Read SEN & Disability News (Quick before they ban disability)

The spotlight is firmly on disability in the media at the moment, with the Paralympics underway, not to mention the ATOS games as disability rights protestors demonstrate against the government’s new assessments aimed at getting people off disability benefits and into work.

It is quite a contrast, as on the one hand the country, quite rightly, celebrates its finest athletes who happen to have some form of impairment, against those, rather more everyday disabled people, who are currently living in fear that vital financial support will be removed from them in a government-ordered assessment that appears to be more akin to blunt force trauma. For a really thoughtful post about this, see my top story selection below by Polly Toynbee in The Guardian.

The government would do well to remember that our society is judged by how we treat our most vulnerable. As they sit and watch as the Paralympic athletes do us proud, I hope Mr Cameron et al, feel at least a little prick of conscience.

Take a look at the week’s stories – don’t forget to leave your own favourite too in the comments

What’s your experience of CAMHS?

Many of our children have to be referred to CAMHS – The Child and Adolescent Mental Health Service – to help manage their behavioural difficulties or perhaps if they are experiencing a difficult period of depression or anxiety.

After a very difficult Year 8, largely due to an issue with a particular teacher about whom the less said the better, we found ourselves in this position with Son2, who has Asperger Syndrome. He was referred by his paediatrician at the end of last year.

The paediatrician, it later transpired, in the battery of blood tests ordered, had not included a Vitamin D test and so missed that part of his issues stemmed from a severe Vitamin D deficiency. This was only picked up by our forward-thinking GP, when Son2’s legs began to cause him pain some weeks later.

So, we wait for the CAMHS appointment. And wait. And wait. Meantime, Son2 was finding it difficult to go to lessons and is on many occasions, unable to go to school at all, a stressful situation for the whole family.

Then eventually, an appointment arrives, SIX MONTHS after referral. My husband takes the day off and off we go. At the appointment is the paediatrician and a CAMHS psychologist who shall remain unnamed to save their blushes. Son2, predictably, refuses to speak to either of them.


We explain Son2’s issues, as the paediatrician yawns through the whole appointment, then takes a phone call. At an appointment we have waited six months for. I studiously ignore him. The psychologist agrees to prescribe a trial of a particular medication and says she will call the school to speak to his counsellor there before we get it filled. However, to the best of my knowledge, she does not and we are left with an unfilled prescription a week later, still waiting to hear back from her. I call and leave a message. No response. So, I decide to get the prescription filled although Son2 will only agree to take it after I take him back to our GP who explains to him the effect it will have on him and that he will soon start to feel better, something, presumably, the psychologist should have taken the time to do.

Within a couple of weeks, indeed Son2 is feeling better and even manages to go to the local shop by himself for the first time in a year. But there is still no word from the psychologist and we are coming to the end of the bottle. I call the GP who agrees to prescribe a further bottle, even though this is supposed to be a monitored trial.

Off we go on holiday, where Son2 has a couple of relapses but is generally much better. When we return, there is still nothing from the psychologist, so I call my GP again to ask who should be monitoring Son2 as we have heard nothing, nor have we received a follow up appointment. She checks her screen and has a recent letter scanned in that says Son2 had been referred to the wrong county sector of CAMHS and had been re-referred to a different local region. They had not bothered to cc us in because, of course, as the child and his parents, we are the least important people in this process, it would seem.

I am incensed. And as David Banner used to say just before he turned into the Incredible Hulk – don’t make me angry. You wouldn’t like me when I’m angry.

I call the new department to find out what is happening and, to avoid my call going ignored again, I  pass on to the lady who takes my details that I am also co-chair of the local parent-carer forum and a response would be appreciated, as I am extremely unhappy at this rather careless administration when they are dealing with a vulnerable child who has been prescribed some serious medication.

An hour later, a lady calls me, very concerned that I shouldn’t be complaining about them and I assure her that it’s not them at fault, but the other CAMHS section. We now have an appointment for 25th September. So, because of this mistake in referral Son2 will have had three months with no monitoring for a child who was only put on an initial trial of an SSRI.

It doesn’t bode well for the future for an integrated health, education and care plan if they can’t even figure out where you should be referred. And at the heart is an autistic boy who has been suffering since the end of last year. Parents should not have to chase for information, it’s very distressing, because it makes you feel very alone and insignificant.

