Thursday, September 22, 2011


What is the response when you ask a couple who is expecting if they want a boy or a girl? "As long as it's healthy, we'll be happy." If you know any special needs kids and their parents, you probably would then think to yourself, well, what if it isn't? What then?

I have become very sensitive about common little sayings and comments like these lately. When we are insensitive about other people's weaknesses, on some level we are implying that we don't think we have any of our own, I think.

I am claustrophobic. My little guys have a birth defect that will cause them to be physically challenged for life. I have students who have trouble with reading comprehension. My daughter Ellie needs glasses to see well. Some folks had speech problems when they were little. Some little boys aren't good at sports. Some babies were born with devastating cognitive disabilities. A little boy I know gets confused and says off-the-wall comments at school because he learns a little differently than the other 19 kids in his class. We are all individually gifted and challenged, aren't we? We're all special, aren't we? We all needed special education at one point in our lives. It's not us and them; it's just us.

I know I say thoughtless stuff every day, all day. And I don't mean any harm, so I know other people don't either. But there have been a few things lately that have just eaten away at me, and I have to write it down or I might just implode.

1. Retarded is not a cute way to say someone is funny, silly, crazy, or stupid.

My doctor referred to men as being retarded because they never think about the little things that need to be done around the house. I think this one goes without saying, but why are people STILL using this word in this way? I mean, she's a doctor. I expect more. Maybe I expect too much.

2. Gay is not a word to use when you mean something is stupid, pointless, ridiculous, or weird.

Again, seriously, is this 1950? If they know what the word means, then why do folks still use it in this context? Think about it. Let's say you are Irish and someone uses that word when they want to express the word stupid: "I can't believe you punched a brick wall ; that's so Irish!" It's not only offensive; it doesn't even make sense.

3. Special is not a word to use in order to be condescending to people who have developmental challenges.

This was originally such a great word -- instead of focusing on kids' problems, we focused on their exceptionality -- they are special. Unique. Differently-abled. But recently, I have heard teachers use this term sarcastically instead: "This little boy in my class gives me a hard time every day, but he's my special child, so I just laugh at him." Or they complain that they have too many SPED kids in their class and it's not fair to the normal students. They are teachers; their job is to teach all children. What are they modeling when they do this?  That this student's needs are less important somehow?

On the kids' Jack's Big Music Show cd, there's a song called "I'm Not Perfect." And the lyrics are adorable:

I'm not perfect; no, I'm not.
I'm not perfect, but I got what I got.
I do my very best; I do my very best;
I do my very best each day.
But I'm not perfect, and you know,
I like it that way.

I love that. We try to make our kids perfect, whatever that even means, and they're just not. They make mistakes, they spill things, they forget their math homework, and they hide candy under their beds. They will never be perfect children. When we teach them that anything less than perfection is failure, we set them up for disapointment --  they can't win! Neither could we.

After listening to that song in the car, Ellie informs me: "But Mommy, I'm perfect!"
"Well, baby, you are amazing, but you make mistakes, don't you?"
"Yes, but not big mistakes."
"Well, making a little mistake, even just sometimes, means you are not perfect. Nobody is."
"I am perfect."
"Ellie, I love you and you are the best kid ever, but sweetie, no, you're not perfect. Neither is Mommy."
Pouting now, "But I wanted to be perfect!"
"Well, that's why we try very hard to do the right things. But only God is perfect."
"Oh yeah. And Jesus."
"But Jesus isn't real."
"Sure he's real."
"I mean we can't see him."
"I can help people."
"That's true. You are a great helper."
"When you say, 'Ellie, can you do something for me?' I will say 'Yes ma'am!'"
"So, I'm perfect, Mommy."
"Oh, just eat your granola bar."
"Yes, ma'am."

The last verse of the song continues:

You're not perfect; no, you're not.
You're not perfect, but you got what you got.
You do your very best. You do your very best.
You do your very best each day.
But you're not perfect, and you know,
I love you that way.

Friday, September 2, 2011

Letter to My Legislators

Representative Nowlin and Senator Long,

I am writing to seek your advice about a critical need for families with disabled children in Louisiana.

Recently, my twin boys, both born with spina bifida, the most common permanently disabling birth defect, were denied LA Medicaid coverage. Although we are participating in the appeal process, this letter is not about my family as much as it is about other families in the same situation.

My husband and I are both working people with good, stable jobs, despite the current economic uncertainty in our state. We clearly do not qualify for the standard healthcare coverage through LA Medicaid for children, since that is a need-based program. However, for one year, we did qualify for a supplemental plan for families of children with disabilities with higher incomes, called the Family Opportunity Act. Typically, this is a buy-in program with a small monthly premium.

When we learned we were being denied this coverage for the upcoming year, I was disappointed but not surprised. Even supplementary LA Medicaid has a maximum allowed income for the family, even a family with disabled children. This came as a shock to our friends and family all over the state. Everyone we talked to had always just assumed kids with a permanent disability automatically qualified for some form of LA Medicaid. I decided that even if our family never receives these benefits, I needed to speak up for other families with the same desperate need for help with medical costs relating to their child's medical disability.

First, let me assure you that the last thing on our minds is a handout from the government. What I am referring to is a need for assistance due to a child's devastating medical condition. Many of these children (like our own) were disabled from birth, so they would never qualify for private supplemental insurance due to a pre-existing condition. And I also know that over half of the children in Louisiana have some sort of Medicaid coverage, which is a high percentage and is incredibly expensive for our state.

Some other states offer automatic Medicaid qualification for disabled children (at least as a supplement to private insurance), and I'm sure this is partly because their populations are not as needy as Louisiana families. The message that we are getting from the Medicaid program is "You would be better off to just quit working and get full Medicaid coverage for your kids." This can't possibly be the kind of message we need to be sending to families in Louisiana.

What I am asking is that we recognize families like ours, who, although they have adequate income, are desperately trying to cover co-payments for visits to multiple medical specialists, expensive medical equipment denied by private insurance (like wheelchairs and other assistive devices), high co-payments for daily prescription medications, co-payments for lifetime weekly physical therapy sessions, co-payments for recurring medical needs like catheters and nebulizer supplies, and the list goes on and on. They are faced with the decision no parent ever wants to make -- whether or not they can afford to give their children the medical care the doctors say they greatly need.

I know writing a new bill is a long process and might not appear to be fiscally responsible, considering the costs involved with insuring even more families in the state, but this is an ethical issue that I feel must be considered. In the words of Hubert Humphrey, ". . . the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life; the sick, the needy and the handicapped.”

I would welcome any advice you can offer about how I should proceed, because I will certainly keep persevering to shed light on this critical issue. Thank you for taking the time to consider my cry for help on behalf of all the disabled children in Louisiana and their families.

Mariann Wilson