Botanical Gardens and the end of the world

Today we went to the botanical gardens because the morning mist had evaporated to leave behind a picnic day. We packed up a lunch and found a nice spot in the shade of a giant palm tree where Aba ate and ate her sandwiches and chips, while Lucia was coerced to eat one sandwich with the promise of an animal cookie. We went on a walk through the coolest parts of the gardens, the girls crossed a small stream by hopping from rock to rock for the first time and were excited to come back the same way to try it again. Lucia wanted to feed the rest of her sandwiches to the ducks, but it was so hot even the ducks couldn't be moved to eat and our bread joined the rest of the bread that floated on the surface like some strange pond weed.

The gardens are great for Abacus, because she loves to wander - usually in directions away from where we are supposed to be going - in the gardens though she leads us to places we might not have gone.

We decided to go to the beach rather than the playground at the gardens because of the heat, but as we neared the coast, the surrounding hills became shrouded in cloud and soon we couldn't see 100 meters in front of us. Island Bay's Island ceased to exist, as though the world were being effaced by some Mayan prophecy. In fact the land had disappeared for those who were flying and flights were diverted away from the city. We would learn later the sea fog that had rolled in over the land was the tail end of Cyclone Evan. And thus ended our beautiful summers day on the shores of the world's end.

Lucia

Lucia waits on the footpath by the car as I chase Abacus down the road, I don't need to tell her to, she just stands there patiently waiting for us to return, it's just a usual part of her life.She doesn't try to emulate what Abacus does and she doesn't necesarilly think that what Abacus does is bad/different, it's just what Aba does.

Aba and Lucia are climbing out of the pool and jumping back in and I'm catching them, before Abacus decides to climb out and run away. I say something to Lucia like don't move - but I don't really need to say anything because I know she'll wait there patiently, at just 2 years old while I bring Abacus back. She just patiently waits.

Lucia is screaming outside.I go out to see her holding Abacus by the shirt as Aba has learned to open the front gate, and she's crying and pleading "Don't go on the road Aba!"

Lucia and I are pretending to talk on the phone while Aba's at creche, I ask "How are you today?" "Um, a bit sad." "Oh, why?" I'm genuinely surprised because we've been happily playing to this point. "Um, I miss my sister."

the water slide and other stories

I think Abacus might be some fashion genius, she wears clothes in ways I would never think of. She'll go to a pile of clean laundry and come out looking like some darker edged Blossom throwback.

One day Goldilocks came and ate up the three bears. That's Lucia's abridged version. Another version is that the three bears visit Goldilocks. Speaking of bears, someone bought tickets to Grizzly Bear thinking it was Bear Grylls. The weirdest part is they were disappointed...

Swimming class has been awesome lately. Lucia has been attending too and having the whole family in the pool is a lot more calming for Abacus and I think it's good for Lucia too, who has gotten really good at kicking and doesn't feel left out. Abacus still shies away and asks for cuddles, but it seems almost out of habit than genuine anxiety. She has been a lot better at doing the drills and seems to love going under water. Last week she wore goggles which was the cutest thing, their instructor got them both goggles so they could dive for toys.

The most fun thing about swimming class now is that they've been going on the water slide after class - as a reward. It's a big windy tunnel slide, dimly lit with colorful lights and can go extremely fast. The girls absolutely love it. The first day Lucia asked why these other girls screamed when they went down, now Lucia has taken to screaming too and Abacus has followed! They go down with us and we come out in a huge splash, sometimes backwards, or spinning out of control, depending how fast we've gone.

One of the cutest moments I've had with our girls was at a Saturday dinner time, when Danielle said 'Tomorrow at swimming class we can go on the waterslide again.' And the girls faces came alive with smiles and they laughed and said YAY! with completely uninhibited excitement.

swimming class

Swimming has been one of the hardest things I've done with Abacus. It's not so much the swimming part she has trouble with - she loves the water - I think it's the alien nature of having a one on one class in the water that stresses her out. With her music therapist Pip, she has had little freak outs when she has tried to run away, or tried to pack up Pip's gear to end the session early (!) but she is still in her own house, and better yet on dry ground where she can run away. In the pool she can only grip her finger nails into flesh - mine.

Toward the end of the first lesson we were starting to make a breakthrough, she'd spent the first half of the lesson crying and clinging into me and not wanting to look at her instructor, but she was starting to warm to it and do some of the drills, if only to get a cuddle as a reward, when a wayward water volleyball smacked her right in the side of the face! and that was the end of that session :(

The next week I'm not sure if she stopped crying the whole lesson. She did some of the drills, while crying and spluttering water which caused her to cry and scream and splutter more. I don't want her to shrink away from challenges though, as much as it pains me to see her stressed, I know she can do it and I know it is the situation that she's anxious about, but we want to try to normalise these environments, especially with school fast approaching. We're there to support her, but she doesn't get to run away.

