First Steps Update

Blunt supports reformed First Steps program
BETSY TAYLOR
Associated Press
ST. LOUIS - Gov. Matt Blunt outlined a proposal Monday that would largely keep intact the First Steps program for developmentally disabled children but would require families and insurance companies to pick up more of the tab. . . .

Blunt planned to keep the First Steps name, but supports legislative changes requiring participating families to pay a fee on a sliding scale, with the highest costing $100 per month.

We can afford this. If the system ends up working exactly the same as it currently does, but with those of us who can afford it paying $100/month, I will be OK with the changes. (The first news reports called for $100/session, and Ellie has 4-7 sessions a week so the cost for us would have been astronomical.)

One concern I have is the private insurance part. I hope that I don't end up having to spend hours each month fighting with our insurance company to pay for therapy services and equipment needs. Under the current First Steps program, the therapists and I talk about what Ellie needs, then we request it from her case manager who gives us the thumbs up or thumbs down. It's a very efficient system. I don't want insurance companies - rather than a case manager who's involved with Ellie's care - deciding when it's acceptable for her to receive the care she needs.

The real bummer? Blunt says that funding will come from "money saved by changes in Medicaid." This is a real mixed blessing. I am so glad that Ellie and other young children with special needs are getting the services they need. I am very sad that these services are being funded at the expense of Missouri's neediest families. My senator is sponsoring the legislation.

Short related rant. Why does Governor Blunt now insist that he never meant to cut the program, when he so obviously did cut the program? What's so wrong with admitting that you made a mistake, that you misunderstood what the program was about? All this stress for $2 million dollars: a fraction of a percent of the state's budget.

The Oscars

A friend taught me about the damage movies like Million Dollar Baby cause.

"Oscar-nominated Million Dollar Baby and The Sea Inside present the lives of disabled people as unbearable while ignoring -- and refusing to portray -- the real and desperate social needs of actual disabled people."

Great read, great perspective. Conversations like these really made me see the whole awards show in a different light. OK, I didn't actually see the whole awards show. But I sure felt differently than I might otherwise have felt about some of the winners.

How was Chris Rock's intro monologue? I'm a Chris Rock fan and am bummed I missed the beginning of the show, but I disliked his comment about Salma Hayek's and Penelope Cruz's breasts.

NOLA

We had a wonderful time in New Orleans this weekend! I worked at the convention center and met with authors during the day while Paul and Ellie did some fun sightseeing things like taking the St. Charles streetcar to the Audubon Zoo and tooling around the Mississippi on an authentic paddlewheel steamboat.

When I wasn't at the exhibit hall or in meetings, we managed to squeeze in some family fun, including trips to Cafe Du Monde, the IMAX, the Aquarium of the Americas, a bus tour of the city, and some truly amazing food.

Ellie has been on several car trips and a couple of hotel stays, but this was her first plane ride. She was a real trooper. She did great on the plane and was incredibly well-behaved in several really nice restaurants, where "family-friendly" really meant, "You're allowed to bring your child in here (but I hope she ate before she came). We have bananas. Do you think she'd like a banana?"

Paul, too, did awesomely well. He trekked all over a city he'd never seen before with a baby in a frontpack and a huge diaper bag backpack. He did more than the lion's share of the parentwork and did it uncomplainingly. Well, he wasn't too happy about the 2 middle of the night trips outside to walk Ellie around in the cool humidity to help sooth her cough last night, but he did it anyway.

This is from Paul and Ellie's trip to the Audobon Zoo on Friday. I'm told that the komodo dragon thing is a sculpture.

Democracy in action

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These passages were cut from a couple of emails I received recently from Appropriation-Education Committee members. The bolded emphasis is mine.

I wanted to let you know I appreciate your concern regarding the Governor’s proposed elimination of the First Steps program and to give you an update. The Governor’s cut was addressed in public testimony last week before the House Appropriations Committee on Elementary and Secondary Education. The public turnout for the hearing was impressive and the testimony was extremely moving. I commend the people who came and shared their heartfelt stories. As an educator I fully understand the positive consequences of early intervention, home therapies, multi-disciplined approach, just some of the benefits, as you know, of First Steps.

