Parents Voices

• The Nihal Armstrong Trust
• Including Samuel
• A Parents Challenge
• Ross’ Story
• Daring to Dream
• Parents and Alliances for Change
• Where are we…
• Dear Little One
• How to Lose your Mind But Mend Your Heart
• Labels
• Challenging Behaviour and Autistic Children
• Why it’s Worth It
• A Radical Perspective
• Full Training List

Parents are making inclusion happen in pockets around the world. We need to listen to their voices and their experiences if inclusion is to become a reality in our education systems. This page is a collection of stories and accounts from parents of disabled children.

• Some amazing feedback on the reality of Person Centred Planning – Local Offer Impact (2015) = Read more.
• An interesting article for parents on the 3 myths of ‘special education’ – Read Article here

Great Offer on some of our Books that parent will love

Save money when you buy our three newest books Restorative Solutions, Dear Parents and Seeing the Charade together.

Click on the flier to download pdf with more information and order form.

“Thank You very much for sending across the ‘Dear Parents’ book by Micheline Mason. Her book symbolises the invincibility of true human spirit and epitomises courage of the highestorder.”

Parent

All Born In

This is an excellent blog for families of children with additional support needs. It includes a record of a transition journey from primary school to secondary and beyond.

The Oxford English Dictionary definition of inclusion is “the action or state of including or of being included within a group or structure”. I interpret this as a state of being rather than one of transition. So when talking about inclusion, I start with the premise that we are all born “in”.

There are lots of barriers and situations that pull against that premise and I’m sure we can all think of groups, individuals and, even at times, ourselves who have been excluded. Inclusion must therefore also involve overcoming and removing these barriers. Within Scotland , there is plenty of legislation, guidance, organisations and good practice in place trying to achieve just that. For young people within education these include GIFREC , guidance from Education Scotland and the use of coordinated support plans. The aim is to give everyone the same opportunities and experiences but specifically does not mean it’s delivered in the same way to all.

Parent’s Blog

Katie’s Geography Story by Rachel Froggatt

Read about how Katie’s love for Geography got better through help from her Mom and a little personalisation from a very good teacher.

Click on the link below to read the story…

The Geography Story for Inclusive Solutions

Long View on Inclusive Solution’s Work

Josephine Feeney has written the following about her son Finn and about how an Inclusive Solutions conference made the scales disappear from her eyes…

Josephine Feeney – A Year With My Son Part 1

The following is an exert from Josephine Feeney’s book ‘A year with my son.’

A Year With My Son

Part 1

By

Josephine Feeney

That day, the sky was an unbroken tablecloth of blue. Underneath it, we cycled across the chalky plateau-land of Normandy. I wanted to be alone: to muse on my thoughts; to gaze out at the endless fields of wheat, corn and barley; to feel the cool breeze on my face; to push the pedals and forget about everything. This was our holiday: I wanted to feel free and happy.

Beside me, my son cycled. His feet noisily pushed the pedals as he huffed and puffed at every slight incline. Then, the dialogue between us began; ill-tempered on his part: badgering, cajoling, prodding. “Why do we have to come to France every year? Why can’t we go somewhere exciting like Thailand or Bali or Dubai?”

“Don’t you like France?”

“I hate it.”

“What do you hate about it?”

“Everything – the food, the countryside, the beaches. The French!”

For a few minutes we pedalled in silence, up the hill towards the wind turbine. We stopped to listen to the whine of the sails and the whining, grudging voice of my son started again. “Why can’t we go to Germany or Italy or Spain?”

Then my temper snapped. “What is wrong?”

A surly, “Nothing,” was the response.

“I know there’s something wrong. What is it? Tell me?”

“Nothing’s wrong. I just hate France and I’ve told you so many times and still you book the holiday without asking me.”

“That’s not true!” I argued.

“I said I didn’t want to come to France.”

“Honestly – we work so hard, all the time and save up so carefully for two weeks in France. We’re in a lovely spot and I thought we were having a great time together.”

“And why can’t we have a dog?”

“What?”

“You heard me. Why can’t we have a dog?”

Where had this come from? I wondered. Here we were standing on top of a hill, overlooking the stunning, Normandy landscape. The sun was warm, everything was perfect. “Why are you being like this?” I asked. “What’s really wrong?”

Then silence. The slight hiss of the turbine grew. “What’s really wrong?”

I noticed the tear, even though he tried to hide it. “I don’t know.”

“Why are you being so difficult?”

“I’m not sure.”

“It’s not France, is it?”

“No.”

“It’s not the dog, either.”

“No.”

“What’s the matter?”

“I’m frightened.

“Frightened?”

“Of the future.”

“Frightened of the future?” I echoed his words.

“Yes… what am I going to do? Who am I going to be?”

“Oh son… you shouldn’t worry about that,” I said, trying to sound reassuring.

“Mum – I’m eighteen tomorrow. I’m going to be an adult but…” he hesitated.

“What?”

“But I don’t know how to be grown up.”

I smiled. In my head I was thinking of a quick, cheap, one-liner. Nor do most men. But the thought that overtook me was, none of us really know.

“Look, son. I’m not going to abandon you on the steps of a church. I’ll always be here for you, so will your dad. We’ll help you… to continue growing.”

“Thanks Mum.”