The next week I stayed for an extra 45 minutes after the lesson to go over the drills with her. As with every other week the moment her instructor says the words "Ok we're finished", her anxiety is gone as though she had enjoyed the whole thing and is excited  for the next week. She high 5's him and says "thank you!", she's even taken to mimicking his double thumbs ups. With the stress of the lesson over she completed every drill with me without a fuss. She even went down the water slide over and over - she had gone down once reluctantly with the instructor and cried at the bottom refusing to go on it again - it was meant to be her fun reward! Outside of the lesson though she loved it. She climbed out of the pool herself and jumped in, she kicked and blew bubbles, she floated around by herself on a flutterboard/kickboard and almost floated on her back (A manoeuvre that invokes a Koala grip cuddle during her lesson).

But last week was a break through. Her instructor set up a bunch of water toys around the pool and started her off pouring water into waterwheel and having fun. It was the first time I'd seen her smiling and happy to see her instructor. And while throughout the lesson there were moments of shying away, they didn't last for long. She did everything required of her to the best of her ability and was rewarded by a few minutes of playtime. She swam under a bar that forced her to go under water, she ran and leapt into the pool off a foam board, blew bubbles, kicked - in her own special take on kicking and floated like a star fish.

It was awesome.

The part where Aba is ready for school

So we're already at the part of the blog where Abacus is choosing a school, can you believe it? She had a visit to Owhiro Bay School and seemed pretty relaxed there. She told the principal that she was four and wanted to go play in the park.

The school is extremely small, only 120 students. We like the idea that she won't get lost there amongst the crowd, that she can find her place. The other school we were considering has about 500 students and 4 new entrance programs that all funnel into a year 1 class the next year. Owhiro has one new entrance class that increases from about 10 to 15 students by the end of the year, which we think would be better for Abacus.

Owhiro seems relaxed and accommodating, where as the principal at the other school wears a suit all the time. It's like, "Hey bro, why're you wearing a suit? You're a primary school principal." (To paraphrase Danielle) But that seems to sum up the vibe I get from there. They have all the latest technology, all the students get emails addresses from day 1, for some reason... They have big screen TVs in their fancy gym for their exercise program in the mornings and laptops and i-fads and all the other clutter of modernity. Their motto even has the word management in it. It looks like - from my brief interaction with the place - an incubator of tomorrows corporates.

Owhiro Bay just feels relaxed and welcoming. It has amazing fields and surrounding hills and the drive/bike ride there in the morning will be passed one of the most beautiful coastlines I know. We are excited for this next part of Abacus's life. We're trying to get Lucia into the Kindergarten at the school too, so  they can be together. The older kids get to teach kids at the kindergarten which sounds fun and there's many activities and responsibilities I could see Abacus enjoying; librarian, kapahaka (She is one of the most fluent te reo singers and counters at her creche :) )

Can't wait.

to think it happened on The Parade

We were stuck in most of the various roadworks around Wellington. Every route Abacus and I took was unfinished, as though writer's block was stalling the story of our ride home. Aba was due a toilet break, there was one near the supermarket we were going to and I was probably only making her think more about it by encouraging her to hold on, as we sat idle in the 5 o' clock traffic clot.

We had to park two blocks away from the supermarket and walk and when we finally make it to the public toilet - which was the epitome of 'last resort' - it was occupied and its occupant stayed inside a very long time. As we waited and waited a lady came running up to join us. I noticed she was holding a cash box and looked up to see her bus parked on the main road with its hazard lights flashing and knew I'd have to let her go ahead.

A guy finally emerged from the toilet and left quickly without meeting anyone's eyes.  I let the bus driver go ahead of course and for the brief moment she was in  there, a boy of 8 or so appeared beside us. He said 'I've been drinking coke over there at the restaurant and I REALLY need to pee!' I had to refuse his plea and explain that Abacus had been holding on a LONG time. The bus driver left seconds after entering saying - "Oh good, it's a mess!" and a look she gave exaggerated her disgust and she continued to mumble her revulsion as she walked back to her bus.

I sighed and we entered. The toilet was full of toilet paper and looked backed up. 'You can't go here.' I said more to myself than Abacus. As we exited we warned the boy but he went in regardless and I realised that Aba would have to too.

