Wednesday, January 10, 2007

More Gray. And Maybe a Few Other Colors.

Even gray comes in different colors.

I haven't been able to get Ashley's story out of my head since I first heard about it last week. I keep mulling it over, thinking and rethinking it, wondering what I would have done in the same situation. Because of course, even though my son is similar to Ashley, I'm not in the same situation. No one is. Just as no other parent is facing exactly what we are facing with Ethan.

I'm fascinated by the hundreds of comments I've read on message boards and blogs. There's no denying that Ashley's story has resonated with people. Which, no matter how you feel about the story itself, is a good thing. People are discussing the care of disabled as a major headline. For a few minutes, parents of severely disabled children are the experts. They are being sought out for their opinions and experiences. To share their child's stories. People are acknowledging how lacking our nation's support system is, and demanding changes so no other parents have to turn to such drastic measures again.

And frankly, I think it's about damn time.

For the most part, the only people who think about the disabled are their parents and families. I'll be honest - until Ethan was born, I never once thought about how people manage to care for a disabled child. I honestly assumed that anyone who was disabled, especially children, automatically qualified for money from the government. That you got Social Security benefits, assistance for in-home nursing care, and free health insurance.

Yes. I was that ignorant.

The truth is, disabled children do not exist in the government's eyes until their 18th birthdays. Until that point, they are considered the parents' full responsibility. There are no additional benefits or support available unless their parents are extremely poor or until the child turns 18. And even then, there isn't much worth calling "support". Extremely limited funds. Few available daycares so parents can work full-time. Limited public facilities that make true mainstreaming possible. I don't think the average person realizes this until it hits them personally. But maybe, through some of these conversations, they're starting to learn now.

However, while I'm hopeful Ashley's story may effect awareness, I got a bit discouraged when I realized the only blogs I saw discussing this story were medical blogs and parents of special needs children. It has not spread much farther than that. (Granted, I do not read every blog that exists. And I did find this one entry at Wonderland - Finslippy's second home - but it seems to be in the minority.)

My family members heard of the story, but hadn't listened closely and weren't really sure what it was about. Coworkers never talked about it at all. When I brought it up in conversation one day, none of them had even heard of Ashley. They had however, heard and chatted about Howard Stern's recent raise, the blizzards in Denver, and the new plans for Iraq. This just reinforced my belief that Ashley will be a passing interest, taken over in a week or two by a new "headline grabber". Only time will tell.

In the meantime, I encourage all of you to read about this story. To think about it, and more importantly, talk about it. Even if you think you've made up your mind, you might want to seek out an opposing opinion, just to get another point of view. There are many good thoughts out there that I think are worth reading - even those I may disagree with. If you're looking for more insight, check these out:

As Dream Mom says: "You Could Be Next". What many people don't consider is that we all have the chance of becoming disabled one day, or having someone close to us become disabled. This topic does not just affect "those kids" or people who care for them. It affects every human being. We are all equally fragile.

***

I wanted to respond directly to some of the questions that were posed in my last entry:

becca asked: Mete - can you not get some bathtime-related assistive tech. for Ethan?

Simple answer: "Yes". Real answer: "Yes. With lots of money."

Our bathroom is the size of a small closet. There is no way we could comfortably get a lift in there to use. Besides, the door is so narrow that we couldn't wheel him in or out of the room anyway, so he'd have to be manually moved from the lift back to his chair in the other room. We'd have to purchase the lift itself (relatively expensive) and do major renovations to make our tiny bathroom work. And none of this would be covered by insurance, because of course bathing is NOT a medical necessity. At least in the eyes of insurance companies.

Right now, our current system works, using the bath seat we purchased (out of pocket) last year. We know there will come a day when this won't work anymore, and we have a plan in place to deal with that. Frankly, we are outgrowing our current home in more ways than this, and we hope to move in the next few years. Even if we don't, we would plan to build a new bedroom/bathroom area to support Ethan and his needs down the road. At that date, we'd look into the lift vs. roll-in shower solutions.

But honestly, my point in Gray was not to focus on how difficult it is for us to bathe Ethan. Rather, it was to say that Ethan is losing more and more of things he enjoys as he gets larger. His mind is that of an infant, and as all infants do, he loves to be held, to be carried, and to splash freely in the bathtub. But as he grows and gets bigger, I watch him losing out on those things that he enjoys so much.

