Working with parents as partners – a practitioner’s top tips

Debs writes…

The Children and Families Bill, currently working its way through parliament is very big on practitioners in education, health and social care working in partnership with parents – or “co-production”.

Now, this is clearly a fine goal, but it is going to require a shift in attitudes on all sides and an extensive programme of re-training in some quarters as well. For some, it will be easier than for others and there are already examples of great practice that need to be identified and held up as examples for others to learn from.

If you search the web, you will find several parent views on co-production but we thought it would be useful to get the views from a practitioner (we used to call them professionals, but then, what does that make us?) about the challenges, issues and positives of co-production.

Phil Brayshaw

Phil Brayshaw

Phil Brayshaw is a registered nurse for people with learning disabilities and has post-graduate qualifications in child mental health and family therapy. He has worked in health and social care for over twenty years and until recently, was the lead commissioner for disabled children and young people for NHS Calderdale. Phil also led Calderdale’s SEND Pathfinder work before moving to NHS England in April 2013.

We thought he was an ideal person to ask about co-production from the ‘other side’.

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I was really chuffed to be invited to write about working alongside parents from a practitioner’s perspective. As an NHS employee however, I’ve been asked to say that my ‘top tips’ reflect my own views and not necessarily those of either NHS England or NHS Calderdale.

Writing a guest post is new to me, as co-production is to so many of us, and I had a few false starts but I persevered – and that is the key to trying anything new. So, here are my ‘top five’ points to remember.

If you have any questions, leave a comment and I will do my best to answer.

1.     Don’t be afraid to try new things and if they are tough…KEEP GOING!

Co-production is about more than not doing the same things that we have always done, but doing new things together. It’s about talking to each other and working together to find brand new ways of doing things. Doing things differently can be tough, but don’t give up – after all it is better to write a dozen opening lines than none at all.

2.      Be clear about what you want or what you want to achieve

Having meaningful conversations is so much easier if we are all talking about the same thing. People often talk about shared goals and ASPIRATIONS, but these are not always easy to agree on or describe. My advice is to always start with the end in sight. You could try asking, “What would success look like?” In Calderdale, we found the best answers to this question come from children and young people themselves.

3)      Get a sense of what other people need to ACHIEVE and help them achieve it.

Shared aspirations and goals are essential to co-production. There is little point in working together if we are not all heading in the same direction. That said there are often a number of different priorities for families, communities and the various organisations. It can be useful to understand what other people need to achieve, within their families or professional roles.  Helping someone to achieve their objectives often frees up some of their time to help you meet yours.

4)      Learn to TRUST – be open and honest.

If we are going to work together we need to learn to trust each other. In my experience people generally want what is best for children and young people. Believe it or not professionals don’t come to work just to make your lives more difficult [honestly] and parents aren’t unreasonable and difficult on purpose! There is no question that the current system is adversarial and there is little wonder that we are all a little suspicious of each other. Trust will take some time and effort.

5)      Ask for help (and act on advice)

It is okay not to know all of the answers and it is equally okay to ask for help. We are all very LUCKY to have such a wealth of experience around us – in families, communities and services – we need to get much better at using it; And whether you are in a family, community or a service, it is important to remember – it isn’t always the professionals that have all the answers or solutions.

So, SNJ friends, would you like to hear more from Phil?  What would you like him to write about?  We would love to hear your thoughts on this post.  As Phil said, he is happy to respond to any comments and questions below.

You can also contact him directly via Linkedin or @PhilipBrayshaw on Twitter.

Ten things I wish, with hindsight, I had known

Debs writes….

As we go through the Special Needs Jungle, we pick up tips, we gain confidence and we often think “I wish I’d known …….. at the beginning”

I wanted to share with you the ten things I wish I had known (or had the confidence to believe) when we entered the Jungle.