So we waited again.

The boy emerged after a while, saying the 'stand up toilet still works, she could use that.' I thanked him with a smile and we entered. Aba had to brave the 21st century toilet that functioned worse than its medieval counterpart and after she was done and we opened the door to leave - as though something watching us knew we needed an ending to our story, something to tie it all up - the toilet flushed by itself.

also. abacus has taken to peering over the side of her pushchair, watching the road or the pram wheels or something, it must look so strange to the other pedestrians, this baby just hanging over the side of her pram. When she isn't doing that she is sitting upright, refusing to recline back into the seat, she sits there as though some alert sentry, surveying everything around her, the only problem is when the pram stops suddenly and she bangs her head into her toys in front of her.

also. we went to get a dvd out on her library card, but weren't allowed to because the dvd was rated for adults. haha.

abacus the star

yesterday abacus had her paediatrician appointment. After waiting around for a long time, because apparently we had been misplaced (we were waiting in the room where the nurse had measured and weighed her), we had a really good meeting with the doctor. It couldn't have gone better. Dr Richardson loves Abacus and we would love for him to be in her life forever. He was so impressed with her progress and gave us so much positivity that any doubts we had by michelles report a few days earlier were completely put out mind. He didn't want to bother taking bloods because she was so obvioulsy not affected by any of the things they would be testing for and deferred them for her next appointment in 6 months. Her growth is phenomenal, she is above the 100 precntile in height for downs kids and about midrange in weight, so tall and skinny, bucking the trends - as usual!

She has been giggling a lot lately and giggled a lot at the hospital while we were waiting. She has also taken to a very pained expression in the face of strangers (and potential babysitters), which the dr thought was good. He was impressed also with how she was social at creche, not feeling anxious around other kids or adults, smiling at those she knows, watching situations carefully. We can't wait to visit Dr. Richardson again, as we left he said he had a family of four kids to see next and smiled that he wasn't looking forward to it. He walked out with us and yelled playfully the family name of his next patients and they came running as he bit his finger nails in playful overacting, while yet another of the clan emerged from the play house and followed his siblings into the office behind the dr.

Such people as Dr. Richardson are indespensible in this world.

I already knew the conclusion from the letter, as Danielle had told me. Even so, reading through it myself I think I had the same reaction as her. It was a letter from Abacus's neurodevelopmental therapist to her paediatrician. It went through all of the things Abacus can do and it reads like a proud list, but it's in the last paragraph where it is concluded that this list of accomplishments puts her at the average ability of someone her age with downs syndrome, that kind of takes one back a bit. I don't know why this makes me feel anxious, I shouldn't, but you want to know you're doing the best for her and you wonder what you can do to make things better, we can't know what that means at this point in her life, and maybe it is only because her progress is so meticulously scrutinised and documented that we're exposed to such grading. . .

kia ora.

Abacus had a good day today. She still has a bit of a cough and her face is still pretty oozy around her eyes and nose, and she woke up this morning with a snotlock ( a dreadlock formed by snot), but she is very happy. She went to creche where she met with her neurodevelopmental therapist. She impressed her with all her sitting and vocalising and rolling around to get get things, she is very inqusitive and reaches everywhere for objects out of her reach, even to her own detriment as her scratched up nose will attest. She really likes baths again(in Thailand she had grown some aversion to the small baby bath we'd bought her and we had taken to washing her in the shower with us, which she didn't mind, except she got a bout as slippery as a bar of soap!), since we've been back and in our new flat with a big bath, she loves splashing around and playing with her sponges.

a message from abacus

h, cxz
"".L;.PP

Abacus has been a bit sick the last couple of days, which makes her quite cuddly, but also snotty which makes cuddling less fun. Her voice sounds like a cross between a rusty squeeking gate anda  chalkboard, which occasionally, when said in sharp bursts sounds like a dolphin. While she is more cranky she is also manically happy, last night she cried so much when we put her to bed that we let her watch tv on our bed, she stayed up for another 2 hours happy and wide awake before slowly falling asleep i think she just wanted to be around us. Unfortunately though this morning, after waking up at 5 crying, she had to miss creche, and consequently her neurodevelopmental appointment who was to have a session with her there, but she'll meet her on monday instead.

back

i have completely neglected this site and flickr for tooooooo long!

abacus had her annual heart appointment the other day, we took the bus out in the rain and found our way too quickly and easilly to the cardio rooms in the new hospital, which looks now like a real hospital and not like some menacing soviet era place of suffering, and so were stuck with half an hour between us and her appointment, which would stretch to 45 until we were seen. In the mean time Abacus brought smiles to all the other uneasy people waiting for their own exams in the waiting room, she chirped happily and smiled cheekily and snuck glances at everyone around her, and i read her a book and in the book it had p is for pants, and aside from the obvious joke, it was accompanied by an illustration of pete showing poly his new pants, and he was holding out the front of them and he and polly with broad grins were both looking down the front of petes new pants. hrmmm. in the same book it had tom tripping, and with an absence of any reference to ground, the illustration rendered tom floating through space with toys floating around him, tom trips indeed. i don't know what kind of book this was supposed to be. 

