This Guy

In case you think the world doesn't revolve around the big brother let me reset your impression. I have had a few conversations with families whose oldest child has an extra chromosome or some other challenge and their youngest is 'typical'. I think we can all agree that 'typical' means everything and nothing but here I use it to mean someone with no cognitive delay. The parents often lament that their 'typical' child who happens to be the younger one, gets ripped off. They don't have as many activities focused on them. They get dragged around to the appointments and events which make up their disabled sibling's days.

I'm convinced it's a birth order thing. Most of my writing here is focused on my little girl because I have found value in reading the stories of others and in sharing our stories. I probably haven't expressed the fact that much of her life has consisted of being towed around to her big brother's events and activities.

I have many many stories about this guy. I adore him beyond imagining. The best thing I have ever written remains unpublished because it's about him and he has asked me not to post it as he is self-conscious enough to find it embarrassing. So I won't do it until I have his permission. It hurts though, it's a really good story.

He is a big, big light contained in a skinny freckled body which he does not always inhabit. He soars up to the heavens in excitement at new ideas. He crashes to earth and lower when disappointed, tired or frustrated. He needs time alone with his large imagination and we try to let him have that although it can be quite a challenge in days filled with school and soccer and capoeira and swimming and homework.

There are many days where I admit to myself that my 'typical' child has me more worried than my disabled child. Many days. Days where I remind and cajole and debate and do the 1, 2, 3 count and find the 100th lost item and then finally give myself a timeout before I lose it. Or worse, days when I do lose it. Days where I hear the echo of my late father's pathologies and try to remember that this is a different time and place and I am a different mom and history does not have to repeat itself, not while I am here to stand my ground and hold a big enough space for him.

There is one person who can ground him back to earth in an instant. There is one person who can bring back the brilliant, blinding light. His little sister (of course).

This guy is not getting ripped off. Neither is she.

K-Day

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.

More soon I hope.

Memory

My baby niece was born Easter Monday. Her beautiful face looks just like our babies, like her older cousins and her siblings and her aunties and uncles and parents when we were all babies. My very cells recognize her. The moment I saw her my heart broke open again to eat her up. My ovaries leapt. I want another one. I want her. I want one like her.

Our memories continually rewrite themselves. As we access them and relive them and subtly revise them, they go back in altered form to be reaccessed and altered over and over again until they fit. Fit what?

I want to alter the moment I first saw A's face. She did not look like the babies in our family. Something was wrong and I knew it immediately.

I want to tell the story again over and over until it fits. The view from here is full of love and joy and acceptance. Not only do I recognize her now, I see that she recognizes me. She sees everything, my full of surprises miracle and the drawer out of inner things.

I want to rewrite that moment to imbue it with all I can see from here 5 years later. I want that moment to be like the moment I saw my son, my niece and all of the others. I want to erase the disappointment, the sadness, the despair and above all the fear which still leaves it's almost invisible trail over mine.

I met a 3 month old baby recently. She was at the playgroup we attend with other families that thrive and sometimes struggle with an extra chromosome. She was beautiful. She was perfect. My heart broke open for her too. I can see from here how she is exactly who she needs to be, with her littleness and her wonderfully alert expression surprising her parents and brother continually just like our mysterious surprise child.

When I tell A about her birth, how will the story go? I was scared? I didn't know what to do, how to go on? How to start over? Will I tell her I had to fight to feed her for nearly 2 months with a fight so intense I forgot about Down Syndrome? Like Pi fighting the tiger in his life boat. Will I tell her how quickly she came and how the birth labour paled in comparison to the labour of the heart that followed? Will I tell her that I had grieved for another baby that didn't make it and that there was no way I was going to let doctors probe her in utero to give me the choice of termination? Will I say any of this or will I let her shining presence be enough.

This child doesn't need a story. This child is here and fully present containing everything, reflecting everything, releasing everything and holding nothing. It is enough to just be with her and let the magic work.

So the magic slowly edits that moment, polishing away the edges of fear and sadness to a smooth shine reflecting the gratitude for every second we've got.

Mother's Day Tea Party

My darling sweetie climbs the steps out of the preschool in her step and close way. She is holding a coffee filter flower and wearing our favourite pink knit dress with her sparkly shoes from her big girl friend Kara. It's her turn to escort me into the tea party. It takes her longer than the other kids but she is third in line so the excitement is still building and no one is impatient yet. She leads me carefully to our table and takes my seat while offering me hers. She is too excited to speak and I can't stop speaking and asking her questions. There is a present and place setting for each mom. We are all thrilled of course. The kids get up and do two songs with actions. She places herself front and centre, joining in and looking at her class mates for clues. She is among them and apart. The bond between some of the other kids is not there for her but everyone is friendly and her main connection is to the teachers. Now in this moment, she and her mom are dressed up for a tea party and there are strawberries and cupcakes and songs. What else could possibly matter?

Executive (mal)function, the new buzzword around here

The digital signage behind the bank tellers wind through their promotional material. I recognize one of the families in the photos. Not from this neighbourhood but from the daycare at the university where I work. It's funny to see the little boy when he was a baby. He is so recognizable with his distinct and intense features. My mind has plenty of time to lose itself along the path of this marketing campaign. I'm standing at the counter waiting as the very patient teller counts through the nine separate deposits I've brought for A's preschool. The preschool is run by parents and I am the banker. This is probably the last deposit I will do in this role and certainly the last big one. This feels like a milestone in the road to kindergarten or K-day. I've done this job for this pre-school year and I did it when her brother attended as well. On the first Saturday of every month, I bring the tuition cheques and any fundraising monies we have earned to the neighbourhood branch of our credit union and wait while everything is counted. If I had a tape machine, I wouldn't have to wait as they would just trust the tape but I don't and I don't mind the wait today as I'm on my own and there's no need to use all the eyes in the back of my head to monitor where my little peeps are. The evening before this trip involves some long tedious counting and writing out of deposit items. Nothing hard but it requires concentration on something and some quiet which are rare commodities.

