Ever since I first started dating my husband, I have also been ‘involved with’ his family. It is a lovely, loud, funny, very large, Catholic Lebanese family. When my husband wanted to explain how everyone was related to everyone else, it took him forty minutes to draw up a spreadsheet on Excel. And it took me about five years to really learn everyone’s names, faces, and relationship to everyone else. So as you can imagine, things like Christmas can be quite large, in the same way that Mariah Carey quite likes attention. There are sixty first cousins, just so you get the idea.
I have always loved all the family occasions. Maybe because my own family was so small (I only had three first cousins), or maybe because these guys were so warm and accepting, I just kind of dove in. I went to everything and hugged everyone. We invited people over and went to their houses. It was awesome.
Then Michael came along, and all of that stopped being so fun. I started dreading every little get-together, even one with only ten (only ten!!!) people. Every time we had any kind of event, Michael had a meltdown when we got home. I started to really resent everyone that insisted on holding him, crowding around him, passing him around. It was totally unfair towards them of course. But every time it happened I’d get home to a baby in meltdown mode. I had to spend at least forty minutes walking up and down the balcony just to slightly calm him down.
Last Christmas was a low point, for me. It was just after his diagnosis and we went to a big family Christmas, with about fifteen little kids all under five. Seeing them sitting and playing, or running around and laughing, was great. But also very painful. Because at the time Michael was sitting in a room by himself, sliding remotes around on the floor. Or up the wall. That was it. He wasn’t interacting with anyone, he wasn’t playing with anything, and most importantly he wasn’t learning.
I remember that was one of the few times in my life that I cried in public. I just watched him doing that, and I thought, why did this have to happen to him? All those other kids are sitting there, having fun, and learning all the time, without even knowing they are. Michael has never hurt anyone, he’s the cutest, most affectionate little boy, who only spreads love and hugs and kisses. Yet here he is screaming because he’s bored of sliding things around, and then screaming if I try to show him something else to do. Always for me the most painful thing wasn’t the repetitive behaviour, or the sensitivities. It was this lack of play or learning.
One of Brad’s lovely aunties came up to me and hugged me, and said ‘don’t worry, he’s only very mild and he’s just too smart. That’s all it is.’
Well it wasn’t. I knew that. He wasn’t very mild, he was moderate to severe. And if he was too smart then he was doing a fantastic job of hiding it.
But the great thing about having such a low jumping off point is how excited you get at each achievement.
This year we’re doing Christmas three times. We had one for my husband’s mother’s side of the family, and we will have one for his father’s side on Christmas day, followed by a small one for my family on the 27th. At our house. So yes, life has changed in the past year!
The first time Michael enjoyed Christmas
Last Sunday we had Christmas with about fifty people. Lots of delicious food. Some of it Michael actually ate!! And if he didn’t it was allergies not sensitivities that stopped him!! So thank you food program.
When we got there Michael played chasies with his first cousin. And he initiated. It was beautiful! He ran up to him, tapped him, and ran away screaming with laughter. Then if his cousin came close to catching him, he would run up to me and ask to be picked up, still laughing. It was brilliant.
What did we do differently?
Well, for one thing of course the year of early intervention has helped. His IQ is still under 70 but only slightly, and at least it is now measurable. Of course I don’t actually care about IQ itself, just the fact that it means he is now starting to make sense of the world around him.
We also practised peekaboo and playing chasing games with him as part of therapy. Also spending time around his cousins every weekend, and just kids in general at the playground, meant that he was getting used to having peers nearby.
The power of lowered expectations
Our expectations were also quite different this year. I didn’t look at what other children could do that he couldn’t. Or at least I tried not to. I could look at how happy he was doing what he could do. And of course I could see if he was getting overwhelmed and take him across the road to the park, where he went on the swing for about half an hour.
We don’t build up special family events as much as we used to. Really, we just want to get through the day and have some time to chat to people. We take turns looking after Michael while the other one of us catches up on all the latest gossip. Or these days we can hand him over to family, and he goes for a walk in the pram or has lunch. (For tips on how to help your family members develop a great relationship with your little one, see this article). Then when we get home, we crash and recover.
iPads are great
And I am much easier around technology and screen time these days. When Michael was a baby, I fully intended to not give him any screen time until he was two years old, and then limit it to half an hour. Are you laughing at this? I know I am. Because Michael needs that iPad, it is his only way of ‘escaping’ if he is over-stimulated. For some reason stimming only over-stimulates him further (I have no idea why) and running backwards and forwards only lasts for so long. So if he does get anxious at family events and we have no escape route, an iPad for half an hour can work wonders.
What makes it easier for us is that Michael doesn’t care about change or routines, and in fact enjoys exploring new places. As long as there is enough space for him to run around, he is pretty happy anywhere. What makes it harder is that if there is something wrong, we can’t explain anything to him. Social Stories are way beyond his understanding at this stage.
So Michael was very different this year. He socialized, he played, and he didn’t have a meltdown. I could even say with a straight face that he enjoyed many bits of it. Yay, time does make all things better!
There is still a long way to go
I don’t want to emphasise the change too much here. There is a long long way to go still. For example, he understood ‘being chased’ but he didn’t chase his cousin back. And I can imagine it would be boring for a kid to just chase someone else all the time. He had no other ways of playing with other children either, and just didn’t understand their games. Of course they were almost all under five so there weren’t that many games going on. But even things like playing with bubbles was just not interesting to him so once the chasing was over, he went back to his own little world of running backwards and forwards.
He still needed one to one attention all the time as well. At one point I was left looking after him and his cousin at the same time (eight months older than Michael) and that was a disaster. Even though it lasted for about ten minutes, the cousin wanted to go on the swing. Michael had been on there for well over half an hour so it was only fair. But once I took him off, of course, he went into full meltdown mode. As I tried to swing his cousin, he would walk in front of the swing, completely ignoring any instructions to move. And threw himself on the ground, screaming, over and over. Turn taking hasn’t been on the program yet, clearly.
When his granddad came to take the cousin off my hands, I was exhausted and took Michael back to the house. That was ten minutes, I thought. With a grown up, very well behaved little boy. How am I going to do this with Michael and a baby, whenever that happens? Future Julia’s problem, I concluded. Sucks to be her!
Starting to reclaim ourselves
Anyway, we have started to return to our old selves this year, but with modifications. We entertain, but most of the food is bought. I love cooking, but Michael comes first. We go places, but usually we take turns staying with Michael, or go in the afternoons (no one has been bad enough in life that they should be exposed to night time Michael). And I don’t tense up every time we go out with Michael – mostly because he is starting to enjoy it much more. Thank you iPads! Thank you therapists! And thank you, time! Bring on the new year!