Tuesday, December 29, 2015

God, Baptism, And the R-Word (2015 Blog Review)

This year is almost over, so it's time to take a look back. Thank you to everyone who has read the stories about my journey as a parent over the past year. Today, I'll highlight the top three blog posts I had for the year just in case you missed them.

Before we get to the top three, let's review my favorite post of the year:
Does God Make Down syndrome?
I spent months and months writing this post. I wrote and rewrote, put it aside for a few weeks, and then added some more. I wanted to put into words all the thoughts I had whenever someone tried to explain to me that my child with Down syndrome was made by God. I didn't care what people had to say. I cared most what God and His word has to say. This post was a compilation of all the thoughts I had on this subject over the years. After I hit "publish" on this post, I had a stomach ache. I didn't know how it would be received and if I articulated my point of view well enough. But, I believe it was understood. Now, it is one of my favorite posts, but it didn't make the top three for the year.


Coming in at number 3 for 2015 is:
Where Is God When
This post too took some writing and rewriting. It came from a thought I had many times as a parent watching my child go through illness, surgeries, and indescribable things. I think it's human nature to wonder where a loving God is when there is heartache all around. It also seems to be human nature in trials to discount the "little" moments where God seems to be trying to answer that question for you.



#2 for the year is
Why I Cringe at the R-Word
The motivation for this post came from hearing the r-word in conversations between people. It's amazing to hear the situations and scenarios that people use the r-word as a descriptor for. It's frustrating as a mother of someone with an intellectual disability to hear that word thrown around. This post was me trying to describe why the r-word is a dig at people like my daughter and why she deserves more respect.



And the most popular post of the year was:
To the Pastor who Baptized my Daughter
I was so happy to share this post in celebration of Jaycee's 1 year baptism anniversary. That day was so special to me as a mother and a Christian. I was extremely glad that my pastor was willing to baptize Jaycee given that she didn't fit everyone's criteria for it (being able to verbalize her belief in Jesus/salvation). I'm glad this was the blog's top post for the year since it was a special day for our family.



Thanks for reading!! Hope to see you back in 2016!


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Tuesday, December 22, 2015

All She Wants for Christmas

"What do you want for Christmas?"

It's a common question that children are asked this time of year. And it's a question that Jaycee can't really answer.

We use total communication with Jaycee. That means we encourage Jaycee to communicate in any method she can whether it be sign language, gestures, words, or using her communication device that we call her talker.

Here's how our Christmas conversations typically go.

Me: "Jaycee, what do you want for Christmas?"

Jaycee: "Merry Christmas!" (on talker)

Me: "Yes, what do you want for a present for Christmas?"

Jaycee: "gift" (on talker) "me" (pointing to self)

We rarely get an actual answer to the question except when I cue her to the button on her device that says, "I want a singing Elsa doll, Peppa pig movies, and time with my cousin Gabby for Christmas." But I programmed that on her talker button not her. Does that count?

What Jaycee really wants is a mystery. She cannot tell me. The best answer I get is when I take her to the store. She loves to browse the toy aisle. The toys with characters she recognizes grabs her attention. She picks up toys, usually ones that makes music or noises, and then puts it right back on the shelf.

"You can have that. Do you want it?"

I gesture that she can put it in the cart if she wants it. But she hardly does. What does she put in the cart instead? Things she already has. A stuffed animal, movie, or toy she already has at home is what she gravitates toward, things she's familiar with.

"You already have this! Pick something else," I say in exasperation.

Then eventually, she will add a new toy to the cart. Success!!

And now there's a conflicting thought. I wish that Jaycee could just answer a simple question. Well, I wish she could understand the question. I wish she wanted something, and I wish I knew what that was.

On the other hand, Jaycee has a better attitude about Christmas than anyone I know. She doesn't care about the things she's going to receive. She doesn't sit around and ask me for toys advertised on commercials. Jaycee would be happy with anything she gets. She also loves going to family parties and cries when we leave. Her eyes light up when she sees the dessert table and enjoys everything she eats. She enjoys every minute of Christmas from the lights to the family meals.

That attitude is something we should all want for Christmas!







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Tuesday, December 15, 2015

When I Encountered the Disability Police

I have read stories on the internet about people being questioned about their use of a handicap placard. I wondered if that would ever happen to me and what my response would be. A couple of months ago, that moment came and here is my story.

