Wednesday, February 20, 2008

A Question Along the Way

They didn't know what was wrong but they were worried. Their son had become remote and uncommunicative. "He's just not himself."

Describing their son in words typical to parents of kids with Down Syndrome, "He's normally a happy, loving kid. We hadn't expected him to go through a teenage rebellion period but, what the heck, he's allowed. Then we realized that this is something different. Something darker. We're worried about him."

The 15 year old boy was just as his parents described. He didn't seem troubled, he seemed burdened. He glanced over at me and it was as if he was looking at me from a long way off, not as if we were in a room together. But he was curious. He became present in his eyes. "How long you been in a wheelchair?"

Somehow, I knew my answer mattered. I didn't want to lie, but I really didn't want to tell the truth either. Right now I wanted to identify with the chair. "A long time now," well three years is a long time. "What is it like?"

Truth. "I'm fine with it, others aren't so good."

"What do you mean?"

"Oh, you know, staring, laughing, a bit of bullying ... that kind of stuff."

"Huh," a non-committal sound. I thought I'd hit the mark and his sound let me know I'd missed. Damn that was my best play.

"So how long you been ...."

"Down Syndrome? I was borne ..."

"No, I know that," I didn't want him to think I was stupid, "how long you been upset like this?"

"Since the show," he said and made a face like he slipped.

It took a little while but he gave in, I think primarily because he'd been upset for too long. He was tired of it all. He told me that he had been home watching television and he switched to a show that was about Down Syndrome. he said that they were talking about a 'cure' for Down Syndrome and he realized later that 'cure' meant 'elimination'. That most parents choose to not have a child with Down Syndrome. That there was a future without Down Syndrome in it. He was devastated.

For weeks he's worried about it. About his friends with Down Syndrome. About his parents, did they have the test? Would they have gotten rid of him if they had the chance? He was scared to ask them. Scared about what their answer might have been. After all this, told to me in tone of upset and defiance even, ended in tears. He was afraid that he had slipped by the tests, that he wasn't really wanted. He now understood exactly where he stood in the world.

With his permission, I told his parents about what was going on. I let them know that in this case, my wheelchair made the difference. He could talk to me because the wheelchair made me different enough to trust. When they heard, they blanched and then they cried. Both of them. We now talked and they said that they didn't know what to tell him. They love him. They want him as their son. But in truth, they didn't know that the baby would have Down Syndrome, and they don't know what they would have done. They couldn't tell him that they wouldn't have had an abortion, they may have. But that was before they met him. Fell in love with him. They looked at me pleadingly, as if I could give them magic answers.

I suggested keeping the discussion in the present. "He's worried about the present. He wants to know if you would have aborted him. Well, the answer is no. You've met him, you love him, you want him. Tell him that. He'll know it's the truth."

"What if he asks ..."

"Don't lie to him!" I surprised myself with the strength of my emotion, "If he begins to ask bigger questions. Give him bigger answers. Just don't lie. He can stand the truth, he'll be devastated by a lie."

They called me later that day. He didn't ask the bigger question. He seemed, they said, more settled and more like his old self.

"But," mom said, "we are changed. He only has to live with difference, we have to live with the bigger question. He knows who he is. He's lucky, we have to guess at who we are, who we would have been under other circumstances."

"I told her that I've learned, over the years, that life keeps asking us who we are and who we will be. I don't have a kid with Down Syndrome, but I get asked that question all the time. Growth doesn't stop at the teen years."

"There's more of this?"

"Yep, and it's not so bad."

She laughed, "A word from the wise?"

"A word from the old."

"Same thing."

"Not always."

23 comments:

Ashley's Mom said...

I can relate to the parents' reflection on this matter. I wrote a post not too long ago on that same subject of reflection. I had expected more comments than usual to the post, but suprisingly didn't get them. Is this a subject that we are all really, really uncomfortable discussing?

I remember when I was pregnant with my now 17 year old son. I was an 'older' mom-to-be - 36 years old. My hospital and doctor insisted I participate in genetic counseling - their word for trying to convince me to have an amniocentisis. I refused their test, and never could make them understand that no matter what the results of the test happened to be, I would not 'terminate' (their politically correct term for abort) the pregnancy. I was amazed at the negative reactions to my comments.

Anonymous said...

