Would you, could you?

This is kind of long and rambling…I swear it wasn’t that way in my head.

One of the few non-political blogs I read regularly is Terri Mauro’s Special Children Blog on About.com.  She’s passionate, yet practical, and not afraid to be provocative…which brings me to this post:  Would Your Friend Say Your Child is Better Off Dead?

The short answer to that question is, if they did (after they regained consciousness) they wouldn’t be my friend anymore.

If you had a choice, would you prefer that your child with special needs had never been born? How about if you asked a friend, somebody peering in on your family from the outside, noting the strain on your marriage and the harm to your career and the wrinkles on your face and the lack of a recognizably promising future? What would that well-meaning individual, your best interests firmly at heart, have to say?

One such friend has written an editorial in the Daily Mail opining that, from her observation of a family’s struggle with a severely autistic child, everybody would be better off if a prenatal test for autism had been able to prevent the child’s birth. Even the child would be better off, she writes, because he’s obviously miserable.

I would prefer that Hope had not been born with special needs, of course.  Twenty years from now, will I still have that wish?  I don’t know.  I imagine that the Prader Willi will be a part of who Hope is and that I will love all of Hope, I don’t know if, twenty years from now, I would take the chance to make the Prader Willi disappear (as if I could) — if it meant losing Hope.  But that’s selfish isn’t it on my part?  How could I not wish away the syndrome?

But of one thing I am absolutely sure, I will never regret Hope being born…and if I ever do, I will have become somebody I care not to know.  Now, I can’t speak for my friends or people peering in from the outside.  Truth be told, there hasn’t been much of a “cost” to knowing us or Hope just yet.  It’s all projection at this point, how drastically will our lives change as Hope gets older, how many accommodations will friends have to make to include her or us in their activities, how much will we expect (or hope) from friends and family in terms of making those accommodations?  Of course I think about it, I’m a worrier and a planner, so how could I not?

No doubt Tammy & I have had a rough year, but there isn’t anyone I’d rather have gone through this with and no one I have more confidence in.  We struggle to find time for each other.  We have a hard time completing a conversation.  We watch each other closely, maybe a little too closely sometimes, and worry about how the other one is handling things.  We have two kids though, and frankly I blame Grace for our quality time issues more than Hope.  But certainly Hope has changed the family dynamic in ways we had not anticipated, namely that she has completely thrown any sense of predictability out the window.  I don’t feel like we’re planning for the future so much any more as we are bracing for it.  Still, if we fight, it’s more likely to be because of money or something stupid I said or something she forgot as opposed to anything do with the girls.

“The lack of a recognizably promising future…” is definitely the hardest part.

This week Tammy met with our financial planner.  I told her to see what we’d walk away with if we cashed out my retirement.  I only have six years invested.  But I’m under 59, and there is a early withdrawal penalty.  I don’t think I got my answer exactly.  Only that we’d likely lose 20-25% of whatever is in there.  I know that should bother me, it doesn’t.  It seems impossible to me that I’ll ever return to teaching, or maybe even any job with a real retirement package.  I know that bothers Tammy, I know she dreams of retiring and traveling the world.  I used to, but I don’t anymore.  Right now I just dream of a future without the words “group home” in it.  I have to work, I know, but a career?  I’m not so sure about that anymore.

Terri’s post is a reaction to an opinion column written regarding the possibility of a prenatal test for autism.  Of course the point is, that if there were such a test, people could make the choice to terminate the pregnancy.  The child of whom she writes in her column is, unhappy.  She’s less reserved in her evaluation of his impact on the lives of his parents and family and why we should want people to have the choice to avoid their experience:

that is a difficult question after the event: it is hard for a mother retrospectively to wish away a living child who, come what may, she loves. 

But looking on, as a relatively dispassionate observer; looking at the damage done, the absence of hope and the anguish of the poor child himself, do I think that everyone concerned would have been better off if Tom’s had been a life unlived? 

Unequivocally, yes.

I haven’t followed much of the news regarding the possibility of a screening test for autism, because it seems to me to be a patently absurd idea given the breadth of the autism spectrum and the range of social abilities manifest at all points along the spectrum.  If I’ve learned anything in my one-year as a parent of a child with special needs it’s this: there is a range of everything.  Tests and diagnosis’ can give you a name for the range, but they’re a topographical map at best…you can expect terrain like this, or terrain like that…but how high, low, severe, long, short, or deep it will be is a crapshoot.  But isn’t the presumption of a screening test that people would, or–more to the point, I think– should “screen out” the undesirable potential for hills and valleys?

