The Sensory Story Project

We love The Sensory Story Project and have been watching it from its early stages.

As a mum to a child with a visual impairment, sensory stories are a huge part of our lives but trying to find or make suitable sensory toys to read with stories has become a problem as he has grown older.

Jo, who created the Project, kindly provided a few sample ideas for us to look at and I asked my son to take a look.

Take a look for yourself and let us know what you think.

Add the power of your voice to #ThisIsMyChild

thisismychild-250As you know, Special Needs Jungle is delighted to be involved with the MumsNet #ThisIsMyChild campaign, reviewing its inaugural blog hop and if you blog (and if not, why not?) I do hope you will write your story and add it to the link.

The idea of the campaign is to raise awareness of what lies behind the child having a melt-down in the supermarket or having a screaming fit at the playground.  To those who’ve seen this, as MumsNet says, “Did it make you go a bit… judgypants? Did you think ‘well, that child could do with a firm hand’? Or did you think that there might be more to the situation?”

It’s happened to me, as I wrote some time ago in my Sidelong glances post and if you’re a parent of a child with SEN/Disability, 10 to 1 it’s happened to you too.

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Now, no one’s perfect, let’s face it – I know I’m far from it. But if sharing your story can help make just one person pause before hoiking up those “judgypants”, it might be something you want to consider having a go at. If you don’t have a blog but have thought about it, this might be the opportunity you were waiting for. If so, Don’t forget to join MumsNetBloggers so you can enter the linky.

I’m roping Debs in to read all the linky blogs – two sets of eyes are better than one, after all – and will do a review of the ones that made the biggest impression in a week or so. We’ll be tweeting as many of them as possible too and adding some to our Facebook page, using the #ThisIsMyChild hashtag to help you find them.

Although we are lucky in that we special needs parents support each other via our blogs, Facebook, Twitter and online communities – for example, I’m a volunteer moderator at RareConnect for Son2 and my Ehlers Danlos Syndrome – it would be good if we felt more supported by the general public as well.

#Thisismychild is a great campaign and with the power of MumsNet behind it, it’s already getting lots of media coverage. Our Debs was speaking about it yesterday on Radio Kent (after 63 mins, for a limited time)

What are you waiting for?

Click here to enter your link and view this Linky Tools list…Powered by Linky Tools

Does your child know “no means no”?

Debs writes….

I am a trainer for my local Safeguarding Children Board and it is a subject I am passionate about.  One of the people who inspires me, as a mum and and as a trainer, is Emily Martinello.  Emily is a Sexual Development Consultant in Nova Scotia, Canada and here she talks to SNJ about the importance of teaching our children to know how to say “no”.

skotan_No-sign“The worst part of my job as a Sexual Development Consultant, is that I am the bearer of bad news.  My suture is education, support, and resources, and I do my best to fix the band-aid burn.

What research shows us is that up to 80% of women and 30% of men with intellectual disabilities are sexually abused before the age of 18.  That is more than four times the rates of their typically developing peers.  What we also believe to be true is that more than half of these abuse situations are chronic, meaning by multiple people, or on multiple occasions.  There are many components contributing to this high number, and there are opportunities for learning throughout the lifespan that can hopefully reduce each one.

No means No

There’s a stage everyone seems to dread, the “nos”.  When children say “no” to everything.  I guess no one likes it because it’s annoying.  I, frankly, love it.  (Full disclaimer: I don’t have my own kids yet- so I love these “stages” more than most!)  I love it because I love that children are learning to exert their independence.  They’re learning the building blocks to consent.

I was at a dance camp a few weeks ago for children and youth with special needs, and listened to a volunteer fight the “no’s” to trying on a costume.  My “Sexual Development” brain was screaming “who cares?  It’s a costume”, but I can see where the volunteer’s helper brain was going “it’s camp, we have costumes, it’s fun!”

Luckily, I was saved by the dance teacher who said “it’s okay, she doesn’t like costumes”.  PHEW!  But how many times does this girl get her no’s rejected on a regular basis? And what is she learning each time?  I’ll tell you: that her “no” means nothing.  That she doesn’t have the right to say no to something.  And really – it’s a costume!  If she can’t say no to that and mean it, how is she going to know to say no to the big things?

