Friday, October 18, 2013

Announcing the Turn: a blog for parents of kids with disabilities

Many years ago I worked with a young family who were dealing with a little boy with Down Syndrome who, much to their surprise, had become a toddler who could be a real handful. Mom acknowledged to me, back then, that somehow she didn't expect the 'terrible twos' from a 'heaven sent child'. I agreed, knowing the reference, and said that her son certainly didn't fit the 'meek and mild' qualifications. She laughed.

I guessed at, but never knew, the journey that this family had been on. She was a young mom, they expected one thing but got something different. But they both, father and mother, loved their son and wanted to do best by him. He was a challenge to work with, as a behaviour therapist, because he was a master at getting what he wanted and by shamelessly 'playing disabled' to get his parents sympathy. Once they saw through his gambit, things got better quickly.

Over the years I ran into them at conferences and other gatherings. The most recent was seeing him, the boy, as a full grown man, at a self advocacy conference. I know I'm getting older, not because I feel so much different, but because these damn children I know keep growing up. It was nice to see him and I gave him wishes to take to his mother. He must have delivered them because we had a few emails back and forth to catch up after.

Then, yesterday, and I write all this with at her request, I received an email from mom. She wanted me to know that her son, the man I'd met as a fully confident self advocate, had died. She was grief struck. Even through her grief she wanted to write me, she wanted a safe place to send her anger. So she wrote it down, pushed send, and it arrived in my in box.

Many people, those she has known for most of her life, have said to her that she must be "relieved" and "it's better for him," and "now she doesn't have to worry about him," and that her "burden" has been "set down." She is astonished at what they are saying. "They KNEW him," she screams in her email. Instead of condolences, she getting an odd kind of congratulations. "Well, that's done now." "You've survived that."

Some have reminded her at the shock she had when he was born. She and her husband had a tough few weeks at the beginning coming to accept their child. There were tears and there were accusations and there was guilt - one of them must have done something wrong. But they got through that, they met their child, discovered they loved him, and that was that. There were difficult times along the way. After all I ended up in their home, my behavioural bag of tricks with me, and they had the usual squabbles with schools and with teachers and with random prejudices in the community.

"It is as if because I grieved when he was born, people are surprised that I need to grieve his death," she wrote. She didn't realise that the memory of her shock and grief at the beginning of her sons life would negate the need for it at his life's end.

She wrote me, partly because she wanted to tell me, but she wrote also because she reads this blog. She didn't want her letter printed her, she's approved the quotes I've used, because much of it is much to personal. But she wanted to say to you, through me, that she wishes she'd sat her friends and family down, at some time, and told each of them - "I've over the shock." "I love my son." "I didn't mean some of the things I said when I was first told that he had Down Syndrome." She had just thought that they could SEE and HEAR her love for him. She thought that her husband's obvious joy and pride in the man his son became was CLEARLY evident.

"We haven't been patiently waiting to be rid of the burden of our boy."

After reading the email, I called. We chatted. I cried. She cried. Her husband cried. He was a great kid and he was, as I so clearly remembered, an awesome adult. They'd done good.

I reassured them that their love was obvious. I'd seen it the moment I met them.

But it wasn't obvious to others.

So, I'm doing as I was asked. Writing a blog for parents of kids with disabilities. "Tell everyone that you love your child." If the first few days and weeks were rough, as you adjusted to the role you were about to take on, you might have expressed a kind of grief and mourning, this is often part of the journey for parents of kids with disabilities. It's part of the journey for those who are newly disabled. It's part of the journey for many people for many reasons. It's normal. Just make sure that, when you turn the corner, towards hope and joy and embracing love, you let people know. Drag them round the corner with you - make them see the same thing in new light.

Now, the blog is done, now it's time for me - to join mom and dad in mourning a wonderful life, lost.


Anonymous said...

I'm so terribly sorry for their loss, and hope that they have many wonderful memories to sustain them.

Louise said...

This is so very familiar.

My sincerest condolences to the family in their loss.

Baba Yaga said...

My condolences to Mom and Dad. How dreadful to lose a child.

Those words don't say what I want, but condolences never do, do they? Loss is so hard.

Kris S. said...

Dave, for some reason I'm reminded of my own mom on many occasions expressing apprehension about women over 35 becoming pregnant ("Their babies could have problems.") When I finally got her to identify the "problem" as Down Syndrome, and suggested that lots of folks with DS had lives that were just fine, mom stopped making those comments (to me). I guess that's a kind of progress.

My condolences to your friend and her husband. I don't want to think about losing a child, even when that child is grown.

Tamara said...

First, my deepest sympathies. Our son with DS is 16 - and we're going to his first self-advocacy conference in a few weeks. He also was a handful - and still can be once in awhile.

I can't imagine anyone ever saying he was a burden. Just can't imagine.

Extranjera said...

My sincerest condolences.

