this Day of Disabilities, I also think of those children with such severe difficulties that they may never reach adulthood, or who will be dependent on their parents or on medical care for as long as they are alive. And I realise that we are lucky. Our younger son does have medical difficulties that we have been struggling to get to grips with and this is hard, with an uncertain future, but we have experience enough now to know that we will cope.

This is not to say that some have it worse so you can’t feel bad – no one can tell you how to feel and when we see our children suffering it is devastating, whatever their condition.

But for boys like Son1, there is a solution. It takes lots of work, determination, strength and persistence – for them, you and their school. As further proof, this year at his football club, he won the Chairman’s Player of the Year Award. He played in goal for two seasons to benefit the club, even though he prefers being a striker.

My message to you is do not give up. Keep looking until you find the right solution. Get educated, get help – for your child and for yourself – but above all, believe that the future will be better.

Beech Lodge: A new school offering a practical approach to learning

For some children, a mainstream school setting can be overwhelming, particularly if they have learning difficulties such as dyslexia, dyscalculia or find it otherwise difficult to learn in the same way as the majority of children.

However, there are very few schools that are set up for children like this for whom a specialist environment is needed.

Daniela Szmigielska and Emma Barklem from Berkshire decided to tackle this to help their own children and others like them by starting their own school.

Opening in January 2013 in Hurley, Berkshire, Beech Lodge School will be a new small independent co-educational day school for children between the ages of 7 and 16+ whose particular needs may not be fulfilled in a mainstream setting and who may not warrant a special school place.

The school building at Top Farm is a newly converted barn in a rural setting which is currently being completely refurbished. It will provide the classroom, assembly and office space suitable for a small number of children, including a garden and for playing and working in, as well as nearby access to woodland and sports facilities.

Beech Lodge will offer an innovative and hands-on approach to education for those children who require an individually tailored learning environment to build social and life skills, have access to therapeutic and specialist interventions and above all the educational tools with which to achieve their greatest potential. Founded by some of Berkshire’s most inspiring teachers and a group of concerned and active parents, Beech Lodge’s aim is to provide a supportive and structured environment enabling those children to thrive rather than just survive at school.

Daniela said, “All children are different and learn and behave in different ways. Beech Lodge will consider the whole child addressing their individual emotional, social, physical and academic needs. We aim to use  variety of teaching strategies and techniques to keep them on task, build self esteem and give them the practical skills for later life. The curriculum puts an emphasis on children developing skills in Literacy and Numeracy with cross curricular links across subjects. Special importance is also placed on outdoor and practical learning, cooking, art, music, drama and physical exercise.”

Beech Lodge will accept children who would benefit from a high teacher/pupil ratio and small class sizes. They may require specialist teaching for dyslexia and dyscalculia as well as access to therapeutic interventions such as SLT, OT and Attachment therapy. These may be children who have restricted coping skills and low self esteem due to a range of difficulties including mild to moderate learning difficulties, social and emotional difficulties, sensory processing issues and missed opportunities at school.

It will be a school for children with ability and talent but for whom mainstream education is overwhelming. A school that recognises not only how vulnerable but also how precious those children are.

For more information see our website www.beechlodgeschool.co.uk, call 01628 501722 or email info@beechlodgeschool.co.uk

It’s Dyspraxia Awareness Week – be alert for early signs

The Dyspraxia Foundation is calling on families to be alert to the early signs of the condition in their awareness week campaign from 14th – 20th October 2012.

Chair of the Foundation Michele Lee said: “Many parents are unaware of the early signs of dyspraxia. It is vital families are on the lookout so we can ensure their children benefit from help and advice as soon as possible. All the research shows the earlier children are helped, the better their chances are for achieving their potential in the future. Early identification means that children can be referred for the help of specialists such as occupational therapy or physiotherapy whose input can be invaluable.”

“This year we have worked with CBeebies to develop a new early years programme, Tree Fu Tom, which encourages the development of foundation movement skills in all children, but especially those with dyspraxia. We are delighted that the series reached over 300,000 children aged 4-6 years in the first series and that parents are reporting improvements in their children’s motor skills and confidence”.

Dawn, mum of Rowan aged 5 years says “My son was diagnosed with dyspraxia by a consultant paediatrician last year. Rowan loves watching Tree Fu Tom with his younger sister and they both join in with the spells. Rowan tries really hard to master the movement sequences and takes this very seriously. He says that Tree Fu Tom is just like him!

