The Christmas Crescendo

I know it is already February, and almost Valentines Day, for that matter, but this has been on my mind...

When I was a little girl, Christmas was always a very special time of year. My parents were missionaries. We didn't have a lot of money, but Dad and Mom always made Christmas day one of excitement and anticipation. My brother and I each received one gift from our every parents every year, usually handmade. On an early Christmas morning in 1976, I remember my brother and me running into the living room to open our stockings, as was our tradition. After we opened our stockings, which usually contained an orange and a couple McDonald's gift certificates, we would wait impatiently for Dad and Mom to get up, make breakfast, and gather around the tree to read the Christmas story from the Bible. Although the Christmas story reading was the same every year, save the passages from which they came, Dad always tried to point out something different. After we heard about baby Jesus in the manger, Dad would pray and we would open our presents, savouring each moment. Then as the morning hours turned into the afternoon, we snacked on home made Christmas candy and drinks while watching Christmas specials on our used black and white television. Christmas for me was more than the presents under the tree. Yes, it was about the Baby in the manger. It was, also, about the very special day with my family together. Our traditions are what make these memories so fond.

Now, Christmas looks different. Being married, Neil and I have been able to incorporate new traditions, bringing in some of the old and trying to come up with some new. In his family, gifts were opened on Christmas eve, so we decided to keep that tradition. Along with that, we chose to maintain the Scripture reading of the Christmas story from my family. Having two children with autism has challenged us to improvise even these simple traditions. It has not been until just this year that they have been interested in opening gifts. The pretty boxes under the tree really have no significance to them. The last number of years, Neil and I ended up opening their gifts for them, and still not much interest was shown in their new toys. This year seemed as though things, perhaps, would be a little different, and I guess I let my hopes rise with expectations that our traditions might catch on this year.

Usually, we CAN leave gifts under the tree unwrapped, and they remain unnoticed. This year, Noah spotted an unwrapped box under the tree. It was just a brown box that had been shipped from extended family to arrive in time for Christmas day. One afternoon, he came to me and said, "Open present?" I was so excited! I said, "Sure! As he opened the brown corrogated cardboard box in which the gift was shipped, he became very excited to see a clear plastic pouch with the DVD Santa Buddies in it. I thought this was the reason he was so excited to open the box. Along with the DVD, there were five stuffed puppies - the "Buddies". THIS was what he wanted to get his hands on! He wanted the dog named "Budderball"! Whatever the draw was, I was excited that he wanted to open a present. This is when my hopes began to rise. "At least Noah would be excited about opening presents this year", I thought to myself.

When Neil's mom came for Thanksgiving, we all went Christmas shopping for the boys. We watched Noah and Judah walk through the store and pick out the toys that would most draw their attention. I was pretty confident that this year's Christmas gift exchange within our family would be an exciting, new adventure for us! The boys would want to open each present with anticipation and be playing all day long for days with their new gifts. My excitement and anticipation of carrying on the traditional activities of the season soon came to an abrupt halt and, truth be told, left me feeling pretty numb with disappointment.

About a year ago, Neil and I decided that we would allow the boys to open one gift each day over the week of Christmas. That way, it wouldn't be so overwhelming for Noah and Judah. This year, since they had so many more gifts from extended family, we were going to take our time and open each gift over a two week period to allow them to really enjoy each gift for a couple days before opening a new one. We were hoping that opening a new present every other night would pique their curiosity about the other gifts, wrapped in pretty paper, under the tree.

The first night went pretty well. It took a little motivation on our part to draw the boys' attention to their gifts that were waiting to be discovered. After a few minutes both Noah and Judah were tearing shiny Christmas paper away from their unknown treasures. Noah opened a box containing an interactive WALL.E toy. Judah found his treasure of a "Stinky Pete" garbage truck that talked and responded to touch. They were both very fond of their new novelties. I asked Noah, "Would you like to open another present?" "No, no, no", came the answer. I laughed. "There is always tomorrow", I thought.

Christmas eve came. I was ready for the bringing in the traditions! We sat down to read out of the Bible. Noah and I had been using nativity figures to act out the story of Jesus. He liked to talk to Jesus: "Hello, baby Jesus" and "Good-bye, baby Jesus". Well, it's a beginning, I thought. At least he is talking to Jesus. After reading the story of baby Jesus being born, Neil and I brought out the presents and let the boys choose one to unwrap. No one was interested. It was like pulling teeth to get them to open their gifts. Of course, we didn't make them open all of them. We only tried to open a couple. Noah kept saying, "No, no, no..." and Judah wouldn't even respond, except for getting a little grumpy that we were making him open his Christmas present!

After what I thought would be our Christmas crescendo came to a crash, Neil and I sat on the couch downstairs processing out loud what had just happened and where we went wrong. What could we have done better? It began to dawn on us that we made Christmas day a little stressful by breaking their routines. The one day that is supposed to be different and more special from all the other days of the year really needed to be as routine as possible, just like any other day, for our sons. This is where my "Christmas crescendo" really bottomed out. How does one make a day special when the demand is for "same-o, same-o"? Routine is what brings comfort to Noah and Judah. Sameness is what they enjoy. Forcing a change in that predictability is far too distressing.

Disappointed expectations, a redirection of dreams, and maybe a little perspective change is in order here. Hmmm....you know what? That is OK. While other boys girls scramble to open unfound treasure under the lights of the Christmas tree, Noah is taking baby Jesus for a walk. In other homes newly purchased toys are scattered abroad from built up anticipation and excitement. In our home, it is peaceful and quiet with the sound of Noah and Judah watching and listening to the "Joy to the World" Praise Baby DVD for the millionth time. Once in a while, I can even hear Noah singing the words to We Three Kings or Oh Come All Ye Faithful.

