Terracotta warrior

February was a tough month for us seizure wise.. especially following a completely seizure free January! He had 5 in February, the last one after a futile attempt to get a sleeping eeg. We were asked to keep him awake past his semi regular midday sleep, then Heather had take him to the children’s Hospital, where a team of strangers got him upset by trying to glue on the eeg leads and attach a hairnet. This boy does not like his head held or his hair messed with! Long story short, Heather and the team gave up on the eeg, and he had a seizure on the way home. Sometimes it feels like hospital is more effort than it is worth! Next step will be an overnight admission just for an eeg. And we need to increase his dose of seizure meds. We’re doing our best to keep it to just two medications.

I’m feeling under time pressure to teach Jai communication much better these next 2 years before he starts school proper.. there’s so much to do with him. repeat words every morning and afternoon, read some books (luckily he loves them), name some objects inside and outside, assume he can understand the ones he’s heard a lot, practice some key word sign, show him some proloquo (iPad communication tool).. It’s all very slow going. So far, he responds to maybe 20 phrases or key word signs, so not sure what his understanding is of all of the others. I’ve just got to treat it like the final Emergency Medicine exam, keep up the routine, do 10 hours or so of active communication every week, and trust the rewards to come in another 1 or 2 years. But I need to make sure he has fun just being a kid too, keep spending time singing songs or laughing with him, hanging out with him in the garden, or at the playground. Happily, help has arrived.. Heather and one of his new childcare teachers are going to learn some Key Word Sign, and everyone is starting to work more on communication. We also now have a Play Therapist who will visit every 2 weeks, in addition to our regular Speech Therapist. I can see the wheels turning in Jai’s mind after just 2 weeks, so there’s hope things will speed up with this extra help.

Jai keeps on striding undaunted through his battles as he always does! From his point of view, life seems pretty sweet. He’s loving bopping to songs, especially from Play School. Walking with more confidence, using his right hand better, getting into more mischief. Getting messy outside with pebbles, dirt, and sand. He managed to climb himself into one of our terracotta pots in the yard during outside play last week. As you can see, he thought this was a great joke. :)

Playground in a pot

El ano neuvo

We’re in Borneo for the end of the year, spending time with Heather’s extended family, and her Mum in particular. A good time to think about all of Jai’s achievements this year..

The big one, of course, is that Jai transitioned from crawling, to using his walker, to now, where he can walk maybe 10 metres or even longer without any help! He still gets down on all fours and crawls for a while or rests, which is never an issue in Melbourne, thank God! (I read in a post from the PMG awareness Facebook group in the US that one family got kicked out of a mall, because their child needed to crawl for awhile to take a rest! I’m thankful that, so far, there’s been very little overt prejudice against Jai).

As well as getting around more easily, Jai’s started developing his own agency in other ways.. telling us non verbally when he wants to go out the backyard, or for a stroller walk (meaning visit the playground), or eat crackers or cookies, or to read a book.

He’s playing with a much wider variety of things — cars and vehicles and stones still, but also musical books and toys, more recently also playing with animals and dinosaurs. Also playing with me and Uma, instead of just bedside us. He shows preference for some favourite pages in books by kissing them - often tractors and trucks, a favourite striped fish in one of his books.

He made the step to childcare and quite enjoys it, without too much separation anxiety. He has also become comfortable with Jimena, our wonderful part time nanny.

I’ve started trying to teach him some key word signs, and he attempts to sign some words.. “more”, “again”, “train”, “dummy” (for sleep), though mostly using his own personal signs. He seems ready for learning more signing, and even (fingers crossed) starting to learn iPad communication next year..

I’m looking forward to the start of another year of progress... happy new year, everyone!

The start of independence

Jai is now taking a few steps without the walker. Wide based and not especially graceful, but wonderful to see nonetheless. It gives him freedom to get around the house and let us know what he wants, so enhances his communication in important ways. I leave the back door open for him sometimes, so he can choose go in and out of the garden. He loves playing with stones and dirt and water, so he creates a proper mess, but nothing a bath and a vacuum can’t fix!

Jai’s brain is soaking up so much at the moment, he is desperate to learn. He shows me when he wants to read a book and can gesture for some of our songs, or when he wants to go to the park. He knows where the biscuit jar of scotch fingers is. He’s started to wave bye-bye pretty consistently, and has started making efforts at a couple of other signs too.

I did a really excellent course on Key Word Signing (Auslan based) on the weekend and will start to introduce some new signs gradually. If Jai can learn even a few, it will be great for him, and i can introduce them to everyone at home and at childcare.. fingers crossed!