The committee did not approve the Governor’s move to eliminate First Steps. The committee members voted the budget out with First Steps still in it. Keep in mind that passing the budget bills is a process that takes many weeks. Final closure comes with the Governor signing or vetoing the budget bills later in the session. The Governor can choose to change his recommendation to cut First Steps at any time.

Rep. Sara Lampe - Democrat
District 138, Springfield

From the beginning, members of this committee as well as many in the Capitol have backed the services of this program. Details of the program are not available but the dialogue and planning is firm enough that I have received word that a letter of recommendation for funding could be included in my 3/1/05 report to the Budget Committee and that dollars outside our responsibility would fund it.

On Tuesday, February 22, the Committee voted unanimously for the Chair/me to send a letter on their behalf. I expect the Budget Committee to also offer strong support and accept the recommendation and funding source. The appropriation/budget process is working, but is not completed.

Kathlyn Fares (Webster, Missouri - Republican)
Appropriation-Education Chair

When the representative democracy works, it is a beautiful thing. In this case, it's not working perfectly. The $1 million approved is far short of the $20+ million the program currently costs, even when the $8 million that the federal government is willing to chip in is added on. At least legislators now know that this program is important and that there will be an outcry and political ramifications if it is eliminated. I am beginning to feel very worried that it won't be fully funded, though. We are lucky that we will be able to afford the therapy that Ellie needs. But I really think that our whole family is benefiting from my working only part time right now and I do not want to have to go back to a full time job plus travel schedule this year.

St. Louis in February

I love this place in February. One day we have icy rain and the next day it's bright, breezy, and 70 degrees. The yucky days help you to appreciate the perfect days even more. There are no bugs, it's never too hot, and the beautiful weather feels like pure heaven after the winter blah of January.

Last Tuesday was so perfect that I called Paul at lunch and told him that he had to ditch work and meet Ellie and me at the zoo. He did and we all had a wonderful time. Ellie roared at the big cats and was mesmerized by the giraffes, who were eating their dinner only a few feet away from where we were standing. I loved the sea lions but was disappointed not to see Air Jaws jumping out of their little pond.

Friday was cool and windy but sunny, so my mom, Ellie, and I went to the park. This was also a lot of fun, even though Ellie decided to do a slow-mo header off the end of a slide and got her first ever big girl nose scrape. She only cried for a moment and it's already healed. So precious. Saturday we enjoyed our first Gymwalkers class and Ellie fits in with this class much better than she does with the crawlers class, even though she's not walking independently yet.

Sunday was another gorgeous day and we went down to The City Museum. This is one weird place. We had a lot of fun. Ellie especially enjoyed the slides and the petting aquarium. Yes, that's right. I had an altercation with a rocky protuberance, but other than the comely lump on my forehead I'm none the worse for wear.



I'm inordinately excited by our upcoming visit to The Big Easy. Over the next few months we're going to New Orleans, Dodge City (Kansas), Wyoming, NW Indiana/Chicagoland, and Boston. Busy, traveling us! Perhaps eventually I'll actually write something here again. Like, on a rainy day or something.

Pimp My Ride

I am at a loss to explain exactly how my parents came into possession of their truck and why my mom drives it when she comes down to visit us. (I was going to say "comes down to visit me," but let's be honest - she comes to see Ellie.) Anyway, Mom took Ellie to school today in my car, so I drove to work in my dad's red Chevy S10 with a low ride, hard topper on the back, blacked out windows, and tricked out muffler, blaring NPR as I whipped into the parking lot. Hilarious. It's even funnier with my mom, who couldn't look less the part, and my dad, the mostly bald, portly, 60-year-old minister.

School is Good

Friday, Ellie had a great day at school. She didn't cry when daddy dropped her off, she didn't cry when I picked her up, she didn't cry the whole time she was there. She didn't take a morning nap (a first!) and she didn't need one of the teachers to sit with her or hold her. She participated fully in all the activities, even the one where the kids had to crawl across the room from one hand-print taped to the floor to another.

Saturday at Gymboree, Ellie was the first of only 2 kids in the crawlers class who was willing to crawl through the darkest, longest tunnel.

