Re: Dan Kennedy's book

[Guest guest]

Alyce --

Thank you for your kind comments about " Little People, " and for sharing your

own experiences.

Those of you who are interested in my book might like to know that I'm

currently working on a free Internet edition. It's been out of print for a

bit, and, though you can still buy a used copy on Amazon.com, you can no

longer find a new copy at your local bookstore. I'm hopeful that an Internet

edition might generate enough interest to lead to a paperback deal. But even

if that doesn't happen, at least the book will be available in some form.

Dan Kennedy

On 5/28/07, Alyce <alycew@...> wrote:

>

> I finally read " Little People - Learning to See the World Through My

> Daughter's Eyes " - yes, I know, my reading list is a little backed up.

>

> Here are my thoughts:

>

> Dan and Barbara seemed to have done a great job of embracing the LP

> community, which I have long thought must be one of the difficult hurdles

> for a parent of an LP baby. To the world, LPs are funny-looking, and I've

> often thought that it must be difficult, even as parents are trying to

> process what's going on with their child, to interact with these

> funny-looking people, and realize their child will be funny-looking, too.

> Perhaps it's not unlike the first time those of us who didn't grow up in LPA

> walked into a meeting and saw a roomful of LPs. Anyway, though the Kennedys

> don't need my approval, I commend them for getting over their own adjustment

> woes for the sake of their child.

>

> Home health care: this was a minor part of the book, but it struck a great

> note with me. (achon, age 51) has serious medical issues, and has

> home health care and a weekly nursing visit. The nurses are great. The home

> health agency is, I suspect, run by Nazis. Hurricane Rita left our area with

> (among other things) a labor shortage in many areas, particularly home

> health providers (people who come in and help with personal care and light

> housework). But rather than say, " We're having trouble finding enough

> people, " the attitude has been, " You must be getting too much service, " and

> at times being very rude about getting in my face with " We're here to help

> HIM, not YOU. " Like I asked for any help! (One thing that goes on at times

> is that the provider will decide to " help " me as well, even though I am

> saying, " Don't help me! " ) It is a sticky situation at times: I could not

> possibly do all for him that they do, and don't want to alienate the people

> he depends

> on, but I live here, too, excuse me! We have to work out who does what -

> They clean the bathroom floor and sink, because he uses them, but they're

> not allowed to clean the shower, because I use that. (Like who asked them to

> anyway???) It gets that nit-picky. And things happen that I can't help if

> I'm at work. If the dog has an accident, no, I can't leave work and drive 20

> minutes, clean it up, and drive 20 minutes back to work. But heaven forbid a

> provider have to clean it up or just put a paper towel over it until I can

> deal with it. The Kennedys' experience again reminded me that it's just an

> excuse for the difficulty of finding enough hands to do the work. I get

> frustrated with the insensitivity of it: It's bad enough that this man in

> the prime of life requires all this help - does it have to be made a

> constant source of contention? Okay, that little vent makes me feel better!

>

> The other thing I've been thinking about since reading the book is the

> disability thing, i.e, is dwarfism a disability or not. When I was

> younger, I didn't think of myself as disabled. I think part of this was my

> family's effort to encourage me that I was not UN-able to function in life;

> I don't think it was a denial thing because I was also always told that I

> would always be short and have certain limitations, and that was okay

> because people are different, etc. etc. Also, until I was pushing 40, there

> was not that much I could not do. Now I am much more limited in how much

> walking I can do, how long I can stand, how much climbing I can do, and I

> would be nuts to think I have no disability. Of course most people

> experience more limitation as they age, so I don't know where the line is,

> but I sure do know what side of the line I'm on. :-) What I also know is

> that at the age of 50, I feel very strongly that I know who I am, I accept

> who I am and what I can and

> cannot do, I like who I am, and anyone who doesn't like it can TAKE A

> HIKE. I have never been an in-your-face kind of person, but I have just have

> no time to waste on people who can't accept me as I am.

>

> Anyway, I say again that Becky Kennedy obviously chose her parents very

> wisely, and I know she has a bright future.

>

> Alyce :-)

>

>