Don't Presume my Child Goes to a Special School

Yesterday I took my youngest daughter, who is 12, and was born with Down syndrome, to see a new Occupational Therapist for an assessment. With my daughter's access to NDIS (National Disability Insurance Scheme), we are now able to utilise this service, and I am thankful to the government for this.

Our goal for my daughter having OT is to help build and strengthen her fine motor skills so she can be independent with her life skills and be more proficient with her handwriting, which she finds difficult due to the low tone in the muscles in her hands.

The OT was lovely, and I felt a warm connection with her straight away, as did my daughter. As the assessment progressed and a conversation ensued, which included the obligatory questions such as her age, her likes/dislikes - those types of things, one question made me stop in my tracks and triggered me to write this blog post.

The question was, 'What school does she attend?'

I answered in my casual way, ' Said High.' (I am leaving out the name for my daughter's privacy). My daughter wss wearing her uniform so I didn't think it needed much more emphasis.

The OT's response was interesting. She replied, 'I used to work at A Said Special School (name changed for privacy purposes) and I went to meetings there (at your school).'

The penny dropped pretty quickly. She presumed the school I had given was a special school, not the local regular high school.

I quickly clarified it was the mainstream high school and I was against special schools. She then asked how my daughter was going and we had a good chat about how well she is doing.

Now I am writing about this not to criticise the OT, because as I said she is lovely and we will be going back to her. I am writing this blog post because I think her response is the world's commonly held presumption... that children with Down syndrome go to a special school.

Now this wouldn't be a commonly held presumption if it wasn't so.

In a mainstream high school of approximately 1300 students, my daughter is the only child with Down syndrome. She was also the first child with DS to go through her primary school. It is not the norm. And why not?

Why is there a strongly held belief in Australia that students with Down syndrome will receive a better education in a segregated setting with other intellectually impaired students? Where will the stimulation come from? Where will they experience higher order thinking and thought provoking conversations? Where will they see gifted and talented students? Where will they be exposed to role modelling of what is expected by society? When will they be able to experience the whole range of activities that are provided in a regular school?

When Jessica was about to enrol in Prep we were shown through the early learning classrooms of the special school as they tried to sell it to us as the place our daughter should attend. Yes we could see the students were accessing the curriculum, and one of the little girls was learning to read. But I also saw things I didn't want my daughter to spend day in and day out with. I saw children with poor communication and behaviour, and a general setting that felt like a prison, with multiple locked gates and doors, and fences everywhere.

She was 4 years old at the time and we could already tell that our daughter modelled her behaviour on what the other children were doing.

We had seen a difference in the two settings she was attending. In the local C&K mainstream kindy, she was writing her name, speaking, using the toilet, trying to read books and do what the other children were doing. In the special school kindy she was only using sign language as that's what the others were doing, she was acting like she was helpless and barely used the toilet.

In our hearts we knew the mainstream school would be the best place for her, but there was so much pressure to keep sending her to the special school - and that's where children with Down syndrome went... why would we buck the system?

I am thankful to my school principal, as I wanted to send her to the school I was teaching at, who was not a gate keeper and was happy to have our daughter. If he'd been against having her, I might have been swayed to stay at the special school as this was before I became educated on inclusive education.

My husband often drives past the local special school when it is play time and he has told me about the litttle boy who stands at the fence line watching the cars go past, all on his own, and of a little girl who again sits on her own, under a tree, looking very sad. Do these children want to be there or would they rather be in a regular school with regular children being stimulated by the variety of activities that happen there?

One person who has never presumed my daughter goes to a special school is her paediatrician at the hospital we attend. He has always been excited to hear how she is going, and I love that. I hope he takes that knowledge that my daughter is doing well and passes it on to his colleagues and student doctors.

I read an article today on Facebook about  a lady, Ann Greenberg, who lived in New York in the 1940s. Her child, Jerry, was denied access to a regular school due to seizures and a developmental delay. She had a friend whose baby had Down syndrome and was told to place the baby face down in the pram so no one could see it. These ladies went on to set up their own school which grew larger and larger over time. Essentially they set up a special school system though not identified as such, and in 1953 came under the banner of the National Association for Retarded Children (NARC). Of course the parents in doing this, wanted their children to be educated, and I commend them for that. But because it happened in the 1950s doesn't mean it still has to be happening now.

https://www.ahrcnyc.org/wp-content/uploads/2015/10/History_Of_AHRC.pdf

I conducted a Google search to find out what is being said about special schools to parents, because there are plenty of parents who want their children in these segregated centres. This reality is seen in the building of new special schools, one of which is in my region.

