Thoughts before opening the first report card ever

I am about to open my daughter's first report card ever. I am curious about the mix of feelings I have in this moment. There is a little rise of trepidation, left over I'm sure from my own childhood dread and excitement at seeing my own. There is detachment or something like it as part of me knows that it doesn't matter what is in there. I can already see so much progress since our late September start to the school year and school career. It is that progress that matters. But I do care what the teacher thinks. I do care what the teacher sees. I hope that my girl is seen for who she is and that the professionals can feel the vastness in there. I can. I have spent many hours by her side growing in awareness and perception of the big person inside that little body. My time with her has opened up some kind of receptor to seeing and feeling more of everyone. Can everyone else see her? I know some can and some can't. I reunited with a long lost pal when A was about 2 years old. That friend could feel her right away. My Mom and sisters and brothers could too. I have other friends who tried not to show it but saw only a disadvantage and a disability and felt only pity. I say this not to condemn them but with curiosity about who can see and why.

I want so much for her to be seen. I want that for all of us actually. My son too, myself, my partner, my siblings and their kids. I want that for the whole world. I want us all to have room for each other.

So when I open that card in a few minutes I wonder what will be important to me? Will it be the grades that cannot possibly measure who she is? Will it be the comments? If she's done well will I breath a sigh of relief and congratulate myself on a parenting job well done as I've been trained to do, as we all do with our measurement-based judgements? If she's done poorly, will I try to suppress my disappointment using the kind of self-talk I'm using right now as I write this? 

Will it be a sort of non-event that reflects only one teacher's perspective at one point in time? Interestingly, I spent the day at work writing up 'report cards' or performance reviews on my own team. I am just coming from the perspective of evaluating people with a measurement scale and comments. It's painful. It's hard. It's useful for the discussion that it fosters. That discussion is necessary. The measurement can be useful if it helps mark progress but it's so easy to get distracted by that and miss the context and content and growth.

I will take this as a first marker to be used to see how far we can go from here. Before I even open it, I know that her teacher and educational assistants are great and I believe they do 'get' her. That is so important and no matter what is in there, I know I am amazed at how far she has come since late Sept and I know we can work together to go further.

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.

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?

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.

I'm 3!

[Mom's editorial]

A sunny day in the park, a trip to casa gelato, a long nap, pizza, cake, homemade frozen yogurt, presents topped by a bath. And although I'm sad the teachers had to go on strike, I am very glad my big bro was here for all the fun.

Happy Birthday to me!

[A's real thoughts]

Took mom forever to get me out of the crib today. Does she not know what today is? Then she lets me watch 'signing time' which is great but I was starving. Nice oatmeal but someone said ice cream and that sort of wrecked everything else. We drive around forever and play in a park we've never been to or maybe it was just that we never see the sun so it all looked different. I was quite insulted when I was plunked in the stroller. Seriously, I can walk, except when I can't. There was nowhere to pee so I had to resort to the cloth diaper and of course when mom tried to put me on a baby change table, I lost it. I can stand thank you. Finally we get to this ice cream place and the day starts to deliver.....zzzzzzzzzzzzz

Here we are again

Three years ago today, I was in the waiting place. Or rather, I was in the rush of busyness to prepare for being in the waiting place. I had just wrapped up at work. I had filed my paperwork. I was about to clear some space and get the supplies. I was sure I had at least a week to relax and contemplate the huge change coming into our family. That evening brought with it the first of many surprises.

• I started labour 10 days early
• I interviewed a doula in the morning and asked her if she was busy that day
• I gave birth at home (plan B)
• The birth was a mere 6 hours of serious labour, a pittance compared to my first experience.
• It was a girl
• It was a little girl who was A, not S as we were expecting
• Our precious little girl came with an extra chromosome and I could see it right away

I struggled against the disappointment but I was crushed. Our son bonded instantly and completely with his little sister. Our community rallied around us with food and visits and extra hands while we tackled the 6 week long job of teaching her to nurse.