I was grateful to find a handicap spot open at a grocery store I was about to enter with my two children. Can I just say it's a workout to shop with my daughter Jaycee? Jaycee can walk, but we use a medical stroller for long distances. She has Down syndrome, asthma, heart problems, a lung cyst, and obstructive sleep apnea to name a few of her problems.

Pushing 100 pound child in a medical stroller and pulling a shopping cart behind you isn't easy. I had a cart full of groceries, and I was ready to head home. I packed my groceries and Jaycee’s stroller in the back of my van. I had just seated myself inside my van when an elderly man approached.

He tapped on my window, which I partially rolled down not knowing what he wanted. He said, "Obviously, you aren't handicapped and have no reason to park here." I guess he didn't see Jaycee's stroller nor my shirt that said "Special Olympics" both of which should have been clues.

I said, "You're right, I'm not handicapped but my daughter is." I rolled down her window so he could see she had Down syndrome. He then said, "Well I'm sorry. You can park here but you know people do park illegally sometimes. My wife uses this spots and needs them and I watch for people who park illegally. I saw you get into your van so nimbly I knew you weren't handicapped."

I said....starting to get emotional because I hadn't done anything wrong but this guy is still giving me a speech..."The placard is for my daughter. She does have a disability not to mention she's been in the hospital numerous times."

He started in on his speech again refusing to fully acknowledge his mistake. He asked if I had left Jaycee in the car since he didn't see her get in. I wanted to laugh in his face. I can barely leave her unattended at home; there was no way I can leave her in the van while I grocery shop.

Finally, I said something else like "Ok but I am legal" and rolled up my window and left, since he was still lecturing me about parking space misuse.

Then I got to explain to my six year old son why what he called a “mean man” was talking to us.

So what do you do when this happens to you? I struggled to find the words in the moment as I just completely caught off guard on a simple grocery trip. Should I write about it on my blog? That would seem like preaching to the choir. After some thought, I decided to write a letter to the editor of the newspaper in which this event occurred. This letter actually ran in two local papers. I’m hopeful that this saved another mother with a child with a disability from an encounter like this.

 

 

Editor:

My 9-year-old daughter has Down syndrome. She has other health problems that aren’t noticeable. These invisible problems have resulted in 21 hospital admissions and a wish from Make-A-Wish.

In Mt. Vernon (last) weekend, I loaded my groceries and my daughter’s stroller in my van, which was legally parked in a handicap spot. The handicap placard hung from my mirror belonged to my daughter.

A gentleman knocked on my window, pointed to the placard, and wanted to know why I was parked there because I didn’t have a disability.

I explained it was my daughter’s. He said “sorry,” but explained how he finds people parking illegally and figured I was too. He told me how his wife uses these spaces, and he gets upset when he sees misuse.

I explained I was legal, because my daughter has health problems. This man insisted that people park illegally often. Honestly, I have no idea.

Being a speech-language pathologist for the past 11 years has given me a different perspective. I have worked with children who look fine when they actually have significant developmental delays or medical issues. The man who wrongly accused me is motivated by his wife. I am motivated by my daughter.

For that reason, I’ writing to remind people of the vast array of disabilities that are represented by the handicap placard. They aren’t just for the elderly. Parents who are transporting their children can rightfully obtain and use them.

Some disabilities are obvious and others are not.

Evana Sandusky

 

 


Jaycee in her medial stroller this summer.

 
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Wednesday, December 9, 2015

When You Need Plan B

Plan B, the backup plan, is common at our house.

I hate Plan B, but we find it necessary in our lives. Plan A is always the best plan, which is why it is the first plan after all. But, when it falls through for one reason or another, I like to have a back up plan.

Here's how things typically go with us. We plan a trip on a certain day. Once the date is set, we always have a back up date in mind just in case Jaycee gets sick. Then we wait and see what happens.

Here are bigger things that have happened in the past that didn't work out:

When Jaycee was a toddler, we were so excited for her to be a flower girl at a destination wedding in Florida. Then, she came down with pneumonia the day before we were scheduled to leave. Should we take our daughter on a long trip far away from home and her doctors? Plan B went into action. My husband went to the wedding to fulfill his duty as a groomsman alone while I stayed home and nursed Jaycee back to health.