Of course there’s a second part to “no”- the hearing part.  There’s a new trend in caring for children, where saying no is a no-no.  Instead, care givers are supposed to say things like “first you need to”, or “not right now”, or “gentle hands”.  The problem with this is that children aren’t hearing “no” enough in a meaningful way.

When we think about sexual development, knowing “no” is one of the most important skills we can teach.  Saying “no” to things like “do you want to clean your room?”, “can you help me out?”, or “do you want grilled cheese for lunch?” is just the beginning.  Eventually, there may be bigger “no’s”- whether it be “sex” as a relationship, or maybe it’s some building blocks to keeping children safe.  Things like “NO, you can’t come in the bathroom”, “NO, you can’t change my clothes”, “NO, I don’t want your help in the shower”.

main_okYes means Yes

There’s some good news, too!  We want children to be able to say YES!!!  There are many opportunities for healthy, loving choices to be made.  This can be things like “do you want to play blocks with me?”, “will you be my friend?” YES!  YES!  YES!  Later on, this could include saying yes to things like, “can I take you on a date sometime?”, “will you kiss me?”, “Can I see a Doctor?” YES! YES! YES! Likewise, hearing “yes” is also valuable.  YES, I want to be your friend!  YES, I want to play with you! YES, let’s go see the Doctor!

Finding opportunities for teaching yes and no are everywhere – it’s the listening to the answer that’s the hard part.  Sometimes it’s all in the way the information is presented, “are you all done?” becomes, “it’s time to clean up now”.  “Let’s go outside, okay?” becomes “we’re going to go outside!”  Be prepared, if you are the one who asks the question, you’ve got to be the one who accepts the answer.

Knowing the No

The thing is, children with special needs don’t always get the chance to really ‘know the no’.  Sure, there may be a brief stage of “no’s”, but the stage is often accompanied by a lifetime of “yes’s”.  As part of education and therapy, compliance is pretty key.  But in the real world, over-compliance is dangerous.  This raises the concern about children being liked- that being non-compliant might look like being unfriendly, unwilling, or unable.

However, typically-developing children don’t typically need to prove that they are friendly, willing or able.  At least not by being testing with compliance.  Children with special needs shouldn’t need to prove this either – in fact, I’d go on a limb and say they just shouldn’t answer that test.  If there’s someone in their life who needs the child to prove who they are, there’s the proof that they’re not welcome.

There’s also another bonus,  once a child learns that they can say “no” and mean it, they don’t need to try it out so often.  We can use the “no stage” as a platform: to listen to, honour, respect, and admire a child’s ability to be a self-advocate.  And ultimately, to set the stage for knowing themselves, No-ing themselves and no-ing others.”

You can find Emily on Facebook Sexual Development Consulting or you can ask questions here.  Emily is happy to write more posts for us regarding sexual development for our children so what would you like advice on?

How to talk to Tigers

How to talk to Tigers?  Why are Special Needs Jungle posting about Talking to Tigers?  It really doesn’t sound like our usual post, does it?

How to Talk to Tigers is written by Jacob Tilley.  Jacob spent seven years living in the forests of India learning how to roar and growl (or so his bio says).  He then decided to write a book about this and he invited Ruby Thompson to illustrate it.  Ruby is a young girl who has autism

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K enjoying a good read

“How to talk to Tigers” is one of those books that as you read it, you know everyone will interpret  differently.

Initially, for me, I was purely looking at the images and thinking “wow”.  It made me remember that we should never limit our expectations.  The illustrations are colourful and fun.

Then my eldest, K, picked up the book and started to read it out loud.  He was in fits of laughter.

The book describes how to talk to “tigers” in different moods, e.g. how to talk to a poorly tiger, how to talk to an angry tiger, a naughty tiger….  you get the idea.  It’s written in rhyme scheme (i.e. the first line rhymes with the second, the third line rhymes with the fourth, etc) and my kids love this and as a mum, I love reading this out loud – so easy and fun.

I think for K, rhyme scheme just makes sense.  There are no shocks, no surprises, lines will rhyme and this is perfectly logical to him.

