Today is the first day of second term. JC is up and ready by 6:15am. He wants his iPod with its promise of fan fiction and knows how to get it.
“What about a shower?” I ask.
“I already showered last night after my hair cut and dad said I can shower tomorrow morning again.” I groan, without opening my eyes. Why does Dee promise these things without discussing it with me?
“Okay,” I say.
Urgh, back to the routine of the school term – up at 6:45am (which in reality is closer to 7:45am), get breakfasts, make lunch, take JC to school (silent trip), do housework (yeah, right!), pick JC up from school, silent trip home, make dinner, eat, tv and bed, and then start it all again the following day. God, my life is boring!
This time, of course, I have to visit Jay in hospital. I take JC to school and he listens to his horrible white-noise music whilst I listen to the radio. I want to say something to him, but can’t think of anything that might inspire him to hold a conversation. I wander how he is feeling about returning to school, but choose not to enquire. I drop him off a full 25 minutes before the school bell.
“Good bye my boy. I love you!” I yell as he walks away from the car. He doesn’t even acknowledge me.
I have read many books on autism. In most of them they concentrate on getting a diagnosis when the child is young and the importance of an early intervention. Most of the case studies used are children that are young or pre-teen in age. They don’t mention what it is like to bring up an adolescent who is on the spectrum. Well, frankly, sometimes it sucks. You want to connect with your child, especially at this time when they are starting to begin to understand adult concepts, but not only do you have the autism to deal with, you also have the prepubescent teenage hormones to contend with as well. It’s not a great mix, I can tell you.
I drive away heavy hearted. I decide to improve my mood by spending money (how else?). Jay needs some new underwear so before heading off to see her I pop into K-mart. I wander around and eventually decide on some panties, a bra and some socks. I also decide on some fruit for her and some games for us to play in the hospital – card games, chinese checkers, dominoes.
I arrive at 10:30am. Jay is still very depressed after last night’s ordeal. She ended up in the Pregnancy Assessment Unit because she had quite regular tightenings and some painful contractions. After a 45 minute wait she ended up having an internal examination that showed she was still only 2cm dilated and that her cervix was still long (despite being open). She was embarrassed and felt that she had caused a fuss for nothing. She phoned me at 10pm in tears. I managed to talk her through it, but arriving at the hospital now, it is clear she is still feeling really down.
“Are you still feeling down, love?’
“I feel stupid. This whole thing is stupid. I’m never going to give birth early. Why can’t they just let me go home?”
“Well, if you make it to 32 weeks, they will let you go home.” I begin to think that after two weeks of being 2cm dilated and nothing happening, that there is a real chance of her going to full term. I secretly start to get excited even though I know it will be a long 12 weeks. “And if you make it to 32 weeks, Jay, that will be absolutely amazing!” The look on her face tells me that she doesn’t share my enthusiasm.
It must be difficult to see past being stuck in bed – to when she will get to hold her son, healthy and well, and know that it is because she remained on bedrest, that she carried him to where he was safe enough to be born. I know she cannot see that far ahead.
“I bought some stuff for you.” I plop the bags of goodies on her bed. She looks at them unceremoniously and I feel a little hurt at what I perceive to be ingratitude. “Have you had a good look?”
“I bought you some nickers, bra and socks, plus some games and some fruit to keep your energy up.” Just in case she missed something.
“Thanks, Mum.” I can see she isn’t impressed, and why should she be really. She is fed up, bored and most of all stressed out from not knowing when her baby son is going to arrive and what the outcome of that might be. God, I’m selfish sometimes!!
“How about we play one of the games?”
I haul out the tin with the four card games – Old Maid, Crazy Eights, Go Fish and War.
“I don’t know how to play any of those, Mum.”
“That’s okay love, they will have instructions and I used to play these with Gogo and I am sure it will come back to me. These will be great for you to play with Baby C as well.”
