Friday, May 02, 2008

A Culture of Life?

I knew that I was expecting a baby with Down syndrome, and the news got around. Pretty soon, I started getting recommendations. A coworker I barely knew has a son with the same diagnoses Ellie has, and she stopped by my office with a lot of great information (and support) including the name of her son's fabulous pediatrician and his inclusive daycare, complete with great therapists. The special OB who performed my prenatal testing set me up with a terrific pediatric cardiologist who did a couple of fetal echocardiograms. Fetal. Like, before Ellie was even born. And then I had 20 weeks to grieve for what I imagined I'd lost, and to prepare for my daughter's birth.

When Ellie was born, I was so far ahead of where most women are after giving birth to a baby with trisomy 21.

And I loved my baby. I loved her so much, I hardly ever put her down. We had no problems nursing; we had immediate, intense attachment. Also, my mom had given me a book of therapy exercises to do with young children with Down syndrome, which I did daily almost from the time we got home from the hospital.

But I was still paralyzed by fear and discomfort and desire not to have to negotiate this new world into which I was thrust. I could handle the medical stuff. But First Steps and therapies? Nonononononono.

Many pediatricians deal mostly with typically developing children, but Ellie's amazing, wonderful, terrific, unbelievable pediatrician was so helpful. She made the first call for me. She followed up. She told me what to expect, what to ask for, what Ellie needed. I got it all.

And then, the system changed. After our new "Pro-Life" governor was convinced that he really didn't want to eliminate the First Steps program after all (start at the bottom) he still decided to cut it way back.

He instituted fees for some of the services, and a whole new model for determining what services are provided to our state's most vulnerable children.

When Ellie was 4 months old, she had an OT and a PT. By the time she was 12 months old, she'd added a developmental therapist and a speech path. A woman I know had a baby with Down syndrome two years after Ellie was born, and by the time her baby was 9 months old, she was receiving zero services. Nothing. Nada.

Because now, instead of working with the parent to determine the baby's needs based on diagnosis, pediatrician's recommendation, evaluation, or even a simple questionnaire, it's all based on one question: what are your concerns?

When the stunned new parent of a baby with any sort of special need finally works up the nerve to call the organization that's supposed to help her child, she's presented with this:

How are things going; do you have any current concerns?

It's a newborn baby! With an unexpected diagnosis! What is the parent supposed to say to this?! She's not walking properly yet, being a newborn and all. Perhaps she should have physical therapy?

As the parent, I am the expert on my baby. I'm the expert on her day-to-day needs, and on loving her. BUT, I'm not an expert on all babies. I'm not an expert on PT, OT, development, medicine, or speech. I need to be able to rely on a team of experts who will tell me what my baby needs.

But we withhold this information, tying the hands of the providers lest they offer more services than the parent knows to ask for, costing the state money (in the short term). Yet we want women to choose not to have abortions?

No Child Left Behind has made sure that public education continues this ugly trend.

The goals on a student's IEP (individualized educational plan) drive what therapies she receives and what her therapists address with her. But the goals are derived directly from the "Family Concerns" section of the IEP. We messed up last year and didn't write down enough parent concerns and are currently having to supplement Ellie's therapies in all areas.

Tomorrow is Ellie's IEP meeting for next year, and I've been preparing for weeks. I've taken a training class and I have a better idea of what to ask for, and how.

But it shouldn't be this hard for parents. The experts should be able to help us determine what Ellie needs, and what it's realistic to ask of her.

Because, you know what? I'm more equipped to deal with this situation than a lot of other parents. What does it mean for their children? And what does it mean for our society when these children leave school and are expected to become productive adults?


Orange said...


If I believed that hell existed, I would certainly allot a special hot room for politicians who eviscerate early intervention and special ed programs. It's so short-sighted, cheap, and mean.

IrrationalPoint said...

I here ya. I'm not a parent, but I do care work with kids who have special needs in programs that are funded by the local Council, so I guess I see a lot of the same problems from the other side of the coin. It always makes me think how messed up it is that the programs I work for are so restricted (kids who aren't "disabled enough" according to some national sorting system aren't entitled to funding, and we don't have the facilities for kids who are "too disabled" because we don't have the funding for those facilities) , and so unvalued by the Council.

I have a friend who works for a service centre for adults who have special needs, and among her areas of responsibility is to help the clients (adults with special needs) develop skills for employment, find employment, and stay in employment. But because of beaurocratic and funding restrictions, she's only allowed to provide these services for a certain set period of time to each individual, so they may lose their support before they're actually able to manage in their job without support, and so lose their jobs.

