Welcome to Holland!

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland. 

Written by Emily Perl Kingsley 

CHALLENGE -- WEEK 1

For this week’s challenge we’d like to invite you to have your own conversations with people within your community about inclusive education. Find out how they feel about including children with disabilities in schools and discuss your country’s policies (from the previous step) with them. Talking to people is your first action towards implementing inclusion!

Former headteacher:

I have definite opinions on children with disabilities in mainstream classrooms. First is that children should whenever possible be given the opportunity to have as normal life as possible with their peers. This is their right! Also children without disabilities should be given the chance to develop friendships and learn to care for those friends who have disabilities. My experience in this area makes me aware that when given the opportunity to form these friendships enriches all the children involved. I have found that the children with disabilities in a normal classroom are very protected by their classmates and visiting adults are often confronted by these protectors when they consider their friends are not being given the treatment they are used to!
When I was teaching in a primary school in England there was a Special school a short distance away where the children had severe disabilities. We had the chance to bring the children into the infant school one afternoon a week. It wasn't viable to have them in full time but the time they spent in the school was very valuable on both sides and for the staff as well.

Former Headteacher 2:

When I left Shetland I worked in a special school and part of my remit was to help pupils from this school with the transition to secondary. This soon showed me that in spite of all the many years we have talked about "Inclusion" unless the child with additional needs is accompanied by something visible....I mean a wheelchair, a white stick, even a visible syndrome like Downs, still after all this time and all the enlightenment of those like me with a Diploma in Special Educational Needs -if it's not visible then it is very difficult to persuade the classroom teacher that the child isn't being lazy or disruptive. Young folk with learning difficulties have a hard time of things on a daily basis.

Child Care Worker:

I think all children should be included in mainstream schools, while I understand that it's not always easy to include them I don't think that's a good enough reason for them to be excluded. I do like specialist schools or departments as they can provide better resources to meet the needs of those with additional needs, I believe that pupils in these schools/departments should also spend some time in a mainstream classroom with their peers. I think it's a benefit to both the child with additional needs as it can help them learn to cope in different situations but also to other children as they can see that those with additional needs are part of the community and are people too.

Parent (rural island)

My daughter both a special school and main stream. When we moved there was no special school so she went to the mainstream one. The same school who took an autistic child and brought a dog pen for him for playtime ( http://www.dailymail.co.uk/news/article-1325796/Cage-autistic-pupil-removed-Nicolson-Institute-Stornoway.html ), My daughter went there went there and they sent her to the college as fast as they could as they didn't have a clue with special needs children. (QUESTION - So in your case the special school was the much better option?) Totally, higher number of teachers, greater empathy ,had plans for individual children catered to their needs. One size doesn't fit all even within disabilities there are different needs and abilities.

Learning Support Assistant:

The secondary school I worked at had all the children in the area with disabilities there as one child from the catchment area went there and a lift loo etc were installed ,so they sent children from outside the catchment though same CC, though I was well paid I am of the opinion they disrupted lessons by arriving late ,leaving early, as one lift taking one wheelchair and 5 wheelchair bound children, caused resentment by allowed to front of dinner queue etc all taken to the school by taxis, changed venues of trips etc as no wheelchair access though shouldn't happen now, things like experiments in science woodworking,metal work I had to do for my child (Muscular dystrophy there was another child with this and one with muscular atrophy the 2 girls had use of upper body) In college there was a girl doing a teaching assistant course, she could neither read nor write but the college gets paid extra for disabled student she gave up after a month, a lady doing an art course managed to walk up 3 flights of stairs after having an assistant for 3 months this same lady had an electric wheelchair and lived in subsidised housing frown emoticon . But I also worked with a child with behavioural issues from being abused, I was with him in class and playtimes and another person at lunchtimes as he was often wrongly blamed by other children over arguments in the playground sometimes when he was indoors with me,give a dog a bad name! we had a good relationship and he is still a friend on Facebook . His brother ended up in a youth detention centre , I like to think I helped him wink emoticon hope this helps though may put the cat amongst the pigeons!

Parent (urban area)

I have 2 kids with autism, high functioning in mainstream school. They both get a taxi to school as the school bus is too chaotic. Primary school did not understand autism and made many things horrid and nightmare for my two. Now in secondary there is full understanding leading to a massive difference in both my kids. They can access a base if they need it but require no further support in class except to leave 5 mins early for lunch to miss rush. They both have communication passports which they have created detailing their needs. They created fun ones which the council pass out as exemplars. I also work part time in a complex needs school office and am very interactive with the pupils as part of their IEPs. I also do supply Pupil support assistant there. I can only work part time as 2 ASD kids need lots of research and prework to understand issues then create strategies.

Also local charity called Perth Autism Support kids, siblings and parents with activities, research etc. I encourage all parents to seek out carer discounts wherever. This allows us to afford to create lots of social experiences without breaking the bank.

Secondary school teacher:

I taught several children with autism in mainstream schools and they were no more challenging than non-autistic children (thanks in part (for one of them) to his lovely support worker), just had specific issues that once you got to know, it was easy to incorporate into your teaching style.  I also think that it *can* benefit all the pupils of the class as it exposes them to difference within their 'clan' so possibly makes them into more tolerant people. I observed this during teaching too: One child in one of my classes was a lovely girl, brain damaged at birth due to oxygen starvation, her memory was affected such that she could often not remember things from one lesson to the next, so while she understood some of the work at the time she did it, she could not remember doing it by the next lesson. Her form were fiercely protective of her and would help her when she needed it, she was an attractive force within that class, holding them together, uniting them against anyone who gave her a hard time. She obviously appreciated the support but I don't think the rest of the class realised just how much she gave them by uniting a very disparate group behind her.

