The Silence in My House

Whenever I am around my brother's family, I feel a little overwhelmed. He has seven children, yes 7 children. (No, they aren't weird but I guess they like kids.) The noise and activity level of 7 children is quite different than what I am use to experiencing. I am starting to be known for saying, "You kids be quiet," whenever we get together because my ears and eyes aren't use to all the sounds and sights they give off.

My house is much different. My 4 year old son is inquisitive and talkative at times. He's starting to get to where I can hold a short conversation with him and get some decent responses back to questions.

Then there's Jaycee. Jaycee primarily signs, gestures, or uses her communication device to communicate with me. She says "mama" when she's mad or if I tickle her. Sometimes, she'll sign mom instead of saying it. Bye-bye, papa, bubba, uh, yeah, and high are words she can say well. Dada makes an appearance once in awhile, usually with prompting. 90% or more of her communication isn't verbal speech. It's other stuff. I can't have conversations with her very often. Whenever I ask her a question that isn't related to food or television, I am usually ignored. Sometimes, she will surprise me with an appropriate response. But, I can't talk to her like I can my son. I can't ask her how school went. I have to ask questions in the context of knowing what signs or words she knows on her device.

Car rides with Jaycee....silent. I can't have her sign in the vehicle. She can't speak. There's only dancing and music in the car but not many words. When Jaycee & I are alone in the house, which happens when she's home sick, the house is mostly silent. She will tell me what she wants to watch on television or she'll mention a friend at school she misses. But, she doesn't initiate a conversation with me. There is no long back and forth exchange. We cuddle, watch movies together, and take walks to spend time together instead. But there isn't much talking. There are times when I have been in the house with Jaycee all day that I just want my husband to get home so I can talk to someone who responds. And boy if he doesn't listen to what I'm saying, he gets it!

Silence breads more silence. I expected that as she got older, she would try to vocalize more or start to say more words. Occasionally, something new pops out, but there's been no spurt in expressive vocabulary. I have noticed that the longer she stays silent, the less I ask her to say words. I have become discouraged by the silence of our days.

As a speech language pathologist, I often make recommendations to families of toddlers with delays in language. If I were giving myself advice and being brutally honest, here is what I would tell myself in order to break the silence:
1. Create an atmosphere that encourages any kind of vocalization.
Over the years, Jaycee has gotten frustrated with the fact that she can't speak due to apraxia of speech. I have gotten frustrated too! She quit trying to talk, and I, for the most part, quit asking. But she won't try if I don't expect some sort of vocalization. I need to start trying again. Try any word, any sound, any simple thing until she repeats something.
2. Find new ways to practice words she's already saying in order to build her confidence.
We are well settled into a routine of what questions I ask or what choices I give her. We do this out of routine, which is good. But breaking the routine and adding in some new ways to practice words would help her.
3. Keep asking her questions.
I get discouraged when that she doesn't respond to me. It makes me want to give up. If 9 times out of 10 someone ignored you or talked about Barney instead, you'd probably give up too. But, when she does answer a question, it's magical! I should let that 1 time inspire me instead of letting those 9 times defeat me.

Let's see if I can follow my own advice without getting frustrated and discouraged....

Zippy's Club

When you have a child with special needs, your child will be made fun of at some point in their life. It is a fact. It will happen. It has happened to my child. I have heard and seen some children make mean comments, play chase with Jaycee (the game was to run from Jaycee), push her away, and change seats because Jaycee sat down by them. Jaycee hardly recognizes this mean behavior, but I do. It cuts to the core of a mom to see her child treated badly just because she is different. How are you suppose to handle these situations to bring about change?

Enter....Zippy's Club by Candida Sullivan. Zippy is the feature of this book. Zippy is a zebra with no stripes. As you can imagine, being a zebra with no stripes hasn't gone unnoticed by the other animals in Grassy Plains. Zippy has an idea to change the world to form a club in order to stop bullying with kindness. He has a great turn out for his initial club meeting. However, the other animals would rather play and eat cake instead of doing the things that need to be done in order to bring about change. Zippy gets discouraged. He later finds himself face to face with bullies. They push their bullying too far. The bullies and the other animals learn just how serious bullying can be. In the end, they all pledge become part of Zippy's Club and take the opportunity to change lives.

The book contains rules for Zippy's Club, the club pledge, and a section on "How to Talk to Kids about Bullying" by Dr. Rick Metrick. These are great talking points for parents, teachers, counselors, and ministers.

The author, Candida, was born with Amniotic Band Syndrome. She writes with a passion and understanding, as someone who has overcame her own obstacles and feelings of being different. Zippy's Club is the latest in the successful and endorsed Zippy series. Candida's message promotes kindness and lifting others up instead of knocking them down. She knows she was born for a special purposed life and wants to share the hope and love of God to others.

This book addresses the hard choice you have to make when responding to a bully. Do you do the Biblical thing of showing love and kindness? Or do you respond with anger and more evil? How do you inspire children with special needs that may look different to feel confident about themselves when others are trying to bring them down? This book will spark conversations between children and adults and students and teachers.

If you have a child who is being bullied or looks differently, then you would benefit from this book. The book is a great conversation starter between adults and children and will hopefully change perspectives.

Here's some great news for you!!!!