With practice Rowan has got better at the spells and he doesn’t fall over as much. He’s also getting better at staying in one spot rather than migrating around the room, and he has started to be more aware of where his sister is when they are doing Big World Magic together

Early signs of dyspraxia can include:

  • Being late to achieve motor milestones such as sitting and walking
  • Some children avoid crawling or bottom shuffle instead
  • Frequently falling
  • Difficulty manipulating toys and other objects
  • Being a messy eater
  • Having speech/language problems
  • Slow to respond to instructions
  • Sensitivity to noise, touch and other sensory information

Dawn’s advice to other parents is “Be persistent. We felt that something wasn’t right for Rowan. He never jumped and couldn’t manage buttons or hold a pencil, but because he is a bright boy he compensated for his difficulties so they weren’t noticed by his nursery teachers. Fortunately our GP listened to our concerns and referred Rowan to the paediatrician for an assessment”.

Dawn also says: “It can be really hard to get help for young children with dyspraxia and it’s so frustrating trying to get your child to do things that they find difficult. We are so lucky to have Tree Fu Tom which is something fun that we can do with Rowan that we know will make a difference. There are lots of wonderful things that Rowan can do and it’s important to focus on them and not what other children are doing.”

If parents of pre-school children are concerned about their child’s development they should speak to their GP or Health Visitor. Further information about dyspraxia can be downloaded from www.dyspraxiafoundation.org.uk. All the advice and guidance produced by the Dyspraxia Foundation is written in consultation with people affected by dyspraxia and checked by professionals.

As part of Dyspraxia Awareness week a survey is being launched to gather information from parents about their early experiences of trying to get their child’s difficulties recognised. The survey findings will help to develop targeted resources to enable parents and early years professionals to recognise the early signs of dyspraxia and to provide the help and support these children need. A link to the survey will be available on the Dyspraxia Foundation website during Dyspraxia Awareness Week www.dyspraxiafoundation.org.uk

The Dyspraxia Foundation is also holding a two-day conference for parents and professionals in Bournemouth on 9/10th November 2012 with renowned speakers Dr. Madeleine Portwood, Barbara Hunter and Gill Dixon. Further information about the conference and a booking form is available from admin@dyspraxiafoundation.org.uk

Special Needs top tip: Elastic laces

So, here is Special Needs Jungle’s top tip of the day that I think many of you will find very handy.

Elastic laces on his Crocs school shoes, mittens at the ready!

Lots of our children have difficulty with laces, especially if they are dyspraxic, and Son2, for one, has developed his own, somewhat unique, style of doing his shoes up. These days it’s easier with velcro straps, but sometimes, such as with trainers or football boots, it’s just not possible. Plus, as they get older, velcro isn’t very cool.

Side view

However, there is a very nifty solution we’ve found – elastic laces with a toggle tightener. As you can see in these pictures taken of Son2’s school shoes as we sat in the ever-long queue trying to get down Farnham’s Castle Street, he can manage them with ease.

You can get them from Amazon.co.uk. We tried the spiral ones but they’re very difficult to get through the lace holes on the shoes.

You might wonder why Son2 is wearing quilted mittens on a warm September day in the pic on the left. Well, that’s another story…

I’m having the rest of the  day off – it’s my 15th wedding anniversary. It’s been a long, interesting journey that has changed me in so many ways. Little did I imagine that on that day, already expecting Son1, how many challenges were to come. But we’ve made it – we promised patience and understanding and no two words could be more true!

Which learning resources help SEN kids? Take this survey

Ann Beck, of  The Gift of Learning has asked me to help get her message out about a survey  she’s devised to assess what kind of learning resources SEN children need. See below for details and a link to the survey
“Can you help me to help your child learn?
I have recently started a new business venture with a view to supplying learning resources to parents of children with special educational needs.  As a mum I found it difficult to find affordable resources to help my own son who is dyslexic and suffers from anxiety and so ‘The Gift of Learning’ was born (www.thegiftoflearning.co.uk) .
I’m currently researching which areas of education parents feel they need the most help with and what better way than to ask you directly?  I value your opinions and hope that you can spare me a couple of minutes to answer 4 short questions.
If you’d like to help follow this link http://www.surveymonkey.com/s/8VRRDNG
Thank you!

SEN Stories of interest in the last week

Below are a few of the more interesting stories I’ve seen about SEN in the past week. If you’d like to receive this weekly update in your inbox as well as other Special Needs Jungle posts – subscribe on the left by email or on the right to the RSS feed.