I think these points I found listed on a UK site sum up the basic benefits that are stated by most:

• Class sizes are smaller, even exceeding one-to-one help in some cases.
• Work is geared to the child’s individual needs and linked carefully to their own targets.
• Teaching is matched closely to learning styles and strengths.
• Children have a peer group with similar needs, so they don’t feel different and find it easier to make friends.
• Staff generally have an excellent understanding of the needs of the children and how best to teach them.
• Progress is very carefully tracked and monitored.
• There are strong links with parents.

Like their mainstream counterparts, special schools must teach the national curriculum and use its assessment procedures, and they have broadly the same duties and responsibilities to children in their care as mainstream schools.

https://www.goodschoolsguide.co.uk/special-educational-needs/schools/special-schools

This sounds pretty convincing doesn't it, particularly if you do not know the research into segregation and how detrimental it can be for the child, and the overwhelming research that says children do best in a regular setting?

 http://www.include.com.au/resources/

Also when I look at these so called benefits, I say 'that is what happens in a mainstream setting', apart from point 1 where there are 6 or below in a class in a special school, or point 4 where the students are of a similar intellectual level.

I wish there were more parents saying they don't want their child in a class of 6, or to just be with students of their intellectual level. It is an illusion that this is a better system.

My daughter will always be interacting with higher achievers so she can hear vocabulary and topics and discussions that will stimulate her brain, and make her brain construct new neural pathways and make new connections in her brain.

The other 4 points listed above happen in mainstream high school. I have constant communication with my daughter's school, I know her work is being monitored just like every other student's is, the pedagogy of teaching and learning is a constant focus in the school and my daughter has an ICP (Individual Curriculum Plan) which links to the curriculum at the level she is at.

With 'diversity' being a buzzword at the moment, it is important for those of us who truly believe in inclusive education, to keep on advocating for our children, and educating  parents, health professionals and politicians, so the children in future generations will have their rightful place in mainstream schools and there will be no presumptions about a child attending a special school, because special schools won't exist.

To find out more about Jenny, visit www.jennywoolsey.com

Inclusive Education

I is for Inclusive Education

Something that I am passionate about is inclusive education, due to my youngest daughter having Down syndrome. These two words, 'inclusive education' though are often misused and there is a lot of confusion over what they actually mean. So, it is my intention with this blog post, to set things straight.

What is inclusive education?
 

1) First of all I am talking about students with disabilities being in mainstream schools. Being in a special school is not inclusive education.

2) Students are in the classroom with the other students,and for the same amount of time as the other students. They are provided with the supports they need to access the same activities that the other students do. Their school work is modified if necessary and if so, they are doing the same work as their peers but at their level. They do not have a teacher aide shadowing them. 

This is a succinct definition:

Inclusion is being physically present and fully participating in the same classroom as peers for the same proportion of time; socially belonging and immersed in the same curriculum. 

It requires the provision of necessary supports and adjustments so the student can learn, contribute and participate socially alongside one’s peers.

Students are under the same school and class rules, although it needs to be stressed that it may take more time and attention to teach some children these rules. 

Inclusive education is not:

* Special classes
* A full-time teacher aide
* Being isolated in the classroom
*  The student is working in parallel rather than the curriculum being modified
* Being included in class but not in the life of the school (playground, excursions, camps, extra-curricular)
* Being enrolled but not challenged to learn, participate and contribute

 Let's look at the following diagram:

Exclusion:  Students with disabilities are in separate schools.

Segregation: Students with disabilities are in a mainstream school but are kept in separate units away from the rest of the students.

Integration: Students with disabilities are in mainstream schools, in classrooms but are expected to do the same work as the other children even if they are not able to, they do not have any supports, and they may be excluded or separated from the other students for some activities.

Inclusion: What we want!

 Why do we want inclusion for children with disabilities?

        1) All children are learners and all children are unique. What is ‘normal’?

2) School is the gateway to society and inclusive communities start with inclusive neighbourhood schools that value diversity and respect the right of all students to be welcomed and to belong. 

3) Inclusion means going to school with siblings. It’s about having an ordinary life.

4) Regular schools offer a wide range of experiences.

5) Inclusion is a RIGHT:

* Article 24 of the United Nations Convention of the Rights of Persons with Disabilities recognises the right to an inclusive education as a human right of people with disability.