  1. When you sit in the room with the practitioners, you are an expert too. You may not be an expert in your child’s diagnosis (yet); you may not be an expert in what services are available for your child but you are an expert in your child. You know your child better than any practitioner. So at your next appointment think “I know my child and I bring this expertise to the meeting.”
  2. 1401629_dancing_girlsIt’s okay to take a friend to an appointment. Not just for support but also to take notes. Someone who, after the meeting, can help you to remember exactly what was said. I have walked out of so many appointments and thought “what was it he said about…….”. They can also be the person who can take your child out of the room when you want to have a discussion you don’t necessarily want your child to hear. Taking a friend is not a sign of weakness or even seen as confrontational, it’s just support when you really need it. Often our friends without children with SEN wonder what they can do to help us – let them help.
  3. It’s okay to feel sorry for yourself sometimes. I really tried to bottle those feelings up and pretend that I was okay, that I was coping when inside I wanted to shout “why me, what did I do”. I would sometimes avoid my friends who didn’t have children with a diagnosis because I wanted to ask “what did you do differently, why do you not have to deal with the same things I deal with”and then I felt guilty for thinking this. But guess what? It’s normal. So many parents of children with SEN go through this, especially at the beginning when you are learning how difficult this system is, this system you are involuntarily dealing with. Don’t bottle it up. When I have a day like this (and I still occasionally do), I stay indoors, I turn off my phone and I cry. Then I get myself back up off the floor and I have stopped feeling guilty for being human.
  4. 1321733_broken_heartSometimes it is going to hurt. When you get a diagnosis, even if it is a diagnosis you have been fighting for because you know the label may help to get the support, it can still hurt. Just because you are expecting it, don’t think it will hurt less. It may not. When I got the diagnosis of hydrocephalus, it was unexpected and it hurt. However, when we went for the diagnosis of ASD, I was expecting it, I knew it was coming and I knew it would help but it still didn’t hurt less when it was confirmed. I can still remember sitting in the car on the return journey and feeling like my world had been turned upside down. I can still remember people saying “what are you upset about, you knew they were going to say this” but do you know what, even though I find this hard to admit, I wanted to be wrong. I wanted them to laugh at me and say “you silly neurotic woman, why would you think he was autistic”. But they didn’t and it really hurt. Then, years after the diagnosis, you will have reality checks and they may hurt. This morning I suddenly had this realisation that I won’t be able to just scribble a note for my son when he’s older. If I have to nip to the shop and maybe he’s in bed, I won’t be able to stick a post-it note to the door saying “nipped to the shop, back in 5”. Yes, I will be able to braille him a note but where do I leave it? I know we will come up with a solution but just this morning, I had a reality check and it hurt.
  5. It is stressful. When you are pregnant with your first child, everyone with children will take great delight in telling you how stressful it is, how this child will change your lives and you may think you understand what they mean – until your child arrives. It’s the same with the system, I can tell you it will be stressful but until you are going through it, it is difficult to understand exactly what I mean. At Kent PEPs last year, we asked parents how they dealt with stress and also, more importantly, how they knew they were stressed. We produced a leaflet for parents with advice and tips from parents in the same position. It’s our most popular download.
  6. Don’t get to crisis point before asking for help. In Kent, we have to go via our Disabled Children’s team to get direct payments and so many parents, who would benefit immensely from this service, refuse to access it because it means involving a social worker. We asked parents recently what would put them off and the main response was “fear of admitting you were finding it hard to cope”. Please don’t wait until you can’t cope before you ask for help. Admitting you are finding it hard is a sign of strength, not weakness.
  7. c&fbillimageI wish I had known more about the law or that there were statutory bodies and charities set up to help parents of children with SEN law. Several websites (including this one) and charities are there to give you advice on SEN law and your local Parent Partnership Service is there to give advice on SEN educational law. There is a huge list of Acts, Conventions and guidance out there to help protect our children but often, you only find out about them when you have already been through months of stress. Even if you do not have the time or ability to read and understand The Equality Act or the new Children and Families Bill, there are others that do. Try to think ahead and find out where you can get help before you need it. .
  8. You will get turned down. I remember the first time I was turned down after applying for support for my eldest son. I had presumed that common sense would prevail and he would get help because he needed it. When I was turned down, I was really shocked. I took it personally, I thought perhaps I hadn’t made it clear, perhaps I had offended someone, perhaps it was me they were saying no to. Having three children with SEN, I soon realised that the system can often be a case of “apply, get turned down, appeal”. I eventually stuck an A4 sheet with these words written in red, yellow and green on my fridge as a reminder that this was not my error, it was down to the system.
  9. You will meet some amazing people. I have met people who inspire me, who motivate me to carry on and people who I feel privileged to have in my life. Most of these people live this, they don’t do it for a living (but there are exceptions). A lot of the parents I know who are involved with their local parent carer forums are amazing to me. Some of these parents have found their way of dealing with the stress, they get involved and try to influence change. Not all parents are ready for this or want to be involved but I am so pleased to be part of the group.
  10. super_hero_flyingI am not Superwoman. If I had to choose one thing I had known at the beginning, this would be it. The hours I spent trying to achieve the un-achievable! Superwoman is a fictional character who does not have children – and definitely not children with SEN. Trying to be everything for everyone all the time is not possible. Spending your days thinking “I should have”, “If only I had”, “I wish” is never going to lead to a good place. Neither does comparing yourself to another parent who is perhaps involved with so many different things that they make you feel like a failure. People deal with things differently, some choose to get involved with forums, some choose to set up support groups, some want to go along to a support group and others just want to avoid support groups like the plague. Whatever works for you is the right thing – for you. You can always get involved or step down from involvement at a later date. You have to take time for you, you have to choose your battles and you have to remember there are only 24 hours in a day. Focus on what you have achieved, not just the things you believe you have failed in. Sometimes, getting through the day without breaking down is an achievement. Celebrate it. Getting dressed can be an achievement, as can making it to an appointment on time. Celebrate the achievements, no matter how small you think they may seem to others. You will know what it took for you to achieve it, so say “well done” and feel good about yourself.

What do you wish you had known? These are my ten things, they may not be yours. More importantly, what achievement are you celebrating today?

Ten tips when your child is newly diagnosed with a special need or disability

TanGio-phone_edited-1

He’s not a condition, he’s my boy

You may have suspected, even all but known, but the moment when you finally get a confirmed diagnosis for your child is a watershed.

You may feel numb, distraught, helpless. If you had dreams or expectations for your child’s future, they’re now in tatters. It’s time to start again with a fresh set of hopes.

