April 23 is a special date for us. Back in 2006 on this date, we dedicated Jaycee to God at our church. If you aren't familiar with a baby dedication, I'll try to explain it. Basically, it's something the parents decide to do with their young child. We brought Jaycee up in front of the church and proclaimed we would raise her up in the Christian faith. The pastor said a few words. A prayer was said over Jaycee's life and our commitment to raise her up as a Christian. And boom--in just a matter of 10 minutes, we dedicated our first born child to God.
I remember at the time, I felt impressed to do this baby dedication sooner than later. Most people do this some time before their child's first birthday but it all depends on the person. I really wanted to do the dedication before Jaycee had her first heart surgery (at age 3 months) because I wanted those things prayed into her life beforehand.
Looking at the calendar this week, I noticed "Jaycee Dedicated" on the April 23rd slot. For some reason this year, I have thought about that dedication and what it meant. I promised to raise her up in the faith. I wonder if I have done well with that over the past 7 years and what else I can be doing to teach her about God.
She understands the concepts of prayer, church, and God. She loves praise and worship at church and in the car. (We only listen to Christian music...and occasionally the Wiggles.) She likes taking a $1 bill into church and putting it in the offering. She knows if she prays before her meals using her talker that she can get her food quicker. She knows "amen" signals the end of the prayer. She's heard me read the Bible to her all throughout her life. I started doing that when she was born. But, is that all enough?
I can think of many mistakes I have made. I have modeled panic and fear when she's gotten sick, instead of faith and prayer. I have not spoken scripture over her at times because I have been too tired or too lazy. I have read the Bible to her but does she know what the Bible is and why I do it? Some of this is hard to know because of the communication barrier.
I've spent some time the last few days thinking about our every day lives and how God is reflected (or not reflected) in them. I want to live out that dedication I made. I want her to grow up knowing and loving the God we believe in.
Thursday, April 25, 2013
Thursday, April 18, 2013
The Dentist with my Special Purposed Child
I have looked at this date for weeks wishing it was over. 8:30 Thurs-Kids Dentist
As soon as we walked into the dentist office this morning, Jaycee sat on the floor and bent herself over. She was in her "I'm upset" position. She hasn't been to the dentist in six months, yet the experience last time must have left a lasting impression.
The kids are called back. Elijah cries because he can't play with the trains in the waiting room. Jaycee doesn't want to go back because she knows what's coming. And why did I think I could do this alone? Oh yes, I remember. Because I am a God empowered mother!
Elijah & Jaycee's examination rooms are next door to each other. Elijah refuses to sit down. Jaycee takes a seat but she's not happy. I hop back and forth between the two rooms. Elijah goes first. I hold him on my lap and the dentist looks at his teeth. He gets the all clear. He's just worried about getting back to those trains.
I walk into Jaycee's room, she's reclined in the seat. She holds my hands and babbles while the dentist looks around. "bababa dadad," Jaycee says.
"I know, Jaycee. You are doing great!" I tell her. I can tell she's upset but she's not screaming or crying. We hold hands. She pulls her hands away and signs "all done."
"Not yet," I tell her.
Jaycee allows them to briefly polish her teeth. She is not happy but this may be the first time she doesn't have tears. Hey, I want to cry at the dentist too but I don't.
These trips are getting better. She's growing up. Things are getting easier for her (& me). Next time, I won't dread the date for the dentist so much. Thank you Jesus!
As soon as we walked into the dentist office this morning, Jaycee sat on the floor and bent herself over. She was in her "I'm upset" position. She hasn't been to the dentist in six months, yet the experience last time must have left a lasting impression.
The kids are called back. Elijah cries because he can't play with the trains in the waiting room. Jaycee doesn't want to go back because she knows what's coming. And why did I think I could do this alone? Oh yes, I remember. Because I am a God empowered mother!