My new book for parents looking for SEN help – launched Monday 10th October 2011

On Monday, I officially launch my new book aimed at helping parents of special needs children get the education they need. It’s first coming out in ebook format, followed by a paperback in a month.

The book’s called Special Educational Needs – Getting Started with Statements. It’s a parent-to-parent guide to starting to compile a statutory assessment application for you special needs child.
It’s tough enough having a child who has special educational needs – getting them the right help can seem like an impossible task. This book sets out in a simple, easy to follow way, a step-by-step guide to how to prepare the best application you can. While aimed at the UK Education system, parents everywhere will find it useful if they are trying to organise a case for their child.

I’ll write more about it on Monday, together with links to where you can buy it. In the meantime, it would be brilliant if you would pop over to the facebook launch page and say hello!

The event page is here: http://www.facebook.com/event.php?eid=297761316917633

The Right Support Gets Results

Clare’s son was written off as lazy by teachers as a child. Severely Dyslexic and Dyspraxic, he faced an uphill battle in learning to read and write, let alone trying to succeed at French lessons alongside his peers in mainstream state school.

At school he was bullied by other pupils, segregated in food technology lessons because of allergies and given detentions because working memory problems meant he could not remember to bring everything he needed to class.

Clare said: “I was told by a Teacher at my Son’s School when he was six years old and she didn’t believe he was dyslexic , she said, he will never be an Einstein” I looked at her straight in the eyes and said “Do you realise Einstein was Dyslexic?” the look on her face was a picture, as though she wanted the floor to swallow her up”

Clare was determined that her son should get the support he needed that was not available at his school near Camberley. She fought Hampshire County Council for more than two years until they were forced by a Special Needs Tribunal to fund Michael at a specialist school that could help him achieve his potential.

This month, after much hard work, Clare’s son was ecstatic to learn he had scored an A in GCSE English that he sat before Christmas. Clare believes it’s a direct result of him getting the support he needed to overcome his problems:

“How amazing! It  just shows if a Dyslexic person is taught properly they can be amazing at English. I’m so proud of him.”

Even though the process of getting the support in place made Clare ill, she now helps other parents who are struggling with the Special Educational Needs System to get their children the help they need so they have the opportunity to do as well as her own son.

More House – A School To Be Proud Of

Saturday was the last official day of term – Founder’s Day. This is something we all look forward to and I don’t mean for the strawberries, cream and sparking wine you get at the end either.

It is the day we get to celebrate our boys’ achievements throughout the year, hear the Headmaster’s end of year review speech and listen to a visiting VIP make the keynote address. This year it was David Moran, the new  Ambassador to the Republic of Kazakhstan and Non-Resident Ambassador to the Kyrgyz Republic, whose talk included the notion that these years the boys spend at More House School will help them forge their characters that they will take with them through their lives.

There is a prize giving, where the boys are awarded certificates for particular areas of excellence and this is all the more touching because many are given in subjects where the boys have faced real challenges. Each boy returning to his seat with his certificates was beaming with pride; a feeling that we parents marvel at, knowing only too well how difficult their journeys have been so far. For our own two boys, we laminate their certificates and put them on the wall of their rooms so they can be reminded every day that hard work gets results.

But the highlights of the day were the speeches given by the outgoing School Captains. The two sixth-formers, smartly dressed in suits, came to the podium to give accounts of their time at More House. The first opened by saying that when he arrived at the school he was a dyslexic. Now, upon leaving, he is a dyslexic with attitude and confidence. He has a place at university and thanks to the education he has received has a great chance at a successful life.

The second young man opened his remarks by noting his diagnosis of Dyslexia and ADHD. When he arrived at the school he said, he was unable to sit still long enough to learn anything, but at MHS he was never excluded from any event or activity (as I presume had been the case at a previous school). He had received a good education both academically and socially and he stood before us a fine young man and School Captain, a son to be proud of as I am sure his parents are.

Both young men took the time to thank the school’s Headmaster, Barry Huggett, who is held in the highest esteem by all the boys and their parents. Mr Huggett is an inspirational figure and he leads the school with dedication, dignity and passion. He announced that the latest GCSE results showed an 83% A-C pass rate, which considering the number and range of difficulties experienced by the boys when they arrived, is outstanding.