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This is so NOT what I saw happening on a charity trip to a country in Eastern Europe last year, a country that has signed up to this convention. Disabled children whose parents cannot transport them to a Children's Centre in the main town simply did not attend school, whether there was one in their local village or not. As someone who works with children with special needs, I realised as I was going around the schools and nurseries distributing warm clothes for winter that I wasn't seeing any of these children. OK, to be completely correct we saw one child with cerebral palsy, he could walk though. We clothed over 1000 children through 5 schools/ nurseries, how many didn't we see because they weren't at school?

The Convention on the Rights of Persons with Disabilities

Article 24

Education
1. States Parties recognize the right of persons with disabilities to education. With a view to realizing this right without discrimination and on the basis of equal opportunity, States Parties shall ensure an inclusive education system at all levels and lifelong learning directed to:
 (a) The full development of human potential and sense of dignity and self-worth, and the strengthening of respect for human rights, fundamental freedoms and human diversity;
 (b) The development by persons with disabilities of their personality, talents and creativity, as well as their mental and physical abilities, to their fullest potential;
 (c) Enabling persons with disabilities to participate effectively in a free society.

2. In realizing this right, States Parties shall ensure that:
 (a) Persons with disabilities are not excluded from the general education system on the basis of disability, and that children with disabilities are not excluded from free and compulsory primary education, or from secondary education, on the basis of disability;
 (b) Persons with disabilities can access an inclusive, quality and free primary education and secondary education on an equal basis with others in the communities in which they live;
 (c) Reasonable accommodation of the individual’s requirements is provided;
 (d) Persons with disabilities receive the support required, within the general education system, to facilitate their effective education;
 (e) Effective individualized support measures are provided in environments that maximize academic and social development, consistent with the goal of full inclusion.

3. States Parties shall enable persons with disabilities to learn life and social development skills to facilitate their full and equal participation in education and as members of the community. To this end, States Parties shall take appropriate measures, including:
 (a) Facilitating the learning of Braille, alternative script, augmentative and alternative modes, means and formats of communication and orientation and mobility skills, and facilitating peer support and mentoring;
 (b) Facilitating the learning of sign language and the promotion of the linguistic identity of the deaf community;
(c) Ensuring that the education of persons, and in particular children, who are blind, deaf or deafblind, is delivered in the most appropriate languages and modes and means of communication for the individual, and in environments which maximize academic and social development.

4. In order to help ensure the realization of this right, States Parties shall take appropriate measures to employ teachers, including teachers with disabilities, who are qualified in sign language and/or Braille, and to train professionals and staff who work at all levels of education. Such training shall incorporate disability awareness and the use of appropriate augmentative and alternative modes, means and formats of communication, educational techniques and materials to support persons with disabilities.

5. States Parties shall ensure that persons with disabilities are able to access general tertiary education, vocational training, adult education and lifelong learning without discrimination and on an equal basis with others. To this end, States Parties shall ensure that reasonable accommodation is provided to persons with disabilities.

Comment on the following questions: When might children with disabilities be best served by attending a special school? When might children with disabilities be best served by attending an inclusive mainstream school?

Having worked in mainstream nursery and primary for 16 years with some time spent in a special unit with a child doing a split placement between her local school and the unit I still find these questions difficult. 

My niece has severe quadriplegic cerebral palsy and went to her local nursery and school on spit placement for some time before moving full time to the unit. A lot of equipment was tied up in both places, in the unit it could be used by other children but at the mainstream school it was for her use only on the days she was in. The school had to put in extra facilities for her, eg nappy changing area for a primary age child. To be honest, I don't think she got a lot out of the mainstream, the other children benefited from being socially aware of a child with severe disabilities, something which I hope will stand them in good stead as they age. The unit has better facilities and a wider range of trained staff. My niece was happy in both settings but use of ICT for her, for example, was more available at the unit. Funding and training are the keys I suppose.

From my own working point of view, most of my time has been spent supporting children with a range of needs in mainstream. ASD, Dyslexia, Global Developmental Delay, Attachment Disorder, undiagnosed motor skills problems, behavioural needs, anxiety, parental split, etc. It is only a tiny school so we know the children very well. It can be hard work, frustrating and often I have felt like banging my head off a wall, but it can be amazingly satisfying to see a child when something 'clicks' for the first time, or they try something they think they can't do - and with practice do it. There are days when I have gone to the staff room to scream and days when I have done my happy dance. Working in mainstream with children with special needs - whatever they are - is not the easy option some of my colleagues in the special unit think it is. They are supported and surrounded by trained staff, I am often on my own although with the support of a busy teacher who has the rest of the school. 'Experts' can be hard to get hold of and working in a rural community - even harder to get them to make an appearance.

I guess I am saying, I would go mainstream when I can. One child I have worked with in mainstream gradually changed to the special unit. It was more able to meet her needs, her need to learn life skills - shopping, money handling, cooking, road safety, independence, etc. in town than in a rural setting.