Elijah & Jaycee's examination rooms are next door to each other. Elijah refuses to sit down. Jaycee takes a seat but she's not happy. I hop back and forth between the two rooms. Elijah goes first. I hold him on my lap and the dentist looks at his teeth. He gets the all clear. He's just worried about getting back to those trains.
I walk into Jaycee's room, she's reclined in the seat. She holds my hands and babbles while the dentist looks around. "bababa dadad," Jaycee says.
"I know, Jaycee. You are doing great!" I tell her. I can tell she's upset but she's not screaming or crying. We hold hands. She pulls her hands away and signs "all done."
"Not yet," I tell her.
Jaycee allows them to briefly polish her teeth. She is not happy but this may be the first time she doesn't have tears. Hey, I want to cry at the dentist too but I don't.
These trips are getting better. She's growing up. Things are getting easier for her (& me). Next time, I won't dread the date for the dentist so much. Thank you Jesus!
Thursday, April 11, 2013
Touch Points
Before Jaycee learned to walk, she started doing this thing with people's hands. She loves to rub her fingers across someone's fingernails. I don't know why she does it or why it started. But she has done it for a long time.
It's one of those things I can count on her doing if we are holding hands for more than a minute. She likes it when I rub my fingernails lightly on her arm too.
When your child cannot have a conversation with you, touch becomes an important. Hugs, kisses, holding hands, or rubbing fingernails becomes vital "communication" that transcends words. I don't get to hear from her what happened at school or who she played with. She doesn't comment when I tell her about things from my day or plans for the evening. The words are not there. This relationship is not built around talking. Touch becomes important. A cuddle on the couch becomes our way to say I love you or I'm glad you are here.
It's one of those things I can count on her doing if we are holding hands for more than a minute. She likes it when I rub my fingernails lightly on her arm too.
When your child cannot have a conversation with you, touch becomes an important. Hugs, kisses, holding hands, or rubbing fingernails becomes vital "communication" that transcends words. I don't get to hear from her what happened at school or who she played with. She doesn't comment when I tell her about things from my day or plans for the evening. The words are not there. This relationship is not built around talking. Touch becomes important. A cuddle on the couch becomes our way to say I love you or I'm glad you are here.
Thursday, April 4, 2013
Gymnastics Drop Out
In general, I am not a quitter. If I start something, I'll finish it no matter how much I dislike it. But, I must admit that in less than 2 months, I started Jaycee in gymnastics and then quit. I blogged about my apprehensions in January's entry "Jumping & Courage." The first class went really well. But every week after that did not go well. In March, I finally had enough.
Jaycee was in a class with 12-19 girls. She was the only one with special needs there. The staff was nice to her even though she halted the class numerous times each week. There were a few kids who tried to befriend Jaycee and help her stay in line. I enjoyed that part. When Jaycee participated, she actually attempted to do a cart wheel and back flips. It was so adorable to watch. She jumped her hardest on the trampoline and tried to imitate the girls who flopped on their bottoms and bellies. The problems arose when it wasn't her turn. She didn't like to wait. She ran from one spot to the next. Sometimes, she climbed onto a trampoline that no adult was supervising, which was not allowed. Sometimes, she just ran. The worst was when she ran smack dab into the low bar on the uneven bars. It didn't stop her, she just kept running. Waiting for her turn to tumble or do the trampoline was too much. She couldn't stay in line, she just had to go.
Maybe you are reading this and thinking I'm being too hard on her or that I gave up too soon. I think that if I was watching someone else's kid do this, I would think it would be understandable behavior. But, when it's your kid who is often disrupting class and not listening, it's different. It stressed me out every week because I didn't know when/if she'd run off and possibly hurt herself. So at age 7, my daughter dropped out of her first attempt at sports.
On the bright side, I did find a woman who does private swimming lessons for children with special needs. Jaycee has had two sessions so far and they have been wonderful! She loves to swim so this was the perfect match. She has individual attention and someone who can talk to her on her level. The only bad thing is that just about every day she tries to put her swimming suit on to go to her lesson. Too bad it's just once a week.