When your child receives a diagnosis of any special need or condition, it is a very distressing experience that can also feel very isolating, especially if you do not know any other parents in your position. It can also, at the same time, be a relief that you were not imagining these symptoms and that you now have a name for the problem. This is particularly true when the child has a hidden disability such as Asperger Syndrome or ADHD.

But what practical steps do you need to take? Here are ten tips below, please add your own in the comments.

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SNJ is the new SEN site expert on NetBuddy!

NetBuddy logo strap_V1[1]I’m delighted to tell you that I’ve been asked to be the new SEN site expert for Netbuddy.

Netbuddy offers practical tips from people with first-hand experience of learning disability, autism and special needs. It’s a great resource and I’m really pleased that they’ve asked me to join their team of advisers. (more…)

The Brain Injury Hub – a brilliant resource

As part of Family Voice Surrey, I have visited The Children’s Trust in Tadworth a number of times as they kindly lend us a room for our meetings.

The Children’s Trust is a national charity working with children with acquired brain injury, multiple disabilities and complex health needs. They have a 24 acre site in Surrey, but offer their services to children from across the UK. Their staff are dedicated experts in rehabilitation and support work.

An acquired brain injury may be very obvious to see when it is profound and accompanied by physical difficulties, or it may be an ‘invisible disability’ that may have stemmed from a long-ago trauma or illness, that is not diagnosed for years, leaving a child with no support. The Children’s Trust helps those who need intensive levels of care but they realise that they have considerable expertise they can share at a wider level and so have developed a new online resource to do just that. Here, Ian Ray of The Children’s Trust explains all about it:

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copyright The Children's Trust

Courtesy The Children’s Trust

The suddenness of acquired brain injury can mean a child’s family life, their schooling and their relationships with their friends can be utterly changed overnight. One parent told me it was a little like shaking a snowglobe but having no idea when the flakes will begin to settle down.

It was the shock associated with acquired brain injury that we wanted to address with our new resource www.braininjuryhub.co.uk

Parents told us that in those early days in hospital, they didn’t necessarily want to know about all the complexities that may arise over the coming years – they simply needed to get by on a day-by-day basis.  Later on in the recovery process, it seemed that parents wanted to know more as their own insight deepened, and so we developed the Brain Injury Hub as an attempt to mirror the ‘journey’ parents told us about.

Visitors to the site are first asked who they are, and are then taken to a page that asks them where they are in this journey. Are they in hospital? Perhaps their child is back in education, or making their first steps into the world of work. Our hope is that we’ve presented our information in a way that gives parents and carers the information they need within just a few clicks.

The feedback we’ve had following our launch in May has been fantastic, but for all our efforts to create a resource of clinically-evidenced information, it is the real-life stories that our readers gravitate towards.  After all, it is the parents who have actually experienced caring for a child with an acquired brain injury who are the genuine experts. We’ve already seen some incredible stories shared.

On a personal level, I’ve been astounded by the capacity of these parents to cope with these enormous changes to their lives with optimism, humour and dignity. I hope over time we will see more of them sharing their stories on our site. Do get in touch at hub@thechildrenstrust.org.uk if you’d like to share yours. Other families have offered mutual support on our forums, and it has been immensely rewarding for us to see parents taking care of each other and offering advice in this way. http://www.braininjuryhub.co.uk/forum/

copyright The Children's Trust

Courtesy The Children’s Trust

We’ve also included some information for teachers on the site, in the hope that this will help what can sometimes be a difficult transition back to school. This part of the site has exceeded our expectations, with thousands of teachers already logging on to find out more about acquired brain injury.  Some have signed up for our quarterly newsletter, which has been very encouraging.

Building a resource around such a complicated condition has been incredibly challenging at times, but the project has been very well supported by the clinical staff who’ve shared their knowledge, and the parents who’ve given their time to make it as good as it can be.  We’ve had visitors from all over the world, perhaps pointing to the fact that families face some of the same difficulties, whether they’re in Portland, Oregon or Port Talbot.

So do have a look at the site when you have a moment. It’s by no means finished, and we’d like to see the site continue to develop in response to what our visitors want to see.  Over the coming months, we’ll be adding some video content to the site, and some improvements to our community space.

If there’s anything you’d like to see on the site, then do drop us a line at: hub@thechildrenstrust.org.uk

 

10 Tips for Developing Your Child’s Language Skills

Vanessa king

I recently met Vanessa King, when she joined our Women in Business Network group in Farnham. Vanessa is a qualified teacher, parent, toastmaster and an expert in teaching confident speaking and is passionate about engaging with young people of every age to improve their opportunities through her new venture, Smart Talkers Surrey.

She believes that competent communication is key to self-confidence and the ability to create the life you want. Her core belief is that every child, regardless of gender, and regardless of where in the world they live, has a fundamental right to fulfil their potential, and to have the chance to avoid a life of missed opportunities.

Speech difficulties are extremely common among children with special needs. While some need specialist speech and language help for many years and others will never speak, for many, (and this probably applies to many adults too!) simply being helped to develop confidence in their speaking skills can be hugely beneficial.

She’s written for Special Needs Jungle about how, as a parent, you can help your child do just that.

