Thursday, January 27, 2011

The Old Man and The See

Parenting is difficult. I get that. I really do. Those of us who don't have children often get the 'but you don't have kids' look when we express any opinion on parenting at all. No, I haven't parented, but I do know that parenting is difficult and full of emotional challenges and pitfalls. And while I've never parented, I have indeed been parented and I think that counts for something. Those of us without children did NOT grow up without parents. We've all of us, been caught in that tangled and difficult relationship that comes with having a parent.

All this is to say, carefully, that I find sometimes when writing certain blogs I get real cautious because when I write something that says anything even, maybe, half way critical of a parent or a a parenting style, I get some immediate and angry responses. Some on the blog and some to me personally. I remember one woman, a parent of a fellow with a disability, sitting and bitching to me about her own parents and how they don't understand her, don't appreciate her, don't acknowledge her as an adult. OK. All fair things to say. A little while later I suggested that she needed to look at an interaction she had with her child. WOW. WOW. And, WOW again. I got this huge angry response. I'm just an uncaring professional (um, I'd been a friend up until then, I'd never actually worked with her or her son) that PARENTS KNOW BEST WHAT THEIR CHILD NEEDS, that PARENTS ARE THE ONLY ONES WHO LOVE THEIR KIDS. It was a truly frightening spectacle.

Now, of course, most parents of kids with disabilities are wildly reasonable and easy to talk to, most are reflective people who want to learn. But I fear any time I'm going to write a blog where in a parent is the 'bad guy' in the picture. It is possible for parents to be the one making mistakes. One of the biggest is the belief that because they love their children they know best what their child needs. Ask yourself this question - all of you reading this have parents, did the fact that your parents love you give them any insight at all into your needs or wants? How many of you had to 'shake off' parental love for a bit, even with all the wrenching pain that went with doing that? Sometimes love is not what a child needs. Sometimes, it's respect.

Do you know that this is the first time I've written an introduction to a post! I must be really on edge.

So ... here's the post:

They were sitting right beside me. Not figuratively, literally, beside me. I couldn't help but overhear. I tried not to. I knew it was personal. I knew I wouldn't be able to hold back writing something about it. So, I've waited weeks and weeks from the event, that way, this can't be placed in time. A man in his thirties, with Down Syndrome, is out with a care provider. They are sitting and chatting. A man came along, much older than the two of them and was shocked to see the fellow with Down Syndrome. They greeted each other warmly.

The care provider did not know the older man but recognized that the fellow she was with did. She looked at him and said, 'Would you like some time to visit with your friend?' He nodded. She got up and said, 'I'll just walk around a bit while you talk'. The older man sat down. I noticed that the staff never went far enough away that they were out of sight, but without question, she had given them privacy. She could not have heard what was being said.

The older man asked the fellow with Down Syndrome how he liked living in his own apartment. The man with Down Syndrome shook his head, sadly. 'What's wrong?' Seconds later there were tears. The older man reached out and comforted the fellow he was talking with, 'Come on, we've known each other for a very long time.' Then, through tears a story was told.

In effect the man with Down Syndrome was feeling completely controlled by his family. The called him every day. Even his cousin who lived far away, called once a week. He was expected to be there for the phone calls. They called to remind him about the rules. 'No girlfriends.' 'No booze.' 'No cigarettes.' 'No drugs.' 'No parties.' 'No staying up late.' The list went on and on. The fellow with Down Syndrome counted down on his fingers rule after rule after rule. He said that if he wasn't there for a phone call he'd have to apologize and explain where he was.

'Why do you think they are doing this?' the man asked. 'Because they love me,' was the answer. 'No, because they want to control you.' The older man shook his head, 'I've wanted to say this to you for a long time.' A long pause followed and the younger man asked, 'What?'

'You know I'm gay?' the older man asked, the younger nodded his head. 'You were the only person that was kind to me when I came out, that meant a lot to me,' words said with real emotion. The man with Down Syndrome said, 'I didn't know what it meant at first.' They both laughed, not like at something funny but like they both needed to. 'Well, my parents kept telling me that I needed to change, that I needed to move back home, that I needed to stop seeing my boyfriend, that I needed to see a doctor, that I needed to stop drinking. They had a long list too.'

