Sunday, December 28, 2008
The Mystery Refrigerator
My next effort was to convince him that he must not keep doing this little trick. I tried to explain that if the refrigerator gets warm, Mom will have to throw away all of the chicken and he would surely not be able to snack. His auntie explained that he better not do that again or he would not have any chicken to eat. To which he replied an emphatic "WHAT?".
Time will tell if he understands the importance of this instruction but at least the mystery is solved once and for all.
My own "mamote"
Wednesday, December 24, 2008
Christmas Eve
Christmas Eve is a great time with the family. For James, family is everything. This year after meeting a real live Santa Claus at the Down Syndrome of the Ozarks Party James is convinced that Santa Claus is coming. He asked tonight during our meal "Ata Claus, Where!" We asked him what about Santa Claus? His answer was quick and to the point, "toys". Well one thing is certain. When he wakes up tomorrow there will be toys around the tree.
GO TO STORE!
James came home Tuesday very much in the Christmas spirit. When I got home he immediately asked me to take him to the store. James what do you want to buy at the store? "Whales and green chips and Sprite" I told him that maybe after the news I could take him. I really thought he would forget all about it but he did not. He came in dressed and ready to go and so off we went to the dollar store. We got our basket and after about a 20 minute walk down the toy aisle where all of the interesting toys got a good demonstration we went on to buy what he came for. In the mean time, I got some great ideas for a few more gifts for him. He loved the little plastic basketball game, the funny teeth, every ball in the store, the rifles that made a shooting noise and the recorder.
We found the aisle looking for "green" pringles his prevailing favorite chip. I told him he could get two of each item. We found the "Whales" (for those who don't know what Whales are, they are cheese crackers in the shape of whales). He knelt down and looked up at me and said, "one for me... " and put it in the basket. Then he got another box and said "one for...me again". And then with a hopeful look in his eyes, perhaps hoping to capitalize on the Christmas spirit in the air, he put a third box of whales in the basket and said, "three for...me". I had to play the scrooge and told him only two boxes. then I tried to get him to buy some off brand of Sprite. He would have none of that and ran up to the front of the stores to the cooler and pulled out Sprite. Two bottles of Sprite. Before I knew it he had gone up to the counter and was checking out. I ran after him and thanks to some money sent from Grandpa and Grandma in the Philippines he got to buy everything in his basket. He was one happy boy and is loving Christmas.
Saturday, November 22, 2008
NO SHOT!
Wednesday I got James up and we started the "get ready for school routine". He was not particularly cooperative and did not want to go to school. This is not the first time he has been less than enthusiastic about getting up and going to school. Then he pulls out his secret weapon, "I sick". While this tactic is often effective in getting his Mom's sympathy and consequent investigation as to the true state of his health, I am not easily convinced. I am more inclined to believe that he is working me and so my response is more an effort to convince him how well he is. We are going to get dressed and we are going to get on that bus. There are things to do, schedules to keep, obligations to fulfill. A sick boy at home changes everything. I am more of the mindset that goes like this, "throw up and prove it if you are sick". And even then, I am not totally convinced. With my firm and salesman like response, I got him dressed and we had him on the bus and he was off.
Within the hour I got a call from his teacher at school. James is sick. He threw up all over his shirt and he is now lying down in the nurse's office. Can you please come and get him. So much for my parental discernment. I kind of felt like a heal for my insensitivity. I did go to school and there he was sick and wearing a borrowed "Missouri Lottery" t-shirt. He was quite enthusiastic about the new purple shirt and handed me the plastic bag containing the soiled shirt we had put on him an hour before. I walked out with my little guy and with a repentant and more sensitive attitude.
James was hot with fever and he was throwing up anything we gave him. Cindy continued her phone consultations with the doctor's office. They suggested that we go to the only other way of giving medicine and called in an order for a suppository. Cindy called me to come home because when James learned about this grossest of ideas; he was not going to allow it. Thankfully we all got through it and his fever did go down. But after 3 days it was time to take him to the doctor's office.