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Being able to communicate our thoughts, feelings and ideas is the most important achievement of our lives and it never ceases to amaze and delight me to realise that such a complex feat is achieved within our first 5 years of life. This skill is not something that develops on its own, however. There is a lot that parents and carers can do to help children develop their language skills. It’s never too soon or too late to start!

  1.  Talk together every day. Talk to your child whenever you can, as you go about daily activities like cooking, bathing, dressing, eating, travelling to preschool or school, getting ready for bed.
  2.  Get down to your child’s level. Ensure your child can see your face when you are talking to them. This helps them focus, lets them see and hear your words better and encourages them to copy you.
  3.  Follow your child’s lead when you talk. Take some time to see what holds your child’s interests. Watch what they look at, touch, hear and reach for and talk with them about these things.
  4.  Talk about what you are doing and ‘think out loud.’ Talk in simple words about what you are doing as you do your daily activities to develop your child’s vocabulary, for example “I am cutting carrots into circles.”
  5.  Be positive. Use lots of encouragement and tell your child what they have done well. Use specific words. “I like the way you used your words to ask for that,” and “The red colour in that picture looks great.”
  6.  Model new words. Tell your child the names of things they have not seen before. Teach them new action words when you do things together. Teach them describing words by talking about what they see, hear, touch, taste and smell. Include words about size, shape, colour and feel.
  7. Recast your child’s errors. If your child makes a mistake when talking, repeat the sentence, fixing the mistake to show them the right way. Use a positive tone and repeat it a few times but keep it natural. For example, child: “I runned,” adult: “Yes you ran, you ran very fast, you ran right to mummy.” Try repeating this same word a few more times later on, so your child gets lots of chances to hear it the right way.
  8. Use lots of repetition. Young children learn though repetition. Repeat new ideas, words and concepts over and over. Repeat stories and songs too. Repeat new words and ideas in different places, times and situations to help your child learn the full meaning and understand different ways the word can be used.
  9. Read lots of books together. Reading to your child is one of the best things you can do to help them learn. Make it a part of your day every day. Read new books but also old repeat old favourites. Choose books which suit your child’s age, language level and interests. Talk about what you read and ask your child questions.
  10.  Embrace new experiences. Try new places, games, songs, books and activities with your child. Do something special and different every chance you can as this opens up new words, ideas and concepts to talk about.

Smart Talkers helps your child become a confident, successful and effective communicator. If you would like further information about the courses we offer parents, childminders and Foundation Stage teachers, please contact Vanessa at smarttalkerssurrey@gmail.com or phone 07769 114 755. If you are elsewhere in the country or even in some places overseas, there are various other locations to access Smart Talkers.

Find Vanessa’s site here  and her Facebook page here

 

When SEN Tribunal looms, seek legal advice

Many parents find themselves in the position, as they try to secure a statement for their child with special needs, of having to go to Tribunal when they cannot reach an agreement with their local authority about provision. This is, always, a very stressful situation.

It’s hoped that the new reforms that are now being discussed will prevent much of this – or at least that’s the intention. Without substantial improvements to the draft bill however, many believe it will do nothing of the sort.

It is always recommended that you do not represent yourself at Tribunal, even if you are legally qualified to do so. This is because it is very difficult to remain detached when the future of your child is being discussed when this is a situation to which  you are extremely emotionally attached.

There are several avenues you can go down. As well as IPSEA, SOS!SEN and the NAS Advocacy Service, there are various SEN Advocates, some of whom work pro bono. You may also decide to engage the services of a solicitor – there is a list on this page.

Additionally, due to the recent changes in the law, barristers can now accept instructions from parents (and local Authorities) directly. This is called Direct Access and more information is on the Bar Council website, however, it is not possible for those on legal aid, though they can still have their case in part funded. This is particularly welcome as the costs are no longer duplicated.

One such barrister is Gulshanah Choudhuri, who works throughout England. I recently met Gulshanah and was very impressed by her compassion and quiet determination with which she pursues the best solution for her clients. She has a very personal reason for working in the field of SEN law – a mother of two, she has a daughter with Downs Syndrome and so has an intimate knowledge of what it is like to live with a child with additional needs.

While working in criminal law, she found herself often asked for legal SEN advice to parents at the school gates.

Gulshanah says, “I became very interested in SEN law while I was practising as a family and criminal barrister, that I began to question why not just do SEN law? So I did and instead of giving free legal advice at the school gates I set up my own chambers www.senbarristers.co.uk and have never looked back. I always remember my parents saying good things come when you follow your passion, and they have. Not only am I helping parents to secure what is rightfully their children’s education but I am following my passion. If I could I would have done SEN law when I qualified!”

Gulshanah has worked as a pro bono legal adviser for IPSEA in the past, and has been able to help many parents get the help their child needs, offering mediation as well as representation at Tribunals.

She says, “One client I advised came to me with an appeal to the Upper Tribunal and upon having a one hour conference with him, it soon became apparent that what he needed was to urgently amend the grounds of appeal to one of Judicial Review. The Upper Tribunal have accepted and he will now be doing the hearing himself, with me supporting him. Parents can use a barrister such as myself for all sorts of issues relating to SEN, such as a school excluding children with SEN on a school trip.”

