A Story in 5 parts

Part 1 Fear

I have been to a couple of 'information sessions' for parents of children with special needs about starting primary educaton. At each session the nerves and fear, the tension each parent feels is palpable to me - even over the clamour of my own anxieties and I admit near hysteria on occassion. We are the new recruits. We are tired from all that EI. From adjusting our families and facing the world every day as the parent of a child that is 'different'.

The speakers have been older more experienced veterans. The Bogart and Bacall crew. They have a blunt battle weary message. It isn't always uplifting. Yet they bring such hope. They cope. Their kids cope. Life goes on. It is just another battle front - and overall once you find the right fit - it seems to operate as at least a truce between the parent and the school.

These old soldiers share their battle tactics with us - take notes, don't go alone or you'll get ambushed. Do reconnasance. Advocate. Persist. Stand strong. You can do it.

It's comforting but also daunting.
Then there is the other information session - the bureacratic one. We are all more anxious here. This one is run by the people who can help us. The ones in the know - who understand the system - from the inside. The session is spent trying to weigh up what we hear. How much is genuine? How much is bureauspeak? What will it all mean for my child? So many questions and of course no answers at ths stage - just more information, another piece of the puzzle.

Part 2 Anger
My DH calls me a loon - one those crazies who fire off diatribes to any poor fool who has to lend me an ear. I write a letter. I know it is emotive - I write it in anger and tears, adrenalin fueled. I don't show it to anyone. It is cathartic. I am not really like that - I wait. I edit carefully. I am aware of the inadequacies of my words. The traps. The contradictions. I don't want to offend the educators I have spoken to - yet I do want to give them a good shove. They are not 'bad people' in this scenario, still I think it doesn't hurt to remind them that in the mill of enrolments for next year - they might have some rather antsy folk like myself - in need of mercy and/or compassion. I want guarantees. I want information now. I am trying to read through the 'public speak' to the person beneath the professional persona. I need an allie. I am on the HUNT for one.

Part 3 Action

here it is - identity slightly less concealed - I am applying to these schools after all!!! I can't afford to scare them or offend them. I think they are good schools.

Dear editor
I read last month’s education issue with great interest as I have twins who will be starting school next year. I am on the open day treadmill as I type having visited an infants school earlier in the month and a local catholic school today with three other open days still on the to do list.

The whole process is disheartening and incredibly daunting. In spite of having been a high school teacher for nearly 20 years I found myself in tears raging, wondering what is the point of education?

Both schools I have been to have been are perfectly adequate and have good reputations locally. What I don’t understand is why educators aren’t beating down my front door. You see one of my twins has an intellectual disability. She has Down Syndrome. Here are professional institutions with a passion for learning – so why is it that they aren’t amazed and interested in my daughter’s progress?

I want a place where my daughter is welcome. Why do I have to negotiate with a school to accept my daughter and then try and stuff her into their square hole – my beautiful, fun loving, hard working little girl deserves so much more than that.

I get the theory that my daughter belongs in a regular classroom. I believe it too. The state expects her to be in a regular classroom and so do I but without adequate support and expertise we are setting her up for failure. I discussed this reality with today’s Principal – and oh yes she understands that point very well too yet the mother in me cries out to teachers and principals like her - why oh why couldn’t you say – “yes I know but we are really keen here on adapting to meet your daughter’s needs. We will go out of our way to help her adjust and meet her potential.” Instead at both schools they have been quick in linking me to various bureaucratic requirements such as IQ assessments that may get her some funding for support.

Why is it always about how she will fit in instead of how they are going to do their jobs and draw out at least some of what she is capable of? It’s not that hard – I’ve been doing it ever since she was a baby – and she is remarkable. She also has significant speech delay, takes longer to respond to questions while she processes what she is hearing and then forms an answer and is far better at visual cues that just spoken ones.

Today I am tired and I am upset. Neither school have done anything ‘wrong’ but they have been acting to their formula and I feel like I have to ‘prove’ my daughter worthy rather than they convince me that they can meet her needs – that they have that standard of excellence. All the gifted and talented programs and the Smart boards in the Sydney wouldn’t be able to compete with that. Now that would be a school that educates.

Part 4 Solidarity
You gotta love another special needs mama. We are a gang - in the best sense of the word! A couple recognise my writing. One Mum who I don't know that well but who lives nearby has a duaghter with DS (her daughter is fairly similar to Hannah - with obvious individual differences but overall they are pretty well matched). She is looking for a school for her for next year. We compare notes. She comments (as one of my other friends has also done - and which I totally agree with!) that this is so hard. It has taken her by surprise how hard it is. She wakes up worrying about it in the night. She has been reading and reading on it. She has been setting up interviews at as many schools as I if not more. Like me she got lulled into thinking it would all be ok - when it happens. We got over the shock of the diagnosis of our daughters and got on with admiring their every achievement. Now we are being asked to focus on their differences, their weaknesses. [I hope I haven't misrepresented her thoughts here]. One school got a particular mention. It has a great reputation and a particular class for older kids with special needs (as do a number of gov schools in our area). I was surprised to hear that the interview didn't go so well as she had hoped. The school had not seemed as accommodating as she had expected. They are better prepared for older children with an intellectual disability. Well, that was her perception anyway.

Part 5 - Sharing the Burden
The most glaring inadequacy of my words is that they don't acknowledge the best intentions of the schools I have spoken to. Anecdotally I have heard of parents receiving fairly pointed "have you considered school xyz.. the anywhere but here school". I got none of that. What I did get though was not enough to settle half of my fears - and I think that process needs to be improved. It shouldn't feel like this. Imagine my surprise at the coincidence, the school that my friend had mentioned so briefly - had contacted the magazine. They had talked about their programme and left contact details to be passed onto me as they thought that I might be interested in what they have to offer.
I will ring them - We disguised my identity very loosely by omitting the reference to twins. I don't want them second guessing the author as this other Mum. I stand by what I wrote but that doesn't mean that I don't have any regard or respect for what schools do - I am a teacher after all! It's just that sometimes I think they need reminding that they are in the business of learning and that every child has the right to that. Yes they need to be able to meet the needs of the particular child but that shouldn't become the excuse to hide their fears and insecurties and prejudices behind. Children like ours, especially if they get a 'mild' result in their assessment can really be left with very little - when clearly they could do amazing things - with support.