Yes, we can find alternate solutions. There are ways to adapt, and we employ some of them today. But it still makes me sad that he is losing these few pleasures he has. I honestly believe he was more able to enjoy life at the size he was two or three years ago than he is now. And it will only get harder. Our holding, carrying, (and Jete's rough-housing with him) has grown very limited as his size increased. One of the only ways we can communicate with him is through touch. While I can sit beside him, and hug him, and hold his hand, I still feel he is becoming more and more isolated from us.

I just wanted those who quickly called these parents selfish and evil to think about that for a moment. Think about your child as a baby, and think of never being able to hold them or dance with them or bounce them on your knee. Think about being forced to move them only from their bed to their stroller (or wheelchair) and back again. Think about how that makes your child feel to not have that additional contact. When I thought about my own situation, I could relate to some of their motivation, even if their actions were less relatable.

***

Liza asked - Are you considering seeking a similar course of treatment for Ethan?

No. We aren't.

Obviously, my situation is very different. First and foremost, Ethan is a boy. We will face different challenges as he goes through puberty than if he were a girl. If he were, I still don't think we would take such drastic measures. He's been through so many surgeries and medications, I can't imagine adding more to them right now.

That said, if he were a girl I would probably make decisions as issues came up. If "she" had problems or discomfort with menstruation, I would have no issues with using medications to handle or stop that. If "she" developed a large chest, I'd have to see how comfortable that was with the stroller and stander and look into possible reduction (which several adult women in my family have opted for). I would not be opposed to making my child more comfortable, in the least invasive methods possible.

I don't believe the surgeries Ashley had were that extreme. But if it was something posed for my child, I might have issues with the permanancy of them, and the fact that they were pursued with no real proof that they would help. Yet, there are many who believe these surgeries were not only wrong, they were "barbaric". Some of them would oppose even the lesser measures I might take. They don't believe you should intefere with a healthy body's "natural" processes. Personally, I believe that borders on an argument against any medical intervention.

Of course, I come from a different place. We put our three year old son through a 10 hour surgery, cutting and reforming his bones, slicing into the tendons in his groin and legs, trapping him in a full body cast for three months. All for something that might happen. His hips were displacing, and he might get arthritis in those joints someday. Then again, he might not. We knew that from the beginning. Someone - a purist, perhaps - might say that surgery was unnecessary. Barbaric, even. It's all a matter of perspective.

***

In a week of thinking, reading and analyzing this story, I'm still not sure exactly how I feel. Many things the parents did and said bothered me. The term "pillow angel" strikes an uncomfortable chord. I don't like the fact that the photos on their blog give privacy to everyone in the family except Ashley. And I find the arguments that they did this in part to prevent sexual assault weak, especially considering how many pedophiles are out there.

However, I do believe they love Ashley. I do believe they had her best interests at heart. And I do believe they had the full backing of medical and ethical experts. I do not believe they "mutilated" her as some are claiming, nor do I believe they are abusers or criminals as others say. And so, I find myself defending them.

But really, I feel as though I'm defending myself. I'm defending the right of a parent who knows and loves their child to be able to act in their best interests. After all, we are Ethan's voice. We are the only ones who know him at his core - his needs, what makes him happy, what causes him distress. It frightens me that someday, because a stranger disagrees with us, we may lose the right to decide what is best for him. Ethan's voice would be silenced.

***

Today is Ethan's birthday. He turned five. In five years, he has been through so much, and I'm sure the future holds much more. Sometimes I think we're up to the challenges, but other days I'm not so sure. I worry about the future. Will he stay healthy? Will we stay healthy? Will we continue to be able to care for him? Will our insurance woes get worse? Will he need more surgeries? Will he be in pain? Will he be happy?

We can't answer those questions. We can only do our best to make today the best it could be for Ethan. I think of Ashley's parents, and I can't help but believe they are trying to do the same for their daughter.

I wish there were more easy answers. I wish no one had to make decisions like this for their children. I wish things weren't so damn complicated. I wish the colors on the horizon always held more blue, and less gray.

18 comments:

Jacqui said...

