The Graduate

Reuben sports his England shirt and graduation certificate from UCLA's Early Intervention Programme

Did you see the kiss curl top left? Or the cupid's bow lips?

Reuben in the garden resisting my desire for a photo op with his certificate. I tried the Jaws impersonation to divert his attention, but he insisted on dropping the certificate away just to mock me, signing "Please, please". Boys this little man is fully in CHARGE! I have to say, I really don't go for posing too much, but c'mon guys, just a wee pic with his certificate doesn't do any harm. It's rare for me to capture Reuben on the right side of his face which is unable to show expression, so it's good to see him looking so good here and i have no desire to shut out the slowly closing stoma in his throat that has saved his life and will remain like this, a little open til we feel he's completely out of the woods.

Reuben has never been one to crave too much of the limelight and when it's shone brightly upon him, he becomes a little shy. And yet there he was on a huge screen, the projector running through the last 18 months of his life at UCLA school, each photo beautifully selected by the teachers, from the little introverted boy with fragile health, to the big boy with his high top Converse with hidden orthotics, signing and babbling away, seemingly not a care in the World.

It may seem a little early for such a service to be warranted the title "graduation" - I guess I would feel the same too if I were standing in your shoes - but it marks the end of early intervention for Reuben, a period of rehabilitation and development from prolonged hospitalisation and a chronic genetic condition (CHARGE) in the areas of speech, socialisation, physical, fine motor, feeding, well pretty much everything. Add to this his 16 surgeries to date, and I hope you'll agree that Reuben is no less a hero than the fireman whom we later visited today.

A beautifully fitting service about which I'll write more later, the cakes, slideshow to the sound of Somewhere over the rainbow/what a wonderful world by Israel Kamakawiwo, how could we keep a dry eye? I read out one of my poems, "I didn't know" and my thoughts before his original planned graduation, a quick final run around in the playground for some pics, but I feel it's time not to have him hang around with me and Callum, but to move to pastures new.

My mind drifts back to your first days at UCLA. Unable to walk unassisted, no ability to move your vocal chords and sound a word, cry or laugh, in terms of what you have achieved, it feels like a lifetime away. And yet did I envisage you walking, talking, laughing, climbing, jumping. I had my high hopes, I knew there was an Everest to climb and at times the peak kept cruelly being displaced, higher and higher, so it felt like we would never reach the summit, and yet today, on your penultimate day at UCLA, we can stand with the flag waving and look down to the peaks and troughs, the deep canyons and joyous crests and truly marvel at what lies below us. It's a beautiful view.

he fire station was just waiting for us, catching sight of the gleaming red fire truck (aka fire engine) parked outside, how could I resist taking the boys in and how amazingly accommodating the heroic station officers were. Hey, one of them even shot me lying on the same bumper in my dress and heals, dressed up was I for Reuben's big day and the boys' faces were too priceless as they watched one of the (rather handsome young) firemen (oops, sorry, forgetting myself for a bit here), slide down the firemen's pole. What joy!

I DIDN'T KNOW
I didn't know the meaning of downy  Until I felt your skin at birth  I didn't know you knew all your school friend's names in sign  Until I asked  Nor that you could reach down and pick up a book and stand back up again unsupported  Until you showed me I didn't know you could jump without aid  Until the music played I didn't know there were 2 lights on in the car  Until you signed "it's the same"  Nor that you knew the origins of pain  Until you signed ow-wee at a tiny long faded scratch on your hand I didn't know you knew the signs for cloud, windy, lightning and rain  Until the weather changed I didn't know you knew about wipers on cars  Until the first rains came Nor did I understand the power of "yet"  Until you taught me patience  I didn't know the sweetness of your voice  Until a miracle in June I didn't know of courage  Until you let me see  Nor did I know of defiance  Until you became a toddler I didn't know you could tickle yourself  Until you showed me how I didn't know you felt unconditional love  Until I saw your love for Callum  Nor did I know the best smell in the world  Until I smelt your hair this evening I didn't know I had it in me  Until you brought it out.
If all these are things I didn't know because I've never asked, seen, heard, touched or smelt, I can only dream of what it is that you will continue to bring to this World and I can only feel emotions cement inside my heart that you are here for great things, Reuben. "