We hugged and cycled home and I thought of the old, cynical expression, “A burden shared is a buck passed.” For now, I felt an overwhelming sense of anxiety about my son’s future. It was so huge and oppressive that I found it hard to cycle back to the holiday home. I managed and as soon as we arrived, he jumped off his bike and said, “Fancy a game of table tennis?” I played and, for a while, I forgot my anxiety. In truth, I parked it around the corner for the rest of the holiday and cycled, swam, read, played table tennis, ate, drank and sat around as if I didn’t have a care in the world.

And then we returned home… and woke up.

But first, a bit of background:  I met my husband and married him within a year. We met, as he says, when we were, ‘almost young.’ I was in my mid-thirties when I found I was expecting my first child. It was a difficult pregnancy so I had to stop work as a supply teacher at twenty weeks and at thirty-six weeks, after travelling to a wedding in Scotland, I was hospitalised with suspected pre-eclampsia. I spent the rest of my pregnancy with my feet up. I read and ate a great deal. When Finn was born, I was three and a half stone over my normal weight.

I was seriously traumatised by the labour. Induced at forty one weeks, I spent several hours with doctors and midwives extremely concerned about the baby until at 8.30, one summer Monday morning, Finn was born. For a moment, I held him and then he was taken to be examined by the doctors as there were problems with his breathing.

Then there was a week in hospital of recovering from the consequences of a rushed forceps delivery and a hospital-acquired infection. My husband came every morning with fresh sweet peas from our small back yard. He helped me to look after our child and encouraged me to persist with breastfeeding. It was so painful but I said to myself, “There’s no alternative. You have to do this.”

To say that Finn, our first-born, was the most beloved child would be an understatement. No child was ever loved and cherished as much as him. He was so gorgeous, so responsive, so cheerful and so clever. Neither of us were in regular employment and our income was seriously limited but we had lots of time to spend with our son. Every morning ‘Daddy’ would place Finn at the end of the settee and play the guitar and sing to him. We never went out or had babysitters because we wanted to be with our son so much.

“Do you think we’re mad?” I used to ask Finn’s Dad.

“No. It’s just so lovely to have such a wonderful son,” he would reply. “All new parents must be like this.”

When Finn was six months old, we moved house. The mortgage was much bigger so I had to return to work so did Finn’s dad and poor old Finn had to go to a child-minder for half of the week. The rest of the week was filled with Pram Clubs, visits and fun. At home we would lie on the carpet together and I would hold up picture books. At eight months of age, Finn, sitting on my knee, knew when to turn the page of a picture book.

As Finn grew I would often roll out a sheet of wallpaper and give him chunky crayons or paint and he would paint and draw all over the paper. To us, he was just the brightest, loveliest, most articulate child in the world. He loved books and our weekly visits to the library were the greatest treat in the world.

When Finn was two years old, his sister was born and, understandably, he found it very difficult to share our attention. He used to climb up onto the wheels of the Silver Cross pram, prod her in the stomach and shout, “It’s woken up!” before becoming very cross that when Morag woke, I had to feed her. Although I encouraged Finn to sit close to me and Morag when I was feeding her, he often slapped my breast and shouted, “Stop it, Mummy!”

Eventually, his greatest enemy became his dearest friend as Finn and Morag grew to play, conspire and plan together. When Finn started school, Morag cried with loss, envy and frustration. She wanted to be with him, she didn’t want others to play with him.

In our opinion, Finn had received the best ever start in life so… school would be a doddle for him. He already knew how to read, count and draw. He had watched hardly any television and he could sit still and pay attention for long periods of time. He loved listening to stories and going for adventures in the park, the woods and the countryside.

But when Finn started school we realised that life was no longer about what he could do but it was about what he couldn’t do. He was four years old and his whole life, his personality and everything about him was measured by a series of tick boxes.

It doesn’t take the greatest psychologist to realise that when people tell you that you can’t do something, you fall behind with everything. So…

Finn can’t recognise his letters.

Finn can’t dress himself.

Finn can’t put his PE kit on.

Finn can’t draw.

Finn can’t paint.

Finn doesn’t eat properly.

Finn wets himself.

Finn can’t do…

Finn can’t…

Finn.

Finn’s name became synonymous with failure and deep sighs. Parents evening became a predictable mini-drama of teachers giving me and Finn’s dad a lesson in psychology about what we should do and worse, what we should have done.

You should have prepared him more for school.

You should have taught him how to dress himself.

You should have shown him how to get into his PE kit.

You should have taught him his letters…

And because I was so heartbroken that my little son’s spirit was being crushed, I didn’t say that Finn could read, never mind recognise his letters. He loved stories and that, essentially, is what written words are for when you’re four: stories.

Finn started school in 1997, just after New Labour came to power. It was a time of great hope and optimism. Many teachers anticipated huge, positive changes in the National Curriculum and a return to a more child-centred education. So it did come as a massive shock, as Finn progressed through school, to discover that the education system was becoming more, not less, prescriptive and if you were creative and free thinking, school would gradually become more difficult.

Eventually, Finn was diagnosed with an Autistic Spectrum Disorder and he received support within and without the classroom. We had many energy- sapping, nasty battles about provision for Finn which went on until he was fourteen years old. After a particularly unpleasant disagreement about Finn’s support, we took Finn out of his Catholic Comprehensive school and moved him to a county Comprehensive with the most amazing teachers and support system. Within a year, they transformed Finn’s life and, consequently, ours. When he started in Year Ten he came with a prediction of achieving nothing at GCSE but he turned it around and managed to get five A to Cs. Another two years at this enlightened school brought Finn two good A levels – a huge achievement for a boy who was predicted nothing at the age of fourteen.

