Last week, I attended a local meeting organized by Centre 404 (an Islington charity that offers support to families with disabled children…who have just about saved our lives). The purpose of the meeting was to get input for Labour MP Sharon Hodgson and local Councilor Richard Watts regarding parents view of how the education system manages special needs children, in light of a forth coming Green Paper on the subject. The room was full of parents; they had to keep adding chairs around the table. The same things kept coming up, of course: inflexibility, slow to diagnose, bullying.
I should say…I was the lone homeschooler there. I even asked before attending if my views would be welcome. And for those of you who may have forgotten, I am also an American, who has lived in the UK for almost six years now. So my views on this meeting are tainted by those glasses…homeschooling American. But as I listened to this discussion, which was clearly about the type of help parents feel they need with their children, I kept asking myself one thing…what is the role of government versus the parent in terms of services for and education of our children?
It took me a few hours to synthesize all that I had heard and seen that day, but as I thought about it, it all came down to what I call the Three R’s…rights, responsibilities and resources. It is about balancing and trading off of those rights and responsibilities to acquire the resource that is the struggle between government and individuals/parents.
Let’s start by defining some things. Rights in this sense are that which is due to anyone by just claim, legal guarantees, moral principles (Dictionary.com). Responsibilities in this case I am using similar to duties of care, i.e. the ability or authority to act or decide on one’s own, without supervision or in this case on behalf of your child. And resources are those things…physical, emotional, or even information that we need to fulfill those responsibilities.
Let’s look at some common examples of these for parents of children with special needs. Rights could be as simple as choosing the doctors our children see, the place we live, the school they attend…or in the case of homeschooling…if they attend a school at all. Of course, we have the responsibility to our children and to society to see that their medical and educational needs are met in a reasonable manner. We also have the responsibility of providing basic necessities such as food, water, shelter, security and love that will allow them to grow and function. To fulfill these responsibilities we need certain resources, such as money, time, support and access to accurate information.
What I listened to for two hours was the break down between these rights, responsibilities and resources. I heard of stories (besides our own) where children were denied access to resources such as tutoring for special needs such as dyslexia by the school they attended. I learned that the whole process of identifying a child’s needs took at least six months…and likely a year…all the while; children are falling further and further behind. I learned that while every school has a bullying policy every single parent around that table had trouble getting the schools to enforce those policies. I learned too that families were ‘stuck’ under one local authority because in this system moving meant starting the process all over again…and that where you lived could determine what services you and your child received. What I listened to…was a system badly broken. What I heard were parents deeply hurting, tired and at the ends of their ropes trying to do what was best for their child/ren.
What I was left wondering was…can government…any government really do this job? Because the thing that I kept thinking was…no government or education system cares about your child the way that you do. Your child is nothing more than another worker to be trained…another cog to be shaped to fit into a system. If those cogs are mis-shapened or broken then they become almost something to be discard, placed to the side so that the efforts can be placed into those pieces that do fit, those cogs that can be used to move this huge machine we call our society.
Of course, as a ‘civilized’ country, we theoretically recognize that we have a responsibility (duty of care) to provide for those cogs that cannot provide for themselves. But in a system that is barely eking by, where resources are limited, how much sense does it make to spend those resources on the few? As the Star Trek saying goes…”The good of the many outweighs the good of the one.” While we want to pretend that we are so much more advanced than those cultures that routinely castoff disabled children at birth, leaving them to die in ditches, while their parents are expected to just carry-on as if their lives never happened, the truth is…well, you need to consider what truth is for yourself.
But the other thing I was left to consider as I sat the lone homeschooling parent at the table…if government is seen as our huge rescuer, providing the resources that we need to fulfill our responsibilities then it is a trade-off against our rights…the rights to educate as we wish, to live where we wish and to access the treatments that we wish. I heard that repeatedly that morning. The mother, who knew that the pollution of the city was making her son’ breathing difficult, but who could not ‘afford’ to leave the resources of the city and this borough behind. The stories of parents seeking secondary schools for their children who were told…we take only the brightest here (i.e. we want good test results). I know too how difficult it is to get your child seen by specialists. It took me two years to convince the doctors that my daughter was having seizures in her sleep…and I am still battling to get an accurate diagnosis.
So what is the answer? For me, it is found in asserting my rights…to homeschool…to have my child’s medical condition more thoroughly investigated…and to live as we see fit. But as I heard from other parents around that table, this is a lonely, tiring/exhausting and difficult road. It is especially so if you choose to trade some of those resources back for more rights and responsibilities such as homeschooling families do. But in the end, I stand firm in my belief that the parents want the best for their child in a way that society/government never will. But then again, I am a rebel…thank the fates.
Join me next Tuesday as I review Phil Christie’s Understanding Pathological Demand Avoidance Syndrome in Children. And next Friday…I have no idea yet what I am writing about. How about you tell me what’s on your hearts and minds?