As K continued to read, between giggles, my youngest son, J, shouted out “this should be called how to talk to K”.  We all laughed but then I read it again later and I realised that J had a point.  One of the lines talking about an “excited tiger” was “they fly through windows, swing from door frames, knock over chairs” and I wondered if there was hidden CCTV in my home that Jacob had access to   So many of the chapters had lines I could relate to, especially the “Happy Tiger”.

I loved this book and it has become one of those that my children often ask for.  We have learned it verbatim by now and so I only have to read half the line and the kids finish it.  We’ve also had some role playing and even K  got involved.  He pretended to be an angry tiger which as any mum of a child who has ASD will appreciate, was a moment of pure joy for me.

What books do your children enjoy?

Parental Co-Production : Your views needed

Our recent post on Parental Co-production really seemed to hit home with many of you.  We received several comments on the blog, on our Facebook page and via our twitter account, so we wanted to expand this and find out more.

smoke-mirrorHave your experiences of parental co-production been positive?  Have you been involved in a project from the beginning and feel that you have really influenced the outcome?

What about with your child – have you (and they) been truly listened to when you have been looking at goals for them and how they can be achieved?  Or did you feel as if everything was decided on your child’s behalf and your views weren’t even considered?

We are looking for parents who would be happy to share their experiences with us.  Or perhaps you are a practitioner who appreciates the value of true co-production but struggle to get your colleagues or manager on board?  Would you be happy to talk on camera via Skype with us?

If you would like to learn more and perhaps get involved, then get in touch by completing the contact form below.  We would really like to hear from you.  Completing the form does not commit you to anything, other than a chat.

Carer’s Week: My son is a young carer

logoIt’s Carer’s Week, organised and supported by quite a few charities in the UK

Carers provide unpaid care by looking after an ill, frail or disabled family member, friend or partner. Carers give so much to society yet as a consequence of caring, they experience ill health, poverty and discrimination.

Caring Facts

  • There are over 6.5 million carers in the UK.
  • Every day 6,000 people take on new caring responsibilities.
  • Every year two million people take on new caring responsibilities.
  • Most carers (5.7 million) are aged over 18 and the peak age for caring is 50 to 59.
  • 1.5 million carers are aged over the age of 60.
  • There are 175,000 young people under the age of 18 who provide care, 13,000 of these provide care for 50 hours or more per week.
  • One in eight workers in the UK combine work with caring responsibilities for a disabled, ill or frail relative or friend.
  • If you are not a pensioner, or in full time education, you may qualify for £59 a week government allowance, but only if you earn less than £100 a week net.

To mark Carer’s Week, SNJ’s pal Angela Kelly, who is Tania’s co-chair at Family Voice Surrey Parent-Carer Forum, has written this moving piece for us about her own son who is a young carer…

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Young Carers – Angela, Edward & Monty

Young carers are children and young people who look after  or help to look after someone in their family who has an illness, a disability, or is affected by mental ill-health or substance misuse.

Young carers often take on practical and/or emotional caring responsibilities that would normally be expected of an adult. The tasks undertaken can vary according to the nature of the illness or disability, the level and frequency of need for care and the structure of the family as a whole.

angelaboysThe above is a definition of the tasks a young carer undertakes in their daily lives, and it outlines it quite well.  What the statement cannot tell you though, are the sacrifices a young carer makes, which in many cases amounts to the loss of their childhood.  The social, emotional and wellbeing sacrifices are immense, but often not realised or noticed by the young carer.

However, in my experience  it would be difficult to find a young carer who would see their role in the same way.  Many of the ones I know would shrug their shoulders and tell you it’s “just life”, what they do, what they are used to, how they have been brought up. I have every admiration for them.

My older son, Edward, is classified as a young carer  to his younger brother, even though he has his own difficulties. Although he has my support (many young carers may not have this if they are caring for their parent or parents) there have also been many occasions when he has had take to take on the role of caring for his brother.

He has had his brother, Monty, sleeping in his bed on many occasions to enable me to get some sleep after perhaps two or three nights of tending to his very active brother. He has then had to attend school the following day.

