Staying sane in a world that hates disability

I woke up on Saturday and saw this New York Times piece in my alerts: The Psychic Toll Paid in a Special Needs House.

Great, I thought. What negative impacts of having a child with a disability have they discovered now?

The article is about how the psychological strain of deciding where a child who needs support will live, and the stress that special-needs parenting places on a marriage, are more challenging than creating the nuts and bolts of a financial plan for your child's future.

This reminded me of a talk I had last week with a doctor about higher rates of depression, anxiety and divorce among parents of children with autism -- both when compared with the general population and with parents of children with other disabilities. Her advice to parents receiving a diagnosis: "Go and get help now" -- meaning find a therapist.

Meanwhile, in the media we hear about a family in Sarnia, Ontario that's being split because the mother can't care for her adult daughter with disabilities and her dying husband. She brought her daughter to a Community Living respite facility and has placed her in the province's custody.

The respite facility is willing to provide more long-term care if it can access the extra funds needed from the government. But the Ministry of Social and Community Services has said it won't provide the money. Instead, the young woman will be placed in a nursing home -- at greater cost and according to the family in a less appropriate setting -- because that's where the funding exists (apparently there's no flexibility in funding between the social services and health ministries). The article says there are 6,000 families in Ontario waiting for residential care for their loved one.

Today, the British charity Scope released a report that finds that getting services is a "battle" for 62 per cent of 600 UK families of children with disabilities. The headline in The Guardian story refers to families "at breaking point."

A friend sent me a note on a message board from a woman who had just learned she was carrying a baby with Trisomy 13. Her obstetrician was trying to convince her to terminate the pregnancy:

"She told me maybe I will be lucky and he will die at birth so that I would not have to go through long term in caring for a child that will never be able to talk, walk, go to the washroom (always be diapered), eat by himself, will never recognize anyone including me, will also cry a lot at night and scream and yell and will never be able to learn anything. Also gave me the speech about making me suffer a lot and my whole family, especially the other children because I would be giving this baby all the attention and lack giving attention to the other children. That his siblings would end up hating him."

Of course this depiction flies in the face of a recent published study that found that 97 per cent of 322 parents who chose not to terminate a baby with Trisomy 13 later described their child as happy, despite severe disabilities, and enriching their families, even when their lives were short.

We want simple answers when it comes to disability but there are no simple answers. We want everything tied up in a neat package, not the ragged ends.

It is so much harder to raise a child with multiple special needs. We are more susceptible to depression and fear. We're constantly facing up to the fact that our child doesn't "fit" in this culture, that there's a basic hatred toward disability in society. The pressure is on to reshape them, to try to make them "pass" as closer to normal. At the same time, we have to put on our Superman capes because if we show any vulnerability, we get pity: we confirm other people's opinions that our lives are tragic.

It's difficult to explain that despite all of the hardship, you love your child dearly. You wish others could see him in your eyes. You wish there was more support.

Yesterday, as I sat trying to help Ben do his homework, I could hear my voice getting louder and more frustrated (bordering on nasty). It was only two in the afternoon but I poured myself an emergency glass of wine and sent my husband an e-mail titled "Crazy" -- with "that's me" in the body.

Ben's been acting out at school and sometimes I think it's just all too much for him. And I start feeling angry and frustrated at the injustice of it all. And wishing he didn't have this particular lot in life. And wishing that I didn't feel that way. And then I get a pain at the base of my skull.

And I can't help dreaming up his escape -- to a place where he didn't have to live up to society's standards and norms, where he didn't have to constantly find himself wanting. Where everyone's interaction with him didn't involve trying to change him, trying to improve him. Where he could just be.