The doctor's office is full of great people from the receptionists to the nurses and nurse practitioner we saw. The swab to check for strep was a bit traumatic for our already very sick guy. He did ok and in a few minutes it came back positive. After a quick discussion about how to get the antibiotic's going we decided that since he could not swallow and keep things down the best approach was a shot.
When the nurse came in the room with the silver tray in hand and the shot clearly displayed James knew what was coming. He was not about to give in to this previously experienced pain in the name of healing. He used all of his opposition behaviors from crying, pulling away, and sitting on the floor. When he realized he was outnumbered he did stand up and the three of us held him down while the shot was administered. All the stickers in the office could not erase the pain and trauma but they did help.
Today, some 24 hours after the shot he is much better. I sat him down to drink his vitamins shake while I ate breakfast. We bowed our heads to pray. In my prayer I asked God to heal James and help him feel better. I also thanked God for the doctors and even the shot. Out of the corner of my half closed eyes I watched him. When I thanked God for the shot, he quickly turned his head toward me in amazement. Why was Dad thanking God for a shot? He cried out, "No shot. No shot ever again." I tried my best to recite the benefits of fast acting inject able antibiotics but he would not be convinced.
Thankfully, James is much better. After three days of not wanting to eat or drink he is clearly improving. He was asking for chicken and rice and even requested that I go buy some "whales".
Friday, November 7, 2008
Limousine
James has long been fascinated with limousines. I think he has seen them on television and things they are pretty cool. When we see them in traffic they always get his attention and start his imagination thinking about riding in one. When DJ and Sarah Kelley got married, one of the decorations at the reception was a match box car limousine. DJ knowing about James' fascination with them gave him the toy to take home. It is one he loves to play with.
The other day he told me that he was going to go on a date in a limousine. While we do our best to downplay any kind of dating ideas, they are a part of life and have not been ignored by our little guy. When I asked who he was going on a date with he answered "my girlfriends". Girlfriends, I responded. How many girlfriends do you have? He responded quite confidently, "twinny (twenty)". So that's why you need a limousine. I guess as long as he has twenty girlfriends that sounds more like a group of friends than a date. Friends are good. The limousine? Who knows, maybe someday.
Monday, September 22, 2008
Our Daily Game of Charades - Talking
The key word in this video is GRADUATION. It is a typical thing for us to do a kind of charades as we talk with James. We made this video tonight and when I asked James about school he was glad to report that he was doing well - grade 17 (not sure what that is about other than he wants to be 17 years old very bad). He also is glad to say that he has an A+. At least he shoots for the top. He also is all about something else that I did not pick up on right away. If you watch carefully, he puts on the graduation cap and then buttons the graduation robe. It took me a while, but I did finally get it. (I don't always get it,) When James is tired and less than enthusiastic about getting up in the morning and getting ready for school reminding him if the goal - GRADUATION - is a great motivator. He has watched his two older sisters graduate from high school and Tiffany from college. He knows all about the excitement of that moment and the GRADUATION PARTY that follows. He is all about celebrations and especially parties.
This is a great reminder to us all to just keep our eye on the goal. There will come a graduation day and a party if we keep going. James gets this. We can all benefit from simple reminders like this. Whatever our challenge, keeping the vision and goal in mind can help us overcome the daily struggles with greater energy. Thanks James. You often remind me of the important things.
Correction
I just want to give a shout out to all of my other children who have complained that Dad has only put up a blog for one of his kids. Hey kids, I have not favorites. I love you all with everything in me. I am not so sure you want me blogging about everything going on in your lives. Furthermore, I just would not have the time to chronicle all of the fun stories and drama we share around the table. James does not ask to be able to shape my posts to his liking like as you all would. So just a word of clarification. You all are great but you if you want a personal blog, you will need to write you own. Love you, Dad.