He has tried to help his brother learn positive ways to behave and has helped to feed him when I, after an hour of coaxing, had given up, thoroughly exhausted and despairing at what life had become.

angela2He has missed out on all sorts of trips because I have been unable to take his brother along because his behaviour is too disruptive (there were never many willing babysitters!). He has not been able to join the local cricket club.  However the most heartbreaking is that he has been the object of severe bullying at school because his brother is ‘a retard’. He is, in fact, autistic with seizures and learning difficulties.

School never acknowledged the bullying and merely punished my own son’s retaliation to the bullies. I felt totally helpless.  He has also had to tolerate my guilt and anxiety at not being able to do many of the things with him that I wanted, and he needed me, to.  Instead we snatch the odd outing together and have lunch together now and then. Not really the mum and son things I envisaged when I dreamed of what having children would be like.

Despite all of this, the love they have for each other is amazing to see. They fight and fall out; which siblings don’t!  I do know that Edward would do anything for his brother (except watch CBeebies – there is a limit!).  His passion for fishing that he learned from his older siblings (who have moved out and are living independently) has caught  on and he has now hooked Monty into the sport, tiny steps so far but one day it might be a shared interest they could do together, so I am hopeful.

I asked Edward just now if he thought he was a young carer and he responded, “Nah, not really, it,s just what I do.”

Says it all really!

Angela wrote about a Day With Monty a while ago on SNJ. Read it here

No change please! ASD Son2 and the hair tong dilemma: Can you decide?

Tania writes:

Yesterday it was my birthday and I was very pleased to receive some wave-making hair tongs to bring a spot of variety to my poker-straight locks.

tania-bday13

The scene of the crime

I gave them a try that evening as we were going out for a family dinner to our favourite Italian (Il Colosseo in Farnborough in case you’re interested). I was pretty pleased with the results and went to show Asperger’s Son2 (almost 14) who was, as usual, ensconced in the Technolair.

He broke off from his laptop for a moment to have a look and I could tell by his face that it wouldn’t be good.

“You look like a Disney Princess,” he said. “I don’t like it.” He gave me a hard glare and turned back to his computer.

I was, actually, rather pleased with looking like a princess, especially given my advanced years – although there is always the danger of looking a bit mutton.

This reminded me of when I (obviously mistakenly) wore some purple crushed velvet leggings- something quite different and unusual for me. Son2 pointed at them and asked, “What is that fiasco? Take them off.”

When I told him I wasn’t going anywhere and no one would see me he replied that he would see me, because, of course, that was all that mattered. I have never worn them again.

Son2, like many children with ASD, finds change very difficult and for him, this is only getting worse as he gets older. It particularly includes anything different about me. As the central person in his life, he likes me to be the same at all times. He also doesn’t like me being away, which can make life difficult.

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Don’t mention the hair…

When we got to the restaurant, me still with the dreaded waves intact, I made the mistake of mentioning to my sister-in-law, within Son2’s hearing, that he was unhappy with my Disney Princess look. This, of course, reminded him of his unhappiness and that, coupled with the noise of the restaurant, was too much. He refused to speak or to order any main course or eat any birthday cake and sat plugged into his iPad for most of the rest of the evening.

It was only near the end of the evening, when he pulled up the familiar images on his iPad of his carefully-painted Warhammer figures that he began to relax and managed to have some after-dinner mints.

I could have kicked myself for mentioning the hair when we were at the restaurant. It’s a bit like the Fawlty Towers German/war scene: Don’t mention the hair. I mentioned it once and I think I got away with it.  I got away with it in the house, but alas, the second time meant the evening teetered on the edge of disaster.

I think it illustrates how easy it is to slip up when you’re walking on eggshells most of the time. Life is not normal, even though your kids have no visible sign of disability. I wasn’t thinking about the repercussions of careless talk.

When we got home, I tied my hair back but it wasn’t enough. This morning I went into him with freshly washed and back-to-normal straight hair. He opened his eyes, looked at it and sighed happily. Everything was as it should be.

So what do I do with the hair tongs? Do I keep using them in the hope he’ll just get used to them or pack them away in their box? Help me out and vote below!

Labels: Love or Loathe them?

Deb writes…

Are labels a help or hindrance?  Do you love them or loathe them?  Do they change the way you or your child are seen?  Do they change the way you or your child are treated?