'I don't know if anyone has told you this,' the gay man continued, 'but you are an adult. You are a fine man. You make great decisions. You need to learn how to tell people that love you to back off and let you be yourself. You need to be the man you are, not the child they think you are.' The man with Down Syndrome was incredulous, rebellion was being suggested, 'But they'll be mad.'

'Of course they'll be mad!!!' the older man shouted so loud that everyone turned, he didn't notice. He continued, 'That's what happens between parents and children when children grow up. There's always yelling!! Always! My parents yelled so much, they even told me that they'd stop loving me.' The young man's eye's opened wide, 'They said that?' The gay man wiped tears from his eyes, 'Yes. And they did stop loving me for a while. But you know what?' A shake of head responded. 'I never stopped loving me and that's what mattered. Later on they all came round but I had to stand up for myself. That's what adults do. Adults upset each other ... all the time.'

'So what should I do when they call?' It seemed a reasonable question, 'Don't do that!' came the sharp reply. 'Don't ask me what to do. You have been taught that other people know best what you should do. Decide what you think you should do and then do it. Damn the consequences.' There was a pause, 'I like to talk to my mom and my dad and my cousin, but I don't want them always telling me what to do and how to live in my apartment.' The gay man grabbed the younger man's shoulders, 'See, that's not so hard, know what you want, then go get it. Make people respect you. I had to learn that it was my job to get respect, even when people didn't want to give it. It's the same for you.'

The staff woman was making her way back, 'I so don't want to bother,' she said, 'but we've got to be going.'

The man with Down Syndrome, pause, swallowed and then said, 'Not yet, we're not done. I'll call you when we're finished.'

She was stunned, but she listened. She turned to walk away and give them more time. The gay man had his tears in his eyes as he said, 'That wasn't so hard was it?'

It begins.

46 comments:

rikke said...

wow, what a beautiful story!

CL said...

Wow, thank you for sharing this -- it's an incredible story.

Also I thought the introduction was very true and insightful. "Sometimes love is not what a child needs. Sometimes, it's respect." I found myself nodding and getting emotional before I even read the story. This is just so, so true.

uzza said...

Wow, this post is awesome. I don't see why it needs any warnings.

And that gay guy, he sounds like some wise old Master Po, we need more like him.

tekeal said...

that gives me much hope... that someone may speak with my daughter in such a supportive way, especially if i have forgotten to include respect in my loving her. and the care provider sounded pretty respectful too.... thanks again for sharing.

Penny Green said...

Oh Dave, you've done it again! Brilliant post!

I so wish that I hadn't been so busy at the DS World Congress in Dublin, cos now I know that if I had time to chat to you it would have been so valuable. Thank you for your care and insight.

And if it matters at all, I sometimes have doubts about the parenting of some of the young people I meet, but unlike you I'm too chicken to comment. I understand that as a parent you want to protect your kids and if they have an intellectual disability that carries on into adulthood, but our youngsters need to be allowed to spread their wings too, to whatever level they can cope with.

Anonymous said...

First thought, holey cow, you/listened and remembered all that! Second thought, Thank god you did!I am printitng it out and posting at both of the houses I serve, IF I have permission from folks themselves of course.
Another of my all time fav posts!!!

Louna said...

What a great post. I'm glad you finally found the way to tell that story, it's an important lesson to remember.

Nathan Dawthorne said...

Thanks for sharing. Best story I've read in awhile and with so much hope for his independence. I wish there was a way we could find out how he does!

Richard said...

What a great and inspiring story Dave! I hope you include it in your lectures, many people could benefit from this story.

Anonymous said...

The wheeliecrone says -

Thank you, Dave.

Your story was - as most of your stories are - right on the mark.

Respect is so important to me that I have requested that Aretha Franklin's record of the song "Respect" - R-E-S-P-E-C-T, find out what it means to me - be played at my funeral.

Again, Dave, thank you.

Dark Angel said...

Wow... just... wow. I actually ried while reading this. It's made me see that my parents are doing exactly the same. Maybe it's time there was a bit of yelling here too.

Laurel said...

Dave, lots to think on here. But as a parent I don't find these thoughts the teeniest least bit offensive. Many parents constantly wonder if they're doing the right thing and whether they should be doing certain things in a different way. Of course, that does make a person defensive sometimes; sometimes you do your best and, from the outside, it still doesn't look right, or enough. But the best parenting happens when you can swallow your pride and, admitting that you haven't chosen the best way, try to revise your approach.