Saturday, September 20, 2008
James Self Portrait
James loves his Mom's new Macbook. It is amazing how much he can do with that computer. Most of what he knows he has taught himself when he steals away with this wonderful machine to experiment. He loves the photo booth program. The built in computer allows him to look at himself, pose and then snap the photo. We are constantly taking pictures of this little guy of ours. Amazingly one of our favorite pictures of all times was one he took of himself. It says, life is good and I am a happy boy.
Tuesday, September 16, 2008
Monday, September 1, 2008
Late Afternoon Labor Day Shopping
James was less than enthusiastic about a quick run to the mall. He does not like the idea of walking around the mall very much. But then after the sad resignation that his protests were not going to cancel the plan, he saw a reason to shop - THE ESCALATOR. In a flash he was off to ride the escalator. As he walked away I firmly said, "James, come back here." He took a quick glance behind to see me. He clearly had decided that whatever the consequences for running were going to be, they were worth the thrill of the ride he was about to enjoy. I quickly picked up the pace catch up to him. I did not want him to fall so I told him to turn around and pay attention to where he was going. After a nice ride up and down, before we knew it, he was off again. This time Mom went to get him. If James is not looking for an escalator he is looking for a place to sit down. Our mall is great because there are some great places to just sit and wait for Mom and sister. A little shopping at the mall with James goes a long way for both James and me.
Monday, August 25, 2008
Summer Ends
The summer has ended and has been one James enjoyed very much. He is a boy that is never bored. He has enjoyed being the co-host of the Eddie or Cindy Lyons cooking show. He has also been full of inventions like the one in the picture. His favorite event of the summer was of course his birthday, July 1. He is now 12 and already planning his 13th birthday party. His birthday list has gotten a bit more sophisticated - he really wanted a flat screen tv and a hattop (laptop computer). This summer Cindy joined the Mac world with a white Macbook. Shortly after the computer arrived I walked into my room to find a very startled James sitting on my bed with laptop on - his lap. Looking quite guilty and wondering if he was in trouble he said a "Hi Dad". I asked, "James what are you doing?" He answered, "my homework". I took a look and was surprised to see that he had on his own found the Word icon, and had opened a new document and was in fact typing away. His love for a laptop only increases over time. He found Disney.com and the games he can play. His favorite feature at the moment is the movie making capabilities of a Macbook. He loves making movies. One of my favorite was both very cute and at the same time incriminating. He holds up the opened jar of peanutbutter with spoon in hand. (He had snuck into the kitchen and gotten the peanut butter without permission). In his feature film he grabs a spoon and begins to spoon peanutbutter with a peanut butter garbled commentary. It was great. School began today and he seemed comforted by a familiar routine in a familiar class, saying the pledge of allegiance.
I have recently seen some things about the decision of some families to terminate the life of their baby because it was determined that it had Down Syndrome. The idea is that we do these babies a favor because they would live difficult lives with not much hope or quality. I wish they could spend a day with James. He loves life, is always playing, pretending, creating and enjoying a family he adores. He continues to be the a sort of glue that centers our family. He loves us in a way that makes his life more meaningful than we can describe.
And now another school year. More is yet to come.
Tuesday, June 24, 2008
"Na hase me" "Na hale it"
The other day, I had the pepperocini peppers out and James was showing interest in this new food group. I asked him if he wanted one and he said “me try”. I warned him that they are little bit hot but he still wanted to try one. Knowing that he may not make it through a mouthful of peppers, I parked him beside the sink just in case. He took a big bit and all was well for a second or two and then he grabbed his mouth and said. Oh hot, hot. He discovered that he did not like these peppers. The next day I asked, kind of jokingly, if he wanted a pepper and he said with a bit of disgust, “I hale it.” Which interpreted is, “I hate it”. He picked up this “hate” word from school. As much as we try to discouraged its use and encourage a more gracious alternative, like “I don’t like it”, he continues to use the “hate” word. It has kind of taken on its own meaning for James.
