Blog Archive

October, 2014



By: Sally Felkai

It's K-Day minus 1.

I have long pictured the moment she walks into that classroom, wondering whether I'm going to lose it or maybe after all the worry and planning and shifting and practicing that has lead up to that 15 seconds, it'll just feel matter of fact. I will want to let it all go but I will know that the worry is not over and may never be. If experience is any indication, she is likely to dive right in and not so much as glance my way in acknowledgment of the anxiety cloud hovering there waiting for some reassurance that I'm not breaking anything by stepping away.

As it turns out, I won't even be there. Weeks ago I had to commit to a meeting at work, an unmovable HR meeting. How the bloody H could I possibly know that it would conflict with her first gradual entry hour in Kindergarten? Part of me is incredibly frustrated and part of me suspects that the weirdly impossible coincidence isn't one. Papa will take her in and like Heisenburg's principle of the observer changing the observed, it will just go smoother without mama-worry-bear hovering.

Oh there will be plenty more opportunities to hover and explain and cajole and step in and step back. Good thing I like dancing.

I have been quite freaked out about this for awhile, especially around the new year when the change of date made the K-Day approach palpable and the gap between her and her peers was clearly growing rather than shrinking. She makes progress all the time but a typical kid is going light speed to her highway pace. We were reading Harry Potter with my son at age 5 and he had no problem with the complexities of the story. A is more at Caillou speed. This is not bad, it's just so different.

For the most part I do not spend time comparing her to her peers, I just focus on where she is and where she is going, but soon, next week in fact, she'll be in a room with her peers for 6 hours a day, 5 days per week. She has experience with preschool for 6 hours a week with her peers and daycare for 3 days per week with kids ranging in age from 18 months to 5 years. That range gave her lots of options for interaction with both early and sophisticated movers and talkers. She has benefited from the interactions with other kids and I know she really likes a couple of the kids but the kids already sense a difference and the divide between her and the others is undeniable. None of this matters to her now. She enjoys everything. But what about Kindergarten and grades 1-7? This may be the set of kids who she's with for years and years.

Last spring, over a year ago now, our supported child care development representative asked us to get an assessment of Ariel. The assessment had to be from a specific centre near a specific hospital. We asked how to get this and she said, just get a doctor referral. We asked the doctor when it came time for the next appointment and he thought it was unnecessary and probably not possible to get an appointment in time for school anyway. This was 18 months before K-day. We talked to our school staff as well and they also thought it unnecessary. We left messages for the scd rep and never heard back.

Last September rolls around, 1 year to K-day, and the supported child care development representative leaves more messages asking for this assessment. We reiterate that both our doctor and the school believe it unnecessary and don't seem to know about this requirement so could she write it down for us as a 'prescription'? In the meantime we have more appointments with the doctor and the principal of the school. The doctor puts us on the wait list for the assessment all the while warning us that kids with Down Syndrome are not likely to get the assessment because they have a known range of symptoms. The principal checks in with some folks from the district and they say yes we need the assessment because kids with Down Syndrome have a wide range of symptoms. So I get more and more frustrated at a situation that is clearly putting the family in the middle of a ministry of health versus ministry of education battle.

In January I have several dark nights of the soul. I need to spend more time with A working on basic stuff that we always work on but never have enough time for. Stuff like letting her struggle with putting on her own shoes or getting her own lunch box and putting it into her backpack. Even on my days off I am rushing her and her brother around to school and appointments and lessons and I need some space to let her learn and be with her.

My awesome boss works with me to come up with a plan where I can stay involved with my work team but reduce my hours temporarily, June through October. This gives me time to work with her one on one and time to interact with the new teacher and Educational Assistant.

In June, we gather up all the assessments we have from various programs and from our wonderful speech therapist. We await the school meeting between the BC Centre For Ability therapist team and the school and district representatives and ourselves. This is to be the meeting where the information is shared and gathered that will determine the level of support she gets. The week before the meeting we hear that the rotating strikes with likely turn into a full scale strike. I happen to be at the school volunteering for a thank the teachers event. I triple check with the principal. The meeting is still on right? He looks at me with some surprise, tells me he’ll be right back and then sometime later confirms that the meeting will go ahead but not with all the key players. Unfortunately the speech therapist for the district cannot come due to the strike action. I’m crushed because my speech therapist has so, so much information to transfer and I cannot have her time in September or October or whenever school starts because she’ll be taking on her new case load. The meeting goes ahead. It seems to be productive. I meet the Educational Assistant that will be assigned to A half time. Half time might be good. It might not be good. I don’t know. That will be enough to keep her safe but I don’t want school to be a babysitting exercise. The kid can learn and learn she must.

Late June, my mother dies unexpectedly of a heart attack. We all fly to Ontario to be with my family. I stay longer than the rest of the family. My A-plans are shot for awhile but the trip and the time away from me seem to actually stimulate her brain and she makes loads of progress on our goals. Our theory is that travel, especially to somewhere familiar, sparks something in her brain and she goes faster for awhile.

Late August, the talks break off between the B.C. teachers’ union and the B.C. government negotiating team. I rant, I rave, I write letters. Nothing. Zero acknowledgement from my MLA or any elected official. I go to rallies, I write more letters. I'm incensed with the feeling of being held hostage by a government that doesn't give a crap about people and frustrated by other parents who can't see that the teachers are the only ones putting anything on the line here. But that's a post for another time.

I organize a rally and just as I'm trying to figure out how to reach all the parents at our school and the nearby high schools, a deal is reached. Through my lividness at the strike situation I was secretly thankful to have more time. More time to play and fumble around with fastening seat belts and working with buttons and snaps and trying some pre-printing exercises. Now I must quickly shift gears. The day is upon us. I will never feel ready.