Thank you for this post. I would love for Professor Harris from the University of North Carolina to speak with this young man or any person with down syndrome. Perhaps then, Professor Harris and others will not make unsubstantiated and hurtful judgments on the quality of someone's life. Once Professor Harris realizes that people with down syndrome can talk (gasp), have feelings (OMG!) and express their outrage, Professor Harris will not try and impose his "moral" opinions on his students.

Cecilia said...

I don't see how people can even contemplate having an abortion. It's just preposterous! I mean, the fetus is a human being! It's murder. I don't believe anyone has the right to kill other living beings. Especially humans!
But I'm a vegetarian as well, so I don't even believe killing animals is right. If we can survive without killing, it is a useless, horrible crime. People can survive without eating meat.
But that's different. People should not have the right to kill other human beings. EVER.

Nicole said...

I'm so glad that we did know, that abortion was NEVER an issue for either of us, and that Tarenne can know she was loved and wanted, and valued BECAUSE of her differences, not despite them.

Then I wanted to know prenatally so that I could learn, I of course did not realize that it would someday mean so much to her!

Veralidaine said...

That was a very touching post. I don't know anyone (adult or child) with Down Syndrome, but I can understand the fear and worry this young man experienced. I hope he and his parents are doing well.

rickismom said...
This comment has been removed by the author.
rickismom said...

A very interesting story and post.
Ashley's mom- yes, isn't amazing that doctors often talk about freedom of choice, but may only mean it when they choose their way?
I often am asked by therapists, doctors, etc. why didn't I have an amiocentesis. I calmly with no anger say, "I don't believe in killing people who aren't perfect." It usually shuts them up fast.
PS Like the new look of the page!

Anonymous said...

I remember having the discussion about whether we should have an amniocentis when I was pregnant with my son. There was never any question of termination but my husband thought it would help us prepare for him. Because of the risks of the test I didn't agree. Disabled or not he would be mine.

Oddly enough it didn't matter my blood tests placed me at a low risk (isn't that an interesting term - risk?) so no amniocentis. As it was my son was born with two birth defects that were not picked up by ultrsounds. Two operations later and at least one more to go I can honestly say I would not have chosen him otherwise. He is my son. There is a risk of any further children having the same defects - I would still choose them and consider myself fortunate to be their mother.

FridaWrites said...

I did not have the AFP or other tests because I'd gladly have borne my children to term whether or not they had a disability. I don't understand the social phobia of having a Down's syndrome child or why many women have expensive testing such as amnio done when they wouldn't consider abortion anyway (it's big $, but costly in terms of insurance or other benefits we all pay for).

Irene said...

You look at your newborn baby and don't like what you see,so you tell the doctor/nurse, "wring it's neck and chuck it into the garbage." That's horrible isn't it. Somehow it has become ok to kill that same baby when still in the womb. Is there a difference?

Susan said...

Congratulations, Dave, on 501 posts. I can't imagine life without my CTF fix every day (Well, almost every day! I missed it yesterday somehow. But on the rare days I do miss, I always catch up!)

What an accomplishment, though. 500 days. My little world is a better place because of your unending supply of insightful and thought provoking stories.

(Hey, maybe I'm not late after all. I just remembered you had one guest blog, so that means this IS actually YOUR 500th! Sigh! I feel better now! :o) )

Susan said...

P.S.

Love the new look...

Lisa b said...

Dave this is an incredible answer to a complex question. Though I suppose it is really a simple question - do you love me?

Our daughter screened positive for Down Syndrome but since she actually has Sotos Syndrome the amnio didn't show any problems. I am so thankful for that because I would never have wanted to be faced with that decision.

That question the mother says
" we have to guess at who we are, who we would have been under other circumstances." so resonates with me and haunts me. I am hoping over time it will fade as we answer the primary question over and over: yes, we love you.

Lisa b said...

I hope you don't mind if I respond to Cecilia by saying there are some conditions that are fatal that can be determined prenatally. In that situation, knowing your child is going to die, knowing that pregnancy has many risks and having other children it might be something one might consider.

Stephanie said...

