The days have passed in something of a blur since the girls started school in January. We’re slowly easing back into our school year routines and I even managed to do the double school drop off without anyone being late yesterday! But the one thing that I nearly forgot to do was have “the talk” with Vegemite’s teacher. So, I’ve scheduled a meeting and will do it after school this afternoon.
“The talk” is telling Vegemite’s teacher about Lil Z and explaining the impact it has on Vegemite – which could carry over into the classroom. During Vegemite’s first year at school, it didn’t even occur to me to have the talk… and by the time I realised I probably should have said something to her teacher, it was too far into the year, and I didn’t know how to introduce the subject. I’m sure her teacher noticed that Lil Z was “different” during school drop off and pick up, but she probably didn’t know how to raise the topic with me, either. So, it ended up as a bit of an elephant in the room.
Last year, I was determined that things would be different. So, I arranged a meeting with her teacher. It started off a bit awkwardly – mainly because all the eloquent and intelligent things I had intended to say flew out of my head the moment we sat down. But I stumbled through and managed to get my point across.
What I want Vegemite’s teachers to understand is that Lil Z changes things for Vegemite.
On a very basic level, Vegemite might be dealing with things that would alarm and terrify other kids her age, before she even gets to school in the morning. For example, last week we had barely turned the corner on our way to school when Lil Z started to have a seizure. I pulled the car over to the side of the road, but before I could even make it to Lil Z’s side of the car, Vegemite was out of her car seat and in full seizure-response mode – sick bag in one hand and holding her sister’s hand in the other. Z came out of the seizure just before the 5 minute mark (when we would have to give her emergency medication to stop it) but was very unhappy and immediately started crying and screaming. I continued the drive to school while Vegemite held her hand and watched for signs of more seizures. When we arrived, Z was still inconsolable, so I dropped Vegemite outside the school instead of walking her to her classroom. It occurred to me that it was a rotten way for a six-year-old to start her school day, but there was nothing I could do about it…
It also means that Vegemite is dealing with more worry and stress than most kids her age. It doesn’t happen as much as it used to, but her sister still gets taken away in an ambulance; she still gets admitted to the hospital (which means that not only Lil Z disappears, but I do as well). And as she gets older, Vegemite becomes more aware of the risks. When Lil Z had pneumonia earlier this year, Vegemite asked me if she was going to die. I told her no, and we discussed how children like Lil Z did sometimes die of pneumonia. The conversation ended with me promising to tell her if Lil Z ever became so ill she might die. Not the kind of promise that most parents make to their six-year-old. But I hoped that if she knew we would tell her, she wouldn’t have to worry as much every time her sister was sick.
I am also worried that Vegemite could be teased or bullied because of her sister. We chose to put her in a small school with an active parental community because we hoped that once the other children and parents met Lil Z, she would simply become “Vegemite’s sister” and wouldn’t always attract stares and questions. Although it worked well last year, when Lil Z came along to drop her sister at school every morning, but as she gets older and mobility becomes a greater issue and now that Lil Z is attending her own school, she isn’t around Vegemite’s school as much as she used to be. And as she gets older, her disabilities become more apparent.
Last year, after my chat with Vegemite’s teacher, there was an “incident” in which a boy made fun of Lil Z in front of Vegemite. The teacher immediately intervened. When I asked Vegemite what he had said, she replied “he made fun of her hair”. I don’t know if this was really the case or not, but if it was, well, the kid might have a point. Lil Z has the craziest hair I’ve ever seen… But it was good to know that her teacher was willing to step in straight away.
Letting Vegemite’s teacher know also opens up the door for Anya actually talking about her experiences as a sibling of a child with special needs with her peers.
Last year, she gave a presentation to her class on Epilepsy Awareness Day. I’m not sure it was terribly educational as such (there was a lot of focus on the fact Epilepsy Action Australia had given her and Lil Z teddy bears), but it was good experience for her.
It is important for children like Vegemite to be able to explain their sibling’s disabilities – in fact, it is recommended that you practice a response to the question “what’s wrong with your sister/brother” with them, so they are able to respond confidently. Vegemite explains most of her sister’s disabilities in terms of epilepsy – which is fine because Lil Z doesn’t have a conclusive diagnosis of anything else.
I also hope that by discussing Lil Z with her teacher, she can reinforce in class what I try to teach her at home: that she needs to treat Lil Z with respect, love her as she is, and to not be embarrassed by her. The first two are easy with Vegemite right now – she is a loving and caring sister, who only occasionally has bouts of sibling jealousy. But as she gets older, she does get embarrassed – especially over the fact that her sister is prone to vomit anywhere at any time. It’s tough – especially since it sometimes embarrasses me too…
So, I’ll go into the meeting with her new teacher this afternoon with these goals in mind. And hopefully, even if words fail me again, I’ll be able to explain what I want to achieve. These conversations are never easy for me – even more than three years into our special needs journey, I still find it hard to talk about Lil Z in a non-clinical way. I can talk endlessly to doctors and therapists – and obviously writing about her doesn’t bother me – but it is hard to go into a conversation like this completely “cold”. And I know it isn’t particularly easy to be on the receiving end either.
Still, I’m hopeful that this year is easier than last year. And perhaps by next year, I’ll have my speech memorized. Because I’ve got many more years of “the talk” to go…