Fight, Move, Adapt? When the local education doesn’t match your autistic child

A recent news story about a violent seven-year old autistic boy who has been excluded from the mainstream school he was attending, has started a passionate discussion about whether the school or the parent is in the right: Has the school let the child down, and reacted wrongly by excluding the child, or has the parent insisted on the wrong education for their son and being the one to let the child down? Should the parent – could the parent – have done more to stop things reaching this point? And is the parent’s response to the situation the correct response (she’s protesting outside the school).

Abandoned School Desk

Image by Whole Wheat Toast via Flickr

As usual, it’s hard to reach firm opinions on the precise case since news stories present only so many facts, and the information gaps are often crucial. But the story does raise wider questions about what we as parents should do when the education system has let our children down, either because it can’t or won’t deal with the challenges our autistic children present in a classroom.

Do we fight to change the system by protesting, and refusing to place our children elsewhere than our preferred school (or fight the system in some other way while choosing alternative education options than our preferred option)? Do we move suburbs, cities, even countries to get our child closest to the best education option we can afford. Or do we supplement our child’s education in every way possible to adapt them to the less-than-perfect situation they are forced into (for example, using behavioural therapies outside of class hours, and ourselves paying for extra support and training for the teachers).

That’s not an exhaustive list of reactions a parent might have to such situations, but it serves the purposes of launching my discussion here.

When we moved house a couple of years ago, I was mindful of how our move would affect my son’s education entitlements. We didn’t move out of range of his service providers at the time, but we did shift into an area with a well-respected special needs school. Now that we’re thinking about the best education for my youngest, we are carefully considering where the best place to live for his education will be, and balancing it against staying in zone for my eldest son’s schooling. Which is to say, that like a very large number of other families, we will move into whatever area we can afford, that gives our children – whether they have special needs or not – the best education suited to their needs. Moving to find education is not an ideal, it would be nice to have a perfect school on every street corner, nevertheless it is a reality of being a parent and even an adult seeking tertiary education; you move if you have to, and if you possibly can.

Of course moving is not possible for all, and in countries like this you’re told you can expect a high standard of education no matter what region you live in; that education is meant to be standardised across the country, and is regularly audited and only staffed by those properly trained. So what happens when you’re let down by what’s on offer, and you were told it was meant to be better than it was?

You can take your issues to the school board, the government, the press. You can write books, and blogs and tell anyone who will listen. You can also get involved at an administrative level to bring in the change you believe is required. However, surely all of those options come second to finding the best possible education for your child in the meantime. While you fight the good fight, you still need to find a place to educate your child, or must be willing to homeschool them yourself; not just because the law says so, but because it is the right thing for your child.

If you don’t have the time or can’t afford to homeschool, and there really is no alternative education option, then you adapt. You make it right however you can, by supplementing the child’s education or therapies, or by providing the school and teachers with what they need to do right by your child. You may think you shouldn’t have to do this extra work and take on this extra expense, but life as a parent – especially a parent of a special needs child – is full of things we wish we didn’t have to do and feel we shouldn’t be required to do. But we do it anyway, because this is about our children.

I think parents must be willing to question their own assumptions about the benefits of mainstream schooling and the supposed disbenefits of special needs schooling, when they find their child not working out in their preferred setting between the two. What matters always is what is in the best interests of that specific child, and at that time. There might be a fantastic local special needs school, with passionate and highly skilled teachers, which far exceeds the resources of the local mainstream school. Or the local mainstream school might be the worst in the country. Or swap it around; the local special needs school is the worst, and the local mainstream school is highly resourced and incredibly welcoming of all children regardless of their challenges. When our ideals for our child don’t match the realities on offer, we have to respond to the reality first.

Something I see a lot in these stories and hear from quite a few parents, is that autism makes it hard to swap schools because of the change in routine for the child. The fact is the best school for an autistic child at age 5, might not be the best school for them at age 7, or 14. The severity of autism can change over time, and even if it didn’t, the school best suited to your child at the younger age might have an approach that simply doesn’t match your older child. As hard as it is for our children to move schools  – whether between two mainstream schools or shifting from a special needs to a mainstream school, etc – these hardships and nuisances are worth it if it is what is required for our children to get what they need and deserve.

I know my son may not always be at the special needs school he is now, he may out-grow it or it may change in a way that no longer suits him. It’s a nuisance, it stresses me out, and it will stress him out if and when it comes to that, but routine for the sake of routine – rather than routine formed alongside a quality education – cannot be the primary driving force. Again, these issues aren’t just present for special needs children either; non-special needs children also get shifted between schools to avoid or seek out particular teachers, administrators, or programs on offer.