So, the moral of this story is.....If something doesn't seem to be working out with your child, don't feel guilty about quitting because you may find something better!
Jaycee was in a class with 12-19 girls. She was the only one with special needs there. The staff was nice to her even though she halted the class numerous times each week. There were a few kids who tried to befriend Jaycee and help her stay in line. I enjoyed that part. When Jaycee participated, she actually attempted to do a cart wheel and back flips. It was so adorable to watch. She jumped her hardest on the trampoline and tried to imitate the girls who flopped on their bottoms and bellies. The problems arose when it wasn't her turn. She didn't like to wait. She ran from one spot to the next. Sometimes, she climbed onto a trampoline that no adult was supervising, which was not allowed. Sometimes, she just ran. The worst was when she ran smack dab into the low bar on the uneven bars. It didn't stop her, she just kept running. Waiting for her turn to tumble or do the trampoline was too much. She couldn't stay in line, she just had to go.
Maybe you are reading this and thinking I'm being too hard on her or that I gave up too soon. I think that if I was watching someone else's kid do this, I would think it would be understandable behavior. But, when it's your kid who is often disrupting class and not listening, it's different. It stressed me out every week because I didn't know when/if she'd run off and possibly hurt herself. So at age 7, my daughter dropped out of her first attempt at sports.
On the bright side, I did find a woman who does private swimming lessons for children with special needs. Jaycee has had two sessions so far and they have been wonderful! She loves to swim so this was the perfect match. She has individual attention and someone who can talk to her on her level. The only bad thing is that just about every day she tries to put her swimming suit on to go to her lesson. Too bad it's just once a week.
So, the moral of this story is.....If something doesn't seem to be working out with your child, don't feel guilty about quitting because you may find something better!
Thursday, March 28, 2013
Sleeping Beauty & her Bi-pap
Since 2009, Jaycee's obstructive sleep apnea has been treated with a c-pap or a bi-pap machine. People with Down syndrome are more at risk for sleep apnea due to their smaller airways and low muscle tone. Usually with children, removing tonsils and adenoids fixes the problem. Jaycee did have this procedure but her apnea persisted. I'm not sure how many young children with Down syndrome use bi-pap machines to treat sleep apnea. I personally do not know of any. Jaycee started using hers at age 3.
For the last few years, our nights have looked pretty similar. First, her daddy tucks her into bed. She signs "dad" if I try to take her to bed. They do a whole routine now featuring her Olivia the pig dolls. Then, I wait on her to fall asleep. When she's good and asleep, I attempt to put her bi-pap mask on. The mask actually fits over her entire face-eyes and everything. We searched for years for this mask and was so happy to have found it. When we first started using these machines, she would hit, slap, or swat at me in her sleep when I tried to put the mask on. She would scream or cry. It may have taken a couple of hours each night for me to actually get the mask on her. Over the years, she has gotten use to it. Most nights, she lifts her head up to assist in the mask application. Thank goodness it is much easier now!
I always check on her before I go to bed. If she's pulled the mask off in her sleep, I put it back on again.
Here she is asleep with it on. Notice how she is laying. She is laying kind of hunched over with her legs sort of under her. Weird sleeping positions are associated with sleep apnea because they are trying to get good air in. I've also just heard that kids with Down syndrome sleep in strange positions because their low muscle tone gives them more flexibility. I don't think I could sleep like that if I tried!
One important thing we have learned is that the placement of the machine is important. Because the machine has a water chamber to humidify it's air, the placement is critical. If it gets knocked over and the water spills, that would be very bad for the machine. Here is where we keep her machine:
It just so happens my mother-in-law picked out the perfect bed for Jaycee without her even knowing it. She got this bed pre-sleep apnea but it's worked out great. The bed has drawers underneath it. We put her machine the drawer and she can flop around all she wants without turning the machine over. I forgot to tell my parents about this during Jaycee's last sleep over at their house. When they checked on her, her machine was upside down. Fortunately, the water did not escape and ruin the machine. This is something we have to think about when we are away from home.