Several things became crystal clear for me yesterday. The first is that the dedicated sixth-former I have seen at many events is, in fact, the Music teacher, Mr Place, which just shows me how old I’m getting. The second is that, contrary to government inclusion doctrine, the kind of school you go to is absolutely key to your future life. Had the School Captain gone to a normal mainstream secondary, he may well have left at sixteen with no qualifications and little chance of a bright future. Now he has university to look forward to and a real shot at success.

Some of the boys get support in exams such as extra time or scribes to help them show their true potential. Mr Huggett aims to cut the number by half, and then within a few years, to eliminate the need for special help in exams altogether. This is a lofty goal but one that, knowing Mr Huggett and his staff, I can see being achieved.

To all the staff at More House School, have a wonderful summer – you’ve earned it.

Journey’s End for our Statement – And a Brighter Future.

Just to update the post about my son getting the statement of Special Needs, we’ve just heard that the LEA has agreed to fund him at his independent special school. Great news and what a relief!

When they issued the draft statement they said they were concerned how he would manage in mainstream secondary.. so they were going to recommend mainstream secondary with support. Now we know, don’t we, that for many children with Asperger’s, it’s not a question of someone sitting with them or being withdrawn into social skills groups for so many hours a week. It is more a constant nudging that they need and a vigilant eye for when things are starting to go wrong.

During my research, I spoke to several mainstream SENCOs (Special Needs Coordinators). They are all dedicated to their pupils and do a good job in difficult circumstances, but one said to me that they sometimes “don’t hear from their ASD students for months until something goes wrong”. She was saying this to illustrate how these students ‘coped’ adequately with day to day school life. All I could think was that at my boys’ school the teachers are in constant contact with the boys and things are never left for months until something goes wrong. Although this teacher was trying to be positive and reassuring, I knew then that my son would end up depressed and unhappy in an environment where he could go unnoticed for months at a time.

Why should he simply ‘cope’ when other children thrive? This is not what I wanted for a boy who is incredibly bright with enormous potential but who is also extremely sensitive with sensory issues and problems with social integration. On the face of it, you wouldn’t think there was anything different about him. But it is precisely when ‘things go wrong’ that you see that he is not the same as everyone else and does not have the coping skills that most children his age have.

This is what More House School teaches him. As well as supporting him academically, it supports his social needs on a daily basis and when they see that he is heading for trouble or he becomes upset, they can help him develop the skills he needs so that when he is an adult, difficult situations don’t throw him off-course. This means that when he leaves school to go out into the outside world, he will be as well-equipped as anyone else to deal with all kinds of situations and different types of people.

If we hadn’t managed to get the LEA to agree to fund him, we would have had to pay £13,000 a year for our son to receive the right kind of education to give him the best chance of a successful life. We had tried mainstream and had found that, with the best will in the world, the kind of support he needed wasn’t available. So why should we have to pay for him to get what every other child in mainstream gets without any bother? We didn’t opt out of the state system out of snobbery. We were, in effect, forced out, because our sons were not mainstream children.

Our LEA seems to have woken up to the fact that it is cheaper and easier to pay for children to go to this particular school than it is to find all the support they need within the state system. If they had to make their own school for high-functioning ASD boys, complex dyslexics (who often have co-morbidities), and children with great Occupational Therapy and Speech and Language needs, they would have all the capital costs to pay on top of  the per-pupil cost. These would include buildings and maintenance, electricity and all those other costs that don’t include teachers and support staff salaries and benefits.

Just paying £13,000, and leaving it up to someone else probably seems like a great deal. We haven’t asked them to pay transport – we moved to be closer so I can easily take them myself every day as I would if they were at any school. This is my part of the deal as transport costs are a never-ending headache for LEAs and I see no reason to add to the burden when I am in a position, and more than happy, to take them myself.

However, although Surrey, our LEA, have done the right thing for both my sons, (and three cheers for them), I know of other families who are having to fight tooth and nail and at great expense to get their local authority to do the same. I know of one child in Hampshire, who got a statement with no argument but despite his severe social as well as physical needs, the LEA thinks he will be able to cope with a mainstream placement against ALL the advice they have received. This is pig-headed stupidity and a game of brinkmanship with parents to see who will blink first. There is no logic to it and when the case gets to Tribunal, Hampshire will lose and will have wasted taxpayers money fighting a case that didn’t need to be fought. The family will have suffered emotionally, financially and completely avoidably.