Two years ago, Jaycee spent a week in the hospital. She was discharged the day before Thanksgiving. So Thanksgiving had to be different that year. We didn't go to any of the three family events that we typically attend during Thanksgiving. We stayed home recovering from the hospital, doing medications every couple of hours, and allowing Jaycee to rest. Plan B became a couple of family members bringing Thanksgiving dinner to us to eat at our home.

This summer, we planned a short family camping trip and vacation to Branson. We planned it in June when Jaycee typically has good breathing. But, it was canceled because Jaycee was in ICU when we should have been leaving. Plan B became a camping trip at a campground close to our house a few weeks later. It wasn't ideal but it was something. Actually, we ended up having a Plan C for this too. Just last weekend, six months after the first trip was planned, we made it to Branson. We had 48 hours to cram in all the fun we could before driving back home. It wasn't the original plan but it was better than nothing.


Forget the big things though, we often have a Plan B for little things. That looks like this:

We will take Jaycee in the store, but if she starts to act up, my husband will sit with her in the car.

We will make plans to go out for dinner but freezing cold air moves in forcing us to keep Jaycee indoors.

We go to church every Sunday together as a family. If Jaycee has a cold symptom, then we have to figure out which of us will stay home with her and watch the sermon online later in the week.

When Jaycee was younger, her health prevented her from playing in the snow. Plan B was always bringing in a bowl full of snow for her to play with and experience.


Plan B is something that many of us that have children with medical or developmental issues have to face more times than we would like. The truth is that sometimes it sucks to do Plan B. But, it is something that comes with having children. I have learned to be appreciative when Plan A actually happens and to learn to be satisfied when Plan B has to do.
Jaycee at Ripley's in Branson during our second attempt at going to Branson.

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Tuesday, December 1, 2015

Lessons Learned From Oversharing With a Stranger

I had an encounter last week that I can't get out of my head. I was Black Friday shopping with my sister-in-law and mother. My sister-in-law has 7 children, and I have 2. Black Friday became the day we could spend together without any children, which is a tiny miracle. It's our day to shop, laugh, talk, and brag about our savings at Kohl's.

I was the first to finish shopping in a mall, so I took a seat on a bench to wait for the other girls. An elderly man soon joined me on the bench. He made small talk back and forth. Eventually, he asked me about my family.

"I have a boy and a girl. My daughter has a disability."

The man responded, "That's too bad. What does she have?"

"She has Down syndrome. My husband is home with her today while I get a break."

"Well, there's worse things to have," the man replied.

I continued, "Well, she has other problems too. She has heart and lung issues, and she's in the hospital a lot."

The man said, "That will happen with that sometimes."

"It's a bit more complicated than that," I replied.

Then the elderly man's friends started up a conversation with him, I went back to playing Candy Crush, and that's how the conversation abruptly ended.

I replayed the conversation over and over wishing it would have gone differently. What was I doing? Why was I trying to tell this guy about how bad off my daughter was?

My second thoughts were in frustration that I couldn't make him understand. I feel like when people hear a word like "cancer" or "cystic fibrosis" people tend to understand that these are more serious, life-threatening diagnoses.

When people hear my child has Down syndrome, they tend to think that it's only developmental in nature. For most people, it is. For my child, it goes way beyond Down syndrome. Jaycee has a very unique set of health problems of asthma, obstructive sleep apnea, recurrent pneumonia, frequent atelectasis, lung cyst, AV canal heart defect, GERD, strabismus, and Wolff-Parkinson White syndrome. I feel like when people see or hear about Jaycee, they aren't aware of the fact of how many times her life has been in jeopardy.

But why was I trying to convince a stranger of this?

I prayed. I talk to God about what happened that day. What was the point of that encounter? And what was I suppose to learn from this?

During worship in church a few days later, I got my answer. My mistake wasn't that I was trying to overshare information with a stranger. After all, it's hard to hide that part of my life that is so consuming. My mistake was how I tried to present it. Rather than trying to convince him that my daughter was worse off than he realized. I should have shared her problems in the context of a testimony and not as a 'woe is me' story.

It should have gone like this:

"I have a boy and a girl. My daughter has a disability."

The man responded, "That's too bad. What does she have?"

"She has Down syndrome and requires daily medical interventions for other problems. My husband is home with her today while I get a break."

"Well, there's worse things to have," the man replied.

I continued, "Well, she is our miracle child. She's been in the hospital over 20 times with a few scary stays in the ICU. God has watched over our little girl."



Maybe next time, I talk to a stranger, I will keep this in mind.



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