Wednesday, October 08, 2008

Just A Note:

I apologize for the very, very, brief post. I lectured yesterday in Syracuse and drove back to Buffalo. I have to be at the airport tomorrow at 4:30AM. Needless to say I am frazzled. I'm looking forward to my trip to Boise as it's in Idaho, one of the two states I have not presented in. Counting down the states!

I did get a couple of emails yesterday from people who didn't like my post yesterday and said that I should stick to only positive and uplifting posts about families. That families have it hard enough. That I didn't have a kid with a disability so I could never know.

OK, I get some of that. But I think there is room for us to discuss what we see and what could go wrong in support. Heaven knows I've taken on the support I've seen in the community from those paid to care.

Even if I mis-read the reality of a situation, at least what I've seen is enough to give me grist for the blog mill. I don't see parents of kids with disabilities as being so fragile that there can't be discussion of parenting approaches. I think if you read this blog regularly I point out a lot of good parenting, a lot of wonderful family stories.

But they aren't all wonderful. What I saw in the rest stop was disturbing and I wanted to talk about it.

So, I know these blogs will be less popular but if I wrote only for 'popularity' I'd be a bore. So, thanks for the comments. Also, the notes I received were all very positive, no name calling, no accusations, no nastiness ... just disagreement. Thank you. I appreciate your point, I appreciate even more how you all expressed it.

Next post from Boise!

15 comments:

yanub said...

Dave, don't take it easy on parents. Even well-intentioned parents can simply be wrong. And if we are indeed well-intentioned, we should be open to learning when they are wrong. It's very easy for a parent to smother a child with a disability instead of encouraging their independence and self-development. If some parents are upset to learn that they are doing harm in the long run, they need to get their priorties straight; they should be glad to get a head's up to change what they are doing. Parenting is a process, and you are right that it should change as the child ages. Sometimes, it is hard to step back, but that can be true for any parent-child relationship. Disability is not permit to strangle a child with the apron strings.

Tony Osgood said...

I was once told my an old friend who converted to Islam something his teacher told him, that unless one is castigated seven times a day by ones peers, you ain't doing Islam right! Meaning, of course, the easy path on non-contentious comment is tempting but not necessarily good for ones soul! The person who talks straight is also talking kindly, whether we feel a tad offended or not.

theknapper said...

What I've always liked about your writing is your words make me think & reflect & be uncomfortable and then often there's possibilities to change & to forgive myself for my mistakes and to go on.

Rosemary said...

I learned something through yesterday's post. It wasn't easy to think about, but I did. With your words, you helped me see the situation in a different light. Thank you.

Riley Heiner said...

Dave, I think that the people that responded that way are only doing so because they don't want to admit that they could possibly be wrong. Parents are never perfect, some make giant mistakes, others make small mistakes, some make many, some few...

But I think the best parents are the ones that are willing to admit it when they have made a mistake, rather than attempt to take it out on someone else for enlightening them. I can only hope that those that responded to you in that way choose to correct their mistakes for the benefit of their child rather than refuse to acknowledge them.

By the way, I read your blog every day and enjoy it immensely, and often find myself quoting you or giving out your blog to others to read. So keep up the good work!

Nicki said...

Dave, I've been following your blog for quite some time. I thouroughly enjoy the posts from you. They make me think and I love that. People need a little grain of something to chew on each day, it keeps us fresh & keeps our minds open. Honestly, your blog is the first thing I click in to when I sit down at my computer in the mornings.

Your post yesterday opened my eyes. I am the mother of 4 children, the youngest has DS. My little guy is 3.5 years old and I love him beyond belief. My soul has a connection with his that is unlike my connection with my other children. Not more, just different. Unless you have a child with special needs you probably aren't aware of the power and strength of that bond.

With that said, I'll get to my point. I saw myself and my son in your post yesterday. I saw our future. And I saw the way it would affect my son. It is extremely difficult to cut those apron strings, or even loosen them, when you have such a bond with your child. But, thanks to your post, I now know that I really do need to try. However much I'd like to hold onto my youngest son forever (he is the baby of the family, who ever wants to let their baby go??), I know it would be detrimental to his future. Thank you for your perspective on this and thank you for helping me become a better mother to my son.

gracie1956 said...

The things I have read on your Blog have made me think, and even better made me act different. I hope I always remain teachable.
Chances are, if I react strongly, perhaps I had better examine my beliefs and see if they are still valid or maybe they are outdated. No one likes to admit being wrong but it beats the hell out of the alternative, which is damaging to my child, and all because In the end am I just trying to protect my ego?

gracie1956 said...

The things I have read on your Blog have made me think, and even better made me act different. I hope I always remain teachable.
Chances are, if I react strongly, perhaps I had better examine my beliefs and see if they are still valid or maybe they are outdated. No one likes to admit being wrong but it beats the hell out of the alternative, which is damaging to my child, and all because In the end am I just trying to protect my ego?

