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?