When things go wrong\I.c.u.

There are times when Jaycee is sick with a cold that causes me to be nervous. Nervous that she will get worse. Nervous that she will end up in the hospital again. I find myself pacing the floors, checking Jaycee with the monitor frequently, and just feeling more stressed. I worry she will get sick and things will go horribly wrong like they did last year. But, for 8 months Jaycee has stayed out of the hospital. She has been sick but I was able to treat her at home. It has been nice. Still, during times of illnesses my guard has never went down, with thoughts drifting back to last fall when Jaycee was on a ventilator for three weeks.

Sometimes no matter how much I try, things can go wrong quickly. There has been a perfect storm of bad things happening that ended with Jaycee back in the ICU currently. First, it started with a trip to the dentist to get 4 teeth pulled. That led to Jaycee drooling profusely and not being able to control her saliva. Her numbness also led to her severely biting her lip. Then, after we got home from the dentist. She was wheezing, which I assume is from the gas they gave her. The next day, she's still wheezing. By that night, a cold seems to be developing. The next morning, it is clear that something has settled into her chest. In less than 48 hours, Jaycee went from being happy and fine to being driven to the hospital by us. I didn't even have time to panic or pace the floors or wonder how this will all play out because it happened so fast.

I was happy when the ride was over and we were in the emergency room. My role as nurse was now going to be played by a real one who knows what they are doing. Hours pass in the emergency room and Jaycee only gets worse. She was sent to the intensive care unit and went on a bi-pap machine full time. Diagnosis: rhinovirus (3rd time positive for it in the hospital) and pneumonia (3rd time this year)

It is scary being in this place again that I have tried to forget about since her time here last year. If you find yourself here once you pray you are never here again. it is draining. I don't want my little girl to suffer and be this sick. And when she almost had to be intubated again a few days again I thought I was going to be physically sick. Fortunately it didn't get that bad.

So we sit in icu another day waiting for her body to heal and hoping that day comes quickly.

What Jaycee Brings Out

Over the years, I have found that Jaycee brings out the best and the worst in people. With children, there are immediately some who respond to her with smug looks, rudeness, and intolerance. Maybe they use mean language with her and maybe they just ignore her. These children don't know how to respond to a nonverbal child who looks a little different and does things a little different. Perhaps, these children are stuck up. Maybe they have never been around someone with a disability. Maybe they don't understand why she is like she is and she confuses them. For whatever reason, Jaycee can bring out the worst behavior in some children.

Then there are the children who are drawn to Jaycee out of love and care. They choose to sit by Jaycee, hold her hand, or give her hugs. They ask questions about how she communicates and what her favorite things are. They see her as a person. At church, these children have requested prayer for her so that she will have the ability to speak. Perhaps these children have a family member with a disability. Perhaps, they just have an innate ability to take an interest in people that some would ignore. Maybe, their parents have spent time talking to them about children who are different. Whatever the reason, Jaycee brings out the best in these children.

At Bible school last week, there were a few girls who took an interest in Jaycee. They offered to feed Jaycee her cupcake, even though she was capable of feeding herself. They took Jaycee to the bathroom for me and escorted her around the church. They wanted to be on her team for the games and offered their help to her so that she could participate. These girls asked me where she went to school, what signs she knew, and other questions about her life. It was wonderful to observe children giving Jaycee friendship and love that she desperately craves. She signed "friend" every night when they left church and cried.

I don't know what makes some children react the way they do to Jaycee. I try very hard to not look down upon the children who mistreat Jaycee. After all, I was never the child who tried to befriend a child with special needs. I didn't know how to approach them or interact with them. I wasn't mean but I didn't try to be nice. So instead of focusing on the children who don't make an effort with Jaycee, I try to focus on the ones who do. I am thankful that she has peers who want to engage with her. I admire these children. I see the gentle spirit they have inside of them. It is a gift from God.

Jaycee (girl in glasses in the center) praying at Bible school with her peers.

Convention Highlights

I was blessed to be able to attend the National Down Syndrome Congress convention last weekend in Indianapolis. Due to my local Down syndrome group providing my family a scholarship, I was able to attend this convention for the first time.

My husband and I attended the convention alone. I called it a vacation. He referred to it as something else...you can guess. Jason is a welder and not really in to learning about new research findings or how to teach ___ skill. But, we both really enjoyed ourselves and learned new information. He said he'd even go to another convention, so that was a good sign. As for the kids, they got to spend some quality time with grandma, who offered to watch the kids so we could attend the sessions in peace. Grandma got her on education on running a bi-pap machine and all things Jaycee.

The good things about the convention were:
-Hearing some inspiring stories that show how well some with Down syndrome are doing.
-You listen and learn from people who are well educated about Down syndrome.
-If you "stalk" a speaker after their lecture, you can ask them specific questions about your child. The speakers are usually good to parents and offer any suggestions they can know. My husband and I each got some personal advice on our daughter.
-You are surrounded by families dealing with issues like you. I hardly know anyone in my area with a child on a bi-pap but there were numerous there at the conference! It makes you feel less isolated.
-The exhibit hall is full of books, bikes, toys, and clothes that are for/about Down syndrome. I discovered a few products that I never knew existed.
-I came home feeling inspired to try some new techniques and with some more knowledge.