Unknown said...

I think everyone can take a lesson from this, whether they have a child with disabilities or not. I know being a young mom, there were many tears and many moments of frustration and feeling lost or unable to be a good parent. I doubt very much that people looked at my son as a burden when I was feeling overwhelmed, why should children with disabilities be any different. People could say the same thing about someone who's child struggles with an addiction that has been hard on the family, you just don't say those things! Those people are very ignorant, inconsiderate and blind to reality, a loss is a loss and it is heartbreaking no matter what affect the relationship had on your life. It's important for individuals to open their eyes. I am deeply sorry for this loss, and for the comments that had come afterwards. Their son was a blessing and a joy and the good memories are always the ones we hold on to after someone has passed. I hope his life is celebrated!

KT said...

I can only offer my condolences and hope that he many happy memories they have of their son will be some comfort. A poor response to a post hat moved me to tears.

Deb said...

There is hardly a pain more searing than losing your child, and people say the most stupid things. Our pastor said, "Oh you mustn't grieve, your daughter is running in the streets of heaven." We didn't want her in the streets of heaven, we wanted her back in our arms.

To the grieving parents, there are no words which will ease your pain. But there is great compassion.

Anonymous said...

I love my child. He's four and a half months old and he has Down syndrome. I love him to bits and he is wonderful.
I see that some people find it odd or seem incredulous, maybe think that I am being dishonest.
You are so right in what you say. Thank you

Anonymous said...

My condolences to all--Mom, Dad, and you, Dave. I am so sorry the grief is compounded by the missed understandings of others.


Flemisa said...

A child is a child. PERIOD
There are rough moments with every child however normal or challenged they may be. But there hopefully is always the love like that expressed by that family.
My Son took his life last year so I have a glimpse of her pain. I hope they can find a support group that will help them when they are ready for this new walk. I found a Bereaved Parens group.
Today -- grieve. Tomorrow - face with grace and strength that has carried you through from his birth to his death.
My prayers.

Kristine said...

It was always hard, as a kid, to watch the MDA telethon footage every year of my parents crying about my birth and diagnosis. It's normal, and I understand it, but it's still hard to watch people mourn your birth as a loss and tragedy. But it's much worse every time I see somebody with a disability pass away, and hear all the comments about how it's a blessing. We're the only people on earth who can expect our birth to be mourned, and our death to be celebrated....

I am very sorry for this family's loss. said...

I can only imagine the depth of their lose your child at any age has got to be the most painful loss of all. My heart just aches for them and I can think of no words that will truly comfort. What a good friend you are, Dave, that she felt safe sharing her anger and sadness with you. How long before others understand our children are not burdens to us but they are our joy.

Cole said...

My deepest sympathies to the family on the heartbreaking loss of their son. People just don't know when they haven't been there I think. That's no excuse though. No parent should have to say good-bye to their dear ones.

Belinda said...

I am sorry for the empty place in this mother's life now, and so sorry that her loss was not honoured as it deserved to be. I hope that in some small way, the recognition here that her loss is as great as that of any mother who is pre-deceased by a child; will be comfort.

Andrea S. said...

My condolences to the parents--both for the terrible loss of their child and also the way that so many people in their lives refused to acknowledge the meaning of that loss.

Colleen said...

Dear Dave:

My condolences to these grieving parents and to you in the loss of this young man.

I had similar experiences when my daughter died and even my brother, who also had DS. Despite my Christian belief in heaven, there is no better place for a 4 year old than with her family, or for a 51 year old than with his family. It is not a relief when anyone dies, it is a shock and a grief and a heart break. My thoughts and prayers are with you.


Psychojenic said...

My thoughts are with you and the family.

Tell your friend that some of us are doing just that. Every single day. xo

Rickismom said...

I only saw this post today, I have been AWOL from reading blogs for a while.
When Ricki died, I half-braced myself for the possibility that someone would say that I must be relieved...and I really did not want to come to hate others nor to erupt in anger. So.... Quite frankly, when a "consoler" came who I suspected might go in that direction, I tried to preempt such comments by saying something like "Yes, things may be easier now, but who says I WANT 'easier'? 'Easy' isn't always 'BEST' ". So, thankfully, only one lady came close to saying something REALLY stupid. [A good friend of mine was there also at the time, and we rolled our eyeballs at each other as Mrs. "foot-in-her-mouth " blithely, and unaware of this, continued her monologue.
However, a lot of people tried to "console" me by "reassuring" me that I had done "The Best", "the maximum", "beyond the normal". And this really peeved me off. I was mourning RICKI, my daughter. She was my DAUGHTER, not a "duty" to be "handled". And I DID tell these people that even if I had done my "best" , I MISSED her!!

Dave, if you think that my blog will help these parents, place pass on the link:

Ricki died August 8, 2012, and blogs relating to mourning are interspersed with other stuff since then.