- October 2009, Mama

Penultimate day at UCLA - Los Angeles Family Photographer

My mind drifts back to your first days at UCLA. Unable to walk unassisted, no ability to move your vocal chords and sound a word, cry or laugh, in terms of what you have achieved, it feels like a lifetime away. And yet did I envisage you walking, talking, laughing, climbing, jumping. I had my high hopes, I knew there was an Everest to climb and at times the peak kept cruelly being displaced, higher and higher, so it felt like we would never reach the summit, and yet today, on your penultimate day at UCLA, we can stand with the flag waving and look down to the peaks and troughs, the deep canyons and joyous crests and truly marvel at what lies below us. It's a beautiful view.
I started out fairly calmly, but then realising during Circle Time that this would be the last time we would sing "Reuben came to play today...", I couldn't control the rush of tears. I didn't manage to sing this song to you a final time Reuben (tomorrow we are only in for graduation); only my fingers could do the talking in sign in respect of a little wobbly chin and stiffled chords.

"The best and most beautiful things in the world cannot be seen, nor touched ...

but are felt in the heart." Helen Keller

Destruction

27 stumps

I've been haunted the last few days regarding the new development at UCLA. In life, we pick our battles to fight and this is one of mine.

In the name of development, 900 new student units, I counted 27 mature stumps sawn off today in the grounds outside Reuben's school at UCLA, this a university that prides itself on being forward thinking and environmentally responsive. I gave up counting after this, the job of photographing was too painful, but I understand that the number of destroyed trees is around 90. I gave up too counting the rings because when you reach 50, the full impact just weighs too heavy.

Why could they have not been saved and replanted. My subsequent wading through reports and speaking to the press officers only confirms that there's a 1:1 replacement project in place with fancy palm trees on the architectural sketches. What effect do palms have on offsetting greenhouses gases? Little. And if a tree is replaced with a sapling, the net number of trees still declines. I find this so atrocious in a city such as LA which is struggling to breathe, let alone in a century such as this.

Talking to one of the teachers afterwards, Reuben had been pointing to an area of the playground as if to say "Where are the trees?". This all happened whilst we were in intensive care for those 8 days and had I been there, I would have been hugging and trying to climb the trees to save them.

In our walks into Westwood Village past them every day, Callum would always sign "trees" and I'd sign "I say hello to the trees we see..." from Signing Time. I didn't have the heart to sing today.

I somehow wanted to preserve a bit and I've put aside a huge sewn off chunk with the view to collecting it tomorrow and having it made into a sculpture. Rarely have I felt such a heavy heart over a disastrous environmental impact so close to home. And why do I feel like a lone eco warrior right now?

Last day of school

Schoolfriend Maxsim as Santa. One of my favourite Christmas shots: the joy that radiated from new boy Maxsim's face brought a smile to everyone else's

With Nursie Dollie

 Schoolfriend Kenneth on his graduation day

Reuben with teacher Keith

They always do things so beautifully at school, graduations (Kenneth's today, above with candy cane) and the Holiday party. The boys really aren't that keen on Santa it has to be said and are trying to understand why this strange guy in red with a beard keeps popping up all over the place and wanting them to sit on his lap.There's a great cultural and developmental mix of kids at the school and it's always so joyous to see them graduate, pre-school ready!

(Did anyone guess, I really like Christmas!)

Tiny to, my how you've grown...

Elizabeth, Oscar Antonio and Fernando in the UCLA school grounds





Dad Fernando and Oscar Antonio

Grandfather, Alturo, former President of El Salvador, during his momentous speech at school. Callum and I have spent many mornings in his company and he always refers to Callum as "tete" which I've ended up doing too

My dearest friend at the UCLA Early Intervention Programme, Elizabeth, had her son's graduation today as each child must leave the programme at age 3. 'Twas not a dry eye in the house during the ceremony, culminating with a video of the last 18 months of Oscar Antonio's days at school. I was honoured to take their pics save the last one of Reu and I. Grandfather, Alturo, has been there every single day for his beloved grandson and recounted in his speech, exactly how many days and hours that meant along with how many hours they'd missed because Elizabeth was late for circle time. He was the former president of El Salvador, but in retirement, has become one of the most genteel men you could meet.

Am I supposed to feel sad and sentimental today, like a friend has moved on and I'm left behind? I shall so miss seeing them day in and day out, so miss Alturo watching Callum grow too and his wonderful fondness for him (and all babies and toddlers!), so miss Oscar Antonio's blossoming, so miss my daily friendship with Elizabeth.

