Monday, October 15, 2012

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.

12 comments:

I so want to write something in response to this, to come up with some insight or observation that is deep and makes all these experiences meaningful, but I am not sure that I can, and so I keep going back to Jean Vanier, to some place or space that welcomes all our brokenness (parents, children) and wish that I could find and live in that place and open to doors for all the hurt and broken and tired and just plain done in. But you also give me hope, because you BOTHER to speak, to chronicle, to keep reading that damned NYTimes. To witness, and make us witness. That's as deep as I can go right now. But thank you for continuing to voice and point and tell stories for us.

That having anyone in the family that needs more is a stress to the family. It's no big news that having someone ill, having an accident, anything that requires more attention, work and money is going to be an added stress. I don't see what the news is about it. If anything, I would hope such stories are written to let everyone know that because of the extra needs and stresses, additional aid should be allocated to those in that situation. It takes a village, right?

As for doctors pressing expectant parents to abort, that is something that really should be addressed and considered a breach of any etiquette. The option should be given, but so should resources that have experience with the issues that such families are likely to face.

But, the medical profession is just not there when it comes to that kind of support. When my child was in the hospital and being treated on a long time basis, there were no referrals to any support groups. It seemed to be discouraged.

In lieu of a comment, I think I'll just type "ditto" for every single one of your words, particularly that last paragraph.

While I agree that raising a child with special needs is much much more challenging than raising a child with special needs, the idea that we need to make them 'fit' or 'pass' as normal never really occurs to me. It just seemed, from the beginning, to be impossible.
What I want to find is a place where my child can be happy but I don't think a large school system is likely to be that place and even though we are currently lucking out with a great school experience, to me the years until 21 seem like a drop in the bucket.
I am much more interested in life skills and real world interactions and I know I am going to have to have some luck to figure that out.
This past summer we skipped on camp and had four one on one sessions a week with therapists who came to our home. It was wonderful for us all.

I'm not certain how this will be taken but over the last fourteen years I've come to consider myself lucky that i don't have a special needs child. I don't have to worry about my son fitting in because he cannot fit even in the most advanced care facility. At home he is provided with better care despite the massive health issues. Paralyzed, blind, with no way to communicate, suffering pain and constant seizures yet smiling and that treasured, rare glitter in his eyes that makes me give everything although he asks for nothing ( or can't at any rate). He has no place in society other than what my description of him can evoke in people who are interested.
I often feel we are not vocal enough, that those that get what they want do so by shouting aggressively while we feel that if we shout, there is only more disdain and antagonism.

Thanks Nan!

Hi Catherine -- I think too often that stories about the mental health challenges of parenting kids with disabilities confirm in people's minds a negative picture of disability and a feeling that they're glad they're not in our position (and sometimes a judgment, from those who believe disability should be prevented through abortion, when the disability is diagosed prenatally). I don't know that it results in support for better services.

Thanks Elizabeth!

Anonymous -- I would not have said, when my son was young, that I was trying to make him fit or trying to normalize him (I would have said I was trying to give him an equal opportunity at a good life). But now, at age 18, I can see how constant interventions put the focus on trying to change the child, and at a certain point, if the child's disabilities are multiple, you realize that you will never close that gap and you're more concerned about your child enjoying life.

Thanks for writing Eric. Thanks for sharing the complexities of your life with Segev -- and the glitter! When you say we're not vocal enough, do you mean parents of children with disabilities shy away from demanding better services because they feel feel they'll be met little support?

Yes. We are not vocal enough.

Louise,

I think what Eric wishes to convey is, "Yes, we as a group are not vocal enough, as so many parents exhaust every engery simply trying to keep their child happy, healthy and alive." Sometimes, "normalization" isn't an option.

Nonetheless, in advocating for greater services, we will need to answer the question, "Why did have, or decide to raise, a disabled child. Merely stating "we're tried" is not going to be enough.

Matt Kamaratakis

Hi Matt -- I'll let Eric answer for himself.

But I'm interested in what you said about effective advocacy. Do you think we as a group need to better tell the story of the value our children bring to our lives? Is this what you're getting at?

Most people don't "choose" to raise a disabled child (or at least it's not an option for them to choose "not" to raise their child with a disability).

I'm interested in what kind of storytelling/advocacy you think will result in greater services. Thanks! Louise

Louise,

I am humbled by the opportunity to continue this discussion. Please believe, "It will never be forgotten."

No one wishes to have a disabled child --not parents of children with disabilities or those with special needs themselves. However, the consensus among average folk, or those untouched by disability, is, Why did these parents not pursue an abortion or institutionalize there children?" Or, why are they placing undue pain and suffering upon themselves and their families? Our reply, as you stated above, "...it's not an option for them to choose 'not' to raise their child with a disability." Thus, we instinctively love, "and decide", to raise these kids. To those who would disagree, I ask, "Could you kill or abandon your child --a part of you?

My parents have four kids, my brother and I are disabled with cerebral palsy (we are not twins). My mother, who has sacrificed more than most to raise us, has said, "If I could give one leg to you, and one leg to your brother, I would do it", but should would not take our lives. This strong, courageous, and beautifully stubborn woman also visited her obstetrician, prior to the birth of her third son to share the following words, "I have two boys with CP. I love them with all my heart, but I can't care for another one." I, as a disabled adult, can understand this, and I think, "So would most people." I have always wanted my parents to be free. I love them too.

But, we mustn’t forget that we live in a world where parents of children with disabilities are often seen, and ostracized, for displaying "poor judgment." And unless their kids have the ability to overcome, or somehow build a life for themselves, with minimal assistance in adulthood, they will most likely suffer, or parish, soon after their parents are gone.

So, what should we do?

Constructing good and sustainable policy is key. However, we cannot solely rely on government, as we require a coordinated effort by the corporate and nonprofit sectors as well. Parents should also be saving with their child's future in mind.

Also, some like me have the ability to gain employment, but this doesn't imply that those with a greater severity of disability are worthless. We wholeheartedly need to keep an opened mind, as transference is sometimes a blessid gift.

For example, I will never forget the second time I sat in your office, as Sarah, BLOOM's web designer, walked in to ask a question. You were kind enough to introduce me, as I had already spoken to her while you were away on vacation. For, I am always writing or leaving some sort of comment. Anyhow, you proceed to ask Sarah, if she’d like to stay and chat for a moment? But she declines, feeling uncomfortable, not knowing what to say. Now, if I could go back in time, I would thank her for doing such a superb job maintaining this site. I would want her to know that she has helped in enriching my life, as I will be studying web development, journalism and editing this November. But, this isn't all I would tell her. For, on that day, we met in person, "she wore an exquisite set of pearls, just like my mom."

We require our love, our intellect, the iron will of our children, as well as our stories.

Thank you,

Matt Kamaratakis

HI Matt, this is Sara (the Bloom designer you mentioned in your comment). I just wanted to clarify that I was in no way uncomfortable with your disability when I met you in Louise's office. In fact, I just needed to ask Louise a question and return to a deadline I had at that time. That's it! Just didn't have time to chit chat is all.

Thanks for your kind compliments over the years.

All the best,

Sara

Sara,

I never once thought that you a ploblem with disability. If you did, "You wouldn't be working for Holland Bloorview." Now, although I am not one to chit chat, when work needs to be done, I might have thought that you were simply shy, or that you felt, "Neither of us had anything in common, or nothing to offer beyond the blogsphere."

Nonetheless, I always believed that your greatest giift to BLOOM is not the maintenance of this site, which helps so many, but you yourself.

I'll chat with you later!!!

love
matt