It has always seemed to me a disgrace that parents have to seek legal redress at all when we are talking about the needs of a vulnerable child, but sadly, this is all too often the case. If you find yourself in this position, have reached a stalemate with the local authority and feel you need to seek legal advice, do your research, check out the list I have compiled, which is by no means definitive.

I must stress I have no personal experience of their services, apart from having consulted Douglas Silas who gave me good advice and my personal knowledge of Gulshanah, whom I like very much, and who would be my first port of call should I ever need SEN legal help. However, the page does include some honest recommendations from parents.

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!

Sensory needs met with a Body Sox

Many children with special needs have sensory issues, including my two. Their school used Body Sox which Son2 absolutely loves. He asked me to source one for him and here he is modelling it. I think it’s him, anyway…

Games shops with a difference – mixing wargaming with sensory toys!

Little Games Shop LogoEarlier in the week I posted an article about Son2 and his love of Games Workshop. Today, I’m very happy to host a guest spot from Hilary Knight, herself the mother of a son with special needs. Hilary runs The Games Shop at Aldershot in Hampshire and the newly opened Little Games Shop, in Farnham, Surrey.  They stock all the usual stuff to delight boys young and old – but they are much more than that. Read on to find out more:

Our son aged 9 has special needs and attends a special school. Simple right? No, not simple at all!

I am a qualified nursery nurse, have a degree in Education Studies and Psychology and was a childcare inspector for Ofsted for the under 8’s before I had my daughter. How hard could it be?

We encountered major frustration over getting a diagnosis that didn’t include a conclusion of parental blame while home educating due to threats of him being expelled at 5.5. We walked through the equivalent of treacle getting an educational statement and it almost turned my hair white looking for a school that could meet his needs!

Getting resources or toys for him in the high street like chewy tubes, chewigems, theraputty was and is – IMPOSSIBLE! So, my husband, Rhys and I, decided to bring special needs toys and resources to the high street, working with two occupational therapists.

The Little Games Shop – helping children and adults with additional needs 

  • In our new Farnham store we stock a range of resources including Theraputty, Mr Face, sensory toys, sand timers, chewigems, feely boards, card holders, larger piece puzzles, large print scrabble, pocket money toys as well as the usual mainstream games, puzzles and some really great wooden toys. Soon we are stocking handwriting equipment, weighted blankets etc. We can source products for parents and are working with local SENCo’s. We can mail them out without postage and packing costs.            
  • We don’t believe in inflated prices just because it has the tag line of “special needs”
  • We work with two Occupational Therapists who on hand to advise regarding equipment and resources. Both OT’s have experience of children with additional and sensory needs – Caroline Winfield and Louise Williams.
  • All staff have childcare qualification and/or are parents. On Saturdays we have Veronica who has worked for the National Autistic Society and has  completed courses in ASD and Young People, Social Stories Workshop and also has personal knowledge of ASD.

The Games Shop, Aldershot – 3 floors above the shop with refurbished rooms. – helping children and adults with additional needs:

  • The first Tuesday of the month during school terms, SOS! SEN the special needs advisory charity, hold an advice surgery for parents/carers to navigate their way through the SEN system (without them my son would still be home educated and very unhappy), from 10:15-12:15. No appointment necessary and no fee, although a donation is always welcome.
  • Hampshire NAS hold a social skills group for children every Saturday in Games Room 1 for children who live in Hampshire: Contact Kate Nixon on Tel: 01483 869 553
  • Every Friday from 6-9pm we hold an under 16’s Wargaming club. The shop is a Games Workshop Premium Shop and Rhys used to be a manager for GW. The event is held in the “war room” with two members of staff with bags of knowledge and passion for the game. Come along and paint your army, get expert tips, play Warhammer or Warhammer 40,000 or make/paint your own scenery. Children with additional needs are an asset in this activity with their knowledge and memory and the game can so easily be adapted.
  • Pokémon. We are very lucky to have our own Pokémon professor! Not only is he bursting with passion for the game, but as a qualified nursery nurse, he activity promotes reading and sportsmanship. He will happily show new members how to play and a more suitable time can be arranged for beginners. Saturdays is Pokémon league 10:30 to 1pm.
  • We also host Yu-gi-Oh and Magic the gathering card games on Fridays.

Contact the shop for more info.

Finally, all three rooms plus the War Room are for hire and room rates start at just £10.00 per hour. Rhys has hosted GW parties very successfully as well as LEGO parties all, of course, adapted to the children’s needs and interests.

Just shops that sells traditional games, card games, collectibles, pocket money toys, puzzles, wooden toys, Games Workshop, LEGO? Not our shops!

Pop in Aldershot and say Hello to Rhys or pop into Farnham and say hello to Hilary.

  • The Games Shop, 6 Wellington Street, Aldershot, Hampshire, GU11 1DZ Tel: 01252 311 443
  • The Little Games Shop, 4 Cambridge Place, Farnham, Surrey GU9 7RX Tel: 01252 713313

The Little Games Shop also has a Facebook page with lots of info and conversation!

A new SEN Advice service from Contact-a-Family

Contact  a Family, the national charity that helps support parents with disabled children has launched a new SEN National Advice Service.