It is hard for me to respond. I am so passionate when it comes to this subject. I am not a crazy pro lifer or pro choicer.
What I don't understand is this: If you make the choice to become a parent, then you live with the consequence of your choice: a child. If you weren't "planning" on becoming a parent- then don't do the deed that gets you there.
The fact that we live in a disposable world hurts. It is like everything can be tossed when it is inconvenient, fullfilled a short-term need, etc. We toss our marriages out the window when it gets to tough, we abort our children when we find that the initial journey may be to tough, we toss our relationships out when our feelings get hurt. UGH. Does anyone get the fact that the journey, even if hard and full of obstacles, can be a blessing?
Here in America, the stat is that 90% of prenatal Down Syndrome diagnosis are terminated. That to me is grotesque. I pose the following question: If you knew your child was going to have diabetes, cancer: lukemia.., progeria, cleft palatte, club foot would you still terminate??? The above illnesses aren't cureable, they are treatable and manageable and can result in death. DS is not the worst diagnosis you can get, yet it is the highest in termination rate.
I have a DS son. Didn't find out until after birth, if I had known prenatally it wouldnt have mattered. I love him no matter what, just as I love my other son.
I guess what peeves me is that people want that "perfect" child. There is NO such thing! If you want to be a parent you are taking a risk. You are risking your heart. Risking that your heart may someday be broken by this child or something that is ailing the child. Don't want to go down that road, don't get pregnant. Same with relationships, things get tough and bumpy we divorce.
Life is an unknown journey with few absolutes. That is what make it so marvelous.
Well, thanks Dave for your post, as always inspiring and thought provoking and thanks for allowing the rant.

Kei said...

Don't lie and don't offer more info than is asked, but answer when asked. Perfect advice for all parents.

We were 95% sure William would have Down syndrome... there were enough markers. The thought of anmio and the small risk of miscarriage associated was too high a risk~ we knew he was meant to be.

shiva said...

Why is it that every time this subject comes up, it gets hijacked by anti abortion fundamentalists?

A woman has a right to choose what happens to her own body. End of story. That's the same principle as disabled people having the right to employ PAs, to live outside of institutions, to have the sexual relationships they want, etc. It's the same principle as Dave and Joe having the right to their m/m relationship.

If something is inside your body, whether it's genetically human or not, you have the absolute right to get it out of your body, even if that involves killing it. To say no one should have an abortion, ever, is condemning thousands if not millions of women and children to lives of misery - the women because they have an unwanted child as their responsibility for the rest of their life, the children because they are unwanted.

The only cloudy issue IMO is when there is a possible way of getting the unwanted fetus out of the woman's body *without* killing it - ie, when the pregnancy is at a late enough stage for the baby to be viable outside the womb (which is the point at which it moves from "fetus" to "baby" IMO). My tentative thought is that at this stage the woman should be allowed to induce labour, give birth to the child and give it up for adoption, but not to abort it, but i don't know for sure where i stand on that. The thing that is truly twisted, however, is that (under UK law, i'm not sure about US or Canada) there is a cut-off point for abortions based on viability, but fetuses with any kind of "abnormality" (including DS, cleft palate, club foot, whatever - and those last 2 are not at all lethal, and only slightly disabling) can be aborted right up until labour begins. That is genocidal.

To say that "if you weren't "planning" on becoming a parent- then don't do the deed that gets you there" is basically to say that the only valid reason for sex is procreation, and if you don't want kids, then you shouldn't ever have sex. This makes gay relationships completely illegitimate, not to mention those who (due to disability or any other reason) are infertile being banned from sex.

Selective abortion is wrong not because it's abortion, but because it's selective - because it's done by people who want *a* child, but don't want *that* child. That is bigotry of the same kind which leads to genocide, but is *completely* different from a woman having an abortion because she accidentally became pregnant - or even was raped - and doesn't want a child at all.

I shouldn't have to be saying any of this on a (genuinely, revolutionarily) progressive blog. :( Please recognise (as, in all fairness, many of those who are pro-abortion but not pro-disability rights don't either) that reproductive rights go *both* ways.

Stephanie said...

In response to Shiva's comment: I wasn't saying that sex was for procreation only. What I meant was that if you don't want to have a child, then protect yourself from having one.
My rant was about selective abortion based on the fact that the child is not "perfect." I am sorry for getting off point. Your comment that they want "a" child, not "that" child is right on. You and I agree more on point than disagree and I am sorry that I was unable to effectively get that across.

celticmystyc said...

