Doctor’s appoint for me today, second appointment trying to sort out my ADHD. Tomorrow and the next day, more appointments for the boy- a CELF test for speech therapy and a paediatrician’s appointment to try and see what other assessments we can muster before the school year begins again. It’ll be a busy few days.
You know what you don’t expect to see at the office Christmas dinner party?
A colleague have a seizure. He doesn’t have an epileptic condition, so a barrage of tests will now ensue. I hope whatever they find is easily treatable. When you cast your mind through the possible causes for neurological symptoms, there are some unpleasant possibilities on that list.
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.
I kept a blog, a long time ago. Wrote in it for about four years, give or take.
Then something worth blogging happened in my life, and funnily enough, I simply did not have enough time to write about it. I kept adding things sporadically, when I could, but the entries grew less frequent, and eventually you have to say to yourself, “I don’t update there anymore.” That was about a year and a half ago, and the entry prior to that was a year before. Yeah, it takes me a while to admit things.
So why start up again? And why a new blog?
Things have changed. Four and a half years ago, I became “one of those” parents. A special needs parent. As cliched as it is, your life simply isn’t the same after that. I am the same person; I won’t go as far as to say I am changed (although for many people they are), just that my life cannot be the same.
As my husband pointed out earlier today, we have spent all of our son’s life normalising him. We have minimalised his difference, and tried to keep his medical needs as matter of fact as they can be. We spent a lot of the early days in hospital but we have tried to become self-sufficient (his condition allows us that luxury), reducing his contact with specialists and therapists and allowing him to spend more time in the “real world”. We have encouraged him to be present and comfortable in public spaces, and we have fostered an outgoing and friendly social life for him. And it now seems that all of this is at least in some way working against him. I am frustrated and powerless and lacking a voice. So I gave myself one.
My son is four and a half years old. He has blonde curly hair and grey blue eyes. He is small and lean and fast. He smiles a lot. My son likes Thomas the Tank Engine and Lightning McQueen and Tinkerbell. My son has a hilarious sense of humour and never fails to make people laugh. He likes pickled fish but hates pickles, likes squishy cheese but hates chilli. My son has two older sisters that adore him and are every bit as unique as he is.
My son’s name is Corbin, and he has what’s known as a lymphatic malformation.
For four years, this has been one tiny aspect for us, one little detail in the vast uniqueness that is any child. Now that he is at school, it becomes complicated. He has a tracheostomy to deal with the fact that part of the mass adjacent to his trachea might impinge on his breathing. This means he needs an aide in the classroom. We applied for funding for that aide, and were told he qualifies for 39%, or only two days a week’s worth. He does not have sufficient needs to qualify for more than that.
So we have to find the other 61% from somewhere. I started this blog to try and map that journey. I worry, therefore I blog.
I’ve been rambling; when I have something more coherent to say I shall return and elaborate.