This isn't about leaving her. I've had to do that for daycare and preschool and babysitters. This is about a new frontier. Full-day French Immersion Kindergarten. Big kids on the big playground. A whole new group of kids who will all be way ahead of her. A growing awareness of what she can and can't do. This is also about what will happen outside the class. What will her brother do the first time someone says something mean about her in front of him. What will other kids do, the ones that know her and the ones that don't. How different is it now in the cruel schoolyard from when I grew up?

Friday, the teachers went in to clean and arrange their classrooms for the year ahead. I go in with treats to express my support and help out. I run into the two Educational Assistants who will be working with A and her classmate. We chat. I express some of my fears. They are excited and have a plan for each item I mention. I run into her teacher. She tells me about all the research she has done in preparation for having A and her classmate. Her mother is a Learning Support Specialist in a nearby district and she has found all kinds of visuals supports to help her. She is also excited. I am deeply moved and grateful for these professionals who have just been through 5 months of stress and reduced pay. They are all here on a non-teaching day willing to work with me and thrilled to be on the threshold of getting to know A. Maybe they know something. Maybe they feel the wave of Miss A coming their way and they're ready to surf.

This post is reprinted by permission from Sally's blog, Wide Awake Planet.

10 Lessons My Daughter Is Teaching Me


By Christie Hoos

Ten years seems like a long time.

A long time to be alive and learning and growing and discovering new things – and that’s just us. You’ve had a lot going on too!

In the past ten years you’ve brought us to life in a new way and taught us what matters most and nurtured our best selves and made every day an adventure.

Usually, in these birthday letters, I talk about all the things you kids have learned and are learning that year. I encourage you in some areas of struggle and try to share a vision of the amazing person you can/are to become. This year I’m going to do it differently. This year I want to talk about all the things you’ve taught me and how you’ve made me a better person.

Because ten years is a milestone, not just for you, but for all of us. As I look back and as I look forward, the one truth that stands out, bold and CAPITALIZED, indisputably important, is this:


1. I laugh more. You are unrestrained in your enjoyment of life. When something strikes you as funny, you howl. When the music moves you, you dance with abandon. When you feel happy, you sing – anytime, anywhere. The best part is, a little bit of this seems to be rubbing off on me. You are teaching us to Carpe the heck out of each Diem.

2. I am forced to slow down. This isn’t an easy lesson for me. In a world of rushing and pushing and trying to squeeze more in all the time, you insist on half speed. Whenever I say “hurry, hurry” you indignantly reply “no! slow, slow!” and deliberately downshift to Barely-Moving. At the time, this does not feel like a wonderful, life affirming lesson, nor do I calmly accept the defiance. BUT, I’ve learned to avoid rushing as much as we can. I’ve learned to see it as the enemy. I’ve learned that we need margins in our life, and have stopped apologizing for insisting on them. Quiet time each afternoon, early bedtimes, no to activities, yes to help… we’re not perfect, but we’re learning.

3. I am showered with affection. I am not, by nature, a hugger. This does not exempt me from your extremely tactile love language. Turns out, all that snuggling is good for the soul. Not to mention the several times daily declaration: “Hey, hey Mom… I love you!” It’s a rare and beautiful thing to receive such unfettered, unfiltered, unlimited affection.

4. I have become part of an exclusive, and usually encouraging, community. There is something that happens when I see another person with Down Syndrome, they are an instant friend (much like you and the entire world on a good day). There is a sense of kinship we share with all other families who live with special needs, even those we might not normally click with. There is an ever expanding team of professionals who are assigned to support us – behind the official designations and job descriptions I’ve found some of the most wonderful human beings and even, some true friends. Sure these relationships can be bumpy, the stakes feel high and sometimes we disagree and debate and shake our heads at each other. But we are united in our unshakeable belief that our lives are better for having you.

5. I am becoming more patient. I was a strict parent before you, one with extremely high expectations. I don’t regret that, but I’ve had to adjust to your needs. Your life is very stressful. For a personality that craves control and predictability the world of disability is particularly trying. I can relate.

6. I have a front row seat to the cutest show on earth. Seriously, you are the most adorable 10-year-old on the planet. Everyone agrees.

7. I celebrate small achievements in a big way. We  don’t take your success for granted. You work ten times harder than the rest. Your determination looks a lot like stubborn, even impossible some days, but ultimately it is your greatest strength.

8. I have developed compassion. I can’t pretend that this life is easy, for you or for us. It peels away any pretense I had about my own saintliness (sorry strangers in the grocery store who assume I deserve some kind of reward for “giving birth to an angel”). The truth is, I’m selfish and shallow and silly in ways I never noticed before. Aren’t we all? And each life is harder and more complicated than an outsider could imagine. I’m learning not to judge a person based on their neediness and messiness and general dysfunction, because I understand grief and exhaustion and being overwhelmed better than I ever did before.

9. I will never go out of style. This one feels bittersweet. I will never have an empty nest, not really. Yes, I expect you will live independently and have your own full life. But you will always need me in a way my other girls won’t. I will always have a shopping and travelling and movie companion. I will always have snuggles and giggles and silly dancing to the radio.

10. I see past the myth of normal, the social masks and the competitive games, to what really matters. Sometimes the rest of the world seems ridiculous, stressing about grades and position, looks and social status. Health isn’t a given in our house – muscles that are strong enough to run and jump, a body that fights off illness, the ability to speak and be understood, to see and hear and feel the wind on our skin, to give and receive love… these simple pleasures trump all the superficial we build our life around.

So here we are on your birthday, but the best gift is mine. It isn’t always easy. I don’t get it right all the time. But being your Mom is a joy and a privilege. Thank you! Happy Birthday!

Love, Mom

Christie Hoos blogs regularly at


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