From the beginning

Ok, I need to be a little more coherent. Let me try and lay it out as it stands.

First things first, we live in Australia. That is necessary to point out as the schooling and funding needs we have are specific to here.

My son looks different. People treat different looking people … differently. It is hard to understand what I mean by that unless you’ve actually seen it. I have had kids run away crying, kids and adults come up and touch his face without respect for personal space, teenagers laugh behind hands and point and grab each others’ sleeves in a less than discrete fashion. I have had old people cross themselves or block my way with offers of an impromptu prayer and laying on of hands. The most common thing I get is well-meaning people asking with genuine concern and curiosity if he can be “made better”. (Better than what, exactly?)

Up until now, this has not been any issue whatsoever. He is surrounded by a family that adores him, and a social circle that welcomed him since before he was born. All of the questions and assumptions were dealt with before he was aware, so he now has a comfortable space to just be him.

When I was in the hospital NICU with newborn Corbin, I got a visit from a lovely lady and her six year old girl, who also has LM. We formed a close friendship and she was a valuable source of knowledge and reassurance in those early days. It was so nice to know that despite her appearance she was a bright and friendly girl, doing well at school both socially and academically. Part of this success was attributed to the school, a small community-run secular private school. I had heard good reports of this school before and we decided we could afford the fees. The added bonus of course was a community of parents at least vaguely familiar with LM, reducing the need for explanations. We started Corbin there in the three year old program as it was important to us that he form familiarity with the year group of children as soon as possible, as younger children are far more accepting of these things if they are presented in a normal, routine fashion. They took about two days to get used to it, and now, after a year and a half, he has a lot of friends. New kids in the group see from the example set by the class that he is utterly unremarkable, and take their cue on how to behave from that.

In the beginning we were made aware that he would require an aide, because he has a tracheostomy. It is necessary more because of liability than anything, I assume, because his trachy (wacky, he calls it) has really not given us any troubles. Unlike many kids with trachies, he has a patent airway, meaning that if he were decannulated (the tube taken/fell out), he would not suffocate. He also has a good cough reflex, meaning he hardly ever needs suctioning and won’t choke on secretions. So more for the insurance than anything else, I imagine. Regardless, the guidelines we operate under say he must have an aide trained in tracheostomy care so that help is available to him in a crisis without impacting on the other kids in the class. You know, like if any normal kid unexpectedly choked or fitted or had an anaphylactic reaction, which is just as likely. But I digress.

The first problem occurs because he is in a private school and not a state one. I guess there is the assumption that if you can afford private, either you or the school can throw large sums of money around on an aide. The aforementioned reasons for sending our kid there, the fact that it is relatively low-fee and not church sponsored don’t count. Apparently if he went to a state school they’d tick the box and he’d get an aide, but seeing the problems my regular kids had at a state school, I am just not willing to put my vulnerable child through that.

Private schools are eligible for aide funding though. For some reason beyond our grasp, the government departments in charge of funding education assistance seem to recognise trachies in kids with other disabilities, but not as a disability by itself, despite the assumed requirement for a full-time aide. Therefore, he has part of a disability, and is only eligible for part of an aide. Don’t you love bureaucratic logic? So, we have been advised, he needs extensive testing, to see what areas of need he has. If he has three areas of need that could be assisted by the presence of an aide, he may get a larger balance of funding. This is what I referred to in the first post; that I have spent his little life trying to identify any areas of need he has, and working to fix or minimise them before they impact him. Now it seems he would have a better chance if I’d have just let them fester.

We have a speech therapy test booked, and an appointment with the paediatrician to see what can possibly be tested and arrange testing for it. I’ll let you know how they go.


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