That diversity between schools – the same diversity that pushes and pulls us towards one school rather than another – is not a bad thing. Teaching methods, teachers, children, family values, local values, all these and many other aspects of our lives and schools, mean a one-size-fits-all approach to how a school should be set up and who should get to attend it, is not necessarily in every child’s (and family’s) best interests.

My primary school years were filled with religious teachings and attending religious locations and festivals. That would have been seen as a waste of time and money for other families who want the education to be focused on perhaps purely academic persuits. Similarly, my son has physiotherapy, occupational therapy, speech therapy, social skills etc built into his daily schooling, much or all of that would be a waste of time for other children. My son still learns writing, reading, maths, music, even cooking; his education is rich and diverse. But it is tailored to him and his specific classmates, with specially trained experts whose expertise would have been wasted years of training for dealing with most other children. Again, diversity is not a bad thing.

So here’s the opinion I hold about what I’m going to do when the local education system doesn’t match my child’s needs. I will move if I can to an area that has a school that does meet his needs. If I can’t move, I will homeschool him (which used to be my first choice, and is the perfectly good first choice of many families. Homeschooling is generally misunderstand and under-appreciated by wider society.) If I can’t do that, I will supplement his and his teacher’s education as much as possible. And at all times, as long as things are less than perfect for my son and children like him, I will fight the system and make our voices heard; alongside not instead of getting him the education he needs. I do see myself as an idealist; I know what I want for my son and have strong views on the best way for him to get it. But I am always still a realist; responding to the realities of what’s on offer at this point in time and making the most of it.

I’m just fortunate enough that my ideals and the reality for my son coincide at this point when it comes to his education. I do not – have never – taken that for granted. I hope never to be just one more news story about a mother whose autistic child has fallen not just through the gaps of the existing education system, but right off the grid, in a way that is tearing the family apart.

Fight. Move. Adapt. Whatever it takes. We do it.

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6 Responses to Fight, Move, Adapt? When the local education doesn’t match your autistic child

  1. Dixie says:

    You said, “I think parents must be willing to question their own assumptions about the benefits of mainstream schooling and the supposed disbenefits of special needs schooling, when they find their child not working out in their preferred setting between the two…”

    YES. When our son started school we started off with him being mainstreamed into the regular kindergarten class for part of the day. It quickly became apparent that this was TOO MUCH for him. And so the plan changed. I just was reading in the home-school journals from way back then that showed us struggling with what the best decision was. Different situations call for different responses, of course.

    In terms of moving or fighting…we were lucky to already be in a school system that was known for doing a good job with kids on the spectrum. Time is so important during those early years (at least from what we are told). I remember being very tired and somewhat depressed and if I had felt I had to go into a no-holds-barred fight with the schools I wouldn’t have had the energy to be the best parent I needed to be in other ways. But that’s probably a reflection of my personality and not an axiom that I would recommend to others.

    Dixie

    • Hi Dixie,

      Thank you for sharing that. It echos what I’ve heard from many other parents of autistic kids too; that they started outt trying mainstream but realise it wasn’t the right option at that time. I’ve heard the same stories from one of the admin heads at a special school too; it’s quite common for parents to try mainstream before realising it’s not the best option. She was concerned that the lost time and the heartache and frustrations that come from parents being told to always favour mainstream, even when their children aren’t well suited to it as it’s currently set up. It’s the popular approach right now, and though I understand why that is so, I think it’s particularly unfair to the child, family, teacher and school, to actively encourage a very high needs child to attend an environment that simple is not ready or resourced to cope. It’s an issue I’m quite passionate about.

      I appreciate your comment, thanks.

  2. Sharon says:

    Agreed. A sense of entitlement can keep people stuck in situations that are in no ones best interests.

  3. Tsara says:

    Well said! Our family moved every two years, each school district being wonderful for some of my brothers and poor for the others. Then there was us teenage girls. My mom had to consider our surroundings as well and we didn’t make it easy! At the end of the day it was when she pulled everyone out of school and invented ‘travel therapy’, bringing us from resort to resort (where everyone is in a good mood and willing to put up with the crazy eight kids because it was temporary) and teaching academics and life skills. The point is she was flexible and accountable. We are her kids and so she knew that it wasn’t her job to rely on systems to love and understand our needs, but that it was up to her. It worked!

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