Thursday, November 29, 2012

A Salt Shaker

Sometimes I just have to stop and take a breath. There are some things Jaycee does sporadically that really annoy me.

Some things just bug her which in turn bugs me. For instance, she hates pillows on couches and cushions on chairs. Before she sits on my mom's wooden chair, she throws that cushion down to the floor. We don't have a coffee table. But, when we are at a house with one, she likes to clear it off. It's embarrassing. It's like she's saying, "You have too much junk on your table."

Then there's the stuff she does at home. Sometimes she likes to throw my books off of my end table. She gets in a mood to throw the pile of blankets on the floor into a heaping mess. I don't understand why she hates clutter unless it's on the floor. Of course, getting her to pick her mess up is next to impossible.

Tonight, she was in rare form. Apparently, she decided to hand wash the throw pillow by placing it in the bathtub. Then she managed to get her dad's towel soaking wet by drying off with water still in the bathtub. Then, there was the strange act of her dropping the salt shaker into my water glass. Finally, she decided that some of my Christmas decorations were better displayed on the floor than on the cabinet.

Nights like tonight are a challenge. I have to stop and take a breath. I find myself saying "Help me Jesus." And I mean that prayer! Sometimes I get frustrated going from mess to mess. I don't understand why she does certain things. Of course, she doesn't speak so she can't tell me what she's thinking.

I'm trying to remember I can be frustrated and upset all night or I can take a breath and let it go. Now that it's been a few hours, it's kinda funny that she put the salt shaker in my glass!
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Wednesday, November 21, 2012

Finding Thanks

Tomorrow marks another Thanksgiving. I've had thirty plus Thanksgivings in my lifetime. The past 6 years have been a love/hate relationship with Thanksgiving. I want to make something very clear: I love my daughter with Down syndrome. She is awesome. She has changed my life in so many ways. Jaycee is someone I am thankful for without a doubt.

With that being said, her health problems have robbed us of so much though: the certainty of her future, peace of mind, finances, the simplicity of certain things such as playing in the snow...  Her health problems (sleep apnea, asthma, heart issues) aren't her fault. She takes them in stride and remains joyful about life. But, her health issues often leave me feeling worried, pessimistic, and fearful. Sometimes, I have struggled to see any good in a situation. For example, someone might remark about the "blessing" that happened when Jaycee got out of the hospital. I was too busy stuck on--why did she have to be sick and go there in the first place. I would be so angry with God or fate or just life in general about her illnesses to see any good. I saw her hurting and her life being threatened. Yes, I was glad she was fine but I was too shaken to be magically happy about anything from that situation.

There have been some Thanksgivings in recent years when I have felt like I have had more to be angry or upset about than thankful. My attitude stunk! Maybe it was depression. Maybe it was exhaustion. I'm not sure what it was but the feeling was real.

I'm happy to say that this year I've had such an attitude change. I do feel grateful and thankful for many things in my life. I choose not to focus on the times she was in the hospital this year. I choose to focus on the majority of days that were spent at home laughing and having regular old life. I'm thankful that God has helped me look at things with fresh eyes and allow me to see the good in things again. Happy Thanksgiving!

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Thursday, November 15, 2012

5 House Rules

Today I'm going to give you our top 5 house rules. These rules have become second nature to me. In fact, it was hard for me to think of 5 rules because I just do these automatically without thinking about it. We do have to make many adjustments in our life to keep Jaycee safe. Here are the top ones:

1. Jaycee can never be outside alone.
Even at age 6 1/2 years old, Jaycee can't be trusted to be left outside alone. Maybe if we owned a fenced in yard, this would be a different story but we don't. Most of the time, Jaycee is fine outside. However, you never know when Jaycee will decide to take a walk down the road or step into the road to check the mailbox. Plus, we have a swimming pool outside which she thinks she can get into without supervision. The bottom line is that Jaycee doesn't understand dangers that exist.