The bad parts of the convention were:
-People's phones or Ipads went off during the lectures. : (    I'm easily distracted!
-Hearing the success stories were inspiring but also left me a tiny bit sad for a moment. My daughter has so many health issues and educational difficulties that I have to admit that I was a little jealous at times. I wish my daughter didn't have so many struggles with her health or her speech.

Fireworks

Fireworks=screaming and crying   At least that's how it's been for the past several years for Jaycee. We'd load up to go to the local fireworks display, find a good spot in the parking lot, and wait for the show to begin. Prior to the city's main display, there are some individuals that shoot off fireworks at their homes nearby.

That's when it all goes south. In those initial booms and pops and lights in the sky, Jaycee starts to get anxious and upset. Every time we have attempted the fireworks, we end up leaving within the first five minutes of the show. We have even put her in the vehicle with the motor running to help drown out the noise, but it didn't help. She would cry and scream frantically until we headed down the road away from those scary noises. It has been the same story for years. Last year, we didn't even try to go. We stayed home and reminisced about how we use to be able to watch fireworks.

But this year, we gave it a shot again. We loaded up in the vehicle. On the way, I explained to both kids about fireworks hoping that this would give ample warning and assured them that it wasn't scary. Jaycee was excited to see some of her friends prior to the fireworks show. When the pre-show works started firing off, she got a little anxious. She wanted to leave her friends and go back to our truck, which was a sign that things were going bad. Once at the truck, she tried to get in it. But Jason, grandma, and I assured her that everything was fine and didn't let her hide in the truck. We made her sit on the bed of the truck and watch the fireworks show. She did not scream. She did not cry. I wouldn't say that she liked it, but she tolerated it. And we were so proud!!!

July 4th was a big day for us. Jaycee watched her first fireworks display ever without getting upset. She faced her fears! And my husband and I likewise watched fireworks for the first time in over 8 years!! We have been waiting for this day, and it was a big blessing for us! Thank God for progress!!

Why I Don't Say "Stubborn"

There are some words that just really bother me. Stubborn is one of them. I often hear parents, teachers, doctors, therapists, and really anyone refer to a child with special needs as "stubborn." I personally cringe when I hear this word, especially when it's a person who has a lot of direct contact with the child.

My favorite source, Google, defines stubborn this way:

having or showing dogged determination not to change one's attitude or position on something, especially in spite of good arguments or reasons to do so; difficult to move, remove, or cure as in "removing the stubborn screws."

Does a child with special needs choose to disobey because they have a difference of opinion? Do children with special needs choose to not listen to good reasons to complete a task?

 

In the special needs world, it seems that people use stubborn to mean this: when a child with special needs refuses to do something that you want them to do.

 

This common special needs definition has an entirely different meaning than it's true definition. Kids are labeled as stubborn because they refuse to participate in therapy. A child is labeled stubborn because they refuse to pick their pencil up and begin writing. A child throws himself down because he doesn't want to leave the park and is called stubborn.

 

Is this a fair description for children with cognitive delays, poor language skills, and special educational needs?

 

I have always felt that calling a child stubborn is just an excuse for the adult to not do anything differently. Stubborn means that the problem is all on the child and not on the adult. Stubborn insinuates that the child has a behavioral issue that must be dealt with, sometimes harshly, in order to bring about the desired response. Calling a child with special needs "stubborn" sometimes leads to lazy adults. In that I mean, the adults keep approaching the same issue the same way with the idea that one day the child will submit to discipline or authority in time.

 

I'm not saying that there isn't a stubborn child with special needs out there. I'm just saying, I rarely label a behavior as stubborn. Instead, I describe the behavior and circumstances that I see (i.e. This child refuses to do writing activities...) and look for reasons for the behavior (...because they have large fine motor delays that make grasping a pencil hard). A few years ago, I learned the common phrase: All behavior is communication. I don't always see refusals and "stubbornness" as a behavioral issue, but I see it as the child trying to poorly communicate something he dislikes, feels, thinks, or doesn't understand.

 

Here are some instances of people calling Jaycee stubborn & my interpretation of the event:

-"Jaycee was stubborn and would not stack the blocks on command." Jaycee was not stubborn, but she was unable to follow 1 step directions and could not physically stack blocks at the time due to fine motor delays.

-"Jaycee is being really stubborn about taking her medications." Jaycee knows her normal medicines and realizes that there is a new medication. She doesn't understand what the new medicine is and is fearful that it will taste bad.

-"Jaycee is so stubborn. She refused to do her school work for an hour today." Jaycee hates certain subjects at school. She is not motivated to do them nor does she probably understand why she needs to do the work.

-"Jaycee wouldn't get up and move when I told her it was time to leave. She's stubborn!" Jaycee didn't want to leave. Jaycee has poor communication skills and has no way to say no or I don't want to. Her sitting and refusing to move is her way of protesting.

 

I'm not making excuses for bad behavior. But, I want people to look at stubborn behavior as something that signals a need for change. Does the child need more motivation? Does the child not understand? Is the work too hard or too easy? Does the child need a better way to communicate likes and dislikes? In other words, is there something the adult can do to help decrease these "stubborn" behaviors so you both get the desired result?

So, that's my thoughts on the word "stubborn." Please use this word with caution!