Because of my position, I happen to know the head of CAMHS in our county (a very sincere person, in my experience) and I emailed her to tell her about the whole sorry tale. As I expected, she was horrified and apologised, assuring me she would ensure Son2 received the right treatment and that she would also take steps to make sure this did not happen to anyone else.

However, I am not sure my experience of CAMHS, in any county, is particularly unusual, or even especially bad, and I would be interested in hearing your story too.

August’s top bank holiday SEND stories

After a two week break, the Special Needs Jungle weekly curation of the best of special needs posts is BACK! I’ve tried to include stories I tweeted while I was away in Italy being subjected to torture by invisible mosquitos. My top holiday tip if you have teenagers like mine is to make sure your holiday home comes equipped with free wifi for those inevitable downtimes, so you are never plagues with cried of, “I’m bored!”

My boys still have another two weeks and a bit weeks off, and I intend to spend some of it taking them to our new gym, as I’m fed up of us all being locked in our little corners of the house on our respective computers (though at least I’m doing actual work). The gym is brilliant with a huge pool and great facilities, including a spa (for me, obviously) and, of course, free-wifi so that Son2 can sit pedalling the cycle machine while playing on his iPad. Well, it’s a start and a compromise, but at least part of him is moving.

Have a fab August bank holiday weekend and fingers crossed for good weather if you’re planning a barbecue or a last dash away! Next week – the paralympics!

Special Educational Needs reform update

Hope your summer is going okay! We’re just back from Italy where we were devoured by relentless mosquitos day and night.

Just thought you might like to read this pdf of the June 20th Select Committee on SEN at which Sarah Teather spoke about the SEN reforms. I wrote about it here but now the transcript has been published, so I’m putting it here for you to read in full, including the views of five experts including Jane McConnell of IPSEA.

This September, pathfinder trials will be getting underway, although in many areas, the thorny subject of who the key worker is still under discussion. If you’ve been approached to be a pathfinder family, I’d love to hear from you. Alternatively, if, like me, you’re a parent involved in the pathfinder development, let me know your views on the process.

There will be another update from the DfE at the end of October but if you’re interested with the process, reading this document will be informative.

Does child protection protect children?

This is a reblog of a great post from Debs at ChaosinKent. Debs is one of my personal heroines. She has three kids with special needs and is just an excellent human being. Do click through to read the whole thing.
The ultimate tragedy is not the oppression and cruelty by the bad people but the silence over that by the good people.
 There was a recent report in The Lancet stating that 1 in 4 disabled children are the victims of abuse.  This report was based on 20 years of data from 17 studies (from 1990 to 2010) and involving more than 18000 children.
The authors of the report sadly added that the sitution is possibly even worse than their data shows.
“The results of this review prove that children with disabilities are disproportionately vulnerable to violence, and their needs have been neglected for far too long,” said Etienne Krug, director of the World Health Organization’s Department of Violence and Injury Prevention and Disability.

Free dyslexia webinars for back-to-school students

A free four part webinar series Academic Success & Dyslexia: Back To School Webinar Series!is starting on 23rd August aimed at helping dyslexic students succeed when they head back to school in a few weeks

It’s being run by Patrick Wilson, who has been working with dyslexic students since 2003. A dyslexic himself, he founded the Tutor Crowd to help SEN students do better in exams. His particular teaching focus is dyslexia.

Patrick believes that low achievement is not the result of low ability it is the result of ineffective learning. He has developed a specific way of teaching dyslexic students that aims to help them work more effectively. He has previously been featured in The Times and The Daily Mail.

Today, he tells Special Needs Jungle about his service.

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I got involved with tutoring SEN students because of my background as a dyslexic. In education I found I was constantly coming up against brick walls, and in order to get through school and university, I created techniques and learning models to get the grades. It’s been a natural progression for me to pass on what worked to other dyslexics. I’ve had some great successes with SEN students and it’s good to see people who have struggled academically start achieving.

What’s important for SEN tutors is that they fully understand the student’s SEN. I think that knowledge can sometimes be easier for a teacher with personal experience of the issue to communicate. What I feel happens a lot in SEN teaching, is that lessons focus on the correct objectives, things like organising and structuring. However, if the teacher hasn’t truly understood the students SEN in the first place, the student will walk away without having achieved or learned anything.

