Wednesday, March 26, 2014


A few weeks ago, I received a note home from school. It detailed the information for the school's annual fundraiser, "Purple & White Night." There would be raffles, basketball games, and cheer leading. Last year, I read the note explaining how Jaycee could be a cheerleader and, without hesitation, threw it away. "I am not putting myself through that!"

I told myself all the reasons why it was a bad idea: Jaycee likes to run off. She can't talk and therefore can't say any of the cheers. She doesn't follow directions well. She's tired at night. She'll stick out because she won't be able to do it.

But this year, I read the note. Before I dismissed it, I thought about Jaycee first instead of myself. Would she want to do this? She loves pom-poms and loves her friends at school.

I thought about all the challenges in Jaycee's life. Six months ago, Jaycee was near death in the ICU. She had to learn to walk again. She had to work hard to recover skills. That illness has made me think about things differently. Maybe it's made me a little more willing to take chances and do things with Jaycee that I normally wouldn't have. When is she ever going to get a chance to be a cheerleader again?

After consulting with her classroom aide, I signed Jaycee up for cheer leading. There were only a couple of practices at school before the night of the performance.

I went to the big event thinking that success meant Jaycee didn't run off.

In that regard, it was a success. She did some of the motions to the cheers. I have no idea what happened to the ball game because my eyes were fixed on Jaycee. There was a smile on my face. My camera was taking picture after picture.

Then the time came for the short dance. Jaycee loves music. This was her shining moment. She knew most of the moves and was only a beat or two behind the other girls. She did her best, and it was great! And I learned that there is a pay off when taking risks.

Jaycee is the one front & center with the neon laces:

submit to reddit

Tuesday, March 18, 2014

Bad Parenting? It's all about Perspective.

Years ago, I was at a stoplight. In my rear view mirror, I saw an acquaintance in the car behind me. I sloppily threw my hand up in a half-hearted wave. In my mirror, I saw the acquaintance give a look of surprise. To my utter embarrassment, I realized that person thought I gave them a nasty, obscene gesture. I didn't, of course. I knew I had my index finger up while I gave my wave. My perspective: I was saying hello.

But, the perspective of the driver behind me: I was saying something entirely different.

The truth was found in my perspective. But, it didn't really matter. That person saw what she saw. From her vantage point, she had an entirely different story to tell from that chance encounter on the road.

Perspectives are funny. Sometimes, one's perspective is entirely wrong even though they would swear they had it right.
Imagine seeing a four year old child throw a tantrum in Wal-mart. It's not too hard to imagine. What would you think as you walked by the child throwing himself down and crying? What would you think of his mother? What kind of things would come to mind? Would you think the child was a brat? Do you think his mother can't control her son?

Now, would your thoughts change if I told you that child had autism? It would change my opinion. What if you imagined the child protesting had Down syndrome? Would that make a difference in some of your thought processes? What if you knew the child was nonverbal? Would it make a difference? It would for me.

There are people who are very opinionated about parents of children with special needs. Some of the most opinionated people I have found are 1. professionals who work with this population and 2. family members.
It's easy to say, "If that was me, I'd never do ___." Or, "If that was my child, ____ would be so different."

It's very easy to say these things and to form a wrong perspective when YOU are not the one living it day in and day out, hardly ever getting a break.
There are some things people say that really bug me. These things include, parents of children with special needs:
-baby their children too much.
-don't work with their children enough.
-don't discipline their children enough.
-tolerate too many bad behaviors.
I admit that all four of these sayings have been true about me at one time or another. It's not easy being a parent. It's far more complicated when your child has special needs. For me, I have struggled with finding a balance between being Jaycee's mom, nurse, and teacher. At times, I have been too stressed or emotionally tired to care about certain issues (like school work). I have struggled to discipline a child who communicates non-verbally. There have been times when I have let her "get away" with stuff I normally wouldn't because I'm just glad she's alive after a health scare. I'm not a perfect parent.

But, can't all four of those statements be applied to almost every parent in the world? It doesn't just go with the special needs population. But because these kids with special needs often have poor communication skills, their "bad" behaviors may be more obvious. Still, I have seen a "typical" 3 year old with a pacifier, when they don't really need a pacifier anymore. These awful parents baby their child! How dare they? I have witnessed children whose parents are not involved in their school work because they work long hours. I see parents of typically developing children unable to successfully keep their child in a seat at a restaurant. I have seen parents let their child do and say things that are inappropriate. I have heard a two year old curse without any sort of reaction from his parents.  
There is no perfect parent. We, as parents, all do things for a certain reason. Our perspective of our own child and parenting is one that is rationale and completely logical. The things we do. The things say. The things we allow. In our perspective, it's all reasonable. But, someone else may view our decisions, actions, and language in a negative light.