Hampshire have recognised this child’s needs for OT and SLT in part two of his statement and yet have made no provision in part three of the same document and they think this is acceptable. They think it is okay just to dump him in the local secondary where his needs cannot be met (and the family has the documentation to prove it). Hampshire should know that it won’t intimidate this boy’s mum. She is every bit as determined as I was to make sure her son gets the placement he needs. It is appalling that she should have to put herself under considerable strain to do so. I will keep you posted as to what happens.

Rose Dyslexia report – will it be enough?

Government adviser Sir Jim Rose’s report on dyslexia has been widely reported today. BBC News said, “More teachers will be trained to identify and support children in England with dyslexia, as a report says greater expertise is needed in schools. Sir Jim Rose, who recently reviewed the English primary school curriculum, said parents needed guidance on the help available.  The government says 4,000 teachers will be trained, and online courses provided to help them support dyslexic pupils.Charity Dyslexia Action called it a “landmark report” and a “great step forward” to have a definition of dyslexia which those affected could recognise and accept.

boyworkingIn his report, Sir Jim defines dyslexia as a “learning difficulty which primarily affects skills involved in accurate and fluent word-reading and spelling”.  The report will say dyslexia should not be treated as a distinct category of people, but as a continuum, like other disorders. He is also expected to reiterate that good quality teaching in children’s early years is vital.”

The link to the full BBC report is at the bottom of this post but what strikes me is that it has taken this long for a report to be done. Dyslexia is not new and the fact that it is only now being ‘officially’ recognised is a scandal. Whole generations of people have had their lives blighted because they have had unrecognised and untreated dyslexia. Instead, they have been branded ‘thick’ and have not been able to develop the life chances they should have.

I sincerely hope that this report’s recommendations will be acted upon so that teachers can learn not only how to identify children with forms of dyslexia but know how to do something about it. As I have said before, if the government wants ‘inclusion’ then mainstream teachers cannot just teach the mainstream. If teachers don’t have the access to the funding or training to make their teaching truly inclusive, then once a child is recognised as having a problem, they should be given access to teachers that can help them.

Ten million pounds doesn’t actually seem that much to provide all the help that is required, but it is a start and should be recognised as such.

I am no expert, however, I am of the opinion that some children with ‘continuum’ difficulties such as dyslexia and ASD need a different teaching style altogether that can only be delivered in a specialist environment. I have helped various parents with their statementing battles and have seen quite a few Educational Psychology reports. What seems to be a theme is that the working memory and non-verbal skills of these children is almost always poor, sometimes dramatically so, compared to their basic level of intelligence. This means they have difficulty remembering instructions and sequences, problems with attention and with organisation. These are in addition (though connected)  to the problems they have with making sense of reading or writing or both.

This group of issues will be difficult for a teacher with thirty other pupils adequately to address, however much training they have. They are, after all, only one person and are not superhuman, unless there are government plans to provide funding for that too. Isn’t it better that these children learn together and are taught in the way they learn best? It is great that teachers will be trained to spot Dyslexia – they should also be trained to spot and act when they believe a child is on the autistic spectrum as well. But my concerns are that we are simply asking too much of teachers when they have so many children of all varieties to deal with.

The answer could be in smaller class sizes so each child can get individualised learning, or grouping children according to learning styles. In our school, dyslexic, dyspraxic, dyscalculic and Aspergic children learn alongside each other in small groups because their learning styles are more similar and the class sizes are small enough that where differences exist, they can be catered for. Eight children may need things explained eight different ways, but that’s feasible in such a small class. I question whether that’s possible in a class of thirty.

It should be possible in a junior school of children with three-class intake per year to be sensitively placed so that the teacher has a fighting chance of helping everyone. When my younger son was in mainstream, he was made to go into the remedial English group because he had problems writing, even though his reading was top of the whole year. He was angry, frustrated and sometimes had to be dragged to the lesson because he knew he was in the wrong group. Now in his specialist school, he is supported in his areas of difficulties while still doing work that is at the correct level for his intelligence. We had to move him into the independent sector to get this but this kind of teaching should be available to every child whether or not they have the parents who are willing and able to fight battles to get them what they need.

This report looks like a good marker for future practice if the recommendations are acted upon. We await other reports that are ongoing such as the Lamb Inquiry and the other autism bills that are going through parliament to see whether a real difference can be made and the future of another generation of children is not lost to the vagaries of government policy.