The experts kept telling us to prepare for a difficult future. We were, they proclaimed, in denial about Finn’s abilities and his disability. “Wake up and smell the coffee,” one Child and Adolescent Psychiatrist said to us. “You’re going to have serious problems ahead.”

Others said, “He won’t be able to live independently.” And all the time in my head I was thinking, Hang on a minute… this is the little boy who knew how to turn the page of a picture story when he was eight months old. This is the boy who was talking to the local shopkeeper about the Taliban when he was three years old. This is the boy who cheered with us when he heard about the Good Friday Agreement when he was five years old.

What had happened to Finn in those intervening years? School happened and it happened to the whole of his generation. But worse, much, much worse than all that… all the way through school, Finn’s generation were promised a pot of gold at the end of the education rainbow. They were told, “If you work hard at school, you’ll get good results then you’ll go to University and then you’ll leave and have a wonderful job and a charmed life.”

They lied. There is no pot of gold. There wasn’t even a rainbow. Finn and his generation have been lied to, cajoled, fiddled with and, ultimately, betrayed.

So… here I am again, alone with my son. He’s unemployed, no course to go to and almost six foot tall. He’s kind, clever and thoughtful. Here’s my year with my son. This is Finn’s generation, the ones who are paying for our mistakes.

Climbing Every Mountain
“A Base Camp for Parents and Caregivers of Adults with Disabilities”

A lovely parent’s feedback after workshops with Inclusive Solutions.

‘Fantastic, brilliant, enlightening, helpful, thought provoking, comforting are just some of the adjectives that just trip of my tongue when I begin writing this. My son is now 7 years old and was diagnosed 3 years ago with ASD/ADHA and with all the professionals and books I’ve read, this is the first time I’ve found a session i.e. something informative which speaks to the core of me – who I am – whom I think I should be and whom I want to be in the life of my son. The session has given me a foundation with which to build, grow and share. It has enabled me as a mother of a disabled child and my husband, dad of a disabled child, to begin a journey of being on the same page. In all our years knowing our son has a condition, these are the only two professionals who got us to agree on what’s acceptable. Alas I am not perfect so I most definitely and sincerely pray we have more of Derrick and Colin to help myself and others to find the correct tools which will aid us in dotting all the i’s and crossing the t’s in the lives of our children and most definitely as families.

Derrick and Colin delivered perfectly and their method of delivery was so good, the impact was just phenomenal. More, more, more is what I say!!

Thank you Seely, for making this so possible and I am praying that we will definitely have more. God bless!!’

Tetla Hunter, parent

Feedback From Sarah Burling About Person Centred Planning Training In Sussex

I just wanted to say how inspired I have been by the couple of day’s training you delivered this week! I am naturally a positive person but your sessions really fed my soul and I think they have given West Sussex a tool by which to deliver so much more for our families My dream is that West Sussex becomes the County of choice for parent carers to want to live in and that the SEND community shows the wider county community how to live together for the good of all. I dream big, but only when I have had time to really process all that I have heard and learnt!

I wanted you to know how much parents appreciated your time with them below are the first two responses that have been posted on the Local Offer:

Yesterday (June 2nd, 2014), my wife and I had the good fortune to attend the Person Centred Planning event in Horsham, arranged by West Sussex Parent Carers Forum (WSPCF) and presented by Inclusive Solutions. Our attention was drawn to this by the WSCC Short Breaks Team and also by QEII, my step-son’s school.

My step-son has cerebral palsy and associated learning difficulties. One of the problems we find as parent carers is that we are consistently failing to find solutions to some of the key problems he faces that are going to directly affect his future, despite excellent support from his school / college, the efforts of WSCC service providers, and facilities offered by other independent / charitable service providers within the local community.

We found the Person Centred Planning presentation inspirational and left the session bubbling with hope of finding solutions to those key problems using this process. We are under no illusion that the journey will be easy, but are able to feel some optimism that, with appropriately directed effort, changes for the better can be brought about.

We’d like to thank Colin and Derek, of Inclusive Solutions, for the excellence of the programme. It was all made so easy to understand and, despite the serious nature of the content, chock full of good humour and good will.

Finally a special thanks to WSPCF for making this presentation happen! Great organisation and a really warm welcome.

I went on an inspirational training course today organised by West Sussex Parent Carer Forum, led by Inclusive Solutions. We were welcomed with smiling faces & a tea or coffee was brought to us, such a treat. We learnt about Person Centred Planning, focusing on ordinary needs not special needs, and how we could use the MAPS creative planning tool, to create a shared vision of a positive future, a good life for individuals and families. Every parent and every professional who works with children would benefit from attending this course. Inclusive solutions have lots of great information on their website: https://inclusive-solutions.com/maps/ Thank you so much for organising this training.

These have been posted on the Local Offer so are in the public domain – as such I would suggest that you can use this in any of your publicity! I have already followed up with a number of other parents to get them to do likewise. I am so pleased that you will be back in County again and I look forward to a long and productive working relationship. You are both great and I hope that I can learn more from you.

Parent Confronts David Cameron about his Position on Inclusion

Jonathan Bartley, confronted the Conservative leader with his son Samuel as he left an event in South London. Mr Bartley voiced his concern about Tory plans to “end the bias towards the inclusion of children with special needs in mainstream schools”.