When I'm at my brother's house, I enviously watch his kids run in and out of the house without supervision. His kids know not to go near water or the road. They stay close to the house where there is safety. His house feels like another world to me. I dream of the day that I can be in that world too.

2. Always keep the doors shut and/or locked.
This rule goes with the first rule. If Jaycee can get outside, she will go. The problem is, she doesn't tell me when she goes outside. Our front door is heavy so Jaycee can't open it. But if I decide to leave the front door open so the screen door can let air in, then I can expect Jaycee to make a run for it. It doesn't matter if it's hot or cold or if she has shoes on or not, she'll go.

To minimize the risk, we have furniture in front of one of our doors. Another door has a knob cover on it making it impossible for Jaycee to open. These are changes we have made to keep Jaycee safe. The doors are always shut or locked. I don't notice this being odd anymore unless someone comes over. If someone forgets to shut a door, I check to see where Jaycee is and then decide if I need to panic or not. That's when I realize that other people don't live like me.

3. The windows are generally always shut.
This rule isn't about Jaycee trying to escape. She's never tried to jump out a window. Ha ha! This rule is for Jaycee's asthma. There are a few times a year when we feel it's safe to open the windows. But during the mowing season and farm seasons, the windows are shut. We try to minimize the allergens in our house.

4.  Certain things must be kept out of reach.
There are certain things that have to be placed strategically to keep Jaycee from losing them or messing with them. If I leave my Bible out, she will surely rip those thin pages! But if I keep it in a drawer, she'll leave it alone. Car keys and cell phones are kept on the counter where she can't reach them. Otherwise the panic button will start sounding the alarms. She just likes the red button!

5.  The kitchen must remain "baby proofed."
I thought by now we'd be done with all the baby locks on the cabinets. But, they are still there. Some of it has to do with keeping her safe. Some of it has to do with keeping her from making a huge mess. Of course knives are something that must be kept out of reach. I cannot set the table before dinner and include the knives. Those wait until we are all seated at the table. Even if I get up to get more food, I have to move my knife out of her reach. A kitchen free of locks and safety latches is another foreign world to me that I hope to reenter one day!
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Friday, November 9, 2012

Talking or some version of it

It's funny how a small chance meeting can set off a series of events that change your life.

Let's go back about 2 years ago. I decided I would attend a training on cochlear implants. I needed the hours. It sounded interesting but I didn't have a real reason to attend the training except that I'm a speech-language pathologist.

The training was taught by a speech-language pathologist (SLP) from Children's hospital. The same Children's hospital my daughter sees several specialists at. The SLP seemed so knowledgeable. I kept thinking that I should talk to her about my daughter.

I was so frustrated with my then four year old's language. She had a few basic words but signed hundreds of words. She could correctly sign colors and letters. She understood her shapes and was even beginning to sight read a couple of words. Yet, there were few words spoken after a few years of therapy from different SLPs and myself. I knew something else was going on because there was a significant difference between what Jaycee understood and what she said. This led me to one day seeing another SLP who worked in Jaycee's school district. She was considered somewhat of a local expert in our field so I talked to her about Jaycee. I told her my concerns and the signs that indicated childhood apraxia of speech. (Google this if you don't know what it is.) She assured me I was wrong. Jaycee was a typically delayed child with Down syndrome and low muscle tone. (Apparently, she missed the statistics that 10-15% of kids with Down syndrome have childhood apraxia of speech.) Be patient, she said.

I wanted to pull my hair out. Be patient while my daughter can't tell me basic needs? Be patient while she had a handful of people she could communicate with? Am I smarter than everyone else or is everyone right and I'm sooo wrong?

So, I found myself cautiously approaching the SLP from Children's at that training. Is she going to think I'm off base? I hurried up to the front to talk to the SLP before I lost my nerve. She was nice. I asked if there was any SLP at Children's who had experience with nonverbal children and could provide me some information. She put me in touch with her colleague.