BBC report here: http://news.bbc.co.uk/1/hi/education/8109554.stm

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Child-Free.. as free as the wind blows..

This morning, without so much as a backwards glance, both our boys climbed on board a coach with their classmates and set off for their annual trip to PGL. For us, this means no children in the house for the next four days. We still have the dog of course, but he doesn’t put up a fight at bedtime or complain that dinner is ‘disgusting’.

At the same time as feeling ever-so-slighly elated, our hearts do go out to those brave teachers venturing forth with fifty boys aged between 7 and 11, all with some type of special need. These range from dyslexia, to speech difficulties to Asperger’s Syndrome. The teachers know only too well what puzzled faces could ensue with the saying, ‘It’s raining cats and dogs’.

Far from being tough little tykes, practically all these boys have in their backpacks their cuddly toys, blankets or other comforter, even the big strapping ones like my 11 year old. He has his old cotton cellular cot blanket, a stuffed reindeer and two stuffed Club Penguin plushies, all shoved down into his rucksack along with his tuck for the trip.

Our boys went on the trip last year and then, there were  a few tears from my youngest before he set off, but as soon as he was on the coach, he was smiling again. I shed more tears on the way home at the thought of them being away from me on a school holiday for the first time. When they returned, I was going through Son1’s bag and there was a suspicious amount of clean underwear, an untouched toothbrush and a still-neatly folded flannel. It turned out that he hadn’t washed, cleaned his teeth or changed his pants for the whole four days.

Despite this squalour, he still managed to bag himself a posh girlfriend at the end of trip disco. She rang him so often afterwards that I heard him say to her, “Can you not ring me so often, it’s getting a bit annoying.” Oh dearie me, he has a lot to learn.. but then he was only 10 at the time.

This year Son2 is determined to grab himself a girl as well. He has carefully chosen himself a pink linen shirt from Zara and refused to get his hair cut so it’s nice and long and trendy. However, after his success last year, Son1 is uber-confident that the prep school fillies will be throwing themselves at his feet again. He’s offered his brother a few pointers, but let’s hope his tips on personal hygiene aren’t among them..

Parents rate local authority Disabilities service at 59%

When I was at school, a score of 59% definitely meant ‘could do better’, if not ‘should do better’. But that’s the score received by 10 local authorities in England for their disability services.

The survey, completed by the British Market Research Bureau on behalf of the government was intended to measure parental experience of services for disabled children. The survey and indicator have been developed as part of the Aiming High for Disabled Children programme.

It is the first ever national survey of parents’ views of services for disabled children. Parents completed a questionnaire asking for their views of health, social care and education services for their disabled child as experienced in the past year.

Srabani Sen, Chief Executive of Contact a Family said, “The views of parents should drive local authorities and primary care trusts to ensure that the right services are available to meet the needs of disabled children and their families. This new data is vital in emphasising the key part that parents and families have to play in improving services for disabled children. We know that these services work best when parents are involved in their design and delivery, and I hope that local areas will be able to use the results to continue the good work that many of them are already doing to engage with parents and develop services together.”

The fact that they are measuring this to determine a baseline for future improvements is great, but 59%? Just over half? That’s a lot of people who are dissatisfied with the care and education their disabled children are receiving.  It is clear that this kind of rating of services is long overdue and that many local authorities need to try harder to provide a satisfactory service to vulnerable children who need the greatest help.

Great News – A Statement!

Got the news we had been waiting for today – Son1 has got the Statement of Special Educational Needs we had applied for. Don’t have all the details yet and we still have to sort out placement (which if I have anything to do with it will be his current school).

This time last year the head of our school’s Learning Support department told me I should apply for a statement for Son1. I thought she was mad, because he is achieving well although his educational profile is uneven and his progress is affected by his social and communication difficulties caused by his Asperger Syndrome. Still, I thought, she wouldn’t say it if she didn’t mean it. We had been through the process before withour younger son and he is now funded at their independent special school by the Local Education Authority and I didn’t relish another trip down the same road. Still, I reminded myself, it’s not for you, it’s for my boy, took a deep breath and plunged in.

I started out by applying for an assessment, which was initially turned down (see earlier post). After they reversed the decision and carried out an assessment, it went to the area special needs panel yesterday and the news came through that he had been given a statement.

It does beg the question, why was he refused an assessment and then is given a statement and I think this is largely down to the ‘new broom’ approach at the local LEA.