Please see video link here to watch the full interview.

Mr Bartley told Mr Cameron about the two-year struggle he had faced to get seven-year-old Samuel into his local mainstream school, and said the existing system was already biased against disabled children being educated alongside their able-bodied peers.

Mr Cameron insisted that, as the parent of a disabled child himself, he was “passionate” about helping them get the education that was right for them and would not do anything to make it more difficult for them. But Mr Bartley said: “It is the wrong way to go. You are not representing the needs of children in mainstream education. You want to segregate disabled children.

“You are saying you want to reverse the bias towards the inclusion of children in mainstream schools. At the moment there is a bias against inclusion, not a bias for it, as your manifesto says. You talk about the broken society. It nearly broke up our family getting our son into school.”

“His two sisters go there, it’s our local school, we have had to struggle for two years and in the end the Secretary of State had to intervene. There is a bias against inclusion and you are saying there’s a bias for it.”

Mr Cameron – whose disabled son Ivan died last year – said: “I absolutely promise you that I would never do anything to make it more difficult for children to go to a mainstream school.

“At the moment, people don’t get what they want. You didn’t get what you wanted, I didn’t get what I wanted. We both had to fight. We are going to make it easier by making sure that statements (of special needs) are not provided by local education authorities, they are provided by someone separate”.

The Nihal Armstrong Trust

This is a small charity set up in memory of Nihal Armstrong, who died aged 17, on the eve of his GCSE exams. Nihal had cerebral palsy. They provide children with essential pieces of equipment, communication aids or specific services that their local authority does not provide. A small group of trustees manage the charity. Between them they have a wealth of experience relating to families who care for someone with cerebral palsy. The Trust is keen to make life easier for these families. If you know of someone who is likely to benefit, please tell them about the Trust.

Some History

Since the 1970s, parents of disabled children have been filing lawsuits across the US and elsewhere for their children to be educated in mainstream, ordinary, local schools.

The US parents ultimately prevailed when the Federal government passed special ed law in the mid-1970s. In one of those lawsuits (PARC v. Pennsylvania), the attorney for the parents cited the 1954 Supreme Court decision in Brown v. Board of Education, noting the parallels between discrimination of students of African-American heritage and students with disabilities. Here’s a brief excerpt of that Supreme Court decision (modified slightly to remove archaic racial terms that are no longer used):

To separate [children] from others of similar age and qualifications solely because of their race generates a feeling of inferiority as to their status in the community that may affect their hearts and minds in a way unlikely ever to be undone…Segregation…has a detrimental effect upon the [segregated] children…[as it’s] usually interpreted as denoting the inferiority of the [segregated] group. A sense of inferiority affects the motivation of a child to learn. Segregation…has a tendency to retard the educational and mental development of [the segregated] children and to deprive them of…benefits they would receive in an…integrated school system…We conclude that…the doctrine of “separate but equal” has no place. Separate educational facilities are inherently unequal.

Including Samuel

Before his son Samuel was diagnosed with cerebral palsy, photojournalist Dan Habib rarely thought about the inclusion of people with disabilities. Now he thinks about inclusion every day. Shot and produced over four years, Habib’s award-winning documentary film, Including Samuel, honestly chronicles the Habib family’s efforts to include Samuel in every facet of their lives. The film also features four other families with varied inclusion experiences, plus interviews with dozens of teachers, young people, parents and disability rights experts. Find out more here.

A Parents Challenge

At the end of my son’s time at School I can only ask what has almost 8 years of segregated education had to offer him that inclusion in a mainstream school could not?

Through our experience, I can now see all too clearly how much more he himself, his mainstream peers and our society in general, would gain from the experience of inclusion.

I know that my son and I, and I also feel that we have all been diminished by the imposition of segregation. If all pupils through such cynical manipulation of the education system were prevented from having what was legally provided to meet their needs, our society would be in an even sorrier state. However that my son should have experienced this for several years speaks volumes about the rights of a disabled young person in London at the beginning of 21st century.

I hope that in the future, other parents, pupils, teachers and education staff will have the courage, compassion, imagination and creativity, to resist the bullying and lack of accountability and instead responsibly unite and cooperate with otherwise segregated and excluded young people to allow all our lives to be enriched through the experience of inclusion. Not begrudgingly, reluctantly or as someone’s job, just as all of our right to be in an inclusive society.

As for my son…unlike the isolated, withdrawn individual he has been described as, by his school head teacher and Lambeth education, finally he will begin to have more opportunities to be truly appreciated by his wider community for the fun-loving, out-going person that he is and that all those who truly care, love and know him well, know him to be.

Sadly and finally, this is the end of his formal education of a sort, and the beginning of his adulthood.

I celebrate with all who have helped him as many have – you know who you are. That he has benefited from his time at school means he has been helped and assisted by you and your efforts. I hope that my son in some way makes you as proud of your efforts as he does me. He is a constant joy and inspiration to me and I hope he has also inspired you and/or brought you joy.

