Thursday, September 22, 2011

Special

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."
"Right."
"But Jesus isn't real."
"Sure he's real."
"I mean we can't see him."
"Right."
"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!'"
"Wonderful!"
"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.

Sincerely,
Mariann Wilson


Friday, August 26, 2011

Firsts, Part Deux, The Sequel

I posted about the many firsts my kids had accomlished a while back, but I think it's time for part deux. All three are back to school -- one in pre-K and two back in their wonderful early intervention class. So, let's start the show, folks:

1. Words: Woody told me something was "disgusting" the other day. Ellie told me I didn't know what a "title" of a book was. Woody and Jack also invent words. Today at the doctor, he called a sink "washer hands." He said, "Bye-Bye, Washer Hands" after he was finished at the sink. Jack calls an umbrella "rainin." Looking in a book at a picture of U for Umbrella: "That's a rainin."

2. Jack is four-point crawling! He has been commando/army crawling/scooting for quite a while, but instead of just rocking or balancing in a four point stance, he is now moving those little knees and going places. You can see how much concentration it takes when you look into his face -- every movement is intentional and takes such focus. But he's getting faster and stronger every day!

3. Ellie Marie, my sweet girl is enjoying her new school very much. She has to walk from the car to the hallway of her school all by herself in the morning . She was a little nervous about that at first, but is an old pro now. All she's shared about school is that she gets chocolate milk, there is a play kitchen, and they "drag" the letters of the alphabet (not sure about that one). Oh, and if the kids get too loud, her teacher places her hands on top of her head to let them know to quiet down. Cute.

4. Wheelchair skills: Jack managed to get himself out of his classroom, down a short hall, and into another classroom in order to watch Barney during pick up time at school the other day! His teacher was so proud but let him know he has to have permission to leave the room -- imagine that! We've come a long way, baby.

Wish I had pictures to share, but even if I could find the camera, I don't think I'd have time to use it!


Friday, July 8, 2011

Little Sneak

Woody has decided he can army crawl and roll around well enough to get into some trouble, and this seems to be the biggest motivator yet for my little guy to get moving.

I found him a little while ago after I had left the room to switch over the laundry. I knew it was oddly quiet! Woody was hiding and eating candy he had dumped from a water bottle:


It's so exciting to know he can get away, hide, and be sneaky.  I am very thankful to have this sneaky little boy!

Tuesday, July 5, 2011

Itty Bitty Vacation

The Perkins family reunion gave us a good reason to get away for the long 4th of July weekend. We stayed with Maw Maw Judy and Paw Paw "Randis" (Woody kept mixing his paw paws -- Randy + Travis= Randis)!
Our first big adventure was taking the new bridge in New Roads for the first time. People have always traveled by ferry to cross the Mississippi River from Point Coupee Parish to East Feliciana Parish, and now that there is a bridge, we have a more straight shot over to my mom's house, which saves us about 45 minutes of driving (at least). Strangely enough, there were no signs, and it took us a while to find the dang bridge. At the gas station, we asked which way to turn for the bridge, and the young lady asked, "Which bridge?" What bridge?! Are you kidding? Once we saw it, we wondered how anyone from this town could ask that! The John James Audubon Bridge is the longest cable-stayed bridge in the Western Hemisphere according to the website: "Each cable stay is anchored to a 500-foot tower, which provides support to the bridge deck. Each stay contains 20 to 69 individual cables for a total of 4,548 cables." It cost over 400 million dollars to build. And it's sitting out beyond a bunch of sugar cane fields in the middle of nowhere! It was very impressive!




Our fun also included a quick trip to Hammond to the Children's Discovery Center, a children's museum! Favorites: Jack loved the big bubble room. Woody was very interested in the ambulance/EMT spot.


Ellie adored the Middendorf's restaurant exhibit where she took our orders and brought us something completely different! We did a simulated hot air balloon ride and laughed hard at Chris and Aunt Nene almost getting stuck in the slide trying to help the boys get a turn :) 

Another fun trip was to the Aquarium of the Americas in New Orleans after church on Sunday, although we went through a terrible storm getting there -- hail and a very loud downpour. But once we got there, the kids were amazed! Ellie called the parking garage a "car cave" and the winding ramp a "car slide." I have some serious small-town kids. The see-through elevator in Canal Place that seemed to land us in a fountain was exciting, too. Mom and I joked that all we needed to do was go to the parking garage to entertain my silly kids. Favorites at the aquarium: Ellie was tickled at the hammerhead sharks ans the stingrays. Jack loved the penguins! But he calls them "pen-goyns", which is too cute. Woody is not our animal lover, but he did seem amazed by the BIG fish in the Gulf of Mexico exhibit -- sharks, sea turtles, and enormous tarpon! But the highlight was when Jack attempted to hold the feeding stick in the Parakeet exhibit and the little bird nipped his finger. He stayed pretty calm. . . . and then knocked the bird right off that stick! Don't mess with Jack, parakeets!


On the 4th, we headed to the country to have the family reunion. There was a good turn-out, so we were able to visit with our favorite cousins and a few relatives several times removed . . . especially from my memory. We ate goat. Yep. Goat. Chewy. Anyway, all sorts of garden vegetables like butter beans, tomatoes, cucumbers, and sweet corn, tons of desserts, and homemade ice cream, too. It was exactly what a family reunion in July in Louisiana ought to be, I guess: HOT. An afternoon shower helped out a little bit. We watched as the big group of people fishing down the hill at the pond came running toward the house!