God, I love this blog. Every single post makes me think, makes me ponder, makes me look inside myself and ask questions of myself. This particular post grabs my heart and shakes it.
So many different issues come up and what grabs me most is the percentage of the public willing to "terminate" a life because it's "flawed, or not perfect". Selective pregnancy..."I only want it if it meets my criteria". This goes far beyond a womens right to do what she wants with her body
I don't have a DS child, but I do have three children with issues all their very own. Had I known these children would be difficult to raise, give me grey hair, make me cry, make me scream, would I have terminated the pregnancy and "try" for a more ideal child???? Absolutely not. These children are teaching ME more than I thought capable. I'm learning patience, to think "outside the box", and it's my responsibility to prepare them for the world I brought them into. I love them dearly and I was MEANT to be their mother.

Veralidaine said...

Shiva,

I thought of posting something similar to what you did, but decided against it in favor of a simple comment expressing understanding of the young man's fears in the story. Now that you said it, though, I gotta respond.

For me, the "abort the defective fetuses" thing is just one MORE reason to support a woman's right to an abortion. Because when you try to limit or prohibit abortion, one argument that always comes up is, "What about birth defects?"

What about them?

We're all human, right?

I don't know that there is a way to regulate abortion without making it discriminatory. So we have two choices: Ban all abortions, or allow them all (though I agree with you that viability outside the womb should be a cutoff date).

Of course, if we ban them all, that leaves women out to dry and makes it clear that society values unborn life over adult female life.

So you have to allow any woman, any time, to have an abortion (up to the cutoff date) for any reason, whether it's racist, ableist, or any other discriminatory reason, because to do otherwise would be worse than permitting individuals to be prejudiced; it would be endorsing prejudice at a national level.

Anonymous said...

I have felt this post impact me quite deeply.

I think, too, that when Gabriel becomes aware of how our world views prenatal testing and the impact on Down syndrome, he will be just as deeply affected and saddened as the young man you write about.

What scares me more than that though, is the questions I may want to reply to with lies.

Did I have prenatal testing? Yes.

Did I have an amniocentesis? Yes.

Did I consider termination? Yes, I did.

I may want to lie to protect my son (and myself), but I won't. I can only hope that the love I have for him, and my true belief in who he is as a person, allows him to forgive me.

Anonymous said...

This is an interesting topic to me, as well. I have 15 month old triplets, one has Down syndrome. My spouse and I seriously considered amnio, but after weighing the risks versus the benefits, opted not to do it.
We had long discussions about ethics. If we had a child with a disablility, what impact would that have on our relationship, on the siblings, would the child(later an adult) be a burden to others if something should happen to us?
I am very happy that we have ALL of our children, and love our daughter with DS every bit as much as the others and see her as the unique and wonderful little girls that she is, and I joyfully anticipate seeing the woman she will become.
I guess what I hope to convey is that this is an area with a lot of gray. Many discussions see the topic as strictly black and white. It is so personal and complex, it deserves more than a knee-jerk reaction.

Ettina said...

"Oddly enough it didn't matter my blood tests placed me at a low risk (isn't that an interesting term - risk?) so no amniocentis."

I read a book about genetic counseling that explained that 'risk' is a term for the 'probability of something occurring' which implies something bad, and said their use of the term risk incorporates both those aspects. I was in the health sciences library in Winnipeg at the time and felt scared that if they knew I was autistic they might want to get rid of me. Not rational, as most supporters of selective abortion don't support killing already-born disabled people, but that's how it felt.
I remember reading about a woman with a fragile X son. Like most such women, she carried the fragile X gene herself, and when she got pregnant again she had her child tested. Like her, the baby was a female carrier of fragile X, though (because the gene expands with each generation) her daughter could be mildly developmentally disabled (LD or mild dev delay). She decided to abort the child, a) because of the chance of developmental disabilities, and b) because she didn't want her daughter going through the 'agony' of being a fragile X carrier. I really wonder about people like that - do they wish they'd never been born? And if her son reads the book in which she said this (some book about two mothers of fragile X kids who were pen pals) or in some other way finds out about this, how will he feel? To know that she aborted a child partly because the child might be like him only less disabled? He's 'even worse' than his sister and she didn't even want his sister.