I use a lot of different methods when I’m tutoring. I’m an advocate of action based learning for dyslexics, and I focus on creating a relaxing stress free environment, where mistakes are seen as a good thing. I also recommend providing a constant feedback loop for students. Very often a dyslexic will put a huge amount of effort into a project, only to be told at the end that it is not right. That is disheartening and can potentially put the student off learning permanently. By providing constant feedback, the student can improve bit by bit without becoming disheartened.

My advice for worried parents is to do your research. It’s really important you get up to speed with the specific SEN issue that your child has. Understanding should allow you to work with your child more effectively and reduce the emotional issues that can occur in a parent- ‘SEN child’ relationship.

The Tutor Crowd is an online platform that connects you to great tutors. Instead of only being able to work with local tutors, you can work with a tutor from anywhere in the country. For example, you may need an economics tutor that specialises in dyslexia. Our platform gives you the opportunity to find a tutor that’s an ideal match for you. We also have very strict entry criteria for tutors. Only the very best tutors are allowed on the site. We also use a rating and feedback system so parents can have complete confidence that a tutor is top quality.

The webinar is a free 4 part series about understanding and working with your dyslexia. It’s for anyone with dyslexia who wants to achieve academically, as well as for parents and educators who want to engage, teach and build better relationships with their child or student. Click here to register.

Dyslexia in the wrong situation can be a soul destroying problem. However, in the right circumstances, and with the right learning techniques, dyslexia can be an incredible asset and a very powerful way of thinking.

Parent-carer forums – why not get involved?

As you know, I’m co-chair of Surrey’s parent-carer forum, Family Voice Surrey. I joined at the beginning of the year and realised just how much there was about SEND provision that I didn’t know. Although I was very well informed about statementing, there is so much more that involved complex needs provision, transition planning, vulnerable children and the morass of different funding streams is a jungle in itself.

My co-chair at FVS is Angela Kelly, herself the mother of two sons, both with special needs. Ang and I get on very well and have a very productive relationship. In fact, we’ve just been working hard to launch the new Family Voice Surrey website before we head off on our respective summer hols.

Being involved with a parent-carer forum is something we both feel strongly about as a way of helping other parents in a similar position to find the help they need and to be involved ourselves in shaping local special needs services for families who need them. If you feel like you can offer something, why not get in touch with your local forum? You can find a list here

Recently, we’ve both had to speak at a number of events and drafted a joint speech, which we then personalise with our own experience.  Angela spoke at a Voluntary and Community Services event in Surrey and I thought what she said about her own experience was really powerful and explained why parents who are already under immense pressure looking after their own children with special needs, feel compelled to give up their time to get involved and help others. I’m posting an excerpt here:

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I have been involved in the Surrey’s parent-carer forum for almost 18 months and been involved in the Pathfinder project since November 2011.  I became involved as a result of my own frustrating experiences of the current system. Endless hours on the telephone. Endless filling in forms, endlessly telling my child’s story over and over again.

Being heard but not listened to is one of the most frustrating feelings there is and for this to happen time and time again, when you yourself are exhausted and just about hanging on, well something had to change!

Parent-carer participation is at the very heart of the pathfinder project; it is mandatory. We are central to, and key partners in, the SE7 SEND pathfinder activity and this has been a learning process for all parties involved both parent and professional.  Far from being a lip-service ‘add-on’ or after-thought, our voices are the ones that should be heard the loudest over the noise of politics and officialdom. After all, it’s our children, that we love and worry about every day, who are the point of the whole exercise.

All parent-carers who are involved are a parent or a carer of a child or young person with SEN and or disabilities, so we have a wide range of experience between us of what it is like to live with and try to find the right educational, health and care solution for children with additional needs.  This is what makes parent participation vital, to make sure that any changes to the system actually DO improve support for children with SEN & disabilities which will, in turn, help their parents.

This gives us a unique perspective when it comes to our involvement in the pathfinder. Because of course, we are the ones still caring for our children’s needs, when the professionals have gone home for the day.We aim to bring an informed voice to the discussions for the direction of reforms for the various work streams. This involvement that has helped the professionals see the positive side and the potential benefits to parent-participation.

Two parents from the committee sit on each stream of work that is being tested.  These are, the Education, Health and Care plan, Early intervention / complex needs, personal budgets, the local offer, transition and vulnerable/looked after children who have no parents of their own to speak for them.

