Happy Chin New Year everybody! Hope you survived Christmas? Well, obviously you did, or you wouldn’t be reading this, would you?
I have made two New Year’s resolutions:
- To practice gratitude more often
- To learn meditation
I’ve already made a start on number 1, I’m grateful I got through the holidays.
This time of year, so relaxing for many, is a time of high stress for us. We have our Happy Chin home with the family, which is lovely for him and us. It’s also fraught, tense, relentless, chaotic, funny and exhausting. Pretty much like Christmas with children usually is. Only now they’ve grown up and can’t be put to bed at 7.30.
Having him with us for extended periods of time does make me wonder how I managed all those years when he was living with us full time. You need all your energy and wits every moment of every day. He does not accept that you are tired, have a headache or just want to be left alone for two seconds. You need to be fully there for him, mentally tough and resilient at a time of year when I am usually running on empty after a busy year
On the whole, we had a good time. We planned lots of outdoor activities and the weather was beautiful.
Happy Chin discovered the John Butler Trio and we were relieved the musical choice for the week was one we could live with. His favourite song is ‘Zebra,’ which he found on my Spotify feed. He liked to jump on his mini tramp with the blue tooth speaker glued to his ear shouting ‘bum!’ at regular intervals.
Mr August figured out this was because the song goes ‘da da da da da dum, da da da dum” and HC heard ‘bum.’ Have a listen, it’s on YouTube.
After the song finished, HC would come bouncing into the kitchen, find my phone and point at the screen saying ‘Spotify.’
In an effort to increase his vocabulary, and to ensure that carers would know what the hell song he actually wanted, I decided to teach him to say Zebra.
I did get him to say Zebra once or twice, then he’d bound off, listen to the song and come right back and say ‘Spotify.’
‘Yes,’ I’d say, ‘which song do you want on Spotify?’
“Dat one,’ he would reply.
‘You need to say the name. Here’s a hint – it has black and white stripes.’
So I grabbed the power bill and drew a zebra (poorly) on the back.
‘Look!’ I shouted ‘What’s this?’
In desperation I opened up the laptop and googled zebra images.
‘Look,’ I pleaded, ‘what’s this?’
‘Horse,’ replied Happy Chin.
‘Zebra’ by the John Butler Trio is now known as ‘Horse’ in our house. I anticipate phone calls from carers in the coming weeks asking me what to do when HC asks for a horse.
He’s also really enjoying clothes shopping and is a highly motivated and decisive consumer. He definitely knows what he doesn’t want, at any rate. We visited H&M to exchange a pair of shorts he’d received for Christmas that were too big. The minute we got off the escalator he shouted ‘T shirts!’ with great delight (HC loves T shirts and has at least 30 of them) which put paid to any ideas I had about getting shorts (which he has about 5 of).
I think I showed him every single pair of shorts in the store, and to each one he yelled ‘No!’ So I gave up and we bought him two T shirts, although I did manage to get some shorts into the mix by pretending they were for the Lamington.
Of course, it isn’t Christmas until somebody cracks, as the saying goes. And that person was of course me. Mr August had to work between Christmas and New Year’s and although difficult behaviour (also known as ‘poor decisions’ in our household) had been at a minimum thanks to parental vigilance, distraction techniques and bribery, one day I was too exhausted to keep it up. Mayhem ensued, crockery was smashed, doors were slammed and my response was simply to go out to the back deck and burst into tears.
I sat there sobbing and indulging in some why-me-ness for about 20 minutes, during which time the Lamington gave me a cuddle and offered me a cup of tea, and Happy Chin cleaned up all the broken crockery and the bucket of fresh apricots he’d tipped all over the floor. Miraculous!
Then I made my next mistake – thinking I was strong enough after all that emotional upheaval to jump straight in the car and take two dogs and HC to the beach for some exercise. On arriving at the beach, HC refused to get out of the car. I waited for 15 minutes by the car before giving up, putting both (disappointed) dogs back in the car and gunning it for home. Quickly figuring out that we were not returning home via the shop for a treat because he’d not done the right thing and exercised his pets, HC amused himself by taking his seatbelt off and trying to get out of the car. I pulled over, switched off the engine and told him we weren’t going anywhere until he behaved safely. This didn’t go over well and he started punching me.
Strangely enough, I wasn’t afraid like I had been in the bad old days. Just desperately tired and really pissed off that we were back in this place after all these years.
Long story short, I phoned Mr August, told him to come home from work, got in my car and drove. I didn’t know where I was going, I just knew I had to get away. It had been a long time since I had felt so lost, I thought those days were over. For want of anything better to do, I pulled over at the Botanical Gardens and took myself off to the Japanese Garden, where I found a quiet spot, sat down and proceeded to have a quiet cry.
The strangest feeling of disconnection came over me that afternoon. I really can’t explain how odd it is to feel yourself entirely separate from the rest of humanity. I wandered through the gardens like a ghost, watching all of the normal people enjoying the beautiful sunny day and each other’s company and I felt completely outside of human experience. I felt as though no-one could see me, no-one knew who I was or where I was, no-one could understand me and that I was unfit for human company in any case. I felt like a wraith. It was a very peculiar, lonely and isolating feeling and one I have had many times before. It stayed with me for days.
I like the company of others, I’m an extrovert, but I wonder how many other parents out there have felt sometimes that it’s just too hard to be among people, even close friends that you love, simply because their lives are so different from yours? Sometimes I have turned down invitations just because I know that I will sabotage the evening, I won’t be able to stop from complaining about the latest behaviour or seizure or sleepless night, even though I know my lovely friends would understand.
There is a real loneliness to special needs parenting, and am very grateful to have a community of friends who are doing the same job as me. It’s just that at Christmas time, they tend to be busy with their own special needs kids and probably feeling as tired and overwhelmed as I am.
Christmas is a very lonely time for many people, I just never thought I’d be lonely when I was technically not alone. For most of the day during the holidays, HC is never more than one room away from me, I can always hear him, and there is rarely more than a 20 minute break between one request and another. He stands in front of the shower while I bathe and outside the toilet door while I, well you know…
We got through, as we always do. This wasn’t even our worst Christmas. Most of the Christmas presents survived, for a start. I only had one major meltdown. Most importantly, the gin stocks held their ground, although we did run out of lemons at one point.
Luckily being a special needs parent teaches you not to sweat that kind of small stuff. Besides, I don’t mind a dash of perspective with my gin and tonic.