Without knowing the family of the man you wrote about here, it's perfectly possible that they are overprotective out of misguided love, or in not understanding how truly independent and capable he is. But now that he's ready to reset some boundaries, I hope they respond with joy and understanding, and not defensiveness or fear.

Lovely story!

Molly said...

self advocacy is a beautiful thing.

Colleen said...

Dear Dave:

Totally worth waiting for!

Colleen

Kasie said...

Exactly!

Jenny said...

I only have 1 parent and it was the hardest thing in the world telling Mum to back off and let me live how I like in my house and how I'll spend my own money... I wish all the luck in the world to the poor bloke. He's gonna struggle. If only he knew the amount of love and support there is here for him!

Thank you for sharing Dave. :)

Anonymous said...

I think this is going to happen to my sister in a few years and I don't know what to do about it.

liz said...

This parent thanks you for the reminder that sometimes, parents need to let go.

ivanova said...

Wow, amazing!

Amy Julia Becker said...

Dave, Thanks for sharing that interaction. How profound on both sides, and what a wonderful example of how human relationships are meant to work--as mutual giving and receiving rather than controlling one another.

rickismom said...

WOW WOW WOW
This is a reral challenge. for a parent. Anyone who doesn't think so hasn't been there. I have often found myself pulled two ways in my desire to both protect/respect.

Anonymous said...

Carl Rodgers said something like "we are all born prince and princesses but our parents turn us into frogs." I often wonder if I am turning my son into a frog.

Man I wish parenting came with a handbook

Kristine said...

This definitely goes on the "Best of Dave's Blog" list ! I love it. I especially love the relationship these two have, and how lucky they both are to have such a good friend in their lives.

I also appreciate your intro. I know that it's hard to have your parenting choices criticized/questioned. What could be more personal and sensitive than your relationship with your child?

But I also have a VERY hard time with the pedestal that people put parents with disabled children on. People who barely know me or my family have been telling me all my life about what superheroes my parents are. Based on what? I'm sorry, but birthing disabled kids doesn't take any special talent. And the people praising my parents don't usually know anything more about our family than the fact that two of us kids have a disability. I love my parents, and I recognize and appreciate the things they've done for me. But that doesn't erase the deep pain they've caused, and continue to cause. They really don't understand me, or the world of disability, even a little bit. They've always done the best they know how, but certainly nothing sainthood worthy. I think there's danger in our tendency to place these parents on the pedestal. It doesn't promote parents learning, listening, growing, or changing their own views, and I think successfully navigating the disability world requires all of the above.

LVS G'MA said...

been following your blog for a long time, and i just had to comment this time!
as a parent of a child with down syndome I LOVE THIS POST! I will be referring my friends who don't already follow you to your blog. also sending this too a few who need to be reminding gently
thanks dave your are an awesome writer and i'm sure an awesome person

Belinda said...

I saved this for tonight because it was long and I wanted to read it relaxed! It was worth waiting for. It was a moving story and wonderful to witness the start of the journey to true adulthood and self-hood for that young man.

Daisy said...

Thank you for pointing out that even those of us who don't have kids used to BE kids. I don't like to criticize what parents do either because I know their job is tough. But honestly, the idea that parents always do everything right is such a harmful myth - it's a silencing technique that keeps our society from having honest conversations about the fact that children need to be treated like human beings. It's very similar to the ways our culture makes it hard to talk about abuse by any group in authority (police, teachers, etc.) because it's seen as an attack on individuals rather than a critique of how institutional power structures make abuse harder to prevent or detect.

Daisy

Becca said...

I'll be very interested to know if you received even one iota of backlash from a parent after posting this. This was an *amazing* post, and a beautiful reminder to me (and other parents of children with disabilities) to *let* my daughter live her life. While she's only 4 now, I believe this post will reside in my head for a long time to come, and will speak to me again when the time comes. Thank you for that.

Dave Hingsburger said...

In answer to the question asked, I have received not a single negative response to this blog post. All public and personal responses have been positive and reflective. Sometimes, I think, I create monstors in my head that don't exist in the real world. That may have been the case here.

Pink Doberman said...

Great Post!!

rickismom said...

Dave, Friday night I swallowed my fear and let Ricki attempt something on her own that I knew she could do, but had those "what if..." fears. Thanks.