Mete,

I was that ignorant too. Then I had Moo and I realised that I lived in a fairy land beforehand. I have noticed that we are the only people still talking about this. I too hope that changes.

Take care,
Jacqui

lisa said...

I was ignorant too. I think most people are, unfortunately. This post really choked me up. Ethan deserves all the joy in the world, no matter how big he gets.

Liza said...

I think everyone is ignorant unless it happens to them or someone they care about. Only when they've struggled with some of the practical aspects can they fully start to "get" the extent of the need for better services. In the long run it would even prove much more cost effective, I am sure, because enabling more families to keep their loved ones home and a part of the household would save hospital and rehab facility/nursing home dollars BIG TIME. If it was easier, maybe fewer parents would walk away (when my baby was in the hospital for a "tuneup" one time we saw babies with similar issues who lived there because their parents left them there and foster families weren't available that were willing to take them). I think you expressed yourself very well :-)

erica said...

OMG, he's FIVE? Jesus. I remember when you told me you were pregnant with him, which seems like both yesterday and a million years ago. Dammit, I am old. (Where's the surgery to stop THAT from happening? Because I would like to sign up for it right now, thanks.)

You all have been through so much in these 5 years, I can't even begin to imagine how you handle it all. I know how lucky you and Jete feel to have Ethan, but I want you to remember how incredibly lucky he is to have you, too.

Kelly said...

(Sigh)

If only we NEVER had to make medical decisions for our kids. If only.

But you're right about the government help. We actually got some....

...but they can't find ANY nurses to come out and fulfill the obligation. Talk about a catch-22. We get the services, but no one will DO the services.

As far as the bathroom issue goes, 2 things come to mind: a community agency that will come out and help you expand your bathroom (if at all possible), and swimming at the Y. One such agency came out to do our ramp, and they would've helped us with our bathroom if we needed that. Perhaps there's something similar near you. And the YMCA may have swimtime therapy that Ethan would enjoy. Just a thought.

As far as the Ashley treatment goes, here's my official position on it: if ANY procedure would increase my daughter's quality of life, then we would highly consider it. Even if that means that WE (her family) reap some secondary benefit from that decision. Her disability affects everyone in this house. There's nothing wrong with ANY of us reaping benefits from Michaela having a better quality of life.

Our quality of life is important too.

anne nahm said...

Hi. Glad to find you. Hope you don't mind if I stick around and read.

Anonymous said...

Reading your post chokes me up - I can't imagine not being able to hug your mommy and have her hold you and rock you on her lap and tell you that everything is going to be ok. And I can't imagine how it must feel to be the mommy, whose child needs comforting, but can't come to her and she can't pick him up and put him on her knee, and has to settle for sitting close by.

madison said...

I wanted to tell you that I have read the Ashley story, your story, and I have also been reading Dream Mom since she first began to blog.

Something isn't settling right with me here. First, you should know that I am not a parent of a disabled child. My empathy goes out to every one of you. I honestly don't know how you do what you do.

I'm shocked by the number of people who are so against the Ashley treatment. Im shocked by dream mom and her response to it. I'm shocked that society punishes you, and your family, more than they help you.

Thats what it is really about. Not having what you need, to do what has to be done. How can so many people pass judgement when they havent walked in your shoes, or in Ashleys parents shoes?

Is a better alternative to allow these children to be placed in residential facilities upon maturity when parents can no longer lift or care for them?

I wish everyone who critisizes these decisions, would offer their time and their money to make your lives, and your childs life's easier...

I just wanted you to know that I hear you and I wish things were different for you, and for them, and for dream mom, and all the other's who are living this life.

Ben & Bennie said...

Mete, as part of that extended family I talked about last night I want to thank you for your insights, support, and love you share with us through your blog and your comments to others. You don't realize it but yours and Ashley's families were with us in front of that camera.

I look forward to walking our path together in the coming years.

Ryn Tales said...

Hi Mete,

Ethan should be eligible for Mass Health and bath seats through that and nursing or PCA care. I can't believe he is not on it. Ellie wasn't on it for a long time and in fact we got rejected twice until we met a nurse who helped us with it.

Let me know if you want to discuss. It's not based on income when the child's needs are sever enough.

Love your blog and your thoughtful posts.