I sometimes feel like Sisyphus rolling his boulder, but the hours of reading and playing and sharing space with Jai have slow rewards.. the joy and pride when he finally learns something new is hard to convey. And the appreciation in his hugs, his laughter, the shine of his eyes. Albums of smiling photos, my keepsakes, cheer me each night.

Mornington

School holidays.. we rented a house for a few days on the beach of the south coast of Victoria, the Mornington Peninsula. Was a bit chilly much of the time, but the sun came out enough for us to jump in the pool and visit the beach. Various friends came to visit, giving us the excuse to go to the wonderful Peninsula Hot Springs complex where we jumped in various bath temperature pools in the midst of copses of trees and birds. And we had the compulsory lunches at wineries, one embellished with a long and rambling sculpture walk.

Jai enjoyed the space and the beach, and seemed okay with the trip despite his characteristic car sickness appearing every so often.

Our last stop was the dog friendly beach at Rye. A picturesque jetty, gentle waves and a soothing beach. I took Jai for a walk there, and promised to bring him back with a dog of his own one day. He smiled sweetly, as if he understood.

Our little village

Jai is very determined with his walking. He takes his Kay walker up and down the corridor turns it to get through doorways, practicing getting up and down using tables as well. He takes a few short steps without the walker, balancing with his arms like he's on a tightrope. I've been working on his balance at the playground, with swivelling seesaws and unsupported swings. He likes it, despite the occasional half fall. 

He's using his hands a lot better now. Pressing buttons more easily and purposefully on some toys, and on his musical unicorn. This may seem like a small thing, but it's a big step in Jai being able to control his environment, and make choices, and means there's a chance he'll be able to communicate via tablet one day... fingers crossed! He's babbling more, but still no understandable words. 

Jai's village is growing. We have a new nanny, Jimena, who comes and gives us a break a few hours a week. She smiles a lot and reads and sings to Jai, takes him to the playground or other outings. And the childcare workers greet him with real enthusiasm when he arrives for his half days every Thursday and Friday. They make a big effort to include him in the day to day activities, and he's slowly getting used to them. And of course there's Uma, Noah, Grandad, and the cats. 

Despite this, Heather and I have been mostly taking this journey alone. Each of our routines with Jai is pretty tiring, often monotonous, sometimes relentless. Then we need to find energy for Uma too. And a bit more for my Dad. So, we just get through week by week, save some time to relax in front of the box, and start again. Not sure if we can do this forever. Burnout always seems just around the corner. It would be good to be able to meet some friends at the park or the city, but in practice, most of our attention needs to be on Jai, and it seems selfish to impose. We get by with the occasional visitor, and the occasional break.  

I have been aware that it is easy to leave Uma out when I am usually mentally and/or physically spent. I have been making it a habit to take Uma to the city every 2-3 weeks at least, or sometimes we all go. She likes the playground near ACMI, and dumplings, and bubble tea. It's nice taking the train and talking and joking with her. On Saturday I took her to the Melbourne International Film Festival Kid's gala. She got her face painted (tiger), we got gala bags with popcorn and stickers, and saw 3 short movies. Uma had the loudest laugh in the cinema! We spent a few hours afterwards wandering the city streets, without any real aim. I enjoyed the bounce of Uma's energy and curiosity and laughter. I came back recharged and ready once more to spend time with Jai. 

3 years old

Jai's birthday was last month. He's getting more grown up in steps and starts. Getting through winter, which is a bit hard for him because he likes to get out every day, but it's cold and windy, and gets dark early. You know how it is. So, more inside play, more books and blocks, and songs, and tv. 

We went to Mt Buller for the snow for a weekend, first time either kid had seen the snow! Lots of precious moments, and a few less so... Uma seeing the snow covered cars and trees on the way up, her joy at seeing and stomping in the snow when we got there, the first snowball (made on our balcony), waking up to snowfall before breakfast (and throughout the day). The joy of tobogganing and snowball fights. Jai enjoying the feel of holding the toboggan with his gloveless hands, feeling the snow and laughing. Unsurprisingly, cold hands made him upset after a while. Uma going down the toboggan run, and having races with me. Jai going down the run with Heather. Making friends with strangers at the heated pool. The pub with decent food and wine, and, most vital, a beautiful cosy fire.

These offset by the long tiring drive, and the ritual vomiting of both kids.. Jai several times on the windy mountain roads; Uma, leaving it till we pulled up in the twilight to the final parking lot, a big spew all over the driver's seat! Advanced mindfulness 101 for parents!