Perspective. It's important to understand that you may form an opinion on someone else's actions but you will never, ever truly know what it's like from their viewpoint. And just like the person behind me at the stoplight, you may just get it all wrong.
submit to reddit

Thursday, March 13, 2014

Strabismus Take 2

"Do her eyes look crossed to you?"
"Maybe," my husband said.
Back in August, Jaycee had her yearly eye exam. Everything checked out fine. But, after a horrific illness that landed Jaycee in ICU for three weeks on a ventilator, it seemed like something happened to her eyes too.
I hoped I was wrong. But, her teacher and my friend confirmed what I thought I was seeing. Jaycee's eyes are crossing while she wears her glasses.
I thought it would go away. I thought her body needed more time to heal from that life threatening illness. I gave it some time while we sorted through more pressing health issues. Then, I called for an eye exam.
Last week, we drove to our usual eye center. "Why are you back so soon?" We were asked, as Jaycee went right to the examination chair. In less than a minute, the examiner said, "You are right. Her crossing is back and is pretty bad."
Her crossing has a fancy name. Strabismus. We know this diagnosis. When Jaycee was a baby, she was diagnosed with strabismus. Her poor little eyes would turn in and be crossed. She had surgery when she was under 2 years old on both eyes to fix the problem. And the problem was fixed, until a few months ago. The crossing can cause problems like double vision or poor depth perception. It explains why she is hesitant when going down stairs.
The eye examination led to surgery this week. Today actually. She was given loopy medicine before the surgery so she would be calm. She was taken back to surgery. In 90 minutes, we were able to see her again. She was sleeping when we saw her at first.
This time, Jaycee just had one eye muscle shortened on one eye. After surgery, she had some bloody tears. (I knew to wear a red shirt this time!) Her eye is puffy and red. She was groggy for several hours. In time, we'll know just how successful the surgery was. Hopefully, it will be the last time we deal with this.


submit to reddit

Wednesday, March 5, 2014

"Do you talk?"

From time to time, Jaycee is around a new group of children who don't know her. I am amazed that the primary characteristic they pick up on is Jaycee's lack of verbal speech.

Several months ago, I took Jaycee to her brother's school orientation. Jaycee was previously in this pre-school class, so she took her seat on the floor with all the other children while the teacher gave her short speech. I was listening to the teacher but watching Jaycee nestled in between younger children she didn't know.

Jaycee was smiling and babbled happily, "Ba ba ba," as she often does. One of the pre-school children said, "Do you talk?" Jaycee replied with a smile. The pre-school student looks at the child next to him and says, "I don't think she can talk." There was a brief discussion between the two of them about her speech or lack there of.

I wasn't bothered by this exchange and other similar situations. The truth is that she can't talk very much. Sometimes a child will ask me why she can't talk. I try to explain it like this: Jaycee can say a few words like mama. But speaking is hard for her. Her mouth doesn't work like yours or mine. But she does know lots of sign language and uses her device to talk with me. She's really smart!

I think questioning why an 8 year old doesn't speak is a valid question. Explaining the interactions between muscle weakness from Down syndrome and muscle incoordination from childhood apraxia of speech is complicated.  But, I try to focus on what she can do and place a positive remark in their minds.

Oddly enough, Elijah's brother (age 4) hardly ever brings up Jaycee's differences. He has grown up with his sissy being a certain way. I don't believe he knows any better. A few nights ago, he made a strange comment, "Sissy hasn't said her first word yet."

I don't know where he got that idea or the phrase "first word" but I corrected him.

"Sissy has words, just not many. You know she says things like bubby, mama, dada, and bye bye."

That satisfied Elijah. He was gone with no more questions about Jaycee's vocabulary size. I was left wondering just what he was thinking about. I guess he's finally noticing Jaycee's speech and language isn't "typical" but maybe doesn't know how to ask the right question.

Whatever the case, I will be here ready to answer questions, defending Jaycee, providing insight for little minds, and helping children see her strengths.
submit to reddit