We decide on Old Maid first. We deal up and start playing. Before long, the events and depression of last night are gone and we are having a good laugh at who is winning and losing. All four of the games keep us entertained and in good spirits for a good hour and a half until Jay’s lunch arrives.
“We have a spare lunch, Sarah, would you like it?” The nurse says.
“Yes, I would.” It is some veal concoction, but I am hungry and it does not taste too badly. I like the vegetables – pumpkin and potato.
After lunch, I wheel Jay downstairs for some fresh air in her wheel chair.
“Why can’t I walk?”
“Because you can’t.” Sometimes, the mother response is the only one that is needed.
We order hot chocolates and talk about what we need for the baby. We have had this conversation before but I want to start getting things on a more regular basis. I would like Jay and Em to have everything they need for when Baby C comes home. I write the list down in my note book.
After the excursion I take Jay back to the ward and notice that she is sleepy. It is time to go and let her have a nanna nap. I kiss her goodbye and leave.
I drive home. I have an hour to kill before I have to pick up JC. A friend of mine has emailed me about a program for children on the spectrum who are at risk of disengaging from education. I wonder if JC is disengaging from education or if he is just disengaging from society, or even just me.
I drive to pick him up. He keeps me waiting a good 15 minutes. “Where have you been? ” I say, trying not to sound too irritated.
“Just walking around the oval, listening to my music.” If you can call that music.
“Okay, in you get. I thought I would treat you to a Red Rooster meal today.”
“Is this because you want an ice cream?” Damn! He knows me too well. Next door to Red Rooster is Hungry Jacks and I love their 50c ice creams. I feel ashamed that he thinks that I want to treat him just to satisfy my own needs.
“No, it isn’t, it is because I’ve spent all holidays up at the hospital with Jay and I thought it would be nice if I treated you since I haven’t had chance to do that.” This is, in part, true.
We drive in silence for a bit. “I am very mature, you know,” JC says to me.
“Are you? In what way?”
“I just use big words in context.”
“Can you give me an example?”
“No, not really, but I can use words that other people don’t know what they mean.” I don’t doubt this, but I haven’t experienced very many “big” words from him recently, although he says things that blow me away all the time.
“So, about the holidays…”
“Fiji, I want to go to Fiji.”
“Well, yes, I know that, but I am thinking of July. Where would you like to go in July?”
“We can’t go to Fiji in July. That’s January’s trip – maybe. How about the Worlds, would you like to go to the Worlds?” I am referring to the adventure parks on the Gold Coast.
“Nah, maybe another year.”
“What about Disney World in Florida?” I have no idea what makes me say that. “Not for July, but maybe in January.”
“Yes, I guess. There are hot chicks there.” I laugh. The typical 14 year old boy shines through every now and again. We discuss the likelihood of there being more good looking girls in Florida than in Melbourne, but he remains convinced that the girls will be better there. We discuss what Disney World is like and I try to give him a picture of when I was there some 20-odd years ago. He mentions that there is now a Harry Potter land, either in Disney World or on its own, he isn’t sure which, and he doesn’t know if it is in Florida. I did not know this. We move on to discuss J.K Rowling and her nett worth (around $1 billion) and how foolish the 12 publishers that rejected the first Harry Potter manuscript must feel.
I am actually having a “normal” conversation with JC. I am in heaven. I love the fact that we are laughing together and actually discussing a future trip together and even, maybe, writing a story that might make us rich one day. Yes, people, we are dreaming together! Oh, how I wish I could bottle this moment and bring it out every time I feel so disconnected!
All too quickly, we arrive at home. JC grabs his red rooster bag and heads indoors. I grab his school bag and head inside behind him. He walks into his bedroom, closes the door. He emerges in his boxer shorts to put his lunch on a plate. I sigh. Back to our normality. But I am not sad. Because I had a moment with him. And that moment, as any parent of a child on the autistic spectrum will testify, tends to carry us quite far.
No Baby C and a conversation with JC. Oh yes, today has been one mother of a day!!