The other night the family went out to eat. It was one of those end of the week, let’s get re-connected as a family and share the week’s stories moment. Needless to say, the stories lasted a lot longer than the meal. After a while James grew impatient and said, “Let’s go.” We told him not just yet. To this he replied, “Na hase me.” No James we don’t hate you but you are going to need to wait for us all to be ready to go. Pretty much any time James does not get his way, he has pulled out the phrase, “Na hase me.” It has become a family joke. James asks his siblings for chicken and they tell him, it is not time to eat to which he replies – “Na hase me.” James go clean up your room and if he does not want to do that he says, “Na hase me.” So pretty much if anyone does not give him what he wants, when he wants, he feels this emotion he describes as “Na hase me.” No James, we love you but you can’t always have what you like. James we love you, but when you do wrong things, you have to have a time out and sit in the thinking chair.” “Na hase me” and “Na hale it” have become part of James’ limited vocabulary. Somehow, we all have found use for this new “James speak” even while we still hope to make him a more gracious boy.
Monday, June 16, 2008
Me Drive...Show Me
Today while I was checking out my newly planted patches of grass, James ran over to the car hopped in. He crawled through the car and strapped himself into the drivers seat. James then motioned to me and asked me to get in. I did go sit with him, primarily because his mother insisted that he should not be in the car alone. I assured her that she was being a bit over-protective and that he could not really do anything to hurt the car or himself. After my husband-like resistance did nothing to change her mind, I went over to sit in the passenger's seat beside him. To my surprise, he had the keys in hand and had already put the house key in the ignition. (Why is Cindy always right and I am such a knot head?) Thankfully, he had the keys for the other car. He kept saying, "Dad, I drive. Show me." "Buy ice cream." Well, at first I told him that he was too young to drive. I then realized that his age would not change his prospects for driving instruction. I am not sure how to handle that just yet. James wants to do everything his brothers and sisters do including driving. Anyway his prompting at least got him some Andy's "banilla" ice cream. He was pretty please with the ice cream. Then on the way home we stopped by the newly opened Walmart and bought him some new "spiderman tennis shoes with lights". Life is good and we are going to have to start hiding the car keys.
Thursday, May 8, 2008
James on TV...
Hillcrest High School TV produced a piece on James' Big Day. Robert, James brother, teamed up with Julie Wooten to put this together.
Dad...order pisa!
The other night at around 10 pm, Coco received a call from the Hillenburg house telling her that James had called Mark from my phone. Sure enough we found him with my phone in hand. Apologies for the late night disturbance were made and graciously accepted. I then looked at my phone only to discover that he had called the bank, Boston Baptist College, a pastor friend in Lebanon Missouri and a few others.
Back to the "pisa" request. A while after taking the phone away and interrupting his attempt to order he came into the kitchen this time with phone book in hand. He had thumbed through the yellow pages and had found the pizzas. At first I was amazed at his ability to read only to be reminded that he just found the pictures of pizzas which made more sense. After all of his effort I wore down and ordered a pizza. He was thrilled. Come to think of it, I probably did not help curtail our phone fascination phase. I probably just made it worse. But so what. Cute is cute and the bright smile on his face when the pizza came was worth it.
Tuesday, May 6, 2008
“Breef Mom”…
The other day Cindy was having one of those overloaded Mom stress moments. While James did not know what was going on, he could see that Mom was having a tough time. He walked into our bedroom, looked his Mom in the eye and then with hand motions said, “Mom, breef (breath) in, breef out.” At this point Cindy and I both erupted into laughter and amazingly enough, the stress was gone. James may not understand all the details, but he does get what matters. Thanks, James for keeping us breathing.
You threw what in the toilet?