Abacus' was about 15 minutes overdue for her nap when I carried her tiredly rubbing her eyes onto the hospital bed, the contact between the ultra sound wand and her impatiently tired scream were instant and so the sonographer went in search of toys while I quickly made her a bottle of milk in the hand washing sink. The bright flashing millipede only intensified her anguish but she sucked soothingly on the bottle and settled immediately without another peep, suspiciously pacifying herself with her milk while she watched with interest, her own heart in granular resolution, and listened to the mechanical beats accompanying it like some vj drum and bass show. 

The sonographers of course are not allowed to tell you anything, but I heard in a quiet conversation between them, they mention "turbulance", Danielle later translated this to mean the murmor is still present. We have a pediatrician appointment soon, which is when we find the results of such tests, but we are still hopeful the ASD will heal itself within the next 4 years. 

Aside from that Abacus is just going from strength to strength, she sits now like she could always do it, she plays with her toys, rolls around to get to them, she gorges herself on bread and loves marmite with avocado and loves peanut butter, she's happy to see us when we pick her up from creche or when we come home. She talks in her baby language almost non-stop and she seems to get cuter and cuter!

a new year

so a year of life a year of parenting a. of course its all documented here. from the 1.5 kilo fetus that joined the world and lived for a month in a plastic box before venturing out onto foreign shores while all the while developing a personality that was all her own.

in some ways it seems it couldn't possibly have been a year and in others it seems as though all of this couldn't possibly have fit into a single year.

one feeling though, that is a little unusual is the idea that i feel as though a year has passed, that i stand with some sense of perspective, a point of reference to reflect upon. i've never before got to new years day or my birthday and felt as though a new year stood before me, an old one behind, it was an arbitrary date, but i feel now as though everything is meausered out from that day. We could almost make it a new years day, being 2 months premature it's not really a true marker of her progress as reflected by age (a point of relevence up until the age of 5 apparently), so maybe we could celebrate her birthday on June 26th and save this day as something extra, i think we all deserve it. hehe. 

looking back

It's been over a year since Danielle was admitted to hospital with the impending birth of our baby daughter. I had to force myself to read back over the blog from that time, I thought it might still be too difficult to face those feelings again, for while we are a happy family, it is still easy to tap into that frame of mind that I found myself in last year. The below was written exactly a year ago, a day before the birth:

"And so everything changed again. And now we know exactly what's happening we just have to wait for it. A little in limbo, like pausing time right before something is about to happen, while knowing that the time elapsing will do nothing to prepare you or educate you for what is going to happen when you unpause. I think in a couple of days from now, when everything has settled down into some sort of consistency, I'm going to sleep like a hibernating bear."

It's strange to have such omniscient knowledge over ones own past, a dramatic irony which can powerfully foretell the future yet do nothing to stop things from happening. How little we knew a year ago, of the things which lay ahead. In fact when I think about what I said, about getting into some sense of consitency, I don't think that person would have believed anyone who told him he would not find that feeling until many months from there, and many miles too, when he found himself in Mae Sot (especially seems he thought he was going to Panama at that point, he could not have known of the coming flood which would rip through Soloy, killing and uprooting so many, and nor would those in the village for that matter, such is the useless power we hold over those characters inhabiting that past world.) It was not until we found ourselves alone and as foreigners that we were able to understand things from our own perspective, I don't think I realised that, until reading that year old entry. We were until that time beset by situations and people and had little time to consider who we are as a family. That time alone was so important for us, as being able to determine our lives for ourselves still is.

weekend

Abacus and I had a weekend to ourselves while Danielle went for a 3 day seminar in Kaikoura. I went to pick her up from creche at 2, having left work early to do so, only to find she'd gone to sleep at 1:50, and didn't wake up again until 3:40! cheeky girl. Fortunately I had a long book to pass the time with(McCarthy's Border Trilogy - it's  hella good!). We had a great weekend, despite having to negotiate a bus to go to Karori, two things I vowed never to do again, but Abacus needed to go to the doctor. Doctors by the way can be waaaaaay nicer than their secretaries! We did a lot of walking around which Abacus seemed to enjoy. I noticed everyone giggling at her and looked down to find she was smiling at everyone with her cheeky grin. 