This service will help families whose child may have special educational needs – we will be able to provide advice and information on any aspect of their child’s education. Help is available through their helpline 0808 808 3555, or post a query on Facebook or Twitter and a SEN adviser will get back to you. Alternatively drop us an email: helpline@cafamily.org.uk.

The service is available for anyone who thinks their child may have special educational needs – whether or not they have a disability or has already been identified as having SEN.

The Contact A Family Service can advise on:

The SEN process – including:

  • Early years
  • School Action and School Action Plus
  • Individual Education Plans (IEP’s)
  • Statutory Assessment/ Statements
  • Annual Reviews
  • Transition planning and education after 16
  • Appeals

Other general education issues as they affect children with SEN, which include:

  • Transport to school
  • Bullying
  • Exclusion
  • Medical needs in school
  • Attendance at school
  • Home Education

You can find out more about the service and Contact A Family in general here: http://www.cafamily.org.uk/families/SEN.html

1-2-3 Magic – the discipline system that saved my sanity

When you have children on the Autistic Spectrum, finding an effective solution to help with discipline is not easy. Out two AS boys are high-functioning but often did not realise that they had reached the limits of what was acceptable behaviour. Our sanity as parents was sorely tried at times until I came across a book recommended to me by Nancy Williams of The Studio ADHD Centre near Dorking. Nancy does amazing work with the young people that come to her, including our eldest who, at the time, did not have a full diagnosis.

The book in question was 1-2-3 Magic: Effective Discipline for Children 2-12 (Advice on Parenting)
by Thomas Phelan. If you’re thinking, oh it’s just counting, and that doesn’t work with my kids, then you might be surprised to find, as we did,  you’ve been doing it the wrong way.

The system is all about getting control back in a calm and effective manner and helping your children understand that you set the boundaries, not them. In order for it to work, you MUST be consistent, and carry through consequences religiously. This means consequences must be proportionate and deliverable.

We explained to the boys, as the book tells you to, that we were using a new system for discipline, what it entailed and that if we reached ‘three’ there would be consequences that they didn’t very much like. This included removal of privileges, electronic gadgets, TV time, Xbox for a set period and it would be stuck to. Whining about it would result in no discussion, just another count. Well, it was worth a try and, although I will let you read the whole system for yourself in the book, I will say it certainly worked for us.

In fact, when the boys started up and my head felt like it was going to burst, instead of losing control, I would just say calmly, “Ok, that’s a one.” No discussion, no further attention paid to the culprit while he digested the number. I felt instantly back in control. The decision to behave or not was his and he knew if he continued, two would follow one as surely as night follows day. After a few goes, it began to work so well that we rarely got to three.

It works because it is unambiguous. Children know what it means and they know you mean it and will follow through. This is good for children on the spectrum who need continuity and stability. I can’t say if it would work for children whose autism is more profound as I only have experience with my own boys. But it certainly has the potential for great succcess with Asperger’s and ADHD kids. And it works for parents too. It gives you back control without being overbearing. It helps you draw a line in the sand: this behaviour is acceptable, that behaviour is not. I would never claim to be an expert in behaviour, I’m just recommending to you what worked for us.

These days we don’t have to use the system much but it still works. The other day, my almost 14 year old was driving me insane. Suddenly, I remembered the 1-2-3 Magic system. “Okay, I said, that’s a one for you.”

He stopped what he was (annoyingly) doing and looked at me. “Are you counting me?” he asked incredulously.

“I think you’ll find that I am,” I replied, in a mild tone that did not reflect how irritated I felt inside.

“I’m thirteen!” he said. I shrugged and raised my eyebrow. He looked at me some more, then went off to do something else that was not annoying. Amazing, and proof that a system well-implemented and consistently applied can work.

The book has developed into a series. There’s a 1-2-3 Magic for Teachers: Effective Classroom Disciplines , workbooks and one we’ve just bought, Surviving Your Adolescents: How to Manage, and Let Go of, Your 13-18 Year Olds that I will report back on. It’s hard to know with our Asperger’s boys what behaviour is as a result of their AS and what is just teenage-ness. I am confident this book will give me some tips that I will be able to apply.

I’ve just found Thomas Phelan on Facebook and Twitter and he also has a newsletter.

Buddy Brilliant! – NetBuddy – A Great Special Needs Resource

www.netbuddy.org.uk is an award-winning website for parents, carers and learning disability professionals. It is a space to hunt for practical ideas, swap tips and access information on everything from brushing teeth to challenging behaviour. Like all good ideas, it’s so simple it’s hard to believe no-one thought of it before. So what gave Netbuddy’s founder, Deborah Gundle, the idea? Goalkeeper trousers!

Deborah’s son Zach has a learning disability.  “When Zach was little, so much of my time and energy was spent solving day-to-day problems,” says Deborah. “One day, I was in a sports shop buying football socks for my other son and I spotted some goalkeeper trousers. They were padded around the knees and the hips, and were perfect for Zach, who was about seven or eight by then and still crawling.”

That’s when Deborah decided to start writing down her ideas for other people to use, and encouraged her friends to do the same. But it wasn’t until several years later, when she met Linda Goldberg – former CEO of the learning disability welfare charity, Cosgrove Care – that the idea for Netbuddy was born.