• She did it. She learned to take in milk.
• She smiled, she cooed, she drew us into her magic
• She learned to sit
• She learned to scoot around on her bum
• She learned to crawl
• She learned to stand
• She learned to make the sad face with the bottom lip that stops everyone in their tracks to help her
• She learned to command all of us and bend us to her will
• She has just taken her first steps, said her first two word sentences and read her first words all in the last month or two

The surprises keep coming and I hope they never stop. Happy Birthday little boss of me.

Look who is 6!

Six years ago around this time, I was in my hospital recovery room staring at my newborn son with awe and wonder. Like so many things about him, his birth was long and dramatic lasting from Thursday evening to Sunday afternoon. We had tried for a homebirth in our apartment. Things did not progress and we went to the hospital for pain relief and contraction enhancing drugs. That ride to the hospital in big T's '72 Chevy Nova is burned painfully into my memory. So, another 24 hours and T appeared in his strange looking newborn little self. He was very alert, very awake and always very hungry. He changed everything. He birthed a mother. Thanks T for coming to us and being the magic that you are.

As we celebrate this important birthday (all weekend) we are also anxiously watching the news of disaster in Japan. We are praying for the people there and here as we read about the radioactive plume possibly headed our way. I remember long ago reading (when I still had time to read) about the Manhattan Project and how at least one of the participants (maybe Feynman?) realized that with the first 'successful' fission, the world had changed forever. It really feels like the genie is out of the bottle. What kind of world will it be for you and your generation? I feel so helpless to prepare you for this. All I can do is protect you as best I can and try to help you use your powers for good.

Look who is 2!

Two years ago I looked into the face of my newborn little girl and my heart sank. I could see right away that she had Down Syndrome. It was a shock. I had not tested and although I was 41 and I knew the risks, I really didn't think it would happen to me. So began, the craziest few months of my life. Teaching her to nurse took up the first 6 weeks and when we came out on the other side of that mountain pass, there were a few more valleys to cross. I've said before somewhere on this blog that when the physical labour stopped, the labour of my heart began. It's true. There was pain in that opening of the heart but the labour is over and we are only beginning to discover the depths of the love that has been birthed.

So thank you little girl. Thank you for cracking me wide open. Thank you for pulling out more of me than I thought was in there. Thank you for coming to stay. We love you so much, Happy Birthday

Hot Cereal

The other day, A was playing on my bed after our morning nurse and she looked up at me and signed 'eat'. This is not too unusual as she often hurries me along through my tired, slow morning movements. Then she signed 'cereal' and then 'hot'. Her signs are of course imprecise so I did a double take before I realized that she was asking for hot cereal, NOW!

Of course, she got her hot cereal with grated apple and raisins as fast as possible. I'm so proud.

Birthdays

So, this post is about 2 months late. The kids were born 4 years minus one week apart so there is alot of birthday activity in early March. When T turned 1, we had a big bash to celebrate. It was more about us getting through that first intense year than about fun for him. Subsequent birthdays have been all about him. This year it seemed fitting to celebrate the two big milestones so we had another big bash. It was great, we may never do it again but it was super fun and a lovely way to celebrate our lovely girl's first year and our young man's fifth.

As in the past, we didn't get any pictures. We were too busy talking and dealing with cake and food and coming and going. Fortunately this time I handed our video camera to a friend and asked her to get some footage. It has taken me a long time to get any time to put this together but here is a little taste of birthday week 2010. The song in the video is Kooks by David Bowie. My friend S reminded me of this song just before A was born and it has been her best lullaby ever since.

A year ago we were leaving for Kamloops, shifting out of the shock of A's diagnosis and trying to find a shaky footing on the road to acceptance. We were also rejoicing at her new found successful breast feeding latch after a 6 week odyssey of trying everything. She has lead us on quite a journey since then. I have big hopes that she will continue to teach us and show us what really matters. Happy, happy birthday to both my magic love children and thank you both for landing on our little planet.

Hey, You eating that?