* In Australia, the Disability Discrimination Act 1992 and the Disability Standards for Education 2005 ensure equal access for people with a disability to education.

* The Australian Professional Standards for Teachers 1.5 & 1.6 give the instructions that teachers must differentiate teaching to meet the specific learning needs of students across the full range of abilities. 

What research is there on inclusive education? 

 

The case for inclusive education over ‘special education’ models (special schools or education support units), is overwhelming. Over 40 years of research, and hundreds of studies have compared education outcomes for students with a disability in segregated special education settings to regular education environments. They have all ruled in favour of inclusive schools. The benefits continue into secondary education.

In Australia, Dr Bob Jackson has done a lot of research into the benefits of inclusive education for children with disabilities.

http://www.include.com.au/wp-content/uploads/2011/11/Inclusion_Seg.pdf

This diagram shows two pathways. The horizonal is the life of a child who goes to mainstream school and progresses on with a regular ordinary life. The diagonal line shows the direction life takes for many students who go through special education.

Research has also shown that inclusion leads to:

* Greater access to the general education curriculum

* More time ‘on task’ and a greater motivation to learn

* Greater progress academically, particularly with literacy skills

* Increased communication skills

* Improved social skills and behaviour

* More friendships

* A change in the school culture to a more inclusive one to the benefit of a great many students, not just those with a disability.

But what about the effects on non-disabled students and their learning?

 

* This is a common argument used by many to stop children with disabilities from being in the classroom. But this is a poor argument as the research has shown that inclusion is better for ALL students. Having disabled children in a school, develops more positive attitudes towards difference, better social skills and awareness, more caring friendships, less disruptive behaviour and more developed personal values and ethics. All students in the school learn the skills they need to live full lives as part of their communities, and to build the communities of the future. 

* Disabled peers do not take away from teacher instruction time and there is no detrimental effect on the achievement of the child’s peers. Many studies have shown a positive impact due to peer tutoring. The behaviour of the other students is unaffected, and differentiation of the curriculum leads to better teaching for the whole class and more effective classroom management strategies.  

It's about the mindset of educators

One of the excuses I received from a teacher not wanting my daughter in her class was, there would be too much preparation and she didn't have the time. This turned out to be false and later in the year, this particular teacher changed her mindset towards inclusion and actually embraced it. I like the following meme as it gives great examples of how teachers can look at the children with disabilities who are in their class. 

Advice for Parents

Parents who have children with significant disabilities and are wanting their child to have an inclusive education will more than likely face gatekeepers, barriers, low expectations and prejudices along the way. Even though it is a right, there are many in the education system who do not believe that children with disabilities should be in mainstream school. I have encountered some myself in my journey, and I've had to be an assertive advocate for my daughter. I've also had to maintain my vision for my daughter, and check in often with her teacher to ascertain whether we are still on track. Often schools can seem like secret societies. My advice is to be prepared that challenges will arise at some stage, and gather people around you who can support you.

My daughter is just about to finish her primary school experience and start her journey through high school. I have my vision for her firmly implanted in my mind and in the next little while will be imparting it to her new school. And of course it is the school where her brother and sister go to.  

Some great websites are:

http://allmeansall.org.au/

http://thegoodlife.cru.org.au/getting-started/#education 

http://www.startingwithjulius.org.au/

http://www.theinclusiveclass.com/

https://sipnweb.com/edinclusion-guide/

https://inclusiveschools.org/


For my readers living in Queensland, this is the link to Education Queensland's Inclusive Education page on their website:

https://education.qld.gov.au/students/inclusive-education 

***

For more articles on difference and diversity you can find me on Facebook at:
https://www.facebook.com/JennyWoolseyAuthor/

Wonder

W is for Wonder

There has been a lot of talk lately about the above children's novel, Wonder written by Raquel Jaramillo, under the pen name of R. J. Palacio. It was published on February 14, 2012.

Explanation of Wonder at Wikipedia 

I was very interested to read this book when I first heard about it, as like Auggie the main character, I was born with a facial disfigurement. Also two of my children were born with a facial disfigurement, so the subject was very close to my heart. I needed to read the book to see if it resonated with mine or my children's experiences.

When I finished the story I had mixed feelings. The first page could have been written by me when I was a child and about my children when they were young. We did ordinary things, but others did not see us as ordinary children. Because our faces were 'abnormal', we were seen as different. Being different meant stares, pointing and comments.

