The Bright Side

I have started writing several blog posts recently, well, in my head anyway.

1. The adventure of cousins coming for a sleepover during Thanksgiving break.
2. Our latest Shriner's visit and all the medical updates on the boys.
3. The fun-filled and jam-packed Christmas holidays.
4. A year in review post highlighting all the exciting happenings in 2011.
5. The whirlwind girls only trip to New Orleans with Ellie.

But, when I honestly express what's on my mind, I worry, fret, get the jitters, and even start to tear up. It's too much sometimes -- the lists in my head, like mutli-colored juggling rings all about the crash down if I don't start grabbing them in the right order.

Maybe it's just been a hard week trying to get back into the habit of working all day, juggling my time, handling all the day-to-day messes, and putting out fires left and right -- all of it just to get up the next day to start over again. Maybe I just miss the snuggles and giggles I get to see all day when the kids are home, even if it is exhausting. Maybe I just need a stiff drink nap.

Well, instead, I think I will put off writing those other blogs and follow the lead of one of my friends and have my very own "Thankful Thursday" to list those things for which I am grateful. It has to be better than sitting around feeling all bummed out.

I am thankful for:

Jack learning to say "I missed you, Mommy!"
Ellie getting so excited about having slippers.
Woody pretending there's a smiling goldfish swimming in his cup of water.
Chris reading a book I just finished, and me wanting so badly to talk about it but having to wait.
How much my mom loves all things Louisiana and wants all of us to love it, too.
My sister's tendency to always stay positive and energetic, even when she might not feel like it.
Carlos's ability to eat everything on his plate and my red beans and rice, too. He's a beast.
My sweet in-laws' willingness to spend time with my kids when I know it's not always convenient.
My pediatrician working us in for asthma issues on Martin Luther King, Jr. Day.
My friends at church who remind me I am not alone in my lamenting.
The extended families we love so much -- all very unique and equally goofy.
Lifelong friends who know me so well, even if we haven't spoken in months.
Leading a discussion about literature, and the room has an atmosphere of curiosity and anticipation.
Stepping on toys barefoot in the dark and trying not to introduce potty words to the little ones.
A friend giving us extra groceries even though she's facing a tough time herself.
Friends and even friends of friends offering to help us if we feel overwhelmed.
Jack telling me eating vegetables is stinky.
Ellie being sad when we are out of broccoli for a snack.
Woody continuing to say Merry Christmas to everyone he sees even though it's nearly February.
A husband who gets the boys changed and dressed before I'm even out of bed in the morning.
The teachers who are so patient when they are outnumbered and surrounded by conspiring trouble-makers.
Coffee with a splash of milk.
A letter in the mail instead of more junk.
A break in the work day to write a silly blog post and zone out for a few minutes.

Big Boys

Confession:

Jack and Woody are creeping up on three years old, and I'm not ready to treat them like big boys.

To be honest, it's easier to forget they're getting older and just let them stay babies, especially since we still carry them around, push them in a stroller, and change their diapers. They roll around on the floor and sometimes crawl. And they still like to be snuggled, which is a big plus! People at Walmart think they are enormous, brilliant 1-year-olds, since all they see are two fat little babies sitting in the buggy and talking to everyone they meet.

However, Jack and Woody make it very clear that they are no longer babies. They get tired of being on the floor. They get fed up with seeing the world from everyone's feet, and they don't like sitting in a baby high chair to eat meals at home. They also get frustrated when they need help with simple things and are not able to run away from us and just go wild like little boys do. All of this causes them to rely on their speech -- they have to tell us what they want. Consequently, their vocabularies are sky-rocketing and they have started doing just that! Woody will ask to go play in his room with his trucks and trains. Jack will ask to play with the kitchen in Ellie's room. Woody asks to sit on the potty (we let him, although we're not sure what exactly will come of that one). They clearly know a baby when they see one, and from what we can tell, they know they are not babies.


The Wheelchair Conundrum
The boys are getting pretty skilled with their wheelchairs at school; they roll up to circle time to be with their friends and push up to the table for lunch. They make us so proud! The bummer is, at home, we just don't have the space for them to use their wheelchairs much, if at all. They can't turn around in the hallway or bathrooms, our bedrooms are all carpeted, and if they try to steer around the furniture in the living/dining room, they end up ramming each other, the walls, or the furniture (also, our dining table hits right at their eye level when they are in their chairs, which worries me). This is yet another instance where having double the trouble blessings means double the dilemma. We love our home, and we are very thankful for it. I can't imagine how we would have handled this in the trailer we rented before we moved here! However, we went from no children to three, two of whom are physically challenged, within two years. We certainly didn't expect that! And we picked out ceramic tile floors before we knew we'd have children who would crawl for a lot longer than most do. I have a hate/hate relationship with these floors. You should see the bruises on my babies' big boys' arms.


The Plan for a Big Boy Upgrade
I am constantly trying to figure out better ways to use the space we have for what we all need, but that can be very frustrating. What I know is I have to make it work, and what we need will always be in flux. However, for right now, there are a few key areas that need a big boy upgrade, so I am thinking about purchasing, borrowing, or stumbling upon a few things within the next six months or so, and each one will help us treat the boys like three-year-olds, not babies.

Wish me luck!

Get Real!

"Taking Pictures of the Little Ones, a Study." 

 Pictures we might print for Maw Maw or post on Facebook:

The other 100 or so we snapped while trying to get one good picture:

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.

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

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!

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!