She's started to roll around a lot to get to things, she rolled to a chair and lay there talking to it for a long time. She also loves rolling uner the clothes horse and playing with the drying clothes. Like all babies she's much more interested in such things than her toys. She's still balancing for a few seconds sitting up, she tries to push herself up into a sitting position and puts her arms in the right place, but they are just that bit too shortt that she can't get up all the way! 

It's almost been a year since we met here face to face. Hard to believe, in many ways it seems like it wasn't long ago, and in many it seems like all this couldn't have fit into a year.

confronting obstacles

Abacus has brought so much to our lives and others. She has forced me to challenge things which I was once somewhat passive to, forced me to consider things whether I'd like to or not. 

I remember Danielle saying how when parents are asked about their children being born with normative impairments, whether they would wish them to be born differently, they reply, "No, because I love them how they are." But she raised the point that there is something more than that, more than just the child and loving them for who they are, it is something about a door which opens onto world from which you cannot come back, you see the world from a perspective you had never before imagined, it is an enlightening place that I would not choose to leave if I could. It has illuminated even the most careless shadows of ignorance.  

I write this because of an incident that happened, where a comic was placed on a public noticeboard, I won't say where, but I knew who had done it. I wrote them the email below.

"I understand it was you who put the comic on the notice board about mentally handicapped people. My daughter as you know has Trisomy 21 and I found the comic to be offensive. The offense goes deeper than just a point of taste. It is difficult to see the future of my 10 month old daughter be mapped out in such crude portents. These little pieces of somewhat socially accepted ridicule add up to a wall that puts the subjects of those “jokes” on the outside of normative society. This division is through no fault of their own and the most hurtful part is that it is perpetrated by those who have the mental faculties to make better judgement. 

Having Abacus has been the greatest and most rewarding challenge to any prejudice I have ever harboured. While you might not consider the comic you posted to have been prejudice, it is this misunderstanding of what prejudice is, which proliferates it, and those on the receiving end never miss it."

I wanted to share this with you because these things exist. And if I can impart any of the knowledge I have gained from knowing Abacus, that it can be proliferated in whatever way to cut a path along which her journey through life may be less impeded. 

Just so you know, the person I wrote the email to is not a bad person at all. They were extremely apologetic for it, a gesture which choked me up with its sincerity. I'm sure that it will have a lasting effect on them and me too, to know that standing up for what I see as being wrong has positive outcomes. Abacus has such a profound effect on the world with which she has scarcely even begun to interact. 

A strange coincidence

yesterday morning I went to WINZ to apply for accommodation supplement, (for everyone living in less socialist countries, that's when the governement helps you pay for your rent/board/mortgage - provided you fit within certain requirements which are often arbitrary and let many people slip through the gaps) and so i was meeting with our case manager which isn't all that remarkable, except that Danielle was studying with a girl from her class that very day and found out the girls partner works at WINZ and it turned out that her partner was the very person who I was talking to. wierd. 

teeth and sitting

so much happened today. this morning danielle felt two sharp ridges growing out of abacuses bottom gum. What's funny is that she's really chill about it, after all the times we blamed her restless nights or grisliness on teething that never materialised, she now has teeth coming through with no fuss.

Then this afternoon she was practicing sitting, which she was doing on our knees and was happily screaming ever time she lost balance, then we put her on the floor and she sat for a good 15 seconds, I think she will be sitting up by her may 5th birthday! She's doing so well. 

Abacus is a pretty happy little baby, she smiles a lot. We have moved into our ideal flat, its perfect and we feel more settled now after 2 days, than we did in our last flat after 6 weeks. 

We drove to Palmerston North for a easter and abacus slept for an hour, waking up halfway along the journey and going back to sleep for another hour after I guess being bored. She had a good time at her great grandmothers house, with her grandparents and aunty and uncle and cousin. On the way back abacus was awake the whole ride, talking quietly to herself and playing with her little sunflower soft toy. We finally went to Denny's for dinner, it's in a town a bit too far from Wellington to go to for a laugh. Abacus loved it, she was really happy, and fed herself a piece f breadcrust, holding on to it with a fist and ripping bits of it with her gummy mouth, she really enjoyed it. She finaly fell asleep just as we got home.

We've been giving her a bit of sitting practice with her little wooden chair as seen above. It might take a bit longer before she gets there on her own.