Despite the challenges of Downs Syndrome, I've watched Oscar Antonio grow from a baby to a walking and talking toddler, happy, sociable and utterly charming.

And with bittersweet, mixed emotions, I wish them a happy future and delight at their son's graduation through the programme.

All about Reuben

Signing pumpkin with pneumonia

Reuben, 3 days after the start of his treatment for pneumonia and on sparkling form today, back at UCLA School, signing away at circle time, excelling in his developmental assessment with his occupational therapist and beyond excited with his speech therapist this evening, saying words such as apple, car, baby, dog and flower.

Looking back to last week, Reuben had an assessment at UCLA school. Entering the small office of Dr L, he looked ominously at the small orange blocks that he was supposed to stack at that moment, just because the Dr told him to. And in true Reuben, defiant style, he was having none of it. The Dr asked "Can he put blocks into a bucket?" which made me smile to myself and I thought, well, Reuben, let's show him what you can do and, speaking softly into his left ear, I say "Reuben, can you count the blocks?" (Kristi: we learnt this task from you, with thanks), and Reuben dutifully, because he'll do anything for his mama, starts to count in sign 1, 2, 3, 4, 5..., placing his signing fingers on the little orange blocks in turn before him. "And if you ask me nicely, Dr L, I'll count to 25 in sign for you too?"

"Can you point to the boy's eyes?" continues Dr L and Reuben takes my index finger and points to the boy's eyes in turn.

"What is this?" he says, pointing to a bird, and Reuben takes my fingers and makes the sign for bird.

Can you put the red circle in the hole and Reuben, with a side smirk, tries to put it in the red square hole.

We all laugh of course whilst Reuben is thinking. I can play you too, Dr Loo!

On reflection, I wonder how many typical kids are asked to perform to cues. I truly understand the importance of these assessments, but we do need to give our kids a little bit of creative leverage too...

Reuben back at school (14 September)

Or perhaps this post should best be entitled Manic Monday. I am inducting a new nurse in the morning since Fanaye is unable to work Mondays with Reuben and the new nurse* is very late so I am all prepared to not go to school since I can't take Callum into class after circle time and that would mean Reuben would have no nursing coverage.

I had 4 blissful days by myself with the boys ahead so I really had my hands full, but utterly loved the time with the boys. I wasn't able to bring my camera along to school because of everything else I had to carry and because I knew I'd be all over town afterwards and didn't want to risk losing it, so instead, the above is more of a record of the before and after.

8:30am: Set up the pic of the boys and I just as we're about to leave home and Jenn kindly presses the shutter.

8:45am: Leave for UCLA driving along the freeway.

9:30am: Arrive at school just as it's starting and I'm immediately filled with the warm feeling I always get from being in this wonderfully nurturing school, the teachers full of endless patience for the chilren ages 18 - 36 months. Have Reuben press the door button and he walks independently into class. The return to school goes beautifully well, Reuben settling right back in as if he's never been away and happy to see the familiar faces of teachers and friends. How far he's come from the early days when he was so very unsettled and I wondered if he'd ever transition. The boys sit on my lap for circle time, Reuben signing and singing along to the songs, making the choice of "Wheels on the bus" and later signing "Frog" because he's greedy and he wants another choice too. He anticipates Jack in the Box when all the children lie on the floor, waiting for their loving parents to shoot them up into the air when somebody opens the lid, his absolute favourite moment, his turls curled in excitement and his fingers tapping the floor, counting down the moments to life off. And then we watch from the Observation Room, Callum and I, Reuben actively engaging in playtime with the other children, at first studying them as he does and then becoming engrossed in the toys they've put out for the day. After snack time, it's out to the playyard, the wobblin bridge, the gorgeously quaint tea house surrounded by cedar trees, the climbing frame and swings. After lunch, we finish with closing circle time, "and this is the way we say bye bye", Reuben saying "bye bye" to his teaches and friends. Hey! It's wonderful to be back.
12:00pm: After school, I get the boys back into the car with the inept nurse, take the boys around Whole Foods with Reuben pushing the stroller although insisting on skidding with his knees, an act so beautifully boyish I half fret over and half hide with unsurpassed love. Callum tries the lovely taster cheeses on display.

1:15pm: Load the boys into the car for the 30 min drive to Occupational Therapy with Julianna.

2:00pm: A good session at OT but I walk in to find the nurse has left Reuben unattended on the changing mat.