I now have to convince them that paying for him to attend his current independent specialist school is the right thing to do, so no time to waste! It does show however, that if you do your research, persevere (like I said, I started this path a year ago) and you are sure of your case, then you can come out with the result you believe your child should have.

It may take longer than a year for some, depending on whether you need to appeal, but I was originally told neither of my sons would get a statement and now they have one each. I used the methods I have described on this website (see links at the top of the page) both times. So, anyone reading this who is onthe same road, take heart and don’t give up!

See the outcome here

Celebrate Calm – well worth signing up for.

I am taking the liberty of quoting from an email newsletter I subscribe to ‘Celebrate Calm, written by Kirk Martin. It is about his son who, like many of our children, marches to the beat of his own drum:

“The following message is very personal and my wife never likes me sharing it, but it seems to strike a chord with people and provide helpful perspective. I wrote this about Casey several years ago–for those who have met him at the workshops, you know that Casey is no longer a little boy (except at heart)!

I look at other people’s kids who are compliant, excel in school and are sailing through childhood. And I really like those kids, I do. At one point, I wanted a child like that and wished I had an easy kid at home. But now? I wrote the following one night after peeking in at my son sleeping. I encourage you to do the same. I hope you will discover some common feelings toward your child.

The Beat of a Different Drummer
I peek in at him late at night lying in bed, fast asleep, my no-longer-little guy sprawled out across his bed, long unruly mess of hair covering his face. . .and I smile. I smile because he is full of personality. He is so different than me in many ways, different than my expectations, different than the little boy I had always imagined. And for that I am grateful. He’s his own person, knows what he likes and doesn’t like. I look in at him, peaceful and innocent while he sleeps. The fight is gone and his little mind is resting. He’s gone full force for the last sixteen hours, he needs a break.

I like it that he pushes the limits, like it that he questions everything, because one day he’s going to do something spectacular. Along the way, he’s going to make some big mistakes, but he’s going to live large and dream large. Underneath the spunk and mouth is a heart not only lined with gold, but filled with it. It is large and feeling, and it wants to do good even when his impulses lead him astray at times.

I think God must look down and confuse him with a little tornado. But I also think God looks down and likes what He has created, likes the little tornado who is growing into a man.

I think He sees Himself in my little boy, funny as that sounds. The part of God who is the Creator, who by the sheer force of His energy and being created life and all that is in the world. The part of God who was willing to step into humanity and persevere on a rugged cross because it would help people. The part of God who walked among men, largely misunderstood, often reviled because He was different and didn’t do things the way the rulers of His era thought they should be done.

But He kept going. Because He, too, had a mission. He didn’t care what others thought. His vision was larger than a mere thirty-three years on earth.

I think God must see Himself in the part that sometimes misses out on earthly things because he’s in tune with something deep inside another person. The part who remains an idealist even when the world around him is less than ideal. The part that isn’t afraid to look into eternity and see better things in all of us.

That is my son sleeping there. We fought each other until we couldn’t fight anymore. Until I realized that I was the one who needed to change, because I wasn’t going to change his nature. Perhaps he has been given to me so that I would change.

That is my son. Sometimes he inspires anger, sometimes frustration. Then he makes me laugh, even smile in resignation. And as I look at him, he makes me cry. He is a wonderful creation. Through all the struggles, I can see the imprints of the Creator.

He is my son. He marches to the beat of a different drummer. Thank God.”

I hope he won’t mind me republishing this but these emails have always been very helpful to me and are well worth signing up for. He also has a range of self-help CDs, and is US based. Find him here: http://www.celebratecalm.com/

The SEN Assessment Form – Yipes!

A few people have mentioned to me how daunting they find the form that comes for you to fill in to apply for a Statutory Assessment for your child. They’re worried they’ll forget something, they won’t phrase what they want to say in the right way, or that they’ll just do it all wrong and blow their chance.

I don’t know how every LEA approaches the application; whether they all send out a form or whether some do it another way. Ours send a form with questions and boxes to write in your answers as a guideline to help parents know what to include. The LEA has made the form in the first place because they do actually want to help find out what a child’s issues are. The problem is, it often makes the task more difficult because some people may think that’s all they can put in, or leave stuff out that needs to be in because there was no obvious place to put it or stop at the end of the box because they think that’s all they’re allowed to write.