Today at school, Ellie was playing with a toy and a 1-1/2 year old boy named Tyler took it away from her. Ellie lunged at him and said, "Nanananana!" (Nonononono) Appropriate use of language! Sticking up for herself!

People ask me if I feel guilty about putting Ellie in day care. How could I possibly feel guilty when it's obviously so very good for her?

Parent Education

A dad on a Down syndrome discussion board I visit calls parenting a child with special needs the graduate school of parenting. I think I like that. Of course, in my case I skipped college and went straight to grad school, so what do I know?

I always wanted the cool robe and hood. Do we get hoods?

When Adjectives Attack

What, they don't have a caffeine-free version?



I really thought this was a joke the first time I saw it in the store.

On Houdini and Abortion

Hello and welcome to Yeah, But Houdini Didn't Have These Hips!

This is my personal blog, used for writing and and fleshing out my thoughts, keeping in touch with friends and family, and building a community of on-line understanding friends.

I've had to restrict Anonymous comments, since unfortunately this blog has gotten some trolls who feel most comfortable spewing hate anonymously. I apologize to all of the non-trolls who don't have Blogger accounts and are inconvenienced by this, but I had to make the change.

I am understanding when well-intentioned people write something potentially offensive through ignorance. Posts and posters that are blatantly disrespectful of people with disabilities, feminists, women, liberals, religious groups, etc. will not be tolerated.

I really hate having to write this; most of it is common sense and it should offend most reasonable people because it assumes that readers can't comment politely and maturely. But, unfortunately, not everyone does understand this concept.

My most common trolls are anti-abortion activists. I don't have the time or inclination to debate the same topics over and over again with each new troll who stops by and wants to take a swing at telling me how wrong I am. Instead, I'm compiling some responses and links here.

Visitors who just stop by in order to "debate" abortion-related issues should check out this post first, and realize that my decision not to go 'round and 'round the same old mulberry bush with each anti-abortion activist does not mean that I don't have answers to your questions and challenges. It means that I've already addressed your points here or elsewhere, or someone else has already done so much more eloquently than I have and I do not choose to repeat myself or them.

1. I consider myself to be pro-life.
2. I am also pro-choice.
3. Experiencing pregnancy, childbirth, and parenthood (all of which I have loved) has made me a stronger advocate for choice.
4. I am Christian.
5. I do not believe that legislating my values onto society is the best way to encourage people to make moral choices.
6. I do not believe that a zygote, morula, blastocyst, embryo, or early second trimester fetus is fully human with the same rights and responsibilities of humans. Until a baby can exist - with or without medical assistance - outside of a woman's womb, the baby is not a baby. The potential child is a zygote, morula, blastocyst, embryo, or fetus.
7. When I was about 16 weeks pregnant with a very much wanted and planned first child, I felt my baby move for the first time. When I was about 20 weeks pregnant, I learned that she would have several serious health and developmental concerns. My fetus was my baby and my husband and I made the right decision for our family - including our daughter - by deciding to continue the pregnancy. My husband is a wonderful, supportive man, and he wanted this baby very much. But ultimately, it was my body and my decision. Because of the nature of our partnership, we made the decision together. I do not believe that my decision or decision process would be the right decision for every woman, every family, every situation.
8. I believe that a discussion about abortion is best carried out by women. In arguments for or against abortion, men often insist that any child that results from sex is equally theirs so they should have an equal say. But pregnancy is not an equal opportunity experience. There is no valid point of comparison. Pregnancy is a unique and nuanced situation.
9. I believe that too many women who learn that they are pregnant choose to have abortions.
10. I believe that many factors encourage women to have abortions, and this designation most definitely includes "pro-life" Republican legislators who vote to decrease programming for social programs that help women and children and families. Also, what Portia said.
11. I believe that too many pregnant women who learn that the fetus they are carrying has Trisomy 21, Down syndrome, choose to have abortions.
12. I believe that as the parent of a child with Trisomy 21, it is my responsibility to share my daughter's wonderful life and our incredible family experience with others, so that fewer women need to make this choice in fear and ignorance of the unknown.

Other thoughts on abortion:

• If you're interested in talking about abortion and the Bible, this is an interesting read.
• If you're interested in what Americans really believe about legalized abortion, this is an interesting read.

