Sunday, 15 July 2012
It is tough being the sibling of a child with special needs. It is even tougher if you have some special needs yourself, in a similar-but-different way to your big sister. Ask Cubby. It seems like his formative years have been spent watching his sister in therapy, then having to go through the same thing himself.
So when your world is chaotic, and you don’t always have as much attention as you like, you tend to attach yourself to something that you really care about: a special interest. A thing that marks you out from others. A way of expressing yourself. A way of being yourself, independent of all those other demands.
Cubby used to adore Thomas The Train/ Tank Engine, but as he has developed, he has opened up to other interests. He likes cars (and Cars), super heroes, and Phineas and Ferb.
Although it is shown on South African TV, I had no idea Phineas and Ferb was big here until I heard they were coming to our local mall a couple of weeks ago. I knew what we were going to do that day- we were going to meet them!
I collected Pudding and Cubby from school, and explained to them what was going to happen. I explained that there might be bright lights and loud noises. Probably lots of people and waiting in line. They still seemed game.
When we got there, I knew it was an experiment in sensory overload. We waited gingerly on the periphery as I tried to figure out a plan of action. The queue was pretty big, as families waited in line to get their photo taken with Phineas and Ferb. It was free, so some older kids had wised up to this, and kept cutting in to go round and round again.
All fun and games for Phineas and Ferb until we spectrummy three turn up.
Cubby made it clear that he was not going home, and Pudding seemed to be okay too. We joined the line. I tried to make as much space around us as possible, as we don’t like being touched by strangers. That isn’t the majestic plural either- I hate it every bit as much as my kids. Of course, some scheming local kids decided to take advantage of the space around us by filling in the gap, but as long as we made it (eventually) to the front, I wasn’t too concerned.
One of the unfortunate aspects of hypotonia, is that Pudding and Cubby’s muscles tire easily (except when I want them to tire out, of course), which makes standing around for a long time particularly uncomfortable. They decided to lie down, which didn’t exactly help with the whole people cutting in front of us thing. Nor did it do wonders for my stress levels, but we somehow made it to the front unscathed.
I had assumed that Pudding wouldn’t want to actually meet Phineas and Ferb, but she surprised me by telling me that she would- and that she was going to touch them. For a tactile sensory-seeker, there is no concept of not touching giant felt people. What she hadn’t counted on, however, was that Phineas also wanted a hug/ handhake/ high 5.
Only Japanese cats with no mouths would be granted such largesse. As she explained to Phineas, Ferb, and the rest of South Africa:
“NO YOU*DON’T WANT PHINEAS AND FERB- YOU* WANT HELLO KITTY.”
Pudding still has a lot of trouble with her pronouns, but I don’t discount the possibility that she was actually commanding the promoters and people of Johannesburg to replace this duo with her esteemed special interest.
A couple of women rushed on to the stage to help out, but unless I wanted things to get really out of hand, the only way to calm things down was to scoop Pudding up and remove her from the stage. I was going to let Cubby have his moment!
I left a bewildered Cubby to hold hands with his heroes and have his picture taken. It was awesome too- but I can’t find it anywhere. Afterwards we found some beanbags to crash on. The kids got the proprioceptive fix they needed, and after a few moments, we were all regulated again.
We were all calm enough to draw on special Phineas and Ferb paper. Again, Pudding chastised a confused staff member for not having Hello Kitty paper.
All was well. My breathing had returned to normal. Pudding decided to tell me then that it was,
“…Pudding’s turn. Want to go to Hello Kitty now.”
And you know, she was right. Because it is tough being the sibling of a child with special needs. It is even tougher if you have some special needs yourself, in a similar-but-different way to your little brother.
In our never-ending game of ping-pong, in which we parents are the ball- it was Pudding’s turn to be served. I’ll tell you about that tomorrow.