Nine years old

It has been a few years since the last post. But things have changed pretty slowly.

Jai’s goes to a school for special needs kids now, and is in a class with usually around 6 kids. He mostly doesn’t mind going there. A fun car ride, and he likes his classmates. When he gets there he can be a bit reluctant, but he usually gets over it. His favourite things at school are bike rides and swimming, and he sometimes enjoys art and music too. Communication at school is still pretty basic, but he somehow manages to express what he wants most of the time.

At home, Jai has decided he likes different set routines with his 3 carers.. myself, Heather, and the third is Hamed, his latest babysitter, who he loves very much. He knows he gets lots of cuddles, treats and fire truck videos from Heather. I’m pigeonholed as the one who reads to him, shows him cards, takes him for most of his stroller walks and bike rides. Hamid is for longer car trips to the swimming pool or nursery or the indoor playground. So, we all do our different roles, and Jai has worked out ways of asking each of us what he wants.

Our stroller walks are embellished by Jai touching hedges, fences and walls as we stroll along. He likes hearing the birds, seeing cats, and especially trains. Sometimes we board a train and travel to a random train stop north or south, to explore another suburb. We’ve tried most of the banana bread and spanokopita in our adjacent suburbs, and have become connoisseurs of both. Jai also loves fans of all sizes and shapes, water play, and fire truck videos.

Jai’s grandma, Nenek, is here for a few months, so Heather and I are taking the chance to go on a short overseas holiday. We’ll see how he goes with Nenek, Uma, and Hamed. I’m a bit nervous about this big step, but we need some time out, time to put the tools down and regain some energy. Fingers crossed they’ll all be okay. When we get back, we’ll be getting an e -bike so I can ride around with Jai on back. We hired one for a few weeks and it seems to have got a big thumbs up. Jai immediately relaxes as soon as he gets onto the bike. He looks around and takes in the passing scenes, and gets upset if the ride’s too short. It’s clear that he likes it. We’ll try visiting some markets and farms once we get back, when it should be finally getting warmer outside.

Jai doing his best Tom Waits impression

Five years old

Jai turned 5 years old this month. We had a small party for him, and for the first time, he seemed excited as we unwrapped the presents and blew out the candles. He was especially excited by a new tractor toy, which he has been playing with every day since.

These last few weeks, he has been showering us with smiles and laughter, and playing in a much more interactive way… especially with car/truck/tractor/helicopter toys, and with different types of balls.

He’s also paying a lot more attention to his augmented communication device, by watching and concentrating, though not by using the keyboard to express himself (not yet at least).

And paying much closer attention to the real world… trains, trucks, and buses, dogs and birds.

Not sure if this will translate to being school ready, but we will visit the school and have a proper think about it.

One thing I am sure of… these last few weeks of Jai’s joy and laughter and energy fills me with happiness, no matter what other worries I have. Happy birthday, Jai, :)

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Back on track

So, on my last post, I was feeling quite disheartened. Things have changed for the better in the last 2 months.

Firstly, I’m getting more support with teaching, both from Heather and Jimena (Jai’s babysitter for 10 hours a week). Support both with reading and with teaching augmented communication, which means Jai is getting a more consistent message. it makes a big difference! Even after a few weeks, the change is clear and he seems to be learning new things every day.

Secondly, I have had to concentrate on myself a bit more. I injured my knee, which you could say is bad timing, since I have a 4 day, 50 km walk in Colombia booked in 10 weeks time. A walk I have dreamt about for months. Strangely enough, my knee injury has meant that I have something to focus on which I have some control over. Physiotherapy each day, graded walks a few times a week, swim or gym when I can… If I do the work, I can quickly see progress, and in 10 weeks, my reward will be the chance to do an amazing trek. I am definitely wired like this, happiest if I am seeing progress in my life, at least in some parts of it. I must remember this in future, and remember to balance Sisyphean tasks with fruitful ones.

For now though, I am back to enjoying Jai and the curious, joyful soul that is his essence. Enjoying working with him, teaching, and establishing routines.. but equally importantly just sharing space, playing, and exploring our world together.

Water play at home

Going nowhere

All the hours I spend hanging out with and teaching Jai are vanishing into nothing. He is not really progressing either in communication (my job) or independence (a shared job between Heather and me). In some ways he is going forwards, and in some ways backwards.... he is no longer willing to put himself to sleep unless exhausted, no longer able to feed himself water without help, using less key word signs, making less effort at vocalising; luckily he is making some progress in other ways.

I think the lack of consistency and routine, partly due to my shift work, is unhelpful. And I’ve been getting mentally exhausted more and more often in the last few months. Some days I have no energy to go through our routine. Showing Jai book after book is okay. Pointing out the names of toys, rooms, objects, talking as I walk with him is okay. But coaxing him to pay attention to the computer programmes; trying without success to get him to press buttons, to make choices, to understand he can communicate like this; showing him key word signs ad infinitum; playing learning games he doesn’t want to play. I’m getting less and less enthusiastic. I need a break. Maybe Jai does too.

What’s the bright side? Firstly, he’s still a pretty happy, easy going boy. Secondly, I visited the school I hope he can get into in 2021. It was amazing.. so full of care and patience, small classes, 6 children with simple routines and songs to get them focussed for the day ahead, then individualised learning tasks. Three amazing and committed teachers for these 6 children. I was able to spend 15 minutes watching the class after a tour of the school. I can see Jai going here and feeling a sense of belonging. This would change everything. If only he can get to the stage that he can join in.

Deep breath. Fingers crossed. Start again.

Rest and recuperation

Heather’s Mum is here helping out for a few months, which means an extra person to share the load and much needed rest for me and Heather. I’ve been using the chance to spend more time with Uma, our wonderful 7 year old daughter, who sometimes gets left to herself a bit too much (because she can look after herself better). She does her share of entertaining Jai, and has a wonderful child-optimism that he’ll start talking soon.

Jai’s childcare is going well.. he starts off a little bit clingy when I drop him off, and often needs a few hugs and some encouraging words as i make my way out of the door. Most often, if its an okay day outside, I take him to the garden which is a never ending source of wonder for Jai.. stones, bark, sand and plants. Just add a packet of mini scotch finger biscuits and his blue bear and he forgets that he’s missing home!

Despite his lack of speech, he has made a few friends. Two of the girls love keeping him company. When Heather or I pick him up, there’s a chorus of “Jai, your Mum’s (or Dad’s) here!”, and a few minutes later as we carried him out, a chorus of “Bye Jai” follows him out, the kids waiting patiently for his two handed waves. This Monday, I picked him up early, causing complaint from one of the boys, who wanted to help the teacher feed him his snack. A wonderful nurturing nest, and he’s thriving in it. Smiling lots, getting plenty of hugs from the teachers, and generally getting indulged in every possible way.

Jai's journey list.. testing

I don’t think my post “terracotta warrior” went through.. so sending this through as a test. Press “read on” at the end of this message to read the post (use the “older” arrow to scroll to the terracotta warrior post).

And please feel free to unsubscribe if you don’t want to be on the list; otherwise there’ll be an update every 2-3 months. Cheers, Keith