3:00pm: Load the boys into the car and drive for 50 mins to Children's Hospital.

4:00pm: Drop off nurse near hospital. Make an additional stop at ENT for them to look at Reuben's bleeding ear which it seems has been caused by one of his very many bumps banging against his left ear tube. Get a prescription.

4:15pm: Rush to the other side of the hospital with the boys and all the equipment and paraphanalia that accompanies us to make a Speech/Feeding appointment. It's something we're trying out, but I cannot imagine commiting to this long term along with the rest of the day; the pressure is just too much too to go to Children's every week. That said, I want us to give it a try. So the initial session goes well although no great surprises in approach, it's just that our speech therapist doesn't cover feeding and our Occupational Therapist doesn't cover speech so this session will cover both these therapies.

5:15pm: I've forgotten to eat today so I break a 20 year tradition of not going to McDonalds as there's one in the hospital and I know I won't get to eat when I'm home. Callum sucks ecstatically on my vanilla milkshake and I remember why I haven't eaten in McDonalds for 20 years prior to these hospital days.

My head is totally booming by this time, a thunderous roar going on inside it and yet I still have the hour long drive back from Children's to go through, all the while driving West and into the sun. It's one big thing about Los Angeles that totally exhausts me: living close to the beach, we're always driving into the Eastern rising sun for appointments in the morning and into the setting Western sun in the evenings.

I have to call our Speech Therapist Johanne to cancel our 6pm appointment at home as I still have an hour's drive ahead of me.

6:36pm: Arrive home 10 hours after leaving. It makes me beg the question: how much therapy is too much? Get all the gear out of the car, clean the suction machine, Gtube feed Reuben, bottle feed Callum, give both boys a bath and massage, let them have a play on the big bed. Leave a tidy playroom though for Nursie Jenn as we haven't been in it all day.

Bedtime boy antics

10:30pm: Nursie Jenn arrives. Godsend. I can go to bed for an almost repeat day on Tuesday.

* that nurse since sacked for leaving on a school excursion without Reuben's life saving suction machine. Her boss too is sacked for the manner in which he dealt with it. Running around Westwood Village in the scorching heat looking for them having left Callum with another Mum is a traumatic experience I'd rather not go through again.
I think it makes sense to have the Best chocolate fudge brownies ever post straight after this.

Last day of school & we're building a special needs pre-school!

Perhaps because Reuben's school is part of the UCLA university campus, the terms are slightly different from the unified school district. And as such, we were able to enjoy a final week at school, actually wishing we hadn't been away from school at all, and today, a picnic for all the children of the early intervention programme.

How utterly delightful to enjoy time with Reuben's school friends and parents in the gorgeous grounds under the cedars and pines, the former reminding me of my own school convent grounds (more on that later). With dappled shade and a balmy breeze, unusual humidity for LA, we enjoyed summer fayre, baked and made fresh that morning. We don't usually get an opportunity to enjoy the garden setting and playgrounds with the children so feasts like this are a great way to end the school. Nurse Fanaye is back with us working a few days a week and was able to help with Callum's voracious appetite whilst I walked the wobbly bridge with Reuben. At circle time, Reuben had been signing away to all the songs as we've been focusing on with him and it would have been a treat for Teacher Belinda to see. Honestly, it couldn't have been more blissful than this morning!

Yesterday we learnt of plans to create a pre-school (3-5 years) at UCLA for special needs children but at which their siblings can also attend and which would be private (at the outset due to it being a new school) unlike the Early Intervention Programme which is free. The school would provide continuity for children with special needs throughout their formative years. I would of course work my damndest to get Reuben sponsored for the pre-school. The UCLA school is licensed for pre-school, but doesn't have funding so we've established a funding committee with the aim of raising $1m, no small feat, in order to get the school up and running. I'm empowered to set up the blog which will be our think tank for all matters related to setting up the school and to help with the marketing, my former profession. The teachers are equally experienced in the pre-school setting, the grounds are beyond fantastic and would be redeveloped with pre-school equipment and with an agenda which builds on each child's individual strengths, whether musical, artistic or academic. UCLA provides the classrooms gratis. Any advice on some serious fundraising for the new school and how I could secure a sponsored space for Reuben would be much appreciated.

