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.
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.
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?
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