I'd say this was a fun little escape and a great way to spend the 4th, enjoying all things America. And we discovered that 2 of our 3 kids are entertainers to the core -- making people laugh by singing, laughing, dancing, and being comedians. They were a riot. And Woody, the non-entertainer, is a flirt who loves to cuddle and spend time with people one-on-one. He can win your heart in his own way :)

Real pictures on "The Facebook" as soon as Nene posts them (I took almost none, sadly.)

Monday, June 27, 2011

Yes or No

At church during Vacation Bible School a couple weeks ago, I taught the kids a lesson during which they had to respond to several yes/no questions. The twist was they had to answer in a language other than English: oui, non, da, nyet, si, no, jah, nein. It was pretty entertaining. We sounded like a meeting of the United Nations, which was appropriate, since the theme of the week was New York City.

Well, that started me thinking about how often I have to say yes or no every day at home: No, you can't have candy for breakfast; Yes, you have to brush your teeth; Yes, flamingos stand on one leg quite often; No, you may not lick the toilet (sadly these are all actual statements overheard in my house this week).

Chris and I sometimes get so exhausted it seems like all we ever say is "no." I catch myself saying it almost out of habit, and then I stop and ask "Why not?" Is there really cause to answer with a no on this issue, or am I just tired of making decisions and cleaning up messes? Can I paint, Mommy? (Why not?) Can we have lunch on the floor in the living room like a picnic? (Why not?) Can we stay in our pjs and watch a movie this morning? (Why not?) Can we have peanut butter and sprinkles on our pancakes? (Why not?) Can I help you make the cornbread? (Why not?) Can we have a playdate tomorrow with _____ ? (Why not?)

Some people call it picking your battles, and I guess that's basically the idea. I don't want to be the "No Mom". Being a "Yes Parent" who reserves her no's for when there's a solid reason seems much more furry and cuddly, right? Is it going to hurt someone, make someone sick, show disrepect to someone, destroy something, annoy someone, or start a very bad habit? If yes, then the answer is "no." If not, then why not?

Same goes for grown-up stuff too -- why say no to something new or something that might be fun just because it might require a little extra effort on my part or it might mess with my routine a little bit? Usually, I'm glad later that I didn't dismiss the idea and just went for it instead. Why not stay an extra day, try something different on the menu, take the scenic detour, or meet back up later? Even those numerous trips, tasks, or chores that I simply don't want to do but are important to someone else and might bring them happiness -- why not?

But there is also the important art of when to own my "No".
I frequently find myself saying yes to ideas, projects, and tasks without giving them much thought at all, and then I am completely worn out from all that yes action. Is the goal something that is helpful to my family or to someone else? Is the outcome worth my time and energy? Will it be memorable or forgettable? If nobody really cares and it's just something on a guilt-soaked mental to-do list that will only drain me of energy and put me in a bad mood -- no.

I'm a work in progess, but I am close to mastering three skills involving yes and no:

1. If something will make my kids happy, help them learn something meaningful, or make memories, and there is no real reason to say no, I try to say yes. I sometimes still struggle with getting my butt in gear, though.

2. I try not to apologize or make excuses for my no's; I just say no. I'd rather be given the options and decide for myself if a or b is beneficial enough for our time.  Then I can give an honest yes or no, without all the animal dung that we usually attach to our responses.

3. I try to accept "no" as a perfectly appropriate response from other people. Do they really need a reason other than they just don't want to if the choice in question is not that important? Nope.

I guess writing a blog somehow landed on the yes list -- Oui, Da, Si, Jah!

Wednesday, June 1, 2011

Four Years have Flown

My sweet Ellie Marie turned 4 yesterday!

She isn't a baby any more :( Here she is at 2 trying to perform, despite a familiar soundtrack  in the background (her baby brothers). This is one of the things I love the most about my Ellie -- she finds a way to blossom in our craziness!


I would say that Ellie is:

Entertaining ~ We get to see the "Ellie Show" live every night. Lately, she gets behind a curtain and I must properly introduce her: "Ladies and Gentlemen, Boys and Girls, Children of All Ages -- Now Introducing the Amazing, the Talented, the Beautiful . . .  Ellie Marie Wilson -- Walking Like a Dog and Blowing a Whistle!" Here's the hula girl in action:


Loving~ She wants everyone to be happy, so she tries very hard to keep the peace. It hurts her feelings if the boys get into trouble or if Mama isn't feeling well. She'll whisper "Boys, don't be loud; Mommy has a headache!"

Like Her Mama ~ She enjoys snuggling in and watching TV, reading a good book, having long conversations, and eating yummy food like fruits, veggies, chocolate, and cookies! She isn't too interested in hairbows or fancy clothes -- comfort is key. Poor thing even looks like me :)

Inquisitive ~ My girl loves books, playing learning games on the computer, and going to school. She asks questions about the river, the train, the birds, the flowers, the groceries we buy, and . . . air pollution? Thanks, "Sid the Science Kid."

Easy-Going ~ Ellie Marie is a happy and easy-to-please little girl. She gets excited about anything new and will pretty much go along with whatever her Daddy or her teachers come up with. She is a good listener and rarely gets into trouble, since she is kind and pretty willing to go with the flow. Flexibility is highly valuable in our home, as you can imagine. Here she is trying out her big and exciting birthday present  -- The Extreme Coaster!



Happy Birthday, Ellie Marie! You will always be my baby girl :)