By-you, for-you resource

Together, Deborah and Linda started collecting practical tips and suggestions from parents, carers, teachers, therapists, health workers – anyone with first-hand experience of learning disabilities. The idea was to create a ‘by-you, for-you’ resource, which people could add to and develop themselves. They wanted Netbuddy to be a place where people could share their ideas, knowledge and experience in a real, practical way.

Netbuddy went online in September 2010, and the response from the learning disability community was immediate. “This is such a brilliant idea! Nobody really knows how to cope with the day-to-day nitty-gritty unless they’ve experienced it personally,” wrote one parent. “I wish there had been something like this when my son was young,” said another.

Since launching the site, tips have been coming in on all aspects of caring for people with learning disabilities; everything from bed-wetting to hair cuts and new sections are being added all the time.

“We respond to what people want to see on the site,” says Linda. “If we get lots of tips in an area we haven’t thought about, we simply create a new section. That’s the beauty of Netbuddy – it’s completely interactive.”

If there is a lot of information on a specific topic, it is used to create an ‘information pack’. The latest packs are on sexuality and relationships, holidays for people with learning disabilities, arts and leisure opportunities and apps for the ipad.

Interactive forum

In addition to the tips sections and information packs, Netbuddy has a forum where people can post specific practical issues they may be having, or share their own break-through moments. There is also a thread for people to celebrate their good news within a community that understands the hard work behind those successes. Netbuddy’s forum hosts an ‘Ask an expert’ section, where people can post specific questions to specialists in their field. Currently, there is a learning disability occupational therapist, an adaptive technology specialist, a parenting siblings advisor and a speech and language therapist – all have proved very popular.

“I think the reason Netbuddy has really hit a chord is because there is nothing else quite like it,” says Deborah. “It’s there 24 hours a day so you can get practical help whenever you need it. It works because people in the learning disability community like to support each other. If there’s an opportunity to help someone else, they nearly always will.”

The challenge now for Netbuddy is to encourage more professionals to start using it – teachers, doctors, nurses, pediatricians, social workers, therapists, health workers and others. Some have been quick to see the potential, like health coordinator Kath Ingram, who regularly checks Netbuddy for tips.

“I love the tips on teeth cleaning, which can be so problematic for parents and paid carers,” she says. “I’ve printed out information from Netbuddy and ordered samples of recommended items to show people on visits.”

Professional help

For doctors, there are sections on encouraging people to take medication, hospital stays and medical appointments. The communication section has obvious uses for speech and language therapists, and there are lots of tips on dressing and clothing for support workers. But it’s not just healthcare professionals who stand to benefit. Teachers can also pick up useful tips from Netbuddy – activities to do in the classroom or ideas for keeping class outings safe and easy.

“Netbuddy is a goldmine of useful information,” says Deborah. “We hope people will use that information and share it with carers – either print it out or pass on the email address. When you help a carer you directly help the person they’re caring for, so it’s really important to support carers.”

 For more information visit www.Netbuddy.org.uk

Groundbreaking dance DVD to help kids with autism.

Anna Kennedy is an inspirational figure. She is the mother of two sons, one with autism, one with Asperger Syndrome. That’s tough enough on its own but, unable to find the right educational solution for her autistic son, she and her husband Sean fought endless bureaucracy, unfavourable odds and the need to raise a large sum of money and succeeded in founding their own school in London that could meet the needs of children like theirs.

The school, Hillingdon Manor School has since gone from strength to strength through Anna & Sean’s hard work, determination and the unstoppable desire to turn no’s into yes’s when it came to their children’s futures. It is now the largest facility for educating and supporting people of all ages with autism in Europe.

Anna has now developed a groundbreaking project, entitled “Step in the Right Direction”. It features a dance DVD, tutorials and interviews, offering a clear insight into an autism spectrum condition (ASC). It’s being launched at the British Institute of Learning Disabilities conference on Friday 4th November in Birmingam.

The initiative marks the fulfilment of a life-long dream for Anna, now a leading autism campaigner, as well as the director of the Hillingdon Manor School and founder of the charity Anna Kennedy online.com

Anna said, “Research and teaching experience shows us that autistic children need multiple types of stimulation to process information. Music and dance help the brain to organise itself. Hearing, listening, processing and repetition help children with autism build new learning pathways. We think this is a really fun and inventive way of connecting with and helping children develop coordination and flexibility and in the process build their confidence and improve their communication skills. With more and more young people affected by autism, I felt this was the right time to launch such a project.”

Produced in association with the world famous Pineapple Performing Arts School in London and the students from Hillingdon Manor School, the DVD features a special guest interview with Britain’s Got Talent finalist dancer James Hobley, plus the star of Sky 1 Pineapple Dance Studios, Andrew Stone. The DVD has already generated a huge amount of interest, particularly among parents, families and carers of those with autism.

Founder of the iconic Pineapple Dance studios Debbie Moore said: “This is a truly wonderful and highly imaginative dance production; a must-have DVD for parents, carers, mainstream and special schools, after-school and youth clubs.”

Every child is different but experts agree that early intervention helps with development and dance aids children with autism. The DVD’s carefully structured dance and exercise routines, ranging from freestyle to” poppin’, lockin’ and tuttin’”, can also help them connect better with others.