One afternoon, I walked into the house after work to find the kind of informal courtroom setting that most parents have learned can be essential to child rearing. Cindy, was sitting in the living room with James seated on the ottoman in front of her. The feeling in the room was serious and the tone of her voice was authoritative. “Tell me the truth” she was saying, as I walked in. “I tell the truf”, James replied. At this point I was brought in as a second questioner. Cindy explained what I did not know. The suspicion was that James who had locked himself into the bathroom with
What are you doing, James…. I’m smokin!
It was the 72nd Anniversary Sunday at High Street. We were entertaining our guest speaker and the former pastor, Bill Rogers. We left the church and loaded up the car to meet Pastor and Mrs. Rogers, Dave (their son) and his wife Kendra for lunch at one of our local restaurants. It was one of those car talk moments where James was given the parent talk that goes like, “James you better act nice at the restaurant. Be respectful, eat properly, look into people’s eyes when you say thank you and please…and please, please be a good boy.” Well things went pretty well during the meal. As most parents come to realize, adult lunches sitting in the same spot for way longer than it takes to eat is not an easy exercise for kids. At the end of our time, James picked up a straw and walked from one end of the table past our guests, to the other end of the table with his straw pointed at his brother Robert. I figured that a spit wad war was on the verge of breaking out. Hoping to head this off at the pass, I asked James. “James, what are you doing with the straw?” To which he replied as he elegantly pulled the straw away from his lips, “I smokin.” Nope, we had never covered smoking in any of our pre lunch lecture material. Thankfully, Pastor and Mrs. Rogers erupted in laughter having raised their own PK’s and understood clearly our kid moment with James.
Monday, April 7, 2008
Leg out the window…
It was Sunday night, time for our small group Bible study at home. While we were all engaged in the video presentation something was happening in the back of the house we did not know about.
PS. Today, I have done a little Dad magic to make it so he can't open his window. Hope he doesn't figure out what I did. I won't say it is impossible to open now. He is one smart little guy.
Sunday, March 30, 2008
James solidifies his "rock star" status with newspaper photo
The excitement continues. Today at church someone came up and asked me if I had seen the picture of James in the newspaper. I had not so they went to look for one to show me. It was great. James was congratulated over and over today at church. Someone actually asked for an autograph. After the first autograph was given, James was on a roll. He began to give out unsolicited autographs to anyone he found. This afternoon he went down to the Wilson's to watch himself on TV. They were gracious enough to record him during his great moment. So all is well. The baseball appearance followed by the newspaper and then to watch himself on TV, James is loving life.
Saturday, March 29, 2008
Pujols and James
We all kind of wondered how he would do. He was in his "play to the crowd" mood. When he was asked to walk out to meet Albert Pujols, I asked James if he needed me to go or was he ok to go by himself. He turned to me and said, "go sit down". And with that he walked off with the Cardinals officials to meet Albert Pujols. We could see him talking up a storm and pointing to his family all standing up against the fence. Albert waved to us a couple of times and then James was asked to go and "fire away". He ran all the way to the pitchers mound and with great confidence wound up and threw the ball. The ball did not quite make it to home plate, but Mr. Pujols ran and scooped it up off the grass and went to congratulate James. He then signed the ball and handed it to James.
As we walked up the stairs to find our seats he was greeted by many of the fans in their chairs. James was smiling ear to ear. He felt like a rock star for the moment.
I had offered to buy him a hot dog after he pitched just to keep him from lingering on the field. He was glad to stand in line and claim the snack. He was loving the snacks, the pop and the whole baseball experience. When the vendor came walking by offering cold beer, his hand went up, just as it did for peanuts, kettle corn, cotton candy and any other snack offered. Needless to say we contented ourselves with the peanuts and said no to the rest of the snack buffet.
Special thanks to Lynn Neidigh, President of the Down Syndrome Support Group of the Ozarks, who made it all happen. We also want to thank Becky Morgan, Down Syndrome Support Group board member, who accompanied us as the official representative of the support group.