Sleep is improving, thanks for asking. I hesitate to say we have it conquered because as you know, if you don't like what they're doing, it'll change and if you like what they're doing, it'll change. For example, after quite a few nights of 7 hour stretches (yay, yay, yay!) she slammed us twice with 4's and 5's. This wouldn't be so bad except we get confident in a pattern and we start to stay up late. Always a big mistake for me.

In other development news, we see the IDP consultant about once per month. We've seen a physiotherapist twice and we now go every two months. We are grateful for these services, but I do worry that the physio especially is not frequent enough. Both times we've gone, they have pointed out subtle but important adjustments I could make in our daily habits; how we pick A up, how we guide her to change positions, how we help her with supported standing. The worrier in me has been surprisingly quiet so far in this journey but it's peeking out a little now as we see the delays more. I found an excellent book at the DSRF library. It's called Time to Begin by Valentin Dimitriev. There is an updated edition in the 2000's. It's been really helpful. It's easy to read and very practical and it's armed me with more knowledge and vocabulary for the professional visits. It is WAY more useful than the book that arrived with the diagnosis. He is also very upbeat about the possibilities for people with Down Syndrome.

So, we are working on leg strength by doing soft-kneed standing. We are working on hands and knees position and we are working on moving from lying down to sitting. A doesn't like the hands and knees exercises at all. She always wants to be grabbing something and investigating. I think this is great but it's hard to get through the stuff we're supposed to get through. I try to keep it opportunistic rather than drill-like. There are days when I just want to play. So we do.

Eating is going well but there is a shift. She is no longer content with baby mush. She's figured out that we're eating more interesting fare and she wants it. She's grabbing it right out of my hand. It's great but she often gets distracted by the self feeding and she's eating less as a result. I'm sure it'll change but feeding times are a little long right now.

Elimination communication is going well for solids. We hear the signal and head to the toilet. She knows what to do. I'm still amazed by this but so happy. I spent part of last week upgrading her diaper supply. We're using cloth and I was combing craigslist for more. We found 12 brand new organic cotton prefolds for $35. We should be good until she's done. EC for liquid is still pretty casual. I try once per day after the morning nursing session. Sometimes it works, sometimes it doesn't. We still reinforce the pssssss sound when she goes in her diaper but I'm wondering if a sign would work better since visual learning is easier.

In the fine motor department, her pincer grip is starting to show up with all those finger foods. We don't see it much elsewhere but she's definitely working on it at the table and as she spends so much time there, I'm not focusing on it otherwise.

Communication has been interesting. She signed 'milk' at six months but didn't really do it consistently and she hasn't picked up any new signs. I was explaining this to another parent at a playgroup and suddenly she signed for 'milk' (which sometimes means 'tired') and it was unmistakeable. Then at a birthday party, T was feeding her some yummy bread. She turned to look up at him and said 'Dada' and then did the 'more' sign. It's not wise to get excited by one demonstration of progress but hey, it just happened and it was pretty cute.

For those of you unfamiliar with the age range for developmental milestones, here are a few to give you an idea what to expect. This is from the above-mentioned book. Sorry for the formatting. I did it in word and pasted the source in here so it's a little wonky.

	Children with DS		“Normal” Children
Milestone	Average Age in Months	Range in Months	Average age in Months	Range in Months
Smiling	2	1.5 to 4	1	0.5 to 3
Rolling over	8	4 to 22	5	2 to 10
Sitting alone	10	6 to 28	7	5 to 9
Crawling	12	7 to 21	8	6 to 11
Standing	20	11 to 42	11	8 to 16
Walking	24	12 to 65	13	8 to 18
Talking, words	16	9 to 31	10	6 to 14
Talking, sentences	28	18 to 96	21	14 to 32

On the cuteness milestones, she broke the monitor, so we only know she's off the chart.

Happy 10 months old

Our lovely A is 10 months old today. Alot has changed in those 10 months. My physical labour morphed into a labour of the heart. We went through a tunnel of fear and grief out to a great view with lots of giggles and love. Happy 10 month day little one. You are some kind of magic.

Love Mom