Tutorials feature some of the country’s leading dance experts, including break-dance tutor Jade Flannagan and Pineapple Dance Foundation’s Maggie Paterson. They are designed to help young people develop co-ordination and flexibility, change rhythm and speed, level and direction, use varied dance and aerobic exercise sequences, identify parts of the body and stretch them, improvise dance and exercise movements to rhythms and participate in important cool down activities.

Priced at £7.99 + P&P the DVD (approx running time 100 mins) can be ordered at www.annakennedyonline.com

GAPS – Early screening test for Specific Language Impairment & Dyslexia

Have you heard of GAPS? The chances are, the answer is no. And yet it’s billed as a highly accurate, easy to administer early assessment tool for detecting dyslexia and other language deficiencies in children.

It was developed by Professor Heather van der Lely, an eminent academic, using a friendly alien character called Bic, as a way of identifying children with language difficulty. It can be given by parents and professionals alike and uses repetition of sentences and non-words to identify children with a weakness in language, at risk of dyslexia or specific language impairment and those in need of further assessment and help.

It’s estimated that seven per cent of children have Specific Language Impairment (SLI) while ten per cent of children are estimated to have dyslexia. That’s a lot of people at risk of not reaching their full potential if they don’t get access to the help they need. The GAP test is designed for children between the ages of 3½ and 6½ and can be completed in as little as ten minutes to assess grammatical abilities and pre-reading skills (phonology) using standardised scores.

50% of children with Dyslexia have (undiagosed) Specific Languge Impairment; and 50% of children with SLI have Dyslexia too so these childre really need to be identified and helped so that their life chances are not limited by these problems.

Professor van der Lely’s aim is that all children in the UK will be tested prior to or when they enter school to try to ensure that any child with language weaknesses or impairment or at risk for dyslexia is identified.

However, since the test was launched in 2007, it has only been adopted by a minority of schools despite the test costing just £25 for professionals whoa re provided with 25 forms.

Obviously, once a test is carried out and a child has been identified, something then needs to be done about it. The problem here is that there is a lack of speech and language therapists in the public sector with more and more turning to private work. This is not, of course, a reason not to do the test in the first place so if schools are not taking it up, then perhaps parents who suspect that their child has an issue with language learning might want to order the test for themselves.

The Parental version (with 5 forms) costs £50 and Professional version (with 25 forms) costs £65. Thereafter forms only cost 80p each per child to test.

You can see a validation study of the system here. To find out more about GAPS, visit the GAPS website.

SEN Assessment Form Part 2

Further to the earlier blog ‘The SEN Assessment Form – Yikes!’ I thought it might be useful for some people to provide a template to help people get their thoughts down so you’re not facing a blank piece of paper. You can download it below, in MS Word format. If you need it in pdf format, just email info@specialneedsjungle.co.uk and I’ll be happy to send you one.

where-to-start (MS Word doc)

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

Get to Grips with the SEN Code of Practice

When you dive into the world of SEN provision, you will undoubtedly come across a document called the SEN Code of Practice. This is the government document that spells out to schools and LEAs what their duties are regarding special education.

LEAs, under the Education Act “must have regard to” the Code of Practice. For parents, this means that it’s a document that you must get to grips with if your child has special educational needs.

For example, the SEN COP says that when a decision is made about whether to make a statutory assessment there is one critical question:

“7:34 In deciding whether to make a statutory assessment, the critical question is whether there is convincing evidence that, despite the school, with the help of external specialists, taking relevant and purposeful action to meet the child’s learning difficulties, those difficulties remain or have not been remedied sufficiently and may require the LEA to determine the child’s special educational provision. LEAs will need to examine a wide range of evidence. They should consider the school’s assessment of the child’s needs,including the input of other professionals such as educational psychologists and specialist support teachers, and the action the school has taken to meet those needs. LEAs will always wish to see evidence of, and consider the factors associated with, the child’s levels of academic attainment and rate of progress. The additional evidence that authorities should seek and the questions that need to be asked may vary according to the child’s age and the nature of the learning difficulty.”

Note it does not mention that they need to be so many years behind or that if they are above a certain level then they don’t need to be assessed. It is about the child themselves and their progress, rather than where they come on certain scales or test measures. This is particularly true for children with hidden disabilities such as Asperger’s or Dyslexia, who are often very bright, but whose achievement could be significantly higher and more in line with their potential if they got the right help.

Also remember that KS1 tests are teacher assessed and may not be an accurate reflection of what your child is achieving. Teachers have been known to misguidedly inflate actual test scores for a child who has a difficulty with recording answers because they know what the child is capable of verbally. But when you come to apply for assessment, the inflated score actually counts against you because although the Year 2 teacher has made an accurate recording of the child’s natural ability, it is not an accurate reflection of their achievement.

Download the Code of Practice from the Teachernet website. And then read it and use it to help your child get the help they need. This is, I know, easy to say, because it takes time and energy to get through it and if you’re working a long day and dealing with a child with special needs you’re probably short on both those things. But the document is fairly well set out, in sub-headed chunks to help you find what is relevant to you. To help, the relevant section for Statutory Assessment is from page 80, or 87/217 on the pdf document.