I am getting ready to talk about us at a conference in San Diego next month. As I was scanning my past presentations, I realized that the gap between parents and teachers are growing, and neither of them are to blame.
A quick scan of therapies for Autism, and articles on special education, so much on parental incompetence can be found. Primary caregivers are crucial in a child’s development, this we know, but the bulk of research seems to center on what caregivers do wrong. It’s frustrating to see so much weight on parents. It is not uncommon to hear about an apprehended murderer on television followed by a chorus of judgemental voices blaming the murderer’s upbringing. When a 4 year old fell into the gorilla habitat at the Cincinnati Zoo,a petition was set up to criminally charge the mother for not paying attention to her son. These “blame parents first” types are ignoring the fact that the enclosure built in 1978 was never updated, or that sometimes toddlers are swift, and agile with no inhibition and can get in through spaces we adults consider impassable. It was tragic, and has sparked investigation of zoo enclosures, but we can’t jail parents every time we are upset about the outcome of a tragedy.
This mentality doesn’t stop with a toddler. Famous criminals gain sympathy from a public that blames their mothers. Andrew Solomon of the Daily Beast puts it in the best words when he said, “To be or to produce a schizophrenic or a child with Down syndrome is generally deemed a misfortune; to be or produce a criminal is often deemed a failure.”
Not only does this mentality of blaming the parents empower the criminal motive, but it ignores the concept of free will. At some point, as people, we make our own decisions about who we are, what we will do, and what rules we wish to follow. And this can occur well before the accepted age of adulthood.
With a special needs child, even though the public seems sympathetic to the parents, almost to a fault, it is the medical community that paints the blame picture. Though sometimes this blame is placed inadvertently, it is still much of what frames parental competence. When I was investigating supports for my daughter who struggles with anxiety, I came across a book that was touted as a best seller. In this book, the author talks about childhood circumstances that lead to anxiety, and all of them blamed the parents. Now I am not stating that parents are free from blame. There are bad parents, and even the best parents can make terrible mistakes. However, there are plenty of anxiety causing stressors caused by outside influence in childhood.
When a child is diagnosed with a disability, the “intervention industry” is focused on alleviating the parent’s fear and sense of panic. Because of the uneven weight on parents to be everything for their child, early interventions are often the result of an intellectual parti pris. Particularly in American society (speaking only from the point of view where I have experience) we expect parents to be flawless, self-funded, self-educated oracles that reserve anger and love to a fault. This is more than most people expect from their god, as even gods get angry.
As a result, parents become chauffeurs and waiting room ornaments as their children are shuffled from therapy to therapy. Uninvited parents become uninvolved parents, falling behind the potential progress of their children. That is until their children are dumped in their laps as soon as the child becomes a behavioural issue, or at age 18 when funding is no longer available.
Parents then return to a panicked state, which is usually when I get calls. As a self-advocate, I receive dozens of emails a year from parents who have no clue what to do next for their aging special needs child. They ask me for guidance, and want to know details to the most intimate levels, having no idea where to turn. What many would see as a severe invasion of privacy, I see as loving parents just wanting to do the right thing. True, they don’t want to be blamed, but more over, they don’t want to do wrong.
Bad parents are out there, people who just don’t want their kids. It is tragic, but we cannot frame all parenting by the bad ones. We must start presuming competence in parents. As therapists and teachers, we get the benefit of a controlled atmosphere, and the education to frame the situation more clearly. But parents come in blind, and must carry out therapies at home with hundreds of unexpected interruptions. A telephone call from a school, accidently burning dinner, a broken water heater, or sudden illness are just a few of the unexpected events that can occur at home. As teachers or therapists, we can simply cancel the appointment when we are overwhelmed by life.
So what can we do?
- Presume competence in the parents as tandem learners along side their child. Train parents how to be in a room during therapy, when to intervene and when to sit back.
- Teach parents to not excuse, apologize for, or over explain a child’s behaviour. Awareness is informative, not apologetic.
- Tell parents that mistakes are inevitable, so admit to it and work on improving. Mistakes don’t always leave scars, sometimes they just leave stretch marks.
- Empower the parent/teacher relationship, where they are a team and not servants of one another. Tension between parents and teachers only benefits the politicians who need excuses to over-regulate and restrict innovative approaches. Money can only be made with regulations, not with free choice.
- Did a parent’s DNA cause their child’s disability? Most likely. But it also caused their eye colour, hair type, and gave them hands to explore the world with.
- Parents – you’re going to need help, disability or not, so get over it.
- Teachers – kids have parents who live with the kid 24/7, cleaning up vomit, loving them when they act like little assholes, losing sleep, and giving up tons of freedom. You get to send them home at the end of the day, so unless you are adopting you’re entire class for the rest of their lives, deal.
- Doctors – Want to do research? Want to find a cause? Fine, but lab rats bite. Want to hand a diagnosis based on 5 minutes in a room with a frustrated parent? Shame on you. Learn how to delegate and admit to your limits. Sometimes the best thing a doctor can say is, “I don’t know but let’s find out together.”
- Therapists – Theory and application are miles apart. Throw away your developmental timelines, focus on successes, overcome weaknesses, and remember you are treating the caregivers too. Prepare literature and classes to help parents support your efforts. Parent’s are your apprentices.
- Society – Kids with disabilities are expensive because we as a society have decided that circumstance of birth is the great regulator of potential. Until a massive, permanent change in the system occurs, families of children with disabilities will continue needing our financial help.
Despite popular belief, the bottom fifth of households pays about 16 percent of their incomes in taxes, on average. The second-poorest fifth pays about 21 percent. This is the income bracket of most people with disabilities, who never qualify for “incentive to work” tax breaks or other deductions that leave 40% of US households not oweing federal income taxes. No one enjoys paying taxes, but those are the same people who gripe when they have to pay a toll to use a road. This is the price we pay for being part of a community, for having help when we can’t help ourselves, for allowing us to get to work, learn to read, and learn a trade. We help each other so stop guilting parent’s for reaching out. Stop punishing single parents and setting up their kids for failure.
Understand that upward movement for our neighbours is upward movement for us all. Don’t like that? Buy an island and live all alone. And don’t be one of those asshole beg-packers that hike around the country with a backpack pretending you do so without societies help; Hiking around in Levi’s, with a patagonia backpack, sleeping on federal land paid for by taxpayers. (Note: I am not talking about the homeless. I am talking about people who beg for money to tour the world)
Ok, my rant took me a little off track, but the point is valid. We have huge misconceptions about poverty in developed nations, and the people paying the price are minorities, elderly, people with disabilities, and parents of special needs children. Maybe you think it is cool to live carefree out of a backpack, but you ultimately have the choice at any time to return to the comfort of home. People with disabilities do not have this freedom, and when their caregivers and parents inevitably die, there is nowhere for us to go.
Parents of children with disabilities have to plan for today, tomorrow, and the lifespan of their child even after their own death. And when society closes the door to supports due to misconceptions of widespread abuse or political gain, the burden on the parent increases disproportionately.
Think the ADA no longer needs defended by society? Think about that the next time you wheel a suitcase, stroller, or shopping cart up a handicap ramp.
The point is, give parents a break. Presume competence in them too, invite them into the therapy session, and lead them to better, supported parenting. Besides, one day my kid may be your surgeon.
Now, I have vented,