Ross’ Story: A great alliance between a Parent and Teacher in Scotland

I first met the Mitchell family in March 2000, when Euan – Jaynie & Willie’s elder son – was due to start school. As part of our induction programme, we visit the children and their families in the secure environment of their own home, and an interesting visit, it was, too! The purpose of the visit was to meet Euan, and give him the chance to meet me – which is exactly what happened. Upon leaving the house, I did what I always do, and that was to jot down a few first impressions about the child, and in Euan’s case, I wrote, ‘bright, articulate & confident.’ However, I then did something I don’t normally do and that was make a comment about the sibling – ‘have never seen a 3 year-old do a jigsaw like that!’ In the short space of time that we had been at the Mitchell home, I had seen Ross do an alphabet jigsaw back-to-front, upside down, and face down! Jaynie had obviously seen me watching Ross and told me about the fascination he had with letters, numbers and patterns, and that he had been diagnosed as having autism. This meant little to me – not little in that it didn’t matter, but I knew very little about autism. None of the training I had had at Moray House in the 1980’s mentioned autism, and, at the time, the term ‘social inclusion’ was unheard of. But, as I’ve mentioned, it was Euan I was there to see – and a lot of water would be passing under the proverbial bridge before then. Anyway, thought I, in my ignorance – and you’ll be hearing a lot about that, I assure you! – Surely Ross couldn’t possibly cope in mainstream!! Read More.

Daring to Dream

By Jaynie Mitchell

I would like to talk today about Partners in Policymaking and what effect it has had on changing my family’s lives.

For those of you who have not heard of it, Partners in Policymaking is a leadership course that runs over 8 months on residential weekends. The idea for the course first came from America, where they realised before us, surprise, surprise, that parents of children with disabilities, and people with disabilities, should play a major part in how services are designed and delivered. And how we live our lives.

I was the person on the first day that stood up and said I was fed up with every one banging on about inclusion – it couldn’t work for Ross. 

Dear Little One…

Parents for Inclusion have created this wonderful letter which is being piloted in certain London Hospitals when any new child is born who is disabled. Contact Parents for Inclusion if you can create opportunities in your own locality for the use of such a letter. The letter is read to the new baby in celebration and welcome for new life! Download Dear Little One letter here.

Parents, and Alliance for Changes

by Alan Tyne, 2003

‘Parents and disabled people have always known in their hearts they must be the change they want to see in the world. But they need not do this alone. Wise alliances give us the courage and the strength to be and to do what we know we can. Wise allies do not bind our imagination, they free it so that we can see the world as it could be.’

Assessing the situation…where are we?

I don’t know where we are (is it a place?) because it keeps changing. I’ll start small, which is what I do know. And what I do know is this: you never really know which of your efforts will pay off and in what way. The frustration and the beauty is in watching work that you did years ago that you thought had no impact, have a profound impact in ways you never could have predicted. This is true of both past and present actions. So I just keep going following 3 rules/ ways of acting:

1. Keep the dream in front of you
2. Never scuba dive alone
3. Take the kamikaze approach

If you follow these (care of Jack and Marsha and host of others) I feel you can’t go wrong and you might even have some fun along the way! Here are my examples for anyone who cares to read them:

Circles

Last week: we were very honoured to have Colin Newton and Derek Wilson in Ottawa for a series of workshops and I think I bullied them into coming to my daughter’s school to do the set up for a circle of friends. This is a high school setting (grade 8) and I hadn’t pushed the school on the circle because I knew they weren’t ready for it and I had other battles to fight. This time I presented it in such a way that they would look absolutely absurd if they refused (we have experts coming all the way from the UK to set it up, the parent (that’s me) has found a volunteer to run it…hence no staff time eaten up, and key admin at the upper board level were keen to see it happen) So it has started. And as I had imagined (although no one on staff at school would believe me) ‘volunteers’ to be a part of Jan’s circle (or the ‘J Squad’ as it is now known) were NOT a problem. At their first meeting they decided the TA was too interfering and they came up with a plan to ease her obvious presence and replace it with their own, at the second meeting they realized they actually ended up doing Jan’s work for her (so keen were they to be there) and so they have now asked each teacher to make sure they list the work to be done in class (for all students) on the board and they will keep each other on track without doing the work for one another. This was a giggle. Here’s the picture: Jan is in science class working madly away on her alphasmart with a circle of about 6 kids around her. She is in heaven! The teaching assistant walks in and asks if Jan finished her work – sure said Jan, Gary wrote the definitions for me and Tia labeled the diagram. And what…said the TA, are you doing? Writing. And what does that have to do with science? Another girl pipes up: It’s called ‘Love in the Lab’. Great giggles. So, it’s not exactly where we want it to be but it has great potential and the kids are amazing…

Whims

Colin and Derek were here because of whim. A great whim that turned into an amazing opportunity. I knew they were coming to the east coast, asked if we could bring them up to Ottawa, our association said we had the money to do it and agreed we needed to provide some support to the teachers and professionals (the stories would make you sick, although I’m sure they are the same everywhere). So we brought them in (in a not very organized fashion, but it worked) and gave 1 full day to professionals and saved half a day for parents. Lots of fun, lots of energy and lots of focus on the meaning of inclusion. But we really were flying by the seat of our pants. And I had a partner…my continuing partner in crime Claire. We seem to work well together and dream up all sorts of fun projects that keep us laughing.

Contrary Whim we started a group for young adults with developmental disabilities (my partner in crime and I) to give them a chance to meet each other. We found that both our daughters in schools in separate parts of the city, were very alone…no one else included. So we wanted them to get a chance to meet each other. Wonderful things are happening with that group. One mom ended up changing her whole schools approach and now has all the kids in the segregated class out and included in homerooms and all classes! (just because we got together and shared info and tears), another child who was out of system for years is back in, and this year the group is changing….we’ll start out the same and then move to a broader “youth” group. We’re just kind of going with the flow and the flow keeps pushing good people our way.