My overall experience of my involvement in the Pathfinder has been positive and I feel that as a parent-carer I am able to contribute to shaping the future for SEN and disabled children

Advice for SENCos – the parents’ perspective from Hayley Goleniowski

This post originally appeared on the DownSideUp blog of  Hayley Goleniowski, who writes about life with her beautiful daughter, natty, who has Down’s Syndrome. I thought it was such a great article, I asked her if she wouldn’t mind me re-posting it on Special Needs Jungle. Hayley was recently invited to address a group of SENCos as the neared the end of their three year Masters’ degree course. Their tutor hoped Hayley’s experience could provide the missing ingredient to the course – that of the parents’ perspective.

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Natty at her all-inclusive pre-shook

Qualified with nothing more than being a former teaching assistant, teacher and the blogging parent of a child with additional needs, I put my thinking cap on and set to work to come  up with something that would change the way SENCOs think forever.

 I decided to ask other parents and disability groups what they would say to a room full of SENCOs if they had the opportunity. I did this via Twitter and Facebook, and the response was overwhelming. I printed the replies off, cut them up and spread them on the kitchen table. Interestingly they fell into 3 distinct categories, and echoed my own initial plans for the talk.  I weave the quotes from these parents into what follows.  Thank you to all of you that helped.

Autism updates, SEN stories and happy holidays!

My top story this week is just out – a 90,000 drop in the number of children identified as having SEN. Do I think that SEN is on the decline? Of course not. The report in the TES says, “Brian Lamb, who led a review of parental confidence in the SEN system for the last Labour government, also identified training and funding as key reasons for the drop. But he said that the most important question to ask was whether children’s needs were being met.

“It’s positive to see a fall as long as we can be sure this is because of better assessment and the removal of perverse incentives,” said Mr Lamb, who is now chair of the SEN charity Achievement for All. “I hope the fall is not because schools are not addressing special educational needs.”

This is a point that I agree completely with and was my very first thought. Read the rest of the article for yourself and draw your own conclusions.

Also in this week’s top stories include using pets to help kids with autism (something we all already knew as well) and Barnardo’s report about tackling the causes of bad behaviour and not just the symptoms – this is an issue I have written about myself before.

I also want to highlight this week’s SNJ Guest post, from Rob Pleticha at EURORDIS, the European rare diseases organisation, who regularly volunteers at camps for children with serious illnesses. The one he’s written about is Barretstown in Ireland. If you have an 18+ year old lounging about at home or on a gap year, they could do a lot worse than be a volunteer at a camp like this – and it would look great on their CV too!

So, I’m away for a couple of weeks so no round-ups until I get back, but I’ve scheduled in some great posts while I’m away to keep you company and I’ll be armed in Italy with wifi and an iPad…Happy holidays!

Volunteering: The best way to spend your summer

We’re heading off for Italy this weekend and because both boys have special needs, we’ve always rented a villa with a pool and taken their Grandma and Nonno along to help out, so that we can all have a break without worrying about potential public meltdowns.

But imagine if your child has a serious physical illness or disease that makes it difficult to go anywhere without a high level of medical support? Pressure on families like these can be immense and no one needs a break as much as them.

Barretstown, based in Ireland, is a specially-designed camp that provides Therapeutic Recreation programmes for children with serious illnesses and their families. But to make it possible, the camp needs thousands of caring and energetic volunteers every year. My colleague, Rob Pleticha, whose day job is Online Communities Manager for RareConnect at EURORDIS, the European rare diseases organisation, is one of them. He volunteers every year to help children who are living with illness or rare diseases. A short time ago, he spent a week at Barretstown and he’s been kind enough to write for Special Needs Jungle about his experience and the camp.

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You arrive the night before the training. It’s dark but the trees are bright green, the horses are so comfortable, they lay down in the pasture sleeping, and the cabins spread thorough out the grounds emit a warm glow. You sleep well in the Irish night as fresh air fills you.

You’ve come to Barretstown in Ballymore Eustache, Ireland to participate as a volunteer “cara” at an eight-day camp summer session. 120 kids from 7 countries will arrive in two days. They all share the common experience of living with a serious medical condition at a young age.

Barretstown is a member of the European Global Organisation of Serious Fun Children’s Network camps founded by Paul Newman. The five camps in the European network allow over 3,000 children from 26 countries to attend summer camp and have life changing experiences. The services are always free of charge to families.

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