Another problem in the UK is that people who work with special needs people tend to be under paid (despite training, skills, and qualifications), so a lot of experienced people who provide services to disabled people are leaving that sector and looking for employment elsewhere so they can actually make a living wage. And it doesn't help the disabled people any if their services are provided by less experienced people.

Best of luck to you and your daughter. She's luck to have you fighting for her to get the care she needs -- power to your elbow.


Carolyn said...

The culture of life question is an interesting one to me. I am blessed to know an older gentleman that I have "adopted" as my grandfather who has always spoken out strongly about this. Whenever there is a prayer offered up in church that is anti-abortion in nature, he counters it with "Lord, please help us to remember the children that are here. For all the children, the sick, the hungry, the homeless, the unwanted, the unloved and the abused, we pray." It is a simple gesture that allows him to get his point across every time.

Chris said...


Julana said...

I'm a conservative, always have been, and always will be, probably.
But I don't know what that means, politically, any more.

I grew up in a peace church, and am pro-life, anti-death penalty, anti-war. I do think being pro-life means supporting babies both before and after birth.

I don't think either political party is consistently pro-life.

I'm sorry about the losses for children in your state.

Jessica said...

Aside from your excellent political points, I thought of you when a pregnant friend of mine announced that, not only did they not want to know what the baby's gender was (fine), but she was opting not to do any testing (for Down syndrome, etc). I recognize this is a very, very personal choice - I do - but I remembered how you went about things and, well, I just couldn't help but feel as if was the better option on so many accounts.

My pregnant friend's comment was, "Why test? It's not going to change anything." My point was, "Even the more you can spend this time preparing and the latter bonding."

Kay Olson said...

Since you wrote this just in time, I'd recommend you hop over to Goldfish's site and submit the link in comments as part of the annual Blogging Against Disablism Day. It needs a wider audience (whatever your audience is, this needs to be heard).

Penny L. Richards said...

That whole "parents' concerns" thing irritates me too--because it turns into a sick game of "say the magic word"--if you know the right language to tip you into the right category, fine, your kid gets the services he needs, but otherwise... sorry, better luck next time. '

Not to mention that this gotcha game basically forces a proud, happy parent to switch into a completely different persona just to get her kid the supports he needs. Gaaaah!

Good luck at the IEP.

deb said...

It's definately lots of fun when you have more than one special needs child.

Because even when you know all the right buzzwords to say, if it's your second child and you've been down this road once already, and you know what you need to say as a concern, if it's autism which tends to have a genetic, heritable component, you are told you are "neurotic" for worrying about the baby.

That was my hell; knowing the right buzzwords and having the concerns iniatally fluffed off.

Early Intervention preys on the ignorance of parents and their hopes that the child will be "ok." In NJ they try to push off diagnosis of autism until after the age of 3 so then with the big, expensive 40 hours of ABA the kids need can be passed away from the state and to the school districts.

It's disgusting.

It's not the politicians or budgets so much as there is the pervaisive idea that the kids don't deserve the budget because they are disabled and will be a lifelong drain on the system. Which is stupid. The earlier you help, the more likely a disabled child will improve to the point that they can be a productive member of society.

It sickens me, it really does. And before this happened to me, I wouldn't have thought two whits about any of it. I feel the same way that you do, Sarahlyn. I am in a better position to deal with it and I do so worry about the families that are not. It's turned me very political because if they can't advocate for themselves, someone who understands should.

Beach/Vic said...

I so totally hear you on the difficulties and the feeling that you need some kind of degree in navigating things you don't even comprehend in order to get what you need. No one helps you. In fact, the government does whatever it can to get in your way. Bah. Suffice it to say that services for the disabled are no better here in BC. Thanks largely to the government's half-witted approach to determining needs and concerns. Don't educate parents or caregivers to how they should frame needs in order to get services. Ask vague questions that are difficult to point to any definitive services. Keep those costs down...

Mary P Jones (MPJ) said...

I have cried and screamed and torn my hair in frustration over this for as long as I've been working to get services for my son. (We started to suspect something was wrong at 18 months, he wasn't formally diagnosed with autism until age 4.) Having to know what to ask for and how to ask for it is ridiculous and infuriating. Ugh! I could go on and on about this, but I'll save that for my own blog.

**kirsten** said...

It amazes me how well you put into words, what I only ramble on about on my blog.

I admit I am one of those parents who are not well equipped to handle my situation --- and I've been struggling to for over 12 years so I should know more than I do.

My quest to be more informed is actually what led me to your blog in the first place and I just wanted to tell you, you've been an inspiration to me and have helped me grow and be a stronger advocate for my daughter. Thank You!