Monday, March 19, 2012

Mom sells house to find right school

“And did you get what you wanted from this life, even so?
I did.
And what did you want?
To call myself beloved, to feel myself beloved on the earth.”
― Raymond Carver

My youngest son G is in Grade 3 and has Down syndrome. He goes to a local school, and this year has been The Year of the Mighty Struggle. So much so that we have placed our beloved home on the market, and are moving to a different neighbourhood for a school that we hope/trust/pray will be more inclusive. This got me thinking: what factors have to be in place to create an inclusive setting for kids with special needs? I think of inclusion as being an alignment of a number of indicators. By inclusion, I mean both social and academic inclusion in a regular school classroom.

I’d love to hear your thoughts. Since we’ve bombed out of our current school, I’m obviously no expert. The tricky part about this is that you can have all positive indicators one year, and then a principal or teacher changes the next year, and the deck of cards comes crashing down.

Indicators for Inclusion

Leadership: The principal affects the culture of the school, plain and simple. If the principal doesn’t believe in the education of all children, regardless of needs, from the bottom of his/her heart, this trickles down to the rest of the school.

Teacher: Teachers change year to year, so this factor has wide variation. Does the teacher believe my son can be successful? Or is she merely tolerating him until the end of the school year when she can be done with him? G was labelled by his teacher early in the school year. Once she’d pigeon-holed him, there didn’t seem to be anything he or we could do to change her mind.

I wonder if the era the teacher was educated in makes a difference? Today, universities teach ‘special needs’ to all their teachers, when in the past, you only learned about kids with differences if you were in the special-needs stream of training. However, G’s Grade 1 teacher was fabulous and she was close to retirement age! The key was she was willing to learn and grow as a teacher to support G’s success. So does age matter?

Teaching Assistant: This is the person who works most closely with my child, and is supposed to execute the adapted or modified curriculum for him. The TA has the greatest effect on my son because they spend the most amount of time with him. Is the TA stapled to his hip? Then social inclusion will not occur. Children do not socialize with children who have adults hanging around them all the time. All year, despite our protests, the TA sat in a little desk beside my son. He wasn’t left alone for one second because of ‘safety issues.’ How many class birthday party invites has G had? Zero. How does he spend his recesses? Playing with the TA, who is a 45-year-old woman.

Approach by TA makes a big difference too. Is she kind and compassionate, with common-sense? That will bode better for G than a TA who believes in continuous behaviour correction and punishment instead of positive reinforcement.

Children: I believe in the early years, children’s sense of humanity is shaped by their families. That kid who is mocking the kid in a wheelchair? He learned that from his parents. The boy who is especially kind to G in Grade 1? He has an uncle with Down syndrome. My hope for the world is that with successful inclusion, kids will grow up with other kids who are different, and with each passing generation, there will be enhanced kindness and tolerance. At this point, I feel very Pollyanna saying this. But I have to believe it is true.

Parents: Parents bring a boatload of personal values to the school. When an influential mom announces she would have terminated her pregnancy if she found out her baby had Down syndrome, your kid probably isn’t going to be invited to her house for a playdate. I’m curious as to why some parents ‘get’ G and others do not. I suspect it has to do with previous exposure to people with disabilities – whether a family member or through work – or simply possessing an open heart. With parents, I’ve learned the 20/60/20 rule works. Twenty per cent are friendly to G (make eye contact, say hello), 60 per cent are neutral (are not unfriendly, but are unsure how to approach him), and 20 per cent do not get it (no eye contact, and their children show general disrespect towards G). The last 20 per cent? Forget them. The first 20 per cent? Nurture those friendships – they are your champions and islands of hope. The 60 per cent? Smile and say hello to them in the hallways. Invite their kids to your kid’s birthday party. They might come over to your side.

Size of school: I used to think a tiny school was best, because all the kids would get to know G, and he would feel a sense of community. What I found out was that a tiny school means there are no options. If there’s only one class of each grade, and you get a non-inclusive teacher, your next 10 months are going to be misery. Tiny schools do not typically have many kids who have special needs. G has been the only child in the entire school for the past two years who has a TA. That means the school does not have to be inclusive; they merely have to tolerate my son. More kids with TAs? The culture of the school slowly tips into inclusion because they are forced to.

School diversity: We picked this school because it was culturally diverse. While I love the variety of cultures represented, being culturally inclusive does not translate into being receptive to special needs. Children who arrive at the school not knowing English are put into ESL classes to get them speaking English and assimilating as quickly as possible. The goal is to make everybody the same. G will never be the same as everybody else, no matter what they do. Truly embracing differences goes beyond the annual Multicultural Day.

Living in 'the hood:' G’s school is one neighbourhood over (Our local school is an academic excellence school – you can imagine how welcome G is there). We don’t live in the school’s neighbourhood, so we will forever be outsiders that way. I wonder if living right in the neighbourhood makes a difference for acceptance? You see folks at community league events, and are seen to have ownership in the neighbourhood. People get to know you not only as mom to the kid with Down syndrome, but as mom to other kids, and the mom that lives in the house down the street.