Friday, March 28, 2008
Getting Ready for Albert Pujols
Well here is the big news. James was selected by the Down Syndrome Support Group of Springfield to represent them by throwing out the first pitch to Albert Pujols on Saturday, March 29. Needless to say, we are all very excited. We are also hoping that when the reality of that many people in the stands watching our guy sets in, he will enjoy the attention and not shy away from it all. He does love being cheered. We kind of practiced a family "cheer for James at the Cardinal's game". When Coco did not clap and cheer, he immediately broke from his bow to yell "Coco, clap". (Actually, James can't say the letter "L" and it sounds like "R" but, I can't write that word here.) It makes us laugh and we insisted that Coco join the cheer so we could move on. She did and the bow continued.
All is ready, the red Cardinal shirt with number 5 and Pujols on the back has been bought along with the blue shorts. We are going to be ready with a baseball, just in case an autograph is a possibility. Robert will be covering the event for Hillcrest TV. Troy agreed to bring a camera and shoot for us.
When James was born, he was the child we worried would have more challenges than opportunities. It is amazing to watch God pick him out and give him something this cool. God is good.
Albert Pujols openly confesses that he has accepted Jesus Christ as His Savior and that his family has a commitment to put God first. He also has used his experience with having a Down Syndrome child in the home to encourage and support other families like his. A special thanks to Mr. Pujols for his strong testimony and service to others.
So tomorrow is the big day at the ball field.
Friday, March 21, 2008
Wear "flops" and buy "melelelems".
This afternoon is such a beautiful day, we decided to just go somewhere. James wanted to wear his "flops" his word for flip flops (when I was a kid we called them something that my kids won't let me say anymore). He wants to go buy "melelelems" a pronunciation of one of America's favorite candies M&M's that involves more tongue twirling action than anyone ever thought of. You have to see it to fully appreciate it.
Never a dull moment. James is busy and for the most part a happy boy from dawn to late at night. His latest request is to be able to paint. He is quite the artist. My favorite picture is his "robot". Maybe some art lessons would be a good way to direct his creativity and energy.
Monday, March 17, 2008
I Go to my Church
Friday, March 14, 2008
"Silly Me, My Bad"
Who can blame James. He is all about doing everything everyone else around him does. That includes getting mail.
Monday, March 10, 2008
Where's James?
Well today James was at home with his sister Coco. She was working with a friend on a history day project. She had made sure James was in his room playing so they could concentrate on their project. All of a sudden the door bell rang so she went to see who it was. Much to her amazement it was James standing outside at the front door. She was shocked and she asked James how he got there. He proceeded to explain that he climbed out the window in his bedroom, walked down the street to our friends the Wilson's and also across the street to Aunt Karen's house. It just so happened no one was at the Wilson's and Aunt Karen was not at home either. Thankfully, James did not know anyone else on our block and so he had come home. Coco said that after hearing about his excursion it dawned on her that for about 20 minutes James had been particularly quiet in his room.
Our James surveillance efforts today have reached a new level. And so the question, "Where's James?" just became even more important.
Friday, March 7, 2008
There is snow at my school
Finally after several years Springfield got a good snow. Around six inches of the great white, fluffy, sledding quality snow. It was beautiful. Along with the snow came every child's dream. Snow and a snow day from school. So for a day, the kids played in the snow. Because it is March in the Ozarks we saw the snow come one day and melt the next.
The day after the snow fell and before it had melted away, school was back in session. I took James to school that morning. He sits in the backseat and can't really see much out the window on that daily ride to Reed Middle School. We pulled up to his school. I got out of the car to open his door and walk him into the building. He got out and looked around and with great enthusiasm and surprise he yells, "There snow at my school." His school had never sported the outside white carpet until this day. For James even though his house had snow for which he had rejoiced, this was a whole new and unexpected reason to be enthusiastic about school.
I was reminded once again that sometime we are too smart to rejoice over simple things. Thanks, James for the reminder.