What about the labels given to the parents?  Oh yes, we all know they happen.  I asked a group of friends what labels they had been given by family, friends and practitioners and if they thought they impacted on the way people interacted with them.  Some of their responses made me genuinely laugh out loud but some were just a touch too close to home.  So what labels are parents given – do you recognise yourself in any of these?

Labels c. SNJThe Bubble Wrap parent.  Also known as a Cotton Wool parent.  This parent is judged as being too protective, hindering their child’s development.  They are seen as not allowing their child to experience life or not allowing their child to take normal risks.

The Bolshy Demanding parent.  Also known as the Rottweiler parent.  This is the parent who is educated and knows what the standards for services should be.  This is the parents who refuses to take “no” as an answer; the parent who will stay up all night reading the Education Act or the Equality Act so they can challenge decisions made.  This is the parent that the good practitioners admire and the bad practitioners detest.

The Competitive parent.  Also known as Oh no, here they come parent.  This is the parent that other parents dread bumping into.  The one who wants to constantly tell you just how much harder it is for them than you.  The one who makes other parents walk away from support groups believing they don’t belong there as their child isn’t disabled enough.

The Coping parent.  Also known as the Brave parent.  This is the parent who, from all appearances, seems to be dealing with everything perfectly.  They just get on with it – or so it would seem.  This is the parent who never asks for help and rarely, if ever, complains officially.

The Helping parent.  Also known as the Hindering  or Controlling parent.  This is the parent who supposedly hinders their child’s development by helping them too much.  The parent who will do “things” for their child instead of allowing their child to learn to do it themselves.

The Neurotic parent.  Also known as the Over Anxious parent.  This is the parent who looks for problems that don’t exist.  The one who refuses to accept “they’ll do it when they are ready”, the parent who thinks their child is not developing at the expected rate.

The Unengaged parent.  Also known as the Hard to Reach parent.  This is the parent that doesn’t access services, doesn’t respond to surveys; the parent who doesn’t always show up for appointments.

SuperMumAnd let’s not forget everyone’s favourite – the Special parent.  Also known as the Super Hero parent.  This is the parent who  gets told   “I don’t know how you do it”, “I think you’re amazing”  “I wouldn’t be able to do what you do” and the ever popular “only special people get special children”.

So which label fits you?  If you are anything like me, then you will have heard most of these at one time or another.  Usually I am known as the bolshy, demanding rottweiler (and yes, I was actually called that) and the coping parent.  Oh, and of course, the “Special” parent.  Which means that when I find myself having a bad time and not coping, no one quite knows what to do with me.  I had been put into a lovely little box and I fitted in there nicely – how dare I come out of it!

Often, this is what happens with our children.  They are given a label and society/family/practitioners all have different expectations of what that label means.  For example, Autism can mean “rain man”, “no eye contact” or “just naughty” depending who you speak to (and how your child presents at that particular time) but as any parent will know, our children are individuals and have their own personalities.  They also have good and bad days – why should a label change that?

We often label practitioners.  Supportive, waste of time, self-interested, my life-line, pen-pusher and the list goes on.  How often though, have you had met a practitioner and thought they were fantastic, only for a friend to be shocked because their experience had been very different?  Does that mean practitioners are individuals, have their own personalities and have good and bad days too?

So, if this applies to our children and to practitioners, then obviously this means we too are individuals with our own personalities.

Why should a label change that?

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?

Politics and personalities in the SEN jungle

Like me, my co-contributor, Debs Aspland, grew up in the call-a-spade-a-spade, working class, north-west of England.  Also like me, she has far too much to do trying to juggle work and care for her special needs children to have any time for the politics and game-playing that has so often, in the past, made lives difficult for parents trying to cut their way through the special needs jungle.

In this post, our Debs who, you will remember, is Director of Kent’s parent-carer forum, Kent PEPS, explores the different personalities we meet as parents and individuals in our daily lives and how thinking about this – and your own approach – can help you navigate the system to get the best help for your child.

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Any change, even a change for the better, is always accompanied by drawbacks and discomforts.

Arnold Bennett

Any change, even a change for the better, is always accompanied by politics and personalities.