Lost Cause Long Term Reward

Having worked with my daughter’s peers in elementary school (circle of friends and all that) and having watched it all fall apart in grade 6, I watched in wonder as all the kids came back together to support my daughter (in their own way and of their own volition) through her first very traumatic weeks and months of grade 7 in a high school setting. Who would have thunk!!!! And so. I think that systems won’t ever offer what we want. But people will. Every chance you get to connect in even one small way, will pay off. Really. I can bang my head against the system (and have!!!) over and over again and all I get is a headache. But when I deal with the people and look for changes in them (and find the ones we can work with) I find there are so many little celebrations that make it worth while. The same way we want the system to be person-centered (good luck); we ourselves need to take a person-centered approach. I have to admit, there are many that I just write off and move on. But there are so many people in the ‘system’ that you will surely find one or two who can work with you to engage in transformation that has an impact on all our kids. And I mean all. Not just my daughter or other young people with labels, but the other kids in her class and her school too. Each time I reach out into the school populations I find kids (or they find me somehow) who teach me so much. They are just waiting for opportunities to thrive and grow and have an impact and boy, does Jan ever give them that opportunity. So, that’s why I personally only engage in what I call kamikaze projects. Find the right other person or group of people and create something that fits your community, whatever that might be, whatever state you are presently in. We are all at different stages along the inclusion continuum.

Just recognize where you are and where you are going and the next step will present itself. Get excited about what just a small group can do and it will grow. Now I’m not saying this is a great approach, but it works for me. I don’t work well from anger. I work best from joy and wonderment. So that is the route I find myself choosing more and more. It is very far from excellent and we are very far from the dream and we have many battles. But if we have something to look forward to, something that’s working, then the rest is not so life-threateningly important. I’ve also made sure that my daughter’s life is not so dependent on school for her sense of self and esteem. Hard to do with a 13 year old, but we have built in many other ways of being in the community and being in relationships with her peers.

How To Lose Your Mind but Mend Your Heart

(LYM and MYH identified as such, just in case you get confused)

Step 1

• (LYM):

  Only ask your school (who have made their negative opinion of circles of friends very clear to you) to start a circle when you can make them feel cornered into doing it because you have brought in 2 renowned experts from overseas to start it, will provide a facilitator from outside so no staff time will be wasted, and have sold the higher powers that be (one level up from the school) on the idea.

• MYH:

  Listen to the students observations about your child and try not to weep as you realize that they see, feel and intuit more about your child than the rest of the school put together.

Step 2

• (LYM):

  Make sure you have at least one major crisis within the first 3 weeks of meeting (something that involves, oh, let’s say… private body parts or hormones or safety… pick one, any one, just make sure it is particularly scurrilous).

• MYH:

  It suddenly hits you that none of this would ever have been revealed if the circle weren’t in place, and you are grateful, grateful, grateful for their presence and their sense of justice and caring.

Step 3

• (LYM):

  Ensure that all staff working with your child believe that the only relationship any peer can have with him (because of his disability, hence his inherent inequality) is one of ‘helping’, hence their support and facilitation of the circle consists of assigning duties like “on Tuesday you must eat lunch with X and then go to the library and play cards”.

• MYH:

  The kids hang on in spite of this.

Step 4

• (LYM):

  Go way beyond the boundaries (especially since you are a parent with no credentials or experience in the reality of what life is like in schools) and insist that staff are NOT to assign duties, but consult with the circle. You have just crossed boundary number 3 (or is is 4?) by suggesting that they consult the students (gasp) and the facilitator who is only a measly college student with no title to his name, an outsider, a renegade, an irresponsible young guy with an idealistic vision that does not in any way equate to the hard-nosed reality of what education is all about.

• MYH:

  The facilitator hangs on in spite of this.

Step 5

• • (LYM):

    I forgot, back between steps 1 and 2, make sure you have a cross-section of students, including one high honours student, one who has been suspended at least once and another at the low end of the ‘performance scale’ in terms of academics (but who is the leader and shaker in all things to do with dances, school events, sense of humour and creativity) – just so the school can shake their head at the inappropriateness of the students involved in the circle. But what about the chess club?

  • MYH:

    Laugh at the circle’s perceptions and ideas, all things you’ve thought but never said out loud (the assistant is tooooo bossy!), get teary-eyed when said suspended student is the one who always makes sure your child is in the thick of things and goes that extra mile to reach out and talk to him, nod in understanding when they explain why your child was kicked out of yearbook (they roll their eyes, yearbook! not a good idea, yearbook is a very snobby group, he doesn’t want to join THAT club!).

Step 6

• • • (LYM):

      Be a good listener when the school tells you that they still don’t believe that circles work and they see no impact.

    • MYH:

      Watch your child blossom in confidence (and lippiness!), run out the door eagerly on Tuesday mornings (the circle meets on Tuesdays) to get to school, and start to eat lunch with others. Act surprised when the school tells you that 2 other students want to find out more about the circle and how they can join.