Anonymous said...

Dave, you were very right to be disturbed by what you saw yesterday. As parents we absolutely (for the most part) try to do our very best for our children. But, the challenge of changing how we parent as children grow and mature is daunting and it is often so easy not to address the tough issues like this physical dependency.

Just a thought for those parents that feel everyone should just stay out of it. As parents we are not able to care for our adult children forever, at some point we will leave our child out there on there own. Wouldn't it be best to work at helping our adult children to be as physically and emotionally independent as possible so that when we are no longer here they will at least have half a chance to make it through?

Nikki said...

Ok, I read what you wrote, and the problem is ..... I don't get it. I don't get with whats wrong with what you wrote, nothing is wrong.

As a Mom, a single mom of a child with Down syndrome, I can tell you that enabling your child to remain childish is wrong and cruel. It teaches a child dependence not independence. We strive for success, fullest potential, independence, a Life Worth Living.

So, I don't get why everyone is so upset. I don't get what's wrong with an opinion. Everyone is entitled to one, and Dave, you didn't say anything wrong, or am I just not so sensitive?

darrenh said...

Dave, I'm the parent of a child with developmental and physical disabilities and I support discussion, like you prompted with your post. True, you can't know every part of what you just see in a Fuddruckers, but presenting the thoughts you did have is legitimate. Then let the discussion begin. That's the great thing about a blog. As a blogger, you put a view out there. Maybe it's right on. Other times, you find out why it's not when people who know more about the situation comment. You almost always learn something either way. That's what makes blogging different - and dare I say better -- than just reading or writing an article. Keep sharing the positive and the negative.

BenefitScroungingScum said...

Dave, we often have differing opinions, but I think in many ways that's the most important thing about the disabilisphere (thanks to ouch where I pinched that term from!)
I really believe that equality for us as disabled people will not occur until we can band together in the same way other minority groups have done before us.
Exposing negative behaviours within our own and finding ways to deal with them as a community is to me, the first step on the long journey to unity.
BG x

Ettina said...

"As a Mom, a single mom of a child with Down syndrome, I can tell you that enabling your child to remain childish is wrong and cruel. It teaches a child dependence not independence. We strive for success, fullest potential, independence, a Life Worth Living."

I am 19 years old and don't live independently. Not just because I don't have the necessary abilities, but because I couldn't emotionally handle living away from my parents. I'm also a 19 year old who still cuddles on my mother's lap and likes to be hugged by her. Is my mother being cruel - not by forcing or pressuring me to remain close, she hasn't done that, but just by allowing me to be as close as I need to be? I'm not a typical 19 year old, I don't have the same kind of needs as most 19 year olds. Treating me like you'd treat a typical 19 year old when I'm not one would be cruel, not the other way around. I know there are some parents who pressure their kids to remain closer than is healthy for them, but there are also some kids who need to stay close at an older age than is normal. Just like some people still need certain kinds of physical care at an older age than most people, some people need certain kinds of emotional care at an older age too.

rickismom said...

After reading your previous post, I didn't write a remark, being short on time. But things that you wrote in one of your books prompted me years ago to not cuddle Ricki in public, and to make normal "borders" at home. She isn't always happy about it, but I have no doubt that for the long-term it is for her benefit.

Nikki said...

Independence is much more than living on your own and away from your parents. Independence is learning to do things for your self and to be able to advocate for yourself. Your doing fine in that area.

As to your question, yes, it is cruel to allow your child to be so dependent on you that they can not function within thier environment.

Cuddleing with parent's is OK, but this is something different. This is a child not able to function within society on an everyday basis. By promoting this, promotes disability and not ability.

Is having a healthy relationship cruel, No it's not, but this is not healthy.



"As a Mom, a single mom of a child with Down syndrome, I can tell you that enabling your child to remain childish is wrong and cruel. It teaches a child dependence not independence. We strive for success, fullest potential, independence, a Life Worth Living."

I am 19 years old and don't live independently. Not just because I don't have the necessary abilities, but because I couldn't emotionally handle living away from my parents. I'm also a 19 year old who still cuddles on my mother's lap and likes to be hugged by her. Is my mother being cruel - not by forcing or pressuring me to remain close, she hasn't done that, but just by allowing me to be as close as I need to be? I'm not a typical 19 year old, I don't have the same kind of needs as most 19 year olds. Treating me like you'd treat a typical 19 year old when I'm not one would be cruel, not the other way around. I know there are some parents who pressure their kids to remain closer than is healthy for them, but there are also some kids who need to stay close at an older age than is normal. Just like some people still need certain kinds of physical care at an older age than most people, some people need certain kinds of emotional care at an older age too.