Jaycee's tolerance to her bi-pap has greatly improved over the years. I always have hope that her yearly sleep study will show improvement and will say that she no longer needs her machine. However, that moment hasn't came yet. I still have hope. It would be such a huge thing for her if she ever got to the point that she didn't need her bi-pap. Maybe one day....A girl can dream!
For the last few years, our nights have looked pretty similar. First, her daddy tucks her into bed. She signs "dad" if I try to take her to bed. They do a whole routine now featuring her Olivia the pig dolls. Then, I wait on her to fall asleep. When she's good and asleep, I attempt to put her bi-pap mask on. The mask actually fits over her entire face-eyes and everything. We searched for years for this mask and was so happy to have found it. When we first started using these machines, she would hit, slap, or swat at me in her sleep when I tried to put the mask on. She would scream or cry. It may have taken a couple of hours each night for me to actually get the mask on her. Over the years, she has gotten use to it. Most nights, she lifts her head up to assist in the mask application. Thank goodness it is much easier now!
I always check on her before I go to bed. If she's pulled the mask off in her sleep, I put it back on again.
Here she is asleep with it on. Notice how she is laying. She is laying kind of hunched over with her legs sort of under her. Weird sleeping positions are associated with sleep apnea because they are trying to get good air in. I've also just heard that kids with Down syndrome sleep in strange positions because their low muscle tone gives them more flexibility. I don't think I could sleep like that if I tried!
One important thing we have learned is that the placement of the machine is important. Because the machine has a water chamber to humidify it's air, the placement is critical. If it gets knocked over and the water spills, that would be very bad for the machine. Here is where we keep her machine:
Jaycee's tolerance to her bi-pap has greatly improved over the years. I always have hope that her yearly sleep study will show improvement and will say that she no longer needs her machine. However, that moment hasn't came yet. I still have hope. It would be such a huge thing for her if she ever got to the point that she didn't need her bi-pap. Maybe one day....A girl can dream!
Thursday, March 21, 2013
Celebrating Jaycee
Happy World Down Syndrome Day!!!5 things Jaycee loves: 1. movies 2. people 3. pizza 4. going for rides 5. music (especially worship at church)
5 things Jaycee hates: 1. Her bi-pap 2. When a doctor checks her ears 3. When her grandparents leave 4. When she doesn't get seconds at meals 5. Having her nails trimmed
5 recent achievements: 1. She's learned to spell her first name. 2. She's learned over 25 sight words. 3. She will make squiggle marks as if she's writing her name. 4. She can give herself medicine in a syringe. 5. After a meal, she can put her dishes in the dishwasher.
Thursday, March 14, 2013
WDSD Coming Up
Next week on March 21st people around the world will be recognizing World Down Syndrome Day. The date 3-21 was chosen to represent Down syndrome because individuals with DS have 3 copies of chromosome 21. The gifts and abilities of these people should be recognized and honored on this day. In an age when majority of pregnant women end up aborting babies that are prenatally diagnosed, I feel its important to remind people that the lives of those with Down syndrome are valuable and fulfilling.
So what will you do to honor this day? Do you know someone with Down syndrome that you can recognize? Can you put a short message about it on face book or twitter? Can you spend time with that person on that day? Can you find a local Down syndrome organization to support financially? If you don't know of one, do a google search with a large city near you and Down syndrome. Whatever it is you choose to do, please try to spread the word that people with Down syndrome have lives worth living and celebrating.
So what will you do to honor this day? Do you know someone with Down syndrome that you can recognize? Can you put a short message about it on face book or twitter? Can you spend time with that person on that day? Can you find a local Down syndrome organization to support financially? If you don't know of one, do a google search with a large city near you and Down syndrome. Whatever it is you choose to do, please try to spread the word that people with Down syndrome have lives worth living and celebrating.
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