Monday, July 04, 2005

Is it really Holland?

Here's a well-written piece from Brain, Child magazine that came to my attention via Andrea of Beanie Baby, who also has her own insightful take on the piece.

I admit that I have had my own reservations about the Holland essay. What about you all? Any thoughts? Did Emily Perl Kingsley spend too long writing for Sesame Street? Are her glasses a little too rose-colored? Do you think the Welcome to Holland piece is useful for its stated purpose (i.e. explaining to others what it's like to parent a child with a disability)? Is it a useful piece at all?


Blogger Shelly said...

It is an easy to describe what we go through as parents of a special needs child. I feel she uses rose colored glasses to see her view in a positive light. I use to do the same thing until the last few months of dealing my son's issues. I was/is tired of being perky and being positive. Life was/is not fun with my son. Yes we have good moments, but they have been few and life has been very stressful the 3 yrs. I want people to KNOW what I go through. I want them to know how I feel. I want to them to see what it is I go through each day and night. They haven't a clue to what life is like with a special needs child. each are so different.

3:03 AM  
Anonymous Andrea said...

Moreena, thanks for the link. This one and hte one on the sidebar. It was a lovely surprise this morning.

I won't comment here on what I think about my own post, since that would be silly, but I look forward to reading any other reactions--good and bad. Thanks again.

9:47 AM  
Blogger Tara Marie said...

This comment has been removed by a blog administrator.

10:00 PM  
Blogger Tara Marie said...

I think that you need to look at a few things when you want to critique ‘Welcome to Holland’ [which I must proudly say my daughter’s picture accompanies the essay on the National Down syndrome Congress’s new parent resource pages].

I have personally never related to ‘Welcome to Holland’ because for me, I never mourned my daughter’s diagnosis, but I do see where the metaphor might help some people try to relate to the journey of raising a child with a disability.

You have to realize that Emily Pearl Kingsley’s experience with raising a child with a disability came at a time when a child such as her son Jason or my daughter, were routinely shipped off to institutions and worse, left to starve to death [this was much more common that our society wants to admit.] Just by the nature of their syndrome and being able to be diagnosed at birth, they were signaled out and labeled as not worthy to live in society. So when she uses the reference of disease, pestilence, etc….I fully understand why she used that metaphor. Children with disabilities at that time were likened to horrible terms such as that.

As for her Rose-colored glasses………..her knowledge comes from living with and loving a child with Down syndrome. I wear those same colored-glasses. [though I should point out that not all parents, parenting a child with Down syndrome would agree with that, so please don’t think I’m generalizing, I’m not,,,just sharing my view on this journey]

Life is slower for us…..thus why she reached for the metaphor of visiting two different types of cultures, one a bit more faced paced, one a bit slower. A perfect metaphor for life with a child with Down syndrome.

Should it be used as a blanked statement of all disabilities? I don’t think that was what the intention of her essay was when she wrote it….she wrote about her life and used metaphors for what life was like for her raising her son.

I have to tell you that I so enjoy this blog and all the links to ‘Holland’ because I must be perfectly honest….I have no clue what it is like to parent a child with other disabilities…..My journey with my daughter has been very easy for me, and actually quite enjoyable. We don’t have any health issues to deal with [although 40% of all children born with T21 have congenital heart defects and/or other health related issues],,,,so my journey has never experienced surgeries, hospital stays, doctors and specialist appointments or tense times of medical uncertainty.

I know developmental delays. I know stares and whispers, because my daughters disability is written all over her beautiful face and body……so others judge her by their experiences [and most have never had any first hand experience, so they rely on myths and stereotypes]… for me, if someone reads ‘Welcome to Holland’ to try to get a glimpse or understanding into raising a child with a disability I feel it is a great piece, because it promotes understanding in a way that the general population can understand.

Maybe we should write a piece titled ‘Postcards from all around the World’ because the metaphor between two places is just not broad enough to cover the scope and spectrum of every disability…….and you can also get postcards from the same destination and have two completely different journeys.

Peace, TM

10:04 PM  
Blogger Amanda M said...

The common thread about both the Brain Child essay and the Welcome to Holland essay is that life with a disability is a life lived in a very different place than one expected to be. And yes, some of those places are like war zones - completely traumatizing - and some of them have the simple pleasures of a different, slower pace.

Power to Cornfield for "calling it like it is" for her ("the experience of having a baby in the hospital is akin to being tortured in a Third World prison").

I think that life with each disability is very, very different. I do feel like life with biliary atresia is like living life in a very different landscape. When Katie was little I felt like it was this rapidly changing landscape for which we had no map, a landscape of steep slopes and unexpected shake ups, avalanches and earthquakes - I often felt like the baby was about to fall off a cliff and we were running as fast as we could to throw ourselves in front of her to catch her when she fell, to cushion the fall.