Neighbourhood demographics: I’ve heard that inclusion is more challenging in higher socio-economic neighbourhoods. Is this true? G went to a pre-school that had many moms who drove luxury vehicles. Social inclusion was challenging there too. But was this a factor?

My role: Finally, me. I recognize that I have a big role to make inclusion successful for G. In order to avoid the ‘us vs them’ mentality, I need to ingratiate myself very purposefully as one of ‘them.’ I need to belong to the school community so I’m valued (and hopefully, vicariously, G is valued too). My husband served as Treasurer on Parent Council for three years, to demonstrate our commitment to the school. I’m not sure that helped. I did extend out to the school community very heartily the first two years. I smiled to people in the halls, said ‘hello,’ volunteered at every opportunity, invited kids over for playdates, and invited the entire class to birthday parties. I said ‘thank you’ over and over to the principal, teacher and TAs. I remembered teacher’s birthdays and brought flowers, dropped off chocolates in the staff room at Valentine’s Day and brought back small gifts to the TA every time we travelled. But when the road got rocky last year, my perseverance waned. I shut down, and extended out only to people who were friendly to G. My mouth hurt from smiling so much, and my enthusiasm shrivelled up if playdate and birthday party invites weren’t reciprocated. I slowly gave up.

I hope I learned lessons from this school experience, and can give a fresh perspective to G’s new school in September. But I’m open to new ideas and inspiration to keep soldiering on! I wish I could sign my real name to this piece, but I can’t. Word on the Internet spreads quickly, and I need my son’s next three months at this school to be tolerable. I’m terrified of being flagged as a ‘difficult parent’ at the new school. But I’m tired and worn down. I feel the system has broken me, and most sadly, is starting to break my sweet, gentle son.

Kind BLOOM readers, what is your advice to create an inclusive setting for G at his next school? How do we nurture a school environment so he truly belongs?


In my experience, a school's tone is set by both neighborhood and the principal. My daughter was "included" in a mainstream K and 1st grade classes in the neighborhood school. She was left out. For 2nd and now 3rd grade, she attends a different school, in a self contained class and is included in school like. The current principle asked to be principle of the school that housed most of the districts needs classes. As far as neighborhoods go, at the first school, most of the students had parents and grandparents that attended that school and have cousins that attend the school with them. The current school has a mixture of new families and locals. It helps.

I wish G the very best school experience possible. Your willingness to put your home on the market and move certainly shows your committment to give that priority!

Our experience, with a daughter now in high school, is that "smallish" districts have been a good fit. They should be big enough to offer serveral classrooms at one grade level so there are several teacher options, as you point out. But not so big as to have "the perfect program for your son." That is 'schoolese' for "we have a program that needs participants so we can keep it funded, and we need your child's body whether it suits him or not." I have yet to meet any families in the huge urban district near us whose children are included. Nope, gotta keep those special programs funded!!

I do not mean to discourage you with our story but to alert you to possible difficulties. Our experience has been that inclusion became harder the older our child grew. It was awesome in elementary school (two different districts). Even middle school was fabulous. But now in high school, the emphasis is on college and career placement, and there is no room (even in our third smallish district) for a child whose goals look different or who might distract other students from their goals. The kids would be fine with it--it's the staff who is resistant.

I think the parents should write to the Government, Director of Education and School Board Chair and let them know what is going on. They need to know what it is like trying to find belonging, acceptance and real inclusion in schools. Things are not going to change without speaking up even if you might be afraid. You should not be seen as a difficult parent. No family should have to move to find another school. The neighbourhood school should be a welcoming and well resourced inclusive place for all children to learn. No child (or parent) should be simply tolerated.

Maybe can Holland Bloorview be a leader by bringing attention to this abysmal situation faced by so many families? Too many agencies don't speak up because they say they don't do advocacy for families. They say they can only help one family at a time. They say they cannot be more vocal. This seems wrong. Families need the support of big community organizations like Bloorview (Geneva Centre, Community Living, etc) to support them and act as a catalyst for system change in education. The system breaks too many parents. It wears them down. The system relies on this. Something needs to be done.

Maybe start off by even just sending this column to the powers-that-be in the school boards. The column and comments are very valuable. They come from the heart. The stories are painful. All schools should be nurturing environments in which children can learn and grow. Anything less is unacceptable.

Maybe the newspapers can pick up on this?

Maybe write or present to your special Education Advisory Committee in your board. Make your voice heard.

Don't accept the status quo.

Relationship. Its so much about relationships! If you have staff (even one or two key staff) willing to work in partnership then many things can be created. We often called inclusion a "team sport." Without working together it does start to fall apart; working together, even if you don't arrive at the most brilliant solution, you often have fun and LOTS of laughter along the way. This works wonders, as laughter is very inclusive!