Debs Aspland

True co-production with parents is a goal that came out of Aiming High.  The Department for Education allocate a small grant each year to a Parent-Carer Forum within each local authority, with the remit that they work with health, education, social care and other providers to ensure that the services they provide are the services that families want and need.  Fantastic, what a great way forward!

However, the DfE forgot to tell the health, education, social care and other providers that they had to work with the Parent-Carer Forums.

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Special Needs Jungle named in The Times “Top 50 Sites To Make You Smarter”

Wowzer!

Special Needs Jungle has been named in the The Times (yes the UK national newspaper) as one of its “Top 50 Websites To Make You Smarter”.

Special Needs Jungle

How amazing is that?

Thanks to Justine Roberts, co-founder of MumsNet, who gave SNJ the ‘thumbs up’ in the ‘parents and teachers’ section of the Top 50.

It means a lot, especially as I’ve recently been diagnosed with  heart rhythm condition, Inappropriate Sinus Tachycardia, which makes day to day life much more difficult as I try to keep up with all my commitments.

This is partly why I’m so pleased that Debs Aspland has come on board to contribute all her knowledge and experience of SEN and coaching and help me take Special Needs Jungle to a new level.

SNJ is, at the moment, voluntary, although if I carry a post about a commercial product, I do ask for a small donation to my boys’ special school.

I’d like to move it to a self-hosted WordPress, but I don’t have the time to make sure it’s done properly, so any advice from savvy readers would be gratefully received!

So, thanks again to The Times and Justine. You’ve made my day!

A morning with Monty, a very special boy.

My good friend Angela, who is my ‘co’ in co-chair at Family Voice Surrey, always has an air of unflappability. I’m not quite sure how she does it.

As well as being the parent of two sons with ASD, she is studying to be a psychologist. Angela’s younger son, Monty, is a delightful boy who attends a special school. But his ASD means that, like other children with autism, he has a schedule and a sense of reasoning all of his own that can be exhausting.

Here, Angela writes for SNJ about a morning with Monty.

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In the distance I can hear screaming. It sounds terrifying and it’s coming closer.

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My pick of parents’ guest posts on Special Needs Jungle this year

SNJ-logo smallIn the last year I’ve been lucky enough to have had many parents write about their families and the issues they face raising children with special needs. These woman have a lot to share from their experiences that can help others in a similar position and so, as the year nears an end, I’d like to showcase them here in case you missed them when they first appeared during 2012.

Charlotte’s amazing brain – a heartfelt story about childhood stroke

Charlotte Neve was just seven when disaster struck. Her mother, Leila, has had to face the ultimate horror for any parent and even now, Charlotte has a significant brain injury as a result of her stroke that they are facing with the same determination as they did in their early, dark days when even survival wasn’t assured.

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Advice for SENCos – the parents’ perspective from Hayley Goleniowski

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.

Read More

When the words move by themselves – it could be Visual Stress

I met a lady on Twitter a while back, Michelle Doyle, who was talking about ‘Visual Stress’. I wasn’t really clear about what this was so Michelle has kindly written about it for Special Needs Jungle about how it affects her son and her fight to get him the support he needs.

Read her story:

Pathological Demand Avoidance – one family’s story

Pathological Demand Syndrome is increasingly being recognised as being on the autistic spectrum. People with PDA will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control. One mum, Deborah Rourke, has written for Special Needs Jungle about her son, who has been diagnosed with PDA and their fight for support. It’s a heart-breaking story. Please share it as widely as you can to raise awareness of PDA.

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Helping your special needs child – a mother’s story

A mum called Tanya contacted me the  other day and asked to share her story about her journey to support her disabled son with everyone, which I am only too delighted to do. Tanya has some extremely useful suggestions so I urge you to read it. Please leave your comments in the comments section so she can see them.

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Empowering parents is the goal for Pat

Pat Bolton is a parent of a young person with special needs who works with a small  team of Participation Practitioners at Parents In Power, Gateshead,  www.parentsinpower.btck.co.uk  Pat helps parents to get the support their children need.