Worse yet was the feeling that some of the family decided not to run, to save themselves only, and then our friends just faded we end up running marathons blindly, snd mostly alone. (Whenever we look over and see others running around in the same landscape dancing around the cliffs, we are incredibly moved to have the company.)

I still feel like we are without a guide, and that when I look at the actual landscape of biliary atresia, when I look around the actual planet to see what the experiences are what I find out is deeply disturbing (see Moreena's essay on Dubai a while back on her blog). Holland this is not.

However, I still firmly believe in Kingsley's point not to overlook the joys of where you are - the need to treasure what you have. Biliary atresia is a bruising landscape with some lovely valleys - it's not Kingsley's Rembrandts and Tulips - but it's got joys all it's own. I wouldn't trade my time with Katie, or my perspective on life, love and suffering for the world, and there's no way I would be the person I am without it all.

Cornfield's final point is that for her the Kingsley essay doesn't hold water because she can never leave Holland/Beirut/Afghanastan/Schmolland. It's different for us because liver disease is considered a hidden disability and there are days that we CAN take a break from it - fly out of country for a day or two, but then we have to go back.

All in all, I don't care what name you give to this landscape that we never expected to live in - the relief in both the Kingsley AND the Cornfield essays is the recognition that we are in a different place. Thanks to them both for calling it like they saw it.

12:41 AM  
Blogger trisha said...

I love what you all have said here. I think you ought to combine these comments into a separate post!

I would add to it as well, but my son is walking around making that screamy-monay sound today (and for the last two weeks), and I simply cannot concentrate!

Seriously, though, great writing, y'all!

3:35 PM  
Blogger Stacy said...

I've struggled with this post since reading it yesterday. It held special meaning for me, as I spent many days in the NICU with my twins. My daughter was in for 55 days - my son for 83 days total. Granted, these were concurrent - but, only 38 of those days in the same hospital.

I never received the "Welcome to Holland" essay while in the NICU. And, I don't think it is fair to compare an NICU stay with that of a child with special needs. Many (maybe most?) NICU babies go on to lead mostly normal lifes. Life in the NICU is difficult - and may be more comparable to war. Life in the NICU is devastating with daily battles and exhausting days. But, life in the NICU (for most families) is short-lived.

However, as a "liver" mom - I think that the "Welcome to Holland" essay hits home. This isn't how I imagined motherhood - but, on the same token, his disease (biliary atresia leading to an eventual liver transplant) has shaped my son, my daughter, my husband, and myself. I am a different person, and I have come to appreciate some of the smaller things in life.

Does the essay apply to all people who have a child with special needs? I'm sure that it doesn't. But, for a good many of us, it hits home and does allow us to appreciate our life - no matter how different it is than what we expected.

9:44 PM  
Blogger trisha said...

Well-said, Stacy.

I completely appreciate my son's specialness. He has taught me more about myself, about life than anyone or anything else, ever.

Our lives are so very different from most, and it isn't always easy, but I wouldn't trade one second...

1:24 AM  
Blogger Sarahlynn said...

I still haven't read the essay, but decided to finally comment anyway.

In my (admittedly limited) experience, the Holland piece more accurately reflects life with a child with Down syndrome than it does parenting a child with serious medical issues.

There is an upside to parenting a child with Down syndrome. In fact, there can be several. For example, children with Down syndrome are often very loving. They often don't have quite as well-developed walls, so they can be very giving as they express their love for you and their enjoyment of the world around them. Kids with Down syndrome are also often very influenced by music. The enjoyment my daughter gets from music - and her skills at it - are palpable.

On the other hand, there have been far fewer "plusses" to having a child who was born with a heart defect. Sometimes I like how "strong" I've become, handling routine trips to the lab at the hospital, etc. While other mamas at our playgroups might freak out over relatively minor health issues, I'm more confident in those waters, if not happy to be there. And the highs after harrowing passes can be exhilarating (though not enough so to make up for the huge let-down afterwards; maybe I'll write about that sometime).

Anyway, yeah. I like the piece, though I don't think it's a perfect metaphor. And I don't think that it applies to medical issues as well as it does to Down syndrome.

8:41 AM  
Blogger David said...

This is very powerful. I came accross this while reserching Pfeiffer syndrome. My some was boen with this. This essay sums up our family experiance.
I have made a picture with this text overlayed on a background of my wife's belly as she was pregnante with our son. download it, print it, no charge.

8:21 PM  
Anonymous Lesa said...

i find it interesting that someone can say that they have never mourned a child's disablitiy. It seems to me that any parent
wants the very best things for their child. I don't see where a life of struggle and heartache falls into that picture. Mabye its like the person that says that it was "God's will".

11:20 AM  

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