I would suggest putting the form to one side, sitting down at your computer or with pen and paper and just writing your child’s story. You, bar no-one, know them the best. You are the one who has agonised over your child’s progress, or lack thereof, you are the one who has more than likely wept over the fact that they don’t fit in or just can’t get to grips with things that other children have no trouble with at all.

Start at the beginning, from the day they were born. Note down any problems with the birth, unusual development, recurrent medical or social problems, how they get on with others and with school work. You will be amazed how much you can write and you’ll probably shed a few more tears as you do it as well.

If you then want to fill in the form, you’ll be able then to pull things out of your narrative to put in the spaces. Or just leave the form out altogether and redraft your narrative making sure you’ve covered all the questions on the form as well as everything else you want to say. This is your chance to put your child’s case. If you’re turned down for assessment you will be able to appeal, but the more relevant information you put in now, the less likely it is that you’ll have to.

Refer to reports your child has had done and send copies of them along as well with your application. Go through the reports you have and pull out the parts that strengthen your case.

For example. “In his assessment on 21/4/06, Dr X remarked that Johnny has great potential but his lack of social skills was likely to adversely affect his learning. Please see report (numbered 7) enclosed with application.”

Then number that report number 7 or whatever number you’ve given it, and enclose it with your application. You could then back this up with remarks teachers have made to you or with comments from Johnny’s year end report, which you will also number and enclose.

If their writing is a problem, send in samples of it. If reading is a problem, write down the level they’re reading at or perhaps that they avoid reading because they find it frustrating. If they are desperately unhappy because they are bullied because of their differences, mention this as well. If their frustration makes them angry and violent or unpredictable or friendless, write this down too.

But my best advice when approaching your application is to tell your child’s story first and foremost. You don’t need to be a world class writer, but do use the spell checker on your computer or get someone else to read it over for you if you’re unsure. Enlist the help of a group such as Parent Partnership if you’re lacking support.

No one knows your child like you do. Others, such as teachers, will have a different and valuable perspective, so speak to them and include what they say in your application. The SENCo will be asked in any event by the LEA to fill in their side of things but speaking to them yourself will inform you of things you may not have known.

Update: I’ve just added a help template under “SEN Assessment Form Part 2

It’s all about the school.

Yesterday, my son was discharged from regular check ups with his nurse practitioner at his specialist clinic, a cause for celebration. She has been a wonderful support to us along the way to getting the best we can for him but now he has started at an appropriate school for his needs, he no longer needs medication to help him focus because there are only nine boys in a class and he is taught in the way he learns best (imagine!).

His nurse said there’s nothing she can now offer that he isn’t getting at school and she’s right; it’s all about the school. A paediatrician at the centre said the same thing: one size doesn’t fit all and the right school can make the difference between a life of underachievement and a fighting chance of success.

What chance does an ASD child, even with TA support, have in a class of thirty (several of whom probably have behavioural difficulties or other issues) when that child has sensory integration problems and needs a quiet environment to be able to put pen to paper at all? What chance for success does a bright child have who reads several years ahead of his age but can barely write, when he’s left to fester in a remedial English group where he refuses to work because he feels his intelligence is being insulted?

This is the conundrum faced by mainstream schools when trying to educate children with complex needs. It’s just not possible to put him in a group with his intellectual peers because he thinks so differently and can’t keep up with writing speed. But putting him in a group with children who write as slowly as he does means he’s frustrated and not challenged. The same is true for many bright dyslexic children; where do you put them if they’re clever enough to be in the ‘top’ stream, but whose reading or writing difficulties mean they can’t present their work as well or whose thought processes don’t follow ‘the norm’?

Can mainstream provide sufficient expertise and support for these children? Politicians pushing the ‘inclusive’ agenda say it is perfectly possible and perhaps in a very few schools that have sufficient specialist staff and resources, this may be the case but for the majority, it just isn’t.

I was told when my son was in mainstream that there were five accepted methods for doing maths at his level. My son had his own, sixth, very complicated method and even though he would get the right answer, I was told he had to conform to one of the methods laid out in the national curriculum. Good luck with that, I thought, because you’ll have a job on your hands.

I have spoken to many highly experienced teachers, special needs Teaching Assistants, Outreach staff and Clinicians in the past few years. NOT A SINGLE ONE believes inclusion for children with complex learning styles or difficulties in the answer. Not one. Why are their views being ignored in the relentless push for everyone to be taught in one setting? Please, if you know, make a comment and enlighten me. It’s possible that I and they are all misguided souls. But somehow, I don’t think so.