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Resilient Parenting – A Guest post by Lesley McCall, NLP & Hypnotherapy Practitioner

Lesley McCall is an NLP practitioner and Hypnotherapist and has a child with SEN. She is experienced in helping people with parenting issues and with children who have special needs. She has some advice on how you can stay strong as you raise your children.

Read more

Why I turned my back on my TV news career

Recently I appeared in Woman magazine – a small section in a feature entitled, “Meet the regret-me-nots”

My piece was headlined, “I regretted becoming a full-time mum”, which isn’t strictly accurate – rather I found myself, like many mums who give up professional life for stay-at-home motherhood, feeling a certain wistfulness for opportunities forgone. I also experienced the loss of self-esteem that many women feel when they no longer have a full-time, possibly high-flying career. In fact, when I stopped being a television news presenter, even my own mother (herself a career woman) stopped boasting about me. After all, I was just a mum now, wasn’t I?

Well, I happen to think that parenting is the most important job that anyone can do – because done badly you can ruin the life and chances of another human being. And if I’d been at work, I may not have had the time or energy to work out why my children were different. The subtleties of Asperger’s can easily be missed or misinterpreted and that can lead to the child not getting the help they need to fulfill their potential.

You can, of course, be a great parent and work full-time and I would never suggest anything else – other peoples’ lives are simply none of my business. But for me, once I’d held my son, my decision was made. I think my colleagues were a little shocked that this ambitious, somewhat fierce, journalist could just walk away from what I loved doing so easily.

We had to move to a cheaper part of the country to afford it at the time, but my own chaotic childhood had left a deep yearning for a stable, traditional family structure and I’m lucky that, despite the special needs issues, we still have that. I’ve also replaced my career in the often soulless world of television news with something better – my family, my writing, the special needs work and my new job helping people affected by congenital limb differences. I’m a better person because of it. Maybe now my (sadly, late) mum would even boast about me again if she could!

Anyway, now a new issue of Woman is out, I figure they won’t mind if I post my own little piece here. You can find the Woman Magazine website here. Thanks to reporter, Nikki Osman, who wrote the piece. Click the image or the link below to read it for yourself.

My husband and I are off on a spa break tomorrow, courtesy of GP carers breaks in Surrey  If you’re a carer in Surrey, you could be eligible too. If you know someone this applies to, please pass the link on to them.

Look out for the regular story round up tomorrow!

Woman Magazine 9April-Tania Tirraoro.

What did you miss? Special Needs stories from the last week

It’s a bumper round-up of special needs stories and blogs this week – check out what you might have missed:

Got one of your own? Add it in the blog comments.

TOTS 100 - UK Parent Blogs
familyholidays.co.uk

Resilient Parenting – A Guest post by Lesley McCall, NLP & Hypnotherapy Practitioner

Happy New Year! At this time of the year, we’re often thinking about how we can change our lives, and those of our children, for the better. I’m delighted to have a New Year guest post from Lesley McCall, an NLP practitioner and Hypnotherapist. She is experienced in helping people with parenting issues and with children who have special needs.

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Lesley McCall

Nobody ever warns you do they?  When you have a baby it’s all excitement and blue sky with no hint of a cloud. Nobody ever warns you of the pain you will feel when your child is struggling – it’s like having your own little voodoo doll – they get hurt and you feel the pain. Suffering by proxy.

However if we can learn to be resilient parents it will help our children be resilient too and many studies have shown that resilient children make happier adults.

So what makes us resilient? The short answer is learning to cope with adversity. The gardeners amongst us know that if you raise seedlings on a warm windowsill with no draughts then they grow ‘leggy’ and weak. These seedlings will wilt as soon as they face the cold winds of outside and will struggle to survive. Far better to allow them some cool breezes now and then while they are growing to prepare and strengthen them for the outside world. In the same way our children would never have learned to walk if we had never let go of their hand.

So how do we become resilient parents? How do we maintain our perspective when our children are unhappy?

Think of it like this – if you are drowning then you can’t save anyone else—all that happens is that you both drown faster if you try. But get yourself into a boat and you can pull them in too.

Some Techniques that may help:

1. Positive Future Pacing

Anxiety is all about the future – anxious people imagine all sorts of disasters approaching. If all you can see is oncoming disaster, no wonder they are scared. When your child has challenges it’s easy to fall into the trap of seeing the worst – but that’s no use to either them or you.