Mete said...

Thanks, everyone.

Kelly - I do plan to take Ethan to some sort of swim program SOMEDAY (as long as it's after work, or on the weekends, and accessible, and blah blah blah). Right now, it's too difficult with our car situation to take him too many places other than what is necessary. We're planning to get a handicapped van sometime this year, and it will make it much easier to transport him to not only medical appointments but fun stuff too.

Ryn Tales - We did apply and were denied MassHealth because of our income. We DO qualify for Commonhealth. However, it's still based on income and would cost us a few hundred extra per month on top of our other insurance. (I've heard from folks that they should then reimburse your other insurance's copays, but I need to see that in writing before believing anything.) However, when we applied for Commonhealth, it was to help pay for certain equipment which was not covered by our private insurance. And unfortunately, even Commonhealth has a list of things it didn't cover, including what we needed.

If you have more specific info that you can give me to help, I'll be glad to look into it. Please email my address on the home page if you have a link or something. Thanks.

BTW - We're not looking to get someone to come into our home right now. We want to take care of Ethan ourselves, and we're fully capable of doing that today. Eventually things may change, but right now we're getting by just fine.

Ryn Tales said...

Hi Mete,

I could not locate your email on your profile so I am replying here.

Kaleigh Mulligan is the Mass Health program you might consider applying for. The income of the child determines eligibility, not the income of the parents.

If you want to discuss more post a comment with your email on my site.

Meredith said...

This story really made me think, that and reading your blog and other blogs from parents with very disabled children. I have been very ignorant but I want you to know that I have been talking about these issues a lot with pretty much everyone I know.

Frances said...

I admit I know nothing, except what I learn through you. This post choked me up. And enlightened me.

Emily said...

Just checking the blog and realized it had been awhile, and I do hope that things are going well.

I have learned so much from your blog and your links. Thank you for sharing so much. It's very helpful.

Ryn Tales said...

Hi Mete,

I just read this - sorry am trying to catch up on your blog. I found it really illuminating. Ethan is lucky to have you as a mom. I found myself very open to what you had to say about the whole Ashley thing because you were so balanced. You weren't going to prempt nature but wait and see about the issues and deal with them as they arose. I get what you are saying about Ethan's hip surgery but I wanted to ask was it one of those bone related surgeries that if you wait until the bad thing happens it's too late? If it is then you had to do it versus just opted too on a chance. I think once arthritis sets in it's in. If that is the case I don't think it is the same as the medical premptive interventions done on Ashley.

You have definitely given me A LOT more compassion for Ashley's parents and parents who pursue similar courses out of the same need. I still disagree with the Ashley treatment as some sort of menu item on the list of things to do for a severly disabled child, which is not what you are advocating. I do get what you are saying about not demonizing the parents and about how difficult their situation is and Ashley too.

I too know what it is like to lose the things you get to do for you child like dancing and daily bathing and constant carrying. Ellie has had a very extended babyhood. She is really delayed developmentally. But my back and wrists and elbos are giving out long before she is ready not to be on my hip, in the sling and close, close, close. My leg goes numb after awhile now when she is on my lap - her favorite spot of all time. And I sigh when this happens wondering how long I will be able to have her there - especially when it is such a huge source of comfort and saftey to her. That makes me sad. I feel sad for Ethan too getting more isolated from that kind of human warmth due to plain old growing up. That made me tear up for him.

Your post got me in touch with all of that and gave me a more open mind. It got me through being appalled and on the far side of the argument. I am glad to have a more balanced view.

I am still really mad at MH for you that they are not paying for the darn bath seat and other equipment Ethan needs. That really, really sucks. I am not sure why we are being able to get similar things for Ellie, of course with the obligatory 6 month waiting period, and you are not for Ethan.

Great post though. I agree with Jacqui - why aren't more people still talking about this. I know for myself I got a couple of very threatening emails and comments so I stopped writing about it. I guess I am a total wimp.

I am really glad I went back and read your post. I am less ignorant now about the complexity of the issues at hand here. Thanks! And lots of hugs,
Kathryn

Ryn Tales said...

Hi Mete ,

I should say reread your post when I was in a more open state of mind! (a mind I am clearly losing).
Kathryn

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