Labels

By Nancy Huggett

My daughter, Jessie, is 14 years old. She loves french fries, short skirts, Hilary Duff movies, boys, writing, dancing, listening to books on tape and baseball. She dislikes all vegetables, cleaning her room, detentions and being forced to walk long distances because her mother thinks it would be healthy for her and the environment. She also has Down syndrome and has been variously labeled as having an intellectual disability, a developmental disability, and special needs. But this so-called “disability” is only one small part of who she is. She is not her diagnosis; her potential and her gifts cannot be defined by her Down syndrome or what ever label you might choose to attach to her. In fact, among friends and family, and in typical settings (including school), her label is irrelevant! What is relevant is her own unique combination of talents, skills and learning styles that describe who she is, where she wants to go and what she has to offer her friends and community. Read on.

or try

Challenging Behaviour and Autistic Children

Children who exhibit so called ‘Challenging behaviour’, often have parents that could also be considered to be a ‘challenge’. Perhaps this misconception arises from our deep desire to improve our child’s quality of life. I myself am the mother and the sister of a couple of ‘autistics’ and I have to confess, I know that I have been seen to be ‘awkward’ (in a non-violent way) on many occasions. I have met many parents of autistic children over the years and I’d like to give you my classification of the parents of autistic children. It is conventional to classify autistic children according to the impairments of social interaction and describe their varieties by grouping them into four main types: the aloof group, the passive group, the ‘active but odd’ group, the over-formal, stilted group (Wing, 1996). I will try to do the same with the parents, using almost the same headings, though the subdivision the parents fall under does not necessarily coincide with that of their child. Besides, like their children, with time, the parents can shift from one subgroup to another.

Depending on what stage they are in, and how they have come to cope with their situation, they fall into four categories:

The aloof group

These parents believe the ‘specialists’ when they say that their child is hopeless. They may or may not institutionalise their child, as advised. If the child is kept at home, the family tries to ‘hide’ him/her from people, feeling ashamed of having such a disabled child but still loving him. They feel helpless to change anything in their life. They are typically very sensitive to the stares of people while out with the child in public and always end up with tears of shame and bitterness. They avoid social contact and live in their own small isolated world, and the child is cut off from the world not only mentally but also physically.

The passive group

These parents are not completely cut off from other parents. They are sure there must be a pill or a treatment that would solve all their problems and, sooner or later, it will be offered to them. They accept all the offers they are given, they are very obedient, and often the child is traumatised when the parents agree to place him into hospital and treat him with medications and injections prescribed by the ‘specialists’. These parents have no doubt that ‘the specialists know better’ and do what they are told.

The ‘active but odd’ group

These parents are very active. They look for any information in their attempt to find a ‘cure’ for their child’s autism. They travel to different cities or even to different countries just to consult the specialist they have heard of or to try the treatment they have read about, irrespective of the effects (or ill-effects) (e.g., holding therapy might be tried despite the child’s hyper-tactility). They are sure they do their best for their child, and are ready to spend all their money on the most expensive treatments. Their love is great, but perhaps ‘blind’ as well. Sometimes the children benefit from it, sometimes they are harmed.

The professional group

(The name does not coincide with that for the children.) Fortunately, this is a numerous group, and growing. These parents decide to change their focus and become ‘professional parents’ for their child. They start with the assumption that specialists might be, and often are wrong, after all, they cannot know everything. They know that research is being carried out, and what is considered to be right today may turn out to be wrong tomorrow; and that nobody knows their child better than they do. Like the third group, these parents actively seek information, but are reluctant to try everything. They are akin to permanent students, with a desire to learn about all the theories and approaches to find the right ones for their own child. They are very critical and express doubts about everything, but readily embrace the things that really matter and really work. They question and want explanations, rather than accepting information at ‘face value’. Because they know it is impossible to help their child without helping others, they unite their efforts and work together. They will openly cry in meetings because they feel their child’s pain and future disappointments. It is these parents that are often more supportive to one another, constantly aim to build a brighter future for their children and young people. They are, or they become incredibly creative in their approach to their ‘nuclear family’s’ life, both inside and outside of their home. They see and use the diagnosis/label of an ‘Autistic Spectrum Disorder’ to be the enabling ‘signpost’ that it should be, and not the disabling label it has become. They seek cooperation with open-minded professionals, specialists and scientists, in doing so, they form great mutual respect for those who really care, and continue to fight against ignorance and the incompetence of bureaucrats. They are prepared to test new laws and redefine thinking within the many systems designed to support and educate their children and young people. They often see the beauty, gifts and value the uniqueness within every person, not just those who are described as being ‘autistic’. Their passion, efforts, and activities give us all hope and keep us moving forward.

I know which group sub group I belong to (and for a very long time too)!!!

Sharon Scoffings. (Professional Parent: Nottingham City, UK). Challenging, and proud of it!!!

Look to the North Star
-:∫:-
*¸..· ´ ¨ ¨)) -:∫:-
¸.·´ .·´¨ ¨))
((¸¸.·´ ..·´ -:∫:-
-:∫:- ((¸¸.·´ * from Sharon.

Why It’s Worth It

Inclusive Education in Scotland A Parents’ Perspective

by Ceri Mollard

The tone of righteous indignation that runs through this fine book is set from the start in the words of Nina McDonald, a disabled pupil at Rothesay Primary on the Isle of Bute, she says: When I heard that (some children with disabilities don’t get to go to their local school because they are different), I was shocked and my sister was shocked too. Why can’t everyone to the local school with their friends and sisters and brothers. Why can they not?
Why indeed?

