Wednesday, March 25, 2015

Siblings: Helping Them Understand

I would say that most parents that have a child with any type of special needs worries how it will impact their other children.

We did too. We knew Elijah's life would be different because of Jaycee. She's sick often, she uses medical equipment, she's in different therapies, and she's minimally verbal. All of these things impact our own lives, so Elijah wouldn't be any different.

We knew we wanted Elijah to appreciate and understand his sister. We aren't raising him so that one day he can take care of her. We are raising him to love her and understand her.

Elijah is just 5 years old, so it's early to tell if what we are doing with him works or not. But, so far, so good.

Here are some principle we have tried to live by:

1. We talk about Down syndrome.
Jaycee has Down syndrome. It's a fact. We don't hide it. We aren't ashamed of it. We embrace it. We say things like: "She has Down syndrome and we love her."  "Jaycee tries her best but some things are really hard for her because she has Down syndrome." From the time he was little, we have talked about Down syndrome. This made it easy because we never had to decide when the right time was to tell him. He doesn't understand that Down syndrome is 3 copies of chromosome 21, but he understands that Down syndrome affects Jaycee's ability to do certain things.

We communicate about Down syndrome in a positive light. The bottom line is, we understand other children will notice her differences. They will have questions. I want him to know how to answer them. I also want him to feel free to ask me questions and get information from us.

2. We involve ourselves in the Down syndrome community.
We are in a rural area so we don't bump into too many different people with Down syndrome. Early on, we started attending Down syndrome walks and events in St. Louis so that Elijah can see that there are lots of families like ours. We try to go to 1 or 2 events a year as a family. We feel like this normalizes Down syndrome for him and us.

I purchased books featuring children with Down syndrome. When Elijah looked at these books when he was younger, I would say things like, "That child has Down syndrome, just like your sister. How cool!" Again, I just tried to normalize it for him.

3. We don't make excuses for Jaycee's bad behavior towards Elijah.
I read something in a book where a sibling described feeling resentment towards their parents and sibling with Down syndrome. She felt this way because she was often hit or pushed by the sibling with Down syndrome and the parents rarely disciplined that child because she "didn't understand what she was doing."

When I read that at the time, I realized I was sort of guilty of the same thing. It's easy to make excuses for Jaycee when she pushes or hits or eats his snack when he's not looking. After reading that story, I started to put Jaycee in time out when she did something wrong whether she understood it or not. She needed to learn not to hurt her brother. Elijah needed to know that he could be safe with his sister and we had his back.

4. We recognize that all siblings fight.
Following number 3, we understand that all siblings fight and get on each other's nerves. We don't expect 100% love and happiness but we get it almost all the time. We let them have small spats and try not to intervene every time.

5. We expect respect for Jaycee.
We don't use hurtful words to Jaycee or anyone else. In my childhood, my brother and I often used words like stupid, idiot, and dumb to lovingly describe each other. However, we don't allow Elijah to use these words to describe Jaycee or any other children. The worst adjective he's allowed to say is 'silly.' Elijah knows that words can hurt each other, so we try to use nice words even we are upset. Really, it's not a problem because we model the speech and words that we want him to say.

6. We talk about Jaycee's medical issues.
Doctors, medicines, equipment, and hospital admissions are part of Jaycee's life. Therefore it is important for Elijah to be comfortable and understand what is going on. What we explain and how much we go in to depends on his interest and his age. For example, when Jaycee had eye surgery last year, we told Elijah the night before that Jaycee's eyes weren't working right. She would have to go into the hospital for 1 night to get her eyes fixed. Then she'll be able to see better. We acted like it was not a big deal, so he wouldn't be upset.

For as long as he's been alive, Elijah has went with us to most doctor's appointments. He's also visited her in the hospital for almost every admission. We tell him what the machines or oxygen or medicine does. ("Jaycee's lungs are sick, so she has to have oxygen on to help her breathe.") If he seems uncomfortable, we remove him from the situation. But really there hasn't been much that's made him uneasy. He even visited her in ICU while she was on a ventilator. He didn't care. He pushed cars on her hospital bed!

There you have it! These are the main things that we do to help Elijah understand Jaycee. These two are pretty good buddies! So far, so good, but time will tell if we're doing it right.

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Tuesday, March 17, 2015

The R Word Strikes Again

I decided to get a cheeseburger on my lunch break. Who can resist bacon, beef, and cheese covered in grease?

I ordered and stepped back to wait for my meal. There was one cook working and struggling to keep up with the orders. She was obviously having a hard time. The orders were getting backed up. Another cook emerged from the back. He struggled too, asking questions about what toppings went on which sandwich.

Finally, the woman working the front went to the back and started assembling burgers and getting things in order. Clearly, she was frustrated when she said, "If people weren't so r*tarded things could get done." She was in the kitchen. I was 10 feet or more from the counter. I heard her insult perfectly clear.

Yikes! Not the r-word!