Fast forward a few months. Jaycee is evaluated at Children's. She is diagnosed with childhood apraxia of speech, which was no surprise to me. That SLP gently encourages me to consider a speech generating communication device. Immediately, I resisted. I want her to talk. I want a magical treatment plan that will do something that hasn't been done in nearly 5 years now. I don't want her to carry around a device that will make her look different.

After the shocked mommy reaction, I stopped. I used my brain. I researched and read. I convinced myself this was the way to go. Ok, it's not what I planned but: no more signs, she can talk to EVERYONE now, no more of me trying to learn signs to teach her... 

Sometimes you have to recognize that someone may be smarter than you and take their advice. The process started to get her a device. That was almost two years ago.

Today, I watched my Jaycee do something amazing. During her school's tribute for Veteran's Day, she led the entire audience and school in the pledge of allegiance using her device. I sat there thinking about how far she's come in two years. Because of her device, she's had opportunities come up that have allowed her to participate with peers and in the community that would have been otherwise impossible. Every time she orders at a restaurant using her device or answers a question someone asks her, she's connecting with people and opening their minds about her.

It's amazing to think that one small act of courage to talk to an SLP at a training resulted in Jaycee doing a regular kindergarten school act today.

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Saturday, November 3, 2012

Letting go

These are no ordinary piles of clothes. This scene from a garage sale I had a few weeks ago represented a big decision.

When my husband and I talked about what our family would look like years ago, we envisioned three children. After Jaycee was born, I started questioning if I could handle the responsibilities of three children. Sometime last year (probably during 1 of Jaycee's 6 trips to the hospital) I concluded that two children seemed just fine. My husband hoped I would change my mind, but supported my reasons for the decision.

I gave my husband a list of reasons why a third child didn't seem reasonable: I haven't had happy, easy pregnancies, Jaycee's health issues & a previous miscarriage have left me a little reluctant to try again, the financial costs of Jaycee's medicine and medical bills never seem to go away, our house is cramped already, etc. But the major reason was that I didn't feel like I could handle balancing working part-time, the home responsibilities, and caring for three kids. I love my kids but some days are stressful. When Jaycee doesn't listen, runs off from me in a parking lot, and can't communicate what's wrong, I know I'm at my limit. Everyone has their limitations. I am very aware of mine and aren't afraid to admit them.

My husband brought up concerns for Elijah. Having another child might take pressure off of Elijah later on if he'd ever need to care for his sister as an adult. Having another child would give Elijah a sibling he could better identify with/find support with. I reminded my husband that there was no guarantee that this future child #3 would be perfect and healthy. The discussion went on many times. On something like this, both people need to agree to have another child and be willing to accept their partner if there's a difference of opinion. My husband is great. He let go. Well, we both did. Because, it was my dream to have a third child too. Even though I was the one who didn't think it was a good idea, it was still hard for me to come to the realization that we were done having kids.

Months after my decision, the tote labeled "maternity clothes" stared at me every time I went to the basement. As the kids outgrew clothes, I still packed them away as if I was going to use them again. As I tripped on the the jump-a-roo and baby swing, I wondered why I still had these. Baby blankets took up valuable drawer space. Baby bottles, pacifiers, and sippy cups.... It had to go. Holding on to this stuff didn't help me move forward.

My first step was to take my maternity clothes to my sister-in-law who was pregnant with baby #7. (She obviously has a higher threshold for noise and stress!) I dropped the clothes off and announced I never needed them again. I didn't care if she used them or not. I needed to get rid of them. I also needed to say it out loud to someone else.

Several months later, I decided to sell all my baby stuff at a garage sale. The clothes, the blankets, everything. Well, I kept a box for each kid to save blankets made by family members or a toy they really loved as a baby. Whatever was left from the sale was donated to needy families.

It felt good to let go. Our house isn't as cramped now either with all that stuff gone too!

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