This beautifully produced book spends the ensuing 156 pages reporting on the struggles of 15 sets of parents within the Scottish education system to achieve a fully inclusive school experience for their sons and daughters. All the parents interviewed by Ceri Mollard had participated in ‘Partners in Policymaking’ – a leadership development course for disabled people and for parents of disabled children under 18. So we are hearing the radicalised parent voice in this book – voices with a clear vision and high expectations of the system. All too easily dismissed as ‘the lunatic fringe’ – these are the family narratives that will set the tone for change and drive inclusive practice forward. All of the young people involved are participating in their local mainstream schools. When we remember that as little as 15 years ago this would have been deemed impossible and inappropriate – given the levels and types of impairments that many of the children have – then we get some sense of the important changes that are taking place in developing inclusive education across Scotland and beyond.

Ceri Mollard has grouped parents’ experiences in this arena into 7 key themes:
Making an informed choice about your child’s education: access to information and advice; Planning and support for inclusion: a two way process; Parents’ experiences of special schools; Assessment; When children are legally excluded; The benefits of inclusion; Conclusions. There is also a section on the SEN Policy context within Scotland and a useful listing of books, resources, key contacts and websites. Each theme is brought to life with parent’s in-depth reflections on their encounters with different aspects of the special needs system; sometimes angry, often baffled in the face of administrative double-speak, the learnings from parent’s experiences are ably summarised for each theme by Ceri Mollard. I especially enjoyed the section entitled ‘The benefits of inclusion’ and one anecdote in particular from Jaqui Reid, mother of Stephen, who relates how his experience of inclusion has meant he has begun to soak up ‘youth culture’, ‘We now have to flip his fringe straight up and then it has to be divided into wee horns and he won’t leave for school unless it’s like that’.

Throughout the testimonies the gap between parents’ hopes and aspirations for their disabled child and what education professionals see as appropriate and achievable is always in evidence. While some may view these parent’s expectations of the ‘System’ as ‘unreasonable’ – we do well to remember that unreasonableness is what we expect of parents when they are acting on behalf of their child. It comes along with unconditional love and is part of the precious bond that all respect and acknowledge. The ‘System’ on the other hand is charged to do what is ‘reasonable’ (e.g. to make ‘reasonable adjustments’) and to be accountable in its use of public monies. Our attempts to bridge this gap are what drive Policy forward towards a more inclusive school system. And without the parent voices that expect more, there would be little, if any, significant change to the way we do things. Indeed, there never was a better or more appropriate excuse to quote again from Margaret Mead:

Never doubt that a small group of committed citizens can change the world – Indeed it is the only thing that ever has…

So, congratulations to Ceri Mollard and SHS for creating such a beautiful vehicle for these voices to be heard. Whether you are an SEN administrator or a parent of a disabled child – you gotta read this book!

Some thoughts from a mum with a radical perspective

I have been reading your site and truely believe that the parents of children who have disabilities are quite remarkable people, displaying courage strength and determination to change this world and make it more inclusive. To truely value diversity,I believe that we must be aware of all potential perspectives and value those proffessionals who study those perspectives. That does not mean that our perspectives are not valuable or worthy, in fact if we are the oppressed in the situation, then this must mean that people are threatened enough by us to feel the need to oppress, therefore, our point of view has shaken the congruence of their training. Diversity I believe is the fundamental aspect of survival on this planet and in line with this perspective, I believe it to be necesary in all aspects of our interactions. If we believe that ‘Diversity’ is the one and only fundamental function of our planet, our existance and our sustainability. If this is our core value then nothing can go wrong; children would be included, the planet would be sustainable, life would grow to be fruitful, as we would always be seeking that important aspect of life that is special to each individual, each region, each country etc. We would always be supporting each other to find the thing that we can use to collectively grow.

Off my soap box for a moment and back to the nitty gritty; If we find ourselves in a meeting and everyone is from Health and Education and of the perspective that ‘this child must be fixed’, it is helpful to contemplate the other options open to us to tackle this and create a balance / diversity of ideas and perspectives.

Children’s Diversity Tool

I found this tool and have adapted it specifically for use in such situations to point out to those people that whilst they have trained in a certain discipline and I value their input many other perspectives are valuable and neccessary in the world and I myself have studied for many years in the other disciplines, as many parents have. This has helped me to refocus the group on a balance of addressing need.

I wondered if this might be a useful tool for other parents? I must admit that often the ‘professionals’ need to have this diagram explained in detail to them, so deeply are they entrenched in their single perspective.

Cheers!

Deb Barnett

Useful Links

• • • Elaine, a Nottinghamshire mum attended an Inclusive Solutions event: ‘Including Children with autism’ and took notes of the day. You can download a copy here Sensory Super – Sensitivities.
    • Are you a parent in the UK and involved in a statement review? Download this exemplary letter written by a parent in preparation for a Statement Review and making a clear case for inclusion. The letter worked! Feel free to download, amend and reuse……

    • PACES of Litchfield are based in New Hampshire, USA and they have a very useful web site. We like their style and their mission! See below…….

      Our Mission…..

      To provide support and information to enable parents to make informed decisions regarding their rights and the rights of their children, until each and every child receives the education they deserve and are entitled to.

      We are parents with children who have learning differences. Our parents have personal experience, training and information concerning the educational process.PACES of Litchfield is a positive, solution oriented parent committee that is committed to establishing a collegial atmosphere between parents and faculty involved in the special education process.Our membership is open to parents of children with educational needs and anyone interested in their child’s education.