And yet we’re supposed to hope.  Nearly every website for every organization for people with special needs will tell you some variation of the message:  there is hope.  How hard must it be for people with special needs, and for their families to hear that in one ear “have hope” and in the other “someday people like you will be able to avoid this.”  I just can’t help but wonder, and I do wonder — I don’t have the answers, I don’t know what the right answers are…or if there even are “right” answers.  I don’t know, for me, all a prenatal test would have given me was an 20-week head-start on a lifetime of worry.  But I certainly cannot see any place for being unequivocal.

One other segment of the column caught my eye, because it is a subject that weighs heavily on me and Tammy at the moment.  I’m not sure how ready I am, or if I’m willing at all to delve into it here.  I think it’s one of those things I’d really rather not see spelled out in front of me just yet…all pro and con-like…but it’s there and at the very least I think I should start being honest about it:

Worst of all, the other babies, of whom Cath and John had dreamed, have been ruled out. 

First, because they simply do not have the time to give to another child. And second – I admire them for thinking of this – they do not feel it would be fair to raise a child already programmed to be guilt-tripped, whether by itself or by others, into taking on the role of carer when Cath and John are no longer capable. Or dead. 

This, then, is their life sentence: to worry, every hour of every day, what will happen to Tom when they are gone.

And from there it’s a short leap to my nightmares (maybe unfounded) of group homes, institutions, etc….  helped enormously this week by this news:

California lawmakers from both parties have signaled which programs will be first on the chopping block when they gather to address the state’s projected $40 billion budget gap. They are expected to slash funding for programs that help a wide range of people with disabilities.

A proposal approved by Democratic legislators and backed by Republicans would drastically cut funds for regional centers that help people with developmental disabilities, as well as cutting payments that help people with disabilities keep up with rising food costs.

I know $40 billion is a huge gap, and that everybody is going to have to take one for the team…but regional centers?  For those who don’t know, regional centers provide services like OT, PT, and early intervention for children with special needs (and a relatively limited subset of those children to begin with), like Hope–and Hope is in good shape, we’re in good shape, compared to a lot of folks who depend on these services.  I’m sure there is fat to be trimmed, but drastic cuts?  slashes?  at the top of the list?  That’s sick.

According to the California Council of Churches, Church IMPACT the cuts include:

–    reductions in eligibility for In Home Supportive Services to people now living in their own home but headed for institutions without that care and;
–    pay reductions for those providing the IHSS services;

…in other words, group homes and institutions are more likely for those who could otherwise live independently but for occasional assistance, and lower pay (presumably resulting in a lower quality of service) for those who provide in home care services.  So here is my obligatory “special needs/politico mommy” action alert/plea:

We are living in a time when our moral values have never been made more present by the choices we make in our budget priorities.  Yes – our budget IS a moral document of our state’s values.  

Please call or email your legislator today, tomorrow, each day until this state comes to its senses.  The message is this:  justice demands that “from him, to whom much is given, much is required” and that we cannot run a healthy state by extracting care for those in the most dire conditions.

Send email, FAX or phone your legislators by going to our link at:

This entry was posted in Postcards from Holland, PWS and tagged , . Bookmark the permalink.

3 Responses to Would you, could you?

  1. Angie says:

    This has nothing to do with your specific post – but I just wanted to Thank you soooo much for reading my blog & finding me! I am so glad to read your blog you have no idea how much of a comfort it is to see your beautiful daughter and hear how well she is doing! and thanks for the sleep study pictures – we are getting one scheduled for the same weekend we have our big appointment with the endocrinologist and everyone.

    but anyways I agree that a prenatal test would have just given me a 20 week head start on a lifetime of worry as well. So why not enjoy the pregnancy with happy thoughts of the future.

  2. Jennifer says:

    I’m so glad that we found each other, there’s not a lot of us out there–but there’s more than it feels like. If you ever need anything, you know where to find me 😉

  3. Pingback: Do you really want to know what you really want to know? Or no? « Holding on to Hope…and Chasing Grace

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s