The hardest thing about being born with a facial syndrome, is you can't hide your face. In the story, Auggie wears a motorcycle helmet to school - to me that seems a bit extreme. But I must confess to putting blankets over my children's prams when I didn't feel up to dealing with the public and wearing of sunglasses always hides eyes that are bulgy or turned.

The difference between Auggie and my experience, as well as my children's, is that we lived in the same town from babyhood to adulthood. Auggie lived in New York, which I suppose is why he wasn't well known (though I question this). We were known around the town from the moment we were born. It was only places where we weren't known that we struck the most difficulties.

Some of the chapters in Wonder are about Via, Auggie's older sister. Via was angry and sad about having a brother with a facial disfigurement. I know that my two older brothers still carry emotional scars from having me as their little sister. They hated that I had frequent medical appointments, and would get into physical fights at school protecting me. There were times that they would ignore me and not want me around. One of my brothers bullied me as well. In my children's case, the older two both have the syndrome and in some ways this mutual similarity has brought them closer. My youngest daughter is oblivious to them being different.

Auggie only had a few friends in Wonder. I was blessed with many friends. And my friends stood up to those who picked on me. I was invited to parties and playdates. I went to sleepovers. I played sport and was in Girl Guides. My best friends stayed best friends into adulthood. Something that Auggie didn't seem to have experienced.

My children did not experience the amount of bullying I did. Overall they were accepted. My daughter had friendship difficulties all the way through school, but whether it was her personality, the clickiness of the girls in her grade, some of her autistic traits or her face, we do not know. Auggie's small number of friends was attributed only to his face. In Year Two the other kids told my daughter that she had big eyes, and she didn't know how to cope with this. She didn't think she was different, so it was a shock to her to be told that she was. She acted out at that time and we had to work through the situation with her. In Year Four, my daughter had a facial halo on her face for four months. The halo pulled the bones in the middle of her face forward. She decided that she wanted to go to school with it on, once it was safe to do so. This was a massive thing for her to do but she did it. No one teased her about the halo. In fact most of the children were in awe of her braveness. We have photos of my daughter acting in the end of year play with her face painted around the halo and a flower in her hair. She had no bullying at all after this, though her friendship difficulties continued. She flourished until the end of Year Nine.

My son found his group early on and those friends have stayed with him from the beginning grades of primary school through into high school. Due to his surgeries my son was not allowed to do sports or play rough, so his group of friends have always been girls - and this has never bothered him. The other boys accepted the situation and if they did say something to him, it was water off a duck's back. My son didn't care what others thought. I can't say that my children's experiences mirrored Auggie's at school.

I guess the part of the story that most bugs me is the last part of the book about Julian. I have not heard of any child who's had nightmares about how my children looked. No parent ever reacted to them the way Julian's parents did and no way would someone be so callous as to photoshop out their faces. In fact my photos with my facial syndrome have been shared over facebook by my friends who I grew up with.

Now there are things about Wonder I like. It shines a light on people born or living with facial disfigurements. It highlights the amount of surgeries some children need to go through. (I had four, my daughter's had twelve, and my son's had eight) The book shows the different reactions kids can have. It focusses on bullying. It shows that Auggie sees himself as an ordinary child, though others don't. It shows the anxiety people who are different can encounter when they have to meet people for the first time, or go somewhere for the first time.And I like that it tells people to be kind to people born different.

I am curious to see the movie. I am curious to see how close to the book it is, and what creative interpretation has been made. I hope it is an empowering movie... A movie that shows that people born different can overcome.

At this point I must promote my own book, Ride High Pineapple. In my story, the main character, thirteen-year-old, Issy Burgess, also was born with a craniofacial syndrome (Crouzon syndrome). This is the syndrome that myself and my two children have. Issy is fictional but she is a mash-up of mine and my daughter's experiences in high school. The story, written as a journal, is real, honest and raw. People who know me and have read it, say they can hear my voice as they read it. Ride High Pineapple is a very different story to Wonder. It is about overcoming the bully by working on your passion, which in Issy's case is her love of skateboarding. The story is about not keeping secrets. It is about how awesome friendships can be, and the ups and downs girls experience. It is about dealing with severe anxiety by using the analogy of 'becoming a pineapple'. And Ride High Pineapple is also an Australian story which makes it unique. Anyone who was born different will identify with something in the story.

Ride High Pineapple is available online as a paperback or ebook. I would love people to read my story.

LINK TO AMAZON.COM - RIDE HIGH PINEAPPLE