Dave Hingsburger said...

rickismom, you made my day! really, truly, completely!!!

Anonymous said...

one word - Cool

rickismom said...

Dave, I'm glad. Here's the complete story:
http://beneaththewings.blogspot.com/2011/01/allowing-our-fears-to-rule.html

Trish said...

I think this is a great example of someone being ready and willing to accept advice and learn how to set boundaries. It sounds like the parent you mentioned at the beginning just wasn't at a place where she could do that (and who knows if she ever will be).

It's not a reflection on you that you offered some insight and it was rejected. Both you and the older man in the story you shared reached out, and that is the important thing.

Either way, I'm so glad you shared the story. I think many young people finding their way in the world could learn from it.

Anonymous said...

'monstors in my head that don't exist in the real world'
Wonder-full story, I read it with tears.
It's positive to know that there was no backlash to this post.
However I think the monsters are out there. I've found my child-less status deployed against me by colleagues when they don't agree with me. Of course their experiences of parenting are important and vital to inform our practice and I have much to learn from them.
But I think their parenting experiences weren't actually relevant to the discussion/difference of opinion we were having that day, and I felt the parent status was used as a put-down to me.
I think being childless, and being a childless couple, and being an infertile childless couple, and being a gay/lesbian infertile childless couple.... are all difficult in a context where 'the norm' is grow up-get married-have kids. Difficult, and seen as lesser status.
It's painful when this is deployed against me. I'm good at what I do and have lots to offer to parents and families with children, in spite of not being a parent myself.
Thing is, it only gets deployed when people don't agree with me. I suspect at other times, it manifests through the parents feeling sorry for me and my childlessness.
And deep down I feel sad and sorry about it too. I guess that's why it hurts so much.

Cynthia F. said...

Such a powerful story. I love that there's a history of these two friends being loving and respectful of each other when no one else would - even family.

Kristin said...

Oh wow...what a phenomenally wonderful story.

rickismom said...

Dave, a continuation of the "letting-Ricki-have-more-independence saga. I think you will enjoy.
http://beneaththewings.blogspot.com/2011/02/oh-downside-of-independence.html
[ I purposely did not post this on today's post as I am NOT trying to get extra readers from your site. I hope you get notifications about comments on old posts and will see this.]
rickismom (alias "torn in half between what I know to be right and my fears....")

Robin said...

Wow, you seem to always be in the right place at the right time, to observe life changing moments that others are experiencing. Thank you for sharing them. The older friend in this story is certainly a wise person.

Anonymous said...

This is an amazing post. I am a parent of a child with a disability. I try very very hard to allow my son the kind of independence that is appropriate to his developmental level, even though the process can be nerve wracking. But I want to add that this is an issue for parents today of ALL children, not just children with disabilities. College advisers remark on the incredible fragility of incoming freshman who have been sheltered from the results of every decision, and had their entire existence dictated by parents who honestly felt they had their best interest at heart. However, lest you think this is coming just from the parents, our society as a whole right now is not kind to people who want to allow their children to take reasonable risks. In some communities, letting your children play outside in the yard unattended is considered tantamount to child abuse, at least judging from the snide comments from other parents. (Even though at the same age, I was riding my bicycle all over town alone and staying out until the street lights came on, blissfully free of adult control.)

Kristen said...

Dave, I am a first time reader-

I read this, looked over at my 4-year old (who happens to have Down's), and reminded myself to let life happen. I will be saving this and pulling it out along the way, at school meetings, conferences, his first day at kindergarten, summer camp, Cub Scouts...

Self-determination isn't an allowance, it is a human right. I'll try to remember.

Stacy said...
This comment has been removed by the author.
Sumithra said...

Thanks Dave for this wonderful post. I absolutely loved it. I'll always keep this in my mind as my son grows up. This has been an extremely useful lesson for me. Thanks again Dave. :)

Stimey said...

I'm a parent. And I'm really glad I read this.

John Kelly said...

What a kind, thoughtful post! Thanks for writing it!

Anonymous said...

Fantastic blog!As a sibling caregiver it's a much needed reminder to be attentive to not letting my own opinions supersede that of my brothers goals. It reminds of a wonderful self-advocate I once saw speak at a DS conference who said "give me the dignity to fail."