the adventure continues…
I guess those who follow this blog will have noticed my absence. I chose to take a break from writing here and from reading all the blogs I follow for a while over the Summer break. I am still catching up on my blog reading. I have had many blog posts and ideas of what I could write here flittering in and out of my stream of consciousness. And because there has been such a gap since my last blog post, there is a fair bit to catch up on here.
I will try to do it some justice now.
I think the most pressing thing to address is Pinky’s new pseudonym. Towards the end of last year, I took a poll. I decided a 9-year-old boy needed a different alias than ‘Pinky’. It was cute when he was little and it worked as a reference to him and his brother as a sort of crime-fighting duo of ‘Pinky and Perky’. But it was time for a change.
The results pointed towards approval of ‘Captian Nintendo’. So until he requests a new name, Captain Nintendo it will be!
Captain Nintendo, Perky, the Husbeend and I had a good Summer. We did a lot of nothing. A lot of relaxing. We had visits with friends and family. Captain Nintendo went to several days at the CSIRO School holiday program, which he once again really enjoyed. I think he liked Zombie Day best. There was some small scale dissection (a bull’s eye) and learning about anatomy (in order to be ‘good Zombies’, which is an oxymoron if ever I heard one) and the ultimate experience of getting zombie makeup, to look the part. It was seriously gross. Of course he loved it. When he got home, it freaked Perky out, but he did grasp the concept of makeup and was quickly reassured. It freaked me out, too, when he knocked on the front door, and as I opened it, the Husbeend grabbed Captain Nintendo roughly by the shoulder and said in a gruff, cranky voice “I told you to STOP THAT!” as if to imply the ‘bruising’ and ‘bleeding’ were a result of abuse. I was taken in for about half a second but it really was that convincing.
Another adventure from Summer was our 3 night stay in Sydney. It did not go well. Perky had meltdown upon meltdown. We kept him in the hotel as much as possible. We did manage some fun but it was the kind of ‘getaway’ that required a long rest in the comforts of home to recover from! The main thing that was so awful was the Sydney ferry incident with the ‘ignorant man’. I even chose to write a rant to him that I posted on facebook. If you missed it, here it is:
“To the ignorant, beer-breathed man in the Manly ferry on Sydney Harbour on Tuesday 11th January: when you try to talk to my son when he is having a meltdown, and I ask you politely to please leave us alone, don’t ignore me and keep talking to my son. When I repeat my request, don’t tell me I am not doing my son or myself or anyone else any favours by not listening to you. I do know my son better than you. I know more about autism than you. I don’t care how long you have been a coach driver for. I don’t think it polite for you to call me ‘Doris’ and ask how old I am. I don’t think it polite that I have to ask you a third time, more forcefully to leave me alone. I also don’t like you coming up to me 10 minutes later just as my son has calmed down to tell me that I am rude to assume you know nothing, nor to be asked again how old I am, and to be called ‘Doris’ in your patronising tone. When I tell you that you are being rude, please don’t turn around and spit your words (and your spittle) at me that I should ‘take the hint, because you are walking away’. I find it astounding that you then went out on to the deck and abused my husband about how dreadful I am. I hope you fall under a truck, you hideous excuse for a human being.”
Yes, he made me mad. I was most mad at myself, for being so polite to him. I have decided that if that ever happens again, I will respond differently. I hope not to get arrested. I saw the man as we left the ferry at Circular Quay. I had an irrational urge to chase him, and crash tackle him into the harbour. It is a nice fantasy that I am still visiting from time to time.
So now we are in week 3 of the new school year. After a rocky start for Perky, I have chosen to change his enrolment to part-time. The main reason is to see if a bit more down-time (i.e. time away from peers that are great but hard work for him) will reduce his overall anxiety, health and general wellbeing. He started this yesterday (because he was home sick on Monday and Tuesday). It went well. He goes to school until the end of the middle session, and I pick him up and we do about an hour of work (as that is all he is missing out on, as I don’t count missing the afternoon recess!). He enjoyed it. We did play-based learning with his new mobile set. We achieved fine motor skill work, following instructions, sharing, helping, counting, adding, subtracting, storytelling, asking and answering questions, and relaxation. I think that is pretty good for an hours work. My approach is to use the OT and speech therapy guidelines from his therapists to continue to build all of these skills.
Captain Nintendo has the same teacher as last year (hooray! Because she is awesome) and so far, he has had a great start, working well and even getting homework done on time and without much fuss.
It feels a bit like a dance – figuring out what suits everyone is the tricky part. Keeping up will be the challenge for me, I suspect!
“We live our lives with labels. Our names, for example. Perhaps a diagnosis. But what shapes us from within? What quality do you want to define yourself by?”
– my notes from a Stephanie Dowrick writing workshop I attended earlier this month.