The truth is that you really don’t know what lies ahead. No matter what you have been told by medical professionals, health workers, well-meaning friends – they don’t know for SURE how it will turn out – nobody does. If someone tells you that in all probability such and such will happen say ‘How do you KNOW ?’ Always believe in the best possible outcome – you never know, it might happen.

2. Challenge negative thoughts – yours and your child’s.

The most influential person you listen to is you– so be careful what you say to yourself. Challenge negative thoughts – are they really true? How likely are they to happen?

3. Learn to be selfish from time to time- without guilt

Your child needs you to be strong – if you are stressed to the point of illness how is that going to help them? So take care of yourself so you can take care of them – eat well, learn to relax, take time out for you when you can. This all makes you stronger – better able to support everyone else.

4. Think Straight- perspective!

Don’t make problems worse than they are – and don’t invent them. If it hasn’t happened then don’t think about it – it may never happen.

5. Reframe the negative to the positive

‘My child can’t do ….but they can do

‘This is never going to happen…..but something better might’

‘I can’t see a solution to this ……yet’

6. Remember – you and your child see things differently.

What hurts you might not bother them. Your child is not you. For example: if you are an extrovert then you might hate being on your own but if your child is an introvert then they may need to be alone to ‘recharge’ their batteries. They may not see being alone as a problem. Do not impose your ‘model of the world’ on them – they have different ideas, beliefs and views to you. If they say they are okay – believe them.

Finally always remember that there is no such thing as a perfect parent. If you offer your child unconditional love, support and approval then you – and they – are doing well.

If you would like my free relaxation techniques please contact me on

Lesley@thirdattic.com or contact me via my website, www.lesleymccall.co.uk

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

Books I recommend for Special Needs

I have quite a collection of books about special needs and parenting and thought I would share some recommendations with you. I usually buy mine from amazon.co.uk, so I’ll link to each book so you can have a closer look.

1-2-3 Magic – Thomas Phelan – This is an absolute must for all parents who want to regain control of their children and their own lives. It’s slim and easy to follow and very very simple. The key is to talk to your children about this new method of discipline, and when you are counting – don’t say anything else! Both parents must buy into it and FOLLOW THROUGH. Our usual punishment is removal of computer privileges if we get to three without compliance. We don’t usually get to three. It works.

The Complete Guide to Asperger’s Syndrome – Tony Attwood. The foremost expert on AS. Great book, easy to read. I used some of this to help explain my son’s condition for his statementing process.

Kids in the Syndrome Mix of ADHD, LD, Asperger’s, Tourette’s, Bipolar, and More!: The One Stop Guide for Parents, Teachers, and Other Professionals (Paperback) -by Martin L. Kutscher; Tony Attwood; Robert R. Wolff.  – Excellent book explaining the co-morbidities and how you can take practical steps to help them.

Hot Stuff to Help Kids Chill Out: The Anger Management Book -by Jerry Wilde.  A slim volume That is written to be read alongside your child and shows that that anger actually damages themselves and helps children take responsibility for their own emotions. A great little book.

Can I Tell You About Asperger Syndrome?: A Guide for Friends and Family (Paperback) -by Jude Welton – Another slim volume written from a child’s perspective explaining his view of the world as a child with AS. Very useful for siblings, friends, teachers and grandparents. Lobvely illustrations and easy to read typeface.

If you have any recommendations of your own, please leave a comment, I’d love to hear from you.

See my other blog – Not As Advertised

I’ve decided to start a second blog. I know, that’s just greedy but there are plenty of them to go round if you want your own. It’s called “Not As Advertised” and it’s for all those posts that I don’t want to put on here because this site focuses on special needs.

Not As Advertised - Try it and see!

Not As Advertised - Try it and see!

It’s about how the life you expected to have never turns out as you expected -hence the title,  Not As Advertised. If you like these blogs, please take a look at Not As Advertised and I’d be very pleased if you followed it..

The latest blog is entitled ‘It’s my birthday’ because it is. My birthday. I’m double 21. How on earth did that happen?