There's lots of interesting stuff to read out there. The long and short of it is that I'm not interested in what your religion tells you about abortion. I believe that it is your right to believe as you believe, preach it from your pulpits, and live your life as you see fit. Also, I believe it's your responsibility to discuss these issues with people you're considering having sex with, to reduce heartache down the line. But I don't believe in any religion's right to make decisions about my reproductive health for me. Many women say that those decisions are between them and their doctor. For me, I would amend that to say that those decisions are between my doctor, my husband, and me, with the understanding that my conscience is largely the product of what I've learned from my family and my religious upbringing.

Comments

I really appreciate getting comments. I'm not always great about responding, and I don't always answer email or write letters, either. Please rest assured that I am grateful nonetheless.

Reader Cindy says:
Well, I just wanted to say how great it is that there are people like you on earth. To be honest I couldn't look after a child with the down syndrom. I don't even think if I knew my child was going to be this way I would give birth to it. Well, I am sure I wouldn't. So to me you're amzing because what you're doing is great.
That's all I wanted to say, and yeah she's cute :)

Cindy, I agree that Ellie is cute.

Your comments about children who are "this way" are based on ignorance. No baby is guaranteed to be perfect. Children with Down syndrome are more likely to have some problems than are other children. (The same is true of children who are born very prematurely.) It's possible to have Down syndrome and not look like it. It's possible to have Down syndrome and not have any physical disabilities. It's possible to have Down syndrome, look like it, and have normal intelligence.

Oh, and thank you very much, Trisha and Psycho Kitty.

First Steps and Abortion

I've mentioned before that over 90% of women who learn that they are pregnant with a fetus that has trisomy 21 (Down syndrome) choose to abort. It's not easy to parent a child with a disability, and children with Down syndrome are more likely to have several physical and developmental disabilities.

If we want to decrease the number of women who choose to have abortions, and I do, then I think that cutting a huge support system for babies with special needs and their families is the absolute wrong way to go about it.

This whole scenario lends legitimacy to the "Life begins at conception and ends at birth" credo.

Ellie the Lobbyist

I wish I'd taken a camera to document the occasion. Someday, I'm sure Ellie will be proud to say that she protested at the Capitol before she could even walk! She did wonderfully during the 3 hour hearing. She was wired and stayed up until 11:30 last night, then slept in until 8:30 this morning!

Thanks to Save First Steps, we knew exactly when the public hearing was, where to park, and how to get to the meeting room. We noted on the map that the hearing was in the largest meeting room. Nonetheless, when we arrived we found the hallways outside the room crowded with parents, advocates, providers, and children. It was chaos and pandemonium. When we finally got close enough to see inside the hearing room, Paul counted close to 200 people inside.

After waiting in the hall for over an hour, we managed to squeeze in, and we could finally hear. I wasn't called to testify, but I did have a picture of Ellie alongside a paragraph describing how well she's doing because of First Steps that I submitted to have passed out to the committee. I only wish I'd had time to schedule meetings with my state senator and representative while we were in town.

The testimonies were fascinating. It turns out that the governor and the committee believe that private insurance would pay for the services that First Steps provide and that Medicaid will pick up the rest of the tab. Um, no. Most private insurances only pay for rehabilitative therapies, e.g. short term accident-recovery scenarios. They won't pay for developmental therapies, therapies related to a congenital condition, or anything at all once you've reached your lifetime cap. Many of these kids reached their lifetime cap shortly after they were born, due to special medical issues. And most of us who benefit from First Steps don't qualify for Medicaid. (Who really does, anymore? Blunt cut that program too.)

We heard testimony about how hard it is on families to have a child with special needs. Man, that's true. The divorce rate is sky high. The one thing that has been easy about dealing with Ellie's "special needs" has been accessing the First Steps system. Before she was even born, we were told about the system. Before we could take Ellie out into the world, an intake coordinator came to our house to explain First Steps to me. As soon as I was emotionally able to pick up the phone and call, therapists started coming to our house. I cannot quantify how much this program has helped me emotionally. It's incredibly powerful to have these trained professionals looking out for your child and teaching you what to do when you don't even know how to begin. I think everyone should have a few visits from a pediatric PT and OT when they bring a new baby home. It's amazing.