I've used this tediousness as an example to explain to my son that some things we do are important but not that interesting or engaging. If I don't do this, the teachers won't be paid so I have to focus and do my best even though it's not interesting or fun. He has a challenge with executive function. That is the new way to say, he's disorganized, forgetful and loses everything despite his brilliance. I am using every tool I know of to help teach him to work through these challenges but I must say I'm exhausted. It turns out I may also have executive function challenges. I know how to get things done but I have had to learn how to cope, to outsmart myself into being able to function in many high pressure situations. I suppose that should put me in a good position to help someone else but parenthood is definitely stretching me to the limit. I'm reading about this challenge and like the hypochondriac that I am, I see the patterns in all of us. I may be the only one in the house with any executive function at all which may explain why I am 'so tired like a hell' as my grandma used to say. I'm sure I'll be writing about this more as my awareness increases. Maybe I'll even have some tips to share. In the meantime, greetings from my chaos to yours.

The Party

Five little girls grip the side of the crib with fierce glee. Their faces shine with naughty delight. This really is five little monkeys jumping on the bed. I grab the camera and get a few blurred shots. I'm trying to capture something, maybe proof that we are having a good time. There's no doubt about it. I'm the last to be convinced. I have been worried about this birthday party for weeks. Who should we invite? How many? Too many will overwhelm her and too few is too vulnerable to no-shows. I don't like relying on plan A. I need B,C and sometimes D. What will we do? Free for all or structured entertainment? Will anyone come? Does she have any friends? Will she have a good time? Will I? Who is this about?

This is the first birthday party for her that is somewhat directed by what she wants. Her younger birthdays were essentially celebrations with our adult friends and their kids; sharing milestones and toasting the survival of each early year. This year is different. Thankfully we are beyond survival. Now, these are her choices, her playmates from pre-school, daycare and the playground. I will barely know the parents and they won't know each other at all. They will see the best version of our mess. They will know we are sort of weirdos too with art and odd furniture and music and … why do I want to be so normal now when I have never cared before? Who is this about?

I sit in cake-making exhaustion the morning of the party, trying to hear God. Sometimes I can. I tried to quiet my mind and to escape the drift that creeps into the main stage so quickly. As my worries parade on through, I slowly notice an image of Lego treasure. I see gold plastic treasure chests and coins superimposed on the other thoughts. What the….? there is a moment of confusion and then I recognize the gentle teasing humour of a message from God. I'm chasing the wrong gold, fools gold, toy gold, fun, even useful, but ultimately the wrong focus. I suddenly know, deeply know, that only a few things matter right now and my current worries about the state of the house and trying to pass for normal, whatever that means, don't rank at all.

Now I stand watching my dear girl with her pals, having the best time. I see that she is not like them but she is also not that different. They all play together and all a little apart from each other. They wander around and find things they are interested in. My planned craft activity captures some interest for a time and then they drift off distracted by the pink doll palace that has shown up for birthday week. The kids crowd around the cupcake mountain when the time comes and my girl 'A' is front and centre. She knows this is her moment. She can't muster up enough wind to blow out the candles but she gets help from her brother and her friends. Yes, friends. The ensuing cake frenzy is as varied as the little party people. One licks off all the pink icing and leaves the cake before asking for more. Another eats around and around until reaching one last bite. My 'A' face plants right into the cake and comes up for air momentarily before diving again. I talk to parents and I like them all. The tenure track professor likes the tunes we are playing in the background. Parents tell us tales of their kids' accounts of 'A'. Tales of 'A' rescuing one from a fall. Tales of 'A' bossing another one around. She is a force to be reckoned with and she's making her way somehow.

I find that all that I fear, besides not having loads of food, is what everyone fears. Isolation. I am beating it back for my daughter and for myself. As it turns out, she is the least likely person to need help with that. Really, I should just get out of her way.

And so we celebrate and I do my best to let the worry rest. There will be more parties and kindergarten is looming but right now we celebrate 5 years of the life altering presence of Miss A.

Look who is 5!

5 things I love about my 5 year old.

1. Her learning disability mysteriously disappears when she hears something I don't want her to learn. She picks up all her brother's toilet humour and goofy gags in one repetition. Her favourite word is 4 letters long, begins with F and ends with T. She uses it often as it gets a laugh with the big kids.

2. She loves to sing. She makes up songs on our long commute. I usually try to use the time to play something educational or brain stimulating like classical music but lately she prefers to stop all the input and crank out some output. Some of her ditties are completely unintelligible but others have a beat and a tune and themes like fireworks, rainbows and ice cream. I feel the hits coming on.

3. She loves school ( and day care and play groups). She is the kid that either doesn't look back or looks at me in surprise when I linger and says dismissively, "Bye Mom!" waving me off like a lost puppy.

4. She has strong opinions. She chooses her clothes, accessories, her favourite foods, her books, her music, her toys. She would like to rule the world and is practicing every minute. As a younger sister, a lot of her time is accounted for being towed along to her big brother's activities. She is standing up for her space more and more and although frankly there are many moments where I don't have time for her to choose to go the other way, I am thrilled that she is taking a stubborn stand and being demanding. It's a streak that with time, will help her.

5. She is the boss. Her confidence and demeanour have come in like a strange wind of blessing. None of us have such certainty that the world was made to have us in it. I'm sure this will be tested as she gets older by those who can't see who she really is, but by then it will have rubbed off on me and I'll be sure to remind everyone who's boss.