Shortly after, she smiles while handing me my food and tells me, "Have a nice day."

If only she knew. I'm just glad my daughter wasn't there to hear her shout the r-word.

I have other posts on the r-word subject, so I won't go in to everything again.

Today was just a reminder that people don't understand the r-word. People with loved ones with intellectual disabilities (formerly called mental retardation) find the r-word highly offensive.

People use the r-word as an insult, as a joke, and as a derogatory adjective.

It is those with intellectual disabilities.

So, since there are still people saying it, I will keep on educating people. The r-word is one word that hurts. People shouldn't use it! I know it's hard to change your vocabulary, but just be aware that families with special needs will take note if they hear you saying the r-word. Don't say it!

People with intellectual disabilities (and their moms) deserve more.
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Saturday, March 7, 2015

How Toddlers & Tiaras Changed My Life

I admit it. I have watched the show Toddlers and Tiaras on TLC long ago when I couldn't find anything else to watch on television. If you haven't seen the show, it features toddler and preschool age children doing beauty pageants. Moms are a big part of the show demonstrating how they prepare the child for the contests.

The money and energy the moms spent on these children! Living rooms were transformed into practice stages as the moms coached their children for the big day. I was surprised when I watched mothers give their small children sugar and soda so their tired child could have energy on the stage to perform. I shook my head when moms said their children loved the pageants and the pageants were teaching them valuable life skills when clearly the pageants seemed to fulfill something in the mother too. And if the child didn't place well in the competition or made a mistake, then the mom was mad.

As I watch the small children getting spray tans, putting in false teeth, getting beauty treatments, and other madness I declared, "Even if I did have a child who could do pageants, I would never subject them to such a thing!!"

And then it happened...a God moment....when you learn something about yourself out of no where. I felt God tell me that I was indeed that parent.

"How?" I asked. Jaycee isn't in pageants or any kind of competitions.

Then clarity: Many times, I have subjected Jaycee to private therapy for additional physical or occupational therapy to address her delays related to her Down syndrome and low muscle. I told myself it was for Jaycee's betterment. But, it could be argued that it was for my benefit too. Let's face it, if she learned a new skill it would ultimately help me as well. For instance, one year I took her to private occupational therapy for months driving an hour one way so my 3 year old could learn to feed herself. Her fine motor skills were a struggle. Feeding herself would be good for her but I could also finally eat with Jaycee at the same time.

There were things Jaycee liked in private therapy but there were certainly things she didn't like. If she had a good day in therapy, I bragged on her. If it was a struggle, I would sometimes get mad that I had wasted time and money for her to do this all for nothing. Yikes! Maybe I wasn't a pageant mom but instead I was a crazy therapy mom!

I would practice the assigned therapy homework with Jaycee during the week cluttering my house with balls, a trampoline, and other equipment. I begged her to do these exercises and drove us both crazy as I tried to motivate her to do things that would help improve her life. Gosh! I was the person I said I wouldn't be!

What a reality check from this reality show!

The past few years I have looked at possible extracurricular activities through these questions:
-Will Jaycee truly enjoy it?
-What is my motivation for doing this?
-What this bring joy or stress to our relationship?

In the end, this show reminded me of the mom I wanted to be.

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Monday, March 2, 2015

Wish Trip Part 7: The Finale!!!

Here it is....the end of our wish trip story:

The last few days of our trip were all about slowing down and relaxing before going back to real life. Our hotels and meals were now at our expense since we added these days on. However, we had money left on our debit card to cover most meal and shopping expenses.

We stayed near Cocoa beach so we could see the ocean, a new experience for the children. I didn't know how Jaycee would react. But, she loved it!
The water wasn't warm, so swimming was not a possibility. But, we enjoyed going in a few inches and playing in the sand. Elijah loved collecting sea shells. Jaycee liked laying on the beach. She was very content whenever we were at the beach. I like any place she's laying down instead of running off from me. We tried unsuccessfully to recreate a scene from my childhood.
This is a picture of me and my dad in '86 during our family vacation to Florida.
Here are some of the failed attempts...


It really wasn't a hard pose but we couldn't pull it off. Besides the beach and visiting our hotel's water park, we went for an air boat ride. The kids loved that as well. It was pretty neat seeing the animals and zooming around the water. We saw several gators. Other than that, we did some shopping, ate at some nice resturants, and went to a dinosaur store. The last few days of the trip were nice. But soon, it was time to fly back home. The magic was over, but we'll hold these moments forever. We loved this time together and cherish these positive memories we have.

Thank you to everyone who has taken the time to read about our trip. The bottom line is that Make-A-Wish and Give Kids the World are amazing organizations! Any family who chooses a Disney wish with the GKTW village will not be disappointed.

Enjoy some final pictures I like that didn't make it in anywhere else.

Jaycee hiding at the village.
Mayor tucking Jaycee in at the village.

All smiles on the tea cups at Magic Kingdom

Jaycee's doodle on her star for the Castle of Miracles
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