My intention is to return in September upping our 3 days a week to 4 or possibly 5 half days. I've kept him back perhaps because of the time I've wanted to be with him, to focus on our signing together and for him to enjoy time with Callum. Reuben responds well to seeing regular faces and routine, but is also exceedingly comfortable and flexible when it comes to spontaneity, things I love to do on a whim when an excited urge hits me. If we do the 5 days, then we'll miss out on at least 1 1/2 day at the deaf school and therein lies my dilemna. Reuben does now have a few spoken words, mostly consonants with vowels attached so signing is his predominant expressive language and I don't see that changing anytime soon, but that said, the programmes, structure and environments at UCLA and Marlton are like chalk & cheese. I wonder what you think on this? Should he go to the deaf school 10 mins drive away (1/2 days) and become fully immersed in signing or reap the rewards of all there is to offer at UCLA, with me homeschooling him as I've done. I tell you, that boy can sign the ABC in a flash, much faster than I can with my super-fast typing fingers and I'm his blooming teacher! Wow!

Meanwhile, night nursie Jenn has been doing an amazing job of helping us get through the jetleg of the last week and the 4am rises of our boys.

Photos to follow...

The little hours between circle time and home time

I step out from the Observation Room where I've been watching Reuben at play in school, his eyes transfixed on the other children and having a much happier day than yesterday, and stroll through the grand campus at UCLA. The sun is beating down hard, the temperature in the mid 80s and folk are out walking in bright springtime colours after a brisk cold patch over Christmas. Yes, it is January. Callum is nestled in the blue sling and sleeping soundly. I'd been talking to a few of the other mothers whilst in the Observation Room about shared experiences in the early months of diagnosis, between us all, a plethora of medical and development conditions to summount.

There are a couple of hours that sit between mother's circle time at Reuben's school and the closing circle time, time we can use to sit in the Observation Room or be free. It's a 30 minute drive back home from school so it's time I will, in time, make time to decide what to do with the time. Some exercise could best be placed on the agenda and it'll be time to do all of the newborn activities I was never fortunate enough to do when Reuben was born. It makes me think of all the new mothers in hospital being in that same bleak place we once were and how that special time was so crucially snatched away. I am thinking of them now and my heart is going out to them.

What shall I do on such a glorious January morning? The children are now in the playground, basking in play under a canopy of cedar trees which remind me of my old rambling Convent school grounds. There is a little hole in the fence and I shriek to myself in delight at the opportunity to peek in on the world that sits behind the fence like Mary in the realms of the Secret Garden. Where is my little boy? The children now are being heralded into the Magic School Bus, a bright yellow trolley where Reuben has the front seat next to a pretty girl with blonde curly locks. It is an extraordinary experience to watch the bus go by, their little happy faces smiling away, joyful voices, Reuben signing All Done for no apparent reason. It makes me tearful with utter delight. Back in the Observation Room, I watch him do one of his little signing sequences, Airplane-Car-Train-Bus-Boat and I know he signs when he is content, so he is content. The little boy is slowly unravelling from his cocoon and the beautiful butterfly within begins to spread his wings.

Reuben's 1st day at school, meet & greet

Signing to the head teacher

The arts & crafts room

The classroom

Feel exceptionally fortunate that Reuben's joining such a great school until age 3. During the 1:1 meet and greet with the head teacher today, I watched Reuben open up like a flower in the springtime, and I fondly stole furtive glances into the accompanying physical development playroom as children with warm, happy faces sat in circular play singing and signing nursery rhymes. The gardens are glorious, a Hansel & Gretal house nestled in the cedar-shaded landscape. I feel a sense of lovely sense of optimism about what school will do for Reuben and how he'll benefit from socialisation with other children. I hope he will continue to warm the hearts of those he meets, stays healthy enough to enjoy the experience and learn, and makes some lovely friendships along the way. They are my greatest wishes.

* * *
Today Reuben starts the early intervention school programme at UCLA (University Hospital LA). We're lovingly joke that he's got into UCLA, one of the nation's best universities.

Reuben starts officially in January and today's our first day's orientation. Thereafter, I'll be confined to sitting in the adjacent observation room behind the glass wall. The school practices Total Communication, so the children will be signing as well as speaking which is a wonderful thing. I hope he's somewhere in the middle of the class in terms of development, with children to aspire to physically and children looking up to him on signing. I like to think once I'm comfortable with the programme that I can use the time to get out and about with Callum doing fun things in town as our 12lb Christmas moose will soon want a little more stimulus I'm sure than having mama stare at him all day.