My daughter, thankfully out of the secondary school system now, was fully included for most of her school career. I'm not sure if this was because we were insane, or just completely committed to diversity and inclusion as the way communities need to grow and thrive. J says it did not completely scar her, just a little. And over the years, the BEST years were the years that we were able to work together as a team. As soon as the team thing wasn't working, it pretty much fell apart. AT those points where the professional/parent team thing wasn't working, often the peer team kicked in, and that was a delight to see, especially in high school. Don't know if this is of any help, but also, different situations and times of life make different aspects important.

My son is in preschool but I already see the things your talking about happening. I really try to make other connects with families and/or children (ie: church, playgroups, clubs, sports, support groups). I find that schools are an environment that we have very little control over for the reasons you mentioned. The more I push them to do something, the more they exclude my child and me.

We often hear stories just like this one from families fighting for inclusion in schools. Reports back really do show how one teacher, administrator or teaching assistant can make all the difference in the world. Sometimes tackling that one person can seem an insurmountable challenge.

What we are also hearing, however, are wonderful success stories, in schools across the Province. Through our Full Day Kindergarten Pilot programs, children receiving therapy supports in school are faring better academically and socially. Their teachers are also gaining a better understanding of the students’ behavioural, communication and learning differences. Having therapists in schools are also providing teachers with strategies to work with their students, and provides different learning tools which the whole class can use.

Presently, OACRS is advocating with government that more therapy supports should be provided in school and that inclusion is essential to the success of children with special needs and their peers.

We would encourage you to have a look at our Every Kid Matters newsletter which profiles Cole, and how inclusion made a difference for him, his peers, his school and his parents.

Finally, we also encourage you to speak with your MPP, your school, your trustees, and let them know what value inclusion brings to schools, and reminding them that every kid matters. (Our campaign materials and newsletter are available on

Dear G's mom:

You are not alone with the challenge of inclusion.

My son also has Down Syndrome and is in Grade 3 attending the Public School System. Inclusion up until Grade 3 has been wonderful, my child would be called up in class and would be impowered when the teacher would ask him a question and he would answer her question. His peers all got to know why some things were difficult for him and all wanted to help and were his friends. My son was invited to birthday parties and the invitations were reciprocated.

Grade 3 has been a terrible struggle for J. Js grade 3 teacher was waiting for a Inclusion Team to show her how to include him in her class. Meanwhile the Education Assistant who has known J since Kindergarden was swatted away like she was a fly when she tried to share information about J. I too tried to share information with the teacher about how J learns, she was not interested and did not give me the time. She would pass out assignments and would skip J. The role model for this class continually excluded J in front of his peers. It was now October and there had not been one meeting with the parents to set up learning goals for J. My husband and I decided that we need to meet with the principal (also a new principal that is a acting principal). When we met with the principal her whole focus was disturbing to us. The principal was concerned about how we knew that J was not being included and was determined to reprimand the EA for telling us. We were concerned that J had no modified curriculum and we did not think that this teacher could change and accept J. It was decided that J would move to the Gr. 2 class during the duration of this teachers day (she worked mornings only) and move back to his Gr 3 class in the afternoon to be with the group of peers that he has known since Kindergarden. This was heart breaking for me but we knew that we had no choice. The relationship that I had with the EA has deteriorated, she is no longer able to communicate with me as she has been directed by the principal. We wrote a letter to the Superintendant with our concerns about the teacher, about the lack of communication, and the lack of programming. Again we were dissappointed with the outcome, the department supports the principal and agreed with the principal that the EA should never have shared information about the teacher. The department would not share how or if the Gr 3 teacher will be educated on accepting differences due to FIOP.

My son use to LOVE going to school, and now he does not want to go to school. None of Js teachers want to talk to me and either does the EA (the person that was a friend and that I trusted) I have been desperately trying to find out what happens in my childs day but now I have 2 teachers (Gr 2 and Gr3) writing in the communication book about general things that happen in class, no valuable information. I know what you mean about being labeled as the difficult parent. I feel like I have that label and I am being excluded as well. To date the Inclusion Team that the Gr. 3 teacher was waiting for still has not come to the school.

We are now looking at seeing if the Catholic school in our neighborhood might be a option for the remainder of Js elementary school years.

I have the same horrible feelings of being rejected. This has been a very painful experience. I have hoped and prayed that things will get better. I can say that we have experienced how one or two people can change a good thing.

Hello Everyone,

My heart goes out to the author and respondents of this post. I have also experienced segregated and mainstream schooling. Moreover, I am also the first to admit, "Children with disabilities are bright, but they do learn at a slower pace, and in a different manner, than their peers." I would also choose not to modify the curriculum, but provide an extended school year with dedicated teachers and tutors. I would fail a student if he or she needed more time or assistance to meet the provincial standard. Some might think that I'm being extremely harsh, however, "I am choosing inclusion beyond elementary and high school."

I would choose a Catholic school.

Matt Kamaratakis