Thanks to all who have been so supportive. I don't know if Missouri First Steps will be saved, but I feel like I'm doing everything I can to help save the program. So far, all the Democrats are telling me that the program is critical and must be saved. The Republicans are telling me that the cuts have to come from somewhere to hold the line on taxes. I guess it's easiest to cut the money here. What's easier than taking candy from a baby with disabilities?

Missouri First Steps

I have called the governor, my state representative, and my state senator. I am going to the capitol tomorrow for a public hearing, at which I hope to speak. I am sending ahead a picture of my "child who has been helped by the First Steps program" since I will miss most of the pre-hearing press conference. I have emailed the governor and my legislators, with a copy sent to each of the appropriate committee members. Here is the letter that I'm sending (along with a picture of Ellie) to my elected representatives:

February 8, 2004

Governor Matt Blunt
P.O. Box 809-A
Jefferson City MO 65102

Governor Blunt:

I'm sure that you've read all about how $1 spent on early childhood intervention saves more than $7 down the line. I'm sure you know that the First Steps program helps prepare children for entry into the public school system. Rather than talk about the economics and politics of the First Steps program, I'd like to tell you how First Steps affects my family.

I am 30 years old and my daughter, Eleanor, is 15 months old. She has Down syndrome. 40 years ago, children with Down syndrome were routinely institutionalized. It was thought that they could not learn.

Ellie has been receiving therapy through the Missouri First Steps program since she was 3 months old. At this point, she is tracking very close to developmental norms for her age group. At 15 months, she has 10 words (and understands many more). If I show her a picture of our church and ask her to point at the tree, she will point at the tree. If I hand her a shape, she can place it through the correct hole in the shape sorter. She crawls. She can feed herself. She helps to get herself dressed every morning. She is a loving, sweet, wonderful child and a greater blessing to our family than we could ever have imagined.

Ellie's successes come in part from her exceptional nature, but a lot of the credit goes to her wonderful First Steps therapists. Currently she sees a physical therapist, an occupational therapist, a developmental therapist, and a speech therapist. They tell me that keeping Ellie "as close to developmental norms as possible" is a realistic goal. They tell me that she should be able to be in a typical classroom at school in a few years.

The First Steps program has had an immeasurable effect on my family. Please do not cut funding for this program.

Sincerely,
Ellie's family

cc:
Representative Richard Byrd
Senator Michael Gibbons

Dinner Last Night

What? So this isn't how you eat your lasagna?

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Thanksgiving in February

A good friend of mine from college likes to have a big, traditional Thanksgiving celebration on his birthday every year. Everyone brings a dish that's part of his or her own family Thanksgiving tradition. The email list of invitees used to be so long and the food used to be such crap. It was mostly about the beer.

A couple of years ago, I noticed that the invite list was about half as long as it used to be. "Oh! How nice! A smaller group this year," I thought. Then I noticed that all of the names were doubled up for the first time. Like:
Sarahlynn/Paul
Adam/Lisa
and so forth.
The cynics among us talk about how it won't be too long before the list starts fragmenting again. I hope the food stays as good as it was this year, though.

This year, for the first time, I noticed that most people had brought children. This is so weird. These aren't my parent-friends; these are my college friends. These are the people who heard my shaky-voiced speeches when I was running for service organization office for the first time, the people I played parking garage roller hockey with, the people I went to late night parties with for years.

Those of us who have stayed in the St. Louis area have scattered to neighborhoods fitting our personalities. We were all Wash U students from around the country. But of course these two would end up in Valley Park while this whole group would head out to Maryland Heights and they would stay in University City. It just makes sense, but it's so interesting to see.

And the parenting styles, wow. That's interesting too. Some of us couldn't be more different. She heads to the hospital at the first twinges of labor pain, she had natural childbirth, she used formula after the first few weeks, and she breastfed for more than 2 years. His kid confused him with the vacuum cleaner while he is the primary caregiver. This toddler knows the words to several Disney movies by heart while this one has never watched TV, and so on.

