The Importance of Community

Last night I had the pleasure of meeting up with three other families who have children with DS. We all met when our kids were very young and our kids were all born within 4 months of each other.

As families we represent a wide variety of demographics. We have a stay at home mom, some working moms, a single mom, a common law couple and two married couples. Some of us have only our child with DS and some have other children too. One family uses a nanny, and one goes to day home. Three of the families use developmental aides and one uses an extra day home spot - all covered by the state to help our kids reach their full potential. Three of the families also make use of a DS specific preschool class offered in the city.

We all have such a wide variety of experiences and backgrounds; of philosophies and parenting styles and of feelings about our children and Down syndrome. And we all have this wonderful bond of support and delight for our children's accomplishments.

"Want to see a video of A standing up in the middle of the room over and over?" asked one mom (bursting with pride). And we all watched and celebrated the accomplishment of her daughter, knowing how big these milestones are to parents like us. We admired G's rad new walking skills, and B's take charge attitude with her younger sister. And I showed off Phoe's new verbal skills.

We talked about a lot of different topics. Our lives, our partners, our kids. Views on potty training, on vitamin therapy, on which preschool we are going to send our kids to etc, etc. And the wonderful thing about this group of friends is that we can talk about these things, and our views and ideas, without fear of judgement. Because we all are aware that there is no one right way of doing things.

Although I am now at peace with DS, I am so thankful that I have this posse of families who are moving with me through this experience. Who understand the joy, the frustrations, the celebrations and the different way we experience raising children. Whose lives I would never be linked with but for this tiny extra piece of genetic material.

I hope to always be in touch with this amazing group of families both for me and for Phoenix. Because I want her to grow up with other children who understand what it is to have Down syndrome. Just like I appreciate having this community of families who "get it", I want Phoenix to grow up with other children who have challenges, and differences, and unique genetic makeups who "get" her. Of course I want her to have other friends and families whose lives we share too. But just like ex-pats who link and group together in foreign countries to experience 'home', I want Phoenix to have her group of friends who share this common bond.

And a pic of Phoenix swinging in the snow, because that's what we do in November in the North.

Limitless

"I expect my son to go to college, get married and live in his own house."

"The future is unlimited for my daughter."

"No one is going to put limits on my child."

When I first received the news that my daughter has DS, I read a lot of online forums. I still do actually. And I find my reaction to statements like these hasn't really changed much in the last two and a half years. I read these sentences and think these people must live in rainbow and unicorn land because they are not in touch with reality.

Don't get me wrong. I think it is important to have expectations for your children. I clearly have confidence in Phoenix's ability to learn and grow or I wouldn't spend so much time and energy on early learning activities. I see her spark and joie de vivre and feel hopeful for her future. But I wonder if there is a basic misunderstanding that having high expectations automatically translates into these expectations coming to fruition.

My parents expected all of their children to go to university. As long as I can remember, post secondary education was always the implied end to our educational career. My sister and I did in fact graduate from university and we both have found success in our particular fields. My brother dropped out of high school, dropped out of college and ended up as a morally bankrupt individual. How can this be, you ask? Your parents had such high expectations!

We are all limited in some way. Some of us more than others. My daughter will have more challenges and limits than many other children. It will take longer for her to learn and process information. It will take longer for her body to learn how to move. It will take longer for her mouth to learn to make different sounds.

She will be limited.

I can't understand how it hurts the DS community to admit that our children will be limited. It's the reality of having extra genetic material. It causes complications, and challenges and limits. Our children are different. And that's ok.

My brother is a limited person. It's not because my parents put limits on him. It's not because society put limits on him. It's because having high expectations of someone does not automatically cause them to be successful. There is not necessarily causation here.

There are all kinds of other factors that influence people's long term outcomes. Personality, family support, learning styles, socio-economic status, parental education levels, parenting styles, school community, access to resources, peer relationships, and the presence of disabilities all impact the outcomes of children and youth. In fact, the interplay of factors that do influence outcomes is very, very complex. It is simplistic to assert that having high expectations of our children translates to outcomes such as attending university or college. Having high expectations won't cause this to happen. Having a strong academic aptitude as well as a myriad of other factors might allow it.

Given that 99% of people with DS have intellectual disabilities, it is extremely unlikely that Phoenix will go to university. It's not impossible, it's just not likely.

And you know what? That's ok.

I took a graduate course in Spec Ed while I was pregnant with Phoenix. The professor asked the class "Why aren't more high school graduates applying to go to university?" I responded "You are making an assumption that going to university is the pinnacle of what it means to be successful." I think the question should be "How do we let young people know that there are many routes to success and that going to university is just one of them?"

Phoenix is limited. She has a disability that will likely make many aspects of her life challenging. It's ok to admit that.

I can hold this view and still see a bright future for her.

Snow Day

I haven't felt the calling to write much lately. Work and life have been very busy as has my wonderful little toddler. I took a snow day with Phoenix last week and took some pics while out shovelling and playing with little Miss Phoe. Here are a few of them.

 Here Phoenix is about to sign and say "cooooold". Even totally bundled up she always lets us know the temperature.

Here we have walked to the mailbox. One of Phoenix's chores is to walk to the mailbox with me and check for mail. I lift her up to look in the box and if there is mail she reaches in and pulls it out for me.

I lived with young parents for a while in B.C. when I took a break from teaching. I was always so impressed with their parenting skills with their son and really learned from their example. They always included their son in all the tasks of the house, but modified for his level. Their ability to include him lead him to feel competent and self assured and really cut down on behaviour problems.

I try to parent Phoenix in a similar way. I find tasks that she can do and always reinforce that she is 'helping' mom. It's nice to feel that you can help others, and not always be the one asking for help.