How would you like to win a free copy of Zippy's Club??
One of you wonderful readers will have a chance to win. Just email your name & "Zippy's Club" in the subject line to: evanasandy@gmail.com   Entries will be accepted until Sat. July 19, 2014.  On July 20th, a winner will be selected at random. If you are the winner, I will email you to ask for your mailing address in order for you to receive your free, autographed book. This book will make a great addition to your personal library, school, daycare, or Sunday School class! You must live in the United States of America or Canada to be eligible to enter.

Good luck! Enter today & let your friends know about this contest as well!

Cheating

The first time I cheated I wasn't sure what I was doing. My daughter was about 2 years old or so, and I was unhappy in my relationship with her doctor (#1). I toyed around with the thought of changing doctors.

Doctor #1 was really great. She was a woman and a mother, which made her compassionate and understanding. She spent time talking to me and listening to me. Even if I was overreacting about something, she had a nice way of telling me to calm down. Because Jaycee was a "sick" baby, if I called to get an appointment for an illness, they would work her in no matter what. The staff was nice. But there were some problems.

Doctor #1 was a 40 minute drive from my house. It wasn't uncommon for us to go to the doctor two or more times a month when she was a baby. The distance was difficult when I needed to get her seen right away but also had to schedule around my work and other appointments. The distance was the major problem with Doctor #1, especially as time went on.

Doctor #1 went to electronic medical records after I started going there. Due to the nature of the records and the things required for every visit, I grew weary of the same questions I was asked every time. What medications is she on? What kind of formula? How many wet diapers does she have a day? Is she doing this or that? Yes, these were important. But, if I'm there three weeks in a row, not much is going to change. I didn't like having to list off the medicines and doses, etc. every time. I got tired of going over and over all of this stuff. I also felt that instead of just going over my concerns and speaking to me, the nurse spent most of her time with her back to me firing questions off so she could type them in. All of this sent me looking for some one new.

So I decided to try a local nurse practitioner ("Doctor 2") that was only 6 miles from my house. I took Jaycee a few times to see if Dr. #2 was comfortable with Jaycee's extensive health history and to determine if I liked the care she would receive from him. I was in limbo between Dr. #1 and Dr. #2, not sure who to commit to. After a few trips to Dr. #2, he asked me if she was now in his care. I told him if he felt comfortable then I would get her records sent to him and continue on. From then on, Jaycee and I have been with Dr. #2.

The problem was that I never told Dr. #1. A couple of months went by and Dr. #1's office called to schedule an appointment. It was during that awkward phone call that I "broke up" with Dr. #1. I told her receptionist how much I appreciated her and liked her but the distance was getting hard. It was lame. It wasn't very mature, but our relationship was finally over. No more cheating.

Six months ago, I found myself cheating again. Out of frustration of Jaycee being admitted in the hospital for 6 months in a row, I took my friend's advice and sought out a second opinion on her lungs. Jaycee had been seeing Pulmonary doctor #1 for about 6 years. She is very friendly and knowledgeable. I had no beef with her either but I couldn't stop one thought. What if there was someone else who knew something that could make her healthier?

I decided to cheat again. I didn't tell Pulmonary #1 what I was doing. I really didn't expect anything new to change as a result of seeing Pulmonary #2,so I thought I would tell Pulm #1 if some how this new doctor found or did something different. So, off I went a few months ago seeing new doctors, running tests, making adjustments to her medicines all without telling Pulmonary #1. It turned out that Pulmonary #2 had new ideas and new information for me.

A couple of weeks ago, I told Pulmonary #1 in person what I had done, what changes I made, and that I was seeing someone new (Pulmonary #2). She was fine with it because she admitted that Jaycee was so complex that this may bring about new information. In short, she was fine with bringing another person into our relationship. But, I needed to pick one to call the shots and be the lead.

The past few weeks I have been weighing the pros and cons on these two pulmonologists. #1 is 2 hours away. #2 is 3.5 hours away. #2 is too far away to go when she's sick, so #1 will be taking care of her in the hospital. Both are nice, understanding, and listen to my concerns. #2 works with a group of people that are highly interested in sleep apnea. #2 treats her more aggressively with medications. #1 is more conservative in her treatment.

In the end, a decision must be made. I know what I need to do, but I'm reluctant to do it. Change is hard. Hopefully all the cheating will be worth it in the end. And I hope I'll never have the need to cheat again.

Signs Your Kid is Sick Often

Here are signs that your child may be sick often:

-You know what your child's vital signs are. You can rattle off their normal heart rate and oxygen saturation levels without hesitation.
-You notice every sneeze, cough, change in eating, or sleep disturbance that may indicate that there is a problem.
-There are containers in your vehicle in case of vomiting.
-There are other things like towels, spare clothes, or wipes in your car for illnesses.
-When traveling, things like thermometers and Tylenol are a must.
-You know the maximum dosage of medicines to give in case of emergencies.
-You can pack a bag for a hospital admission in less than 5 minutes.
-On call doctors or emergency room staff recognize you or remember you.
-You never plan anything too far ahead because you don't know if your child will be well enough to go. If you do plan something, there is a plan B for every trip or plan.
-Every time your child is sick, you hope and pray it passes quickly and they'll come out OK.