I heard a very interesting comment from one of these well-educated, privileged, white, suburban home-owning parents yesterday. It's something that I think a lot of us have thought but mostly wouldn't say aloud. "When I was choosing a daycare, lack of TV was one of the major criteria I looked for. We visited one center where the 2-year-olds were all zoned out in front of the TV. I mean, this is what I would do. If I'm paying someone else to watch my kid, I want something better than that!"

Is this a demand for exceptional effort at a very low price driven by materialistic consumer culture? An acknowledgement that the women who work at daycare centers - usually not as well-educated as we - might be better at raising our children? Or something in between?

Depressing

The first summer we had in this house, Paul's parents came to visit. One night, we were all sitting around drinking iced tea and chatting. Paul's dad got a big smile on his face, and said, "There is nothing like sitting in your adult son's house and talking with him as an adult, as a friend." Several times during that trip and subsequent trips, he has returned to that theme: adult children as equals, as friends, owning a home, etc.

When I was a baby my mother used to hold me and nurse me and talk to me about how one day I would hold and nurse my own babies.

On my car I have those little sun shades in the back windows. These things are better markers for 'don't tailgate! kid in backseat!' than those "baby on board" signs ever were. Mine say, "Future Driver On Board" with the Volkswagen logo.

When I look at my daughter, I know that nothing is certain, except that things will be harder for her. I don't know if she will own a home or a car. I don't know if she will marry or have children. I don't know if we will ever converse as equals. It's crushingly depressing to think about what she might not be.

It's much better to think about what she is, now.

Seussery

Ellie has the best nursery in the whole wide world. It's a bit LOUD, but it's way cool. And it's dual purpose, too. In 15 years or so, when she's a stoned teenager*, she won't even want to go live in the basement. She'll want to stay upstairs in her room, which is both right by our room and is very trippy.

* Paul and I are such squares. It would serve us right to have a stoned teenager. We wouldn't know what to do with her. "Um, sweetie, doesn't that stuff make it hard for you to keep in step with the marching band?" Yeah. I know. We're losers.

We chose the nursery theme before I was even pregnant. My criteria were straightforward: 1) not-excessively gendered, and 2) based on books, not TV or movies. I'm also not big on cutesy. Paul's criteria were even more straighforward: 1) Must be Dr. Seuss.

So, once I'd been pregnant for several months and we were pretty sure that we were having an actual baby, we looked around online and shamelessly copied some ideas. Painting ensued. We scanned pictures from books into the computer. I borrowed an LCD projector from work and Paul traced outlines on the walls. Then there was more painting. I spent these halcyon days sitting in the doorway to the nursery, reading aloud from the new Harry Potter book while Paul painted.

Right. Now imagine that you can't see the floor anymore.

Was the room really ever this empty?!

The placeholder rocker picture is just to show the cute Sneetches.

Now, this is more like it! Very tiny, very crowded room.

The dresser Paul built and painted, which is right under the big picture of The Cat in the Hat, is my favorite part:


I still do sorta miss my office, though.

Missouri First Steps - Draft 1

Matt Blunt is a poopyhead.

I've been spending a lot of time with toddlers, you see. And it's hard not to take this attack personally. I'm working on a somewhat more nuanced discussion of my feelings on this issue, which I can send to new Governor Blunt and to my Missouri legislators. (Blunt's first budget, effective August 2005, zeros out funding for the Missouri First Steps program.)

Matt Blunt, who is only a couple of years older than me, is expecting his first child, a son, in March. God willing, the little boy will be healthy. He won't come too early or too late, he won't experience trauma during the birthing process, he won't be harmed by any of the drugs used on his mother, he will be healthy and smart and will develop typically. If his son has any problems at all, Blunt's insurance will cover only limited therapy visits and he would have to private pay for therapy at $50-75/hour and take his child to a center rather than having therapists make home visits.

When you have a newborn who shouldn't be exposed to other kids because of a health condition, these home visits are particularly important. It's also hard to imagine visiting a center for the 5 therapy appointments a week that my daughter sometimes has. You can't stack the appointments up one right after another - too exhausting! So that's several different trips to a therapy center every week. How will parents find the time? Surely they're all working at least one job to pay for all this therapy.

See? Poopyhead.