Every year, I think I learn a little bit more about what the Chrismas crescendo really is. First, it really is about the Baby that was born in someone's "barn" and laid in a feeding trough. If it wasn't for the power of God wrapped, not in pretty paper, but in human flesh, there would be no "crescendo" at all. In fact, there wouldn't be even a song. If my sons can grasp only that concept around the holiday season, that would be the best gift I could receive. In that way, I am kinda' glad they don't fully appreciate the idea of opening gifts. There is nothing to distract them from learning the reason why we celebrate this time of year. Second, being together as a family is so important to us. I am not taking anything away from visiting relatives, but it is so nice to relax and celebrate and enjoy what God has given to our family with the flexibility of being able to just "go with flow". Third, our "crescendo" may not be loud enthusiasm, lots of bright colours, various versions of Jingle Bells and Jingle Bell Rock coming from every room, tons of Christmas decorations in every corner, or a vast array of food overflowing the table to its four corners. I am learning that our Christmas will be filled with great anticipation of Daddy being home, a decent sized tree in one of the rooms with lots of blinking lights, soft music of Away in the Manger in the background, just enough decorations to bring a little extra festive feeling to our home, and a few favourite goodies sitting out on the coffee table for all to share.

I know it is unfashionably belated to say this now, or maybe it is a little too early to say it for next year, but I am saying it anyway. Whether your Christmas seasons are full of Jingle Bells and holly (which I love!) or it is a season of cherishing quiet family moments together or somewhere in between...Merry Christmas! In fact, why say it's too late or too early? Let the crescendo continue everyday! Why make just one day special? If it's really all about Jesus Christ, we need to raise the bar for the other days of the year, too. So, "Merry Christmas" from our family to you and your family everyday for this rest of this year!!!

And since it is almost Valentine's Day, happy Valentine's Day, too!!! ;-)

Well, That Wasn't so Bad

I am writing to report that Judah has been on his seizure medication for a month and he has not had any seizures! Yeeehhh!

Also, we have made an inquiry on a little boy in NV waiting to be adopted. He looks to definitely be on the spectrum. Once again, we will see what doors God opens for us! Pretty exciting!!!!

The Adoption Process...

We have our home study completed and have been sending it out to multiple agencies. We completed our home study through a private agent instead of an agency. Our agent does not do the child search, only the home study iteself. So now we are seeking out multiple agencies who will take our home study and help us find the right child for our family. This is a long, slow process, but I know that the right child will be presented to us at the right time. We will wait and see what God will do!

Ready...Set...Here We Go!

I received a call last night from our pediatric neurologist, Dr. M. Reardon, here in Austin. He called around seven. He sounded like he had had a long day and was tired, yet he still took time to call and talk to me. Fifteen minutes we were on the phone. He prescribed Trileptal for Judah. I will pick it up at the pharmacy today. Dr Reardon was so patient, so understanding, and so reassuring. I truly did not expect a call last night. I thought perhaps not until Monday would I hear from Dell Children's Neurology. I was impressed, but more than impressed, I was deeply grateful.

So, I will make a run to CVS and pick up this RX for Judah. I can't help but feeling a little nervous. I know that seizures are not uncommon. In fact, SO many people have seizures for multiple reasons, especially children with autism. Not all children with autism have seizures, but many do. It certainly isn't rare. There are so many people in the world that take seizure medication and have taken it for a number of years. Why am I so nervous about this? I guess there is one difference: Judah is my son.

Here we go...

A New Development?

For the last couple of months, Judah has been having "episodes" of behavior that are out of character for him. Neil and I have been watching and keeping track of this behavior, trying to figure out what triggers his 45 minute, unconsolable "tantrums". The first time we noticed it was when Neil and I went out on September 17th for a late celebration of our anniversary. Our sweet babysitter, Lindsey, was here and we were ready to leave when Judah began crying and acting nervous, almost fearful. We all racked our brains trying to figure out what was going on and what triggered his becoming so upset. He is typically able to be calmed fairly quickly. Not that night. It took a good 40 minutes to finally get him to a point where we could leave the house. Lindsey was great! She took such good care of both our boys. Before Neil and I reached our destination, I received a text from Lindsey that he was laughing and acting as though nothing had happened. For me, it was a "note-to-self" moment.

A couple weeks later, I went upstairs. Judah was in his jammies standing on the arm of the sofa, watching a movie. When I looked at him, I asked him if he was sleeping with his eyes open. He was standing perfectly still, not moving a muscle, not batting an eyelash (Judah is rarely still). I proceeded to walk over to the Little Tykes desk where our two new family members resided in their cages. Our two new gerbils, Little Joe an G-Force, were chewing up the aspen shavings that covered the bottom of their cages. Judah had been quiet, unmoving up to this point. Then all of a sudden, he began screaming and running around the room as though something had frightened him. He ran over to me after I called his name and opened my arms. He let me hug him for a split second and then resisted with all the strength he had, trying to get away. He continued running around the room, beating on the floor and the wall, screaming the whole time. Neil came upstairs, and all I could do was watch Judah. I felt helpless. Neil couldn't calm him either. We brought him downstairs, wrapped him in a blanket, gave him some milk, and held him tightly. He continued to fight and resist as though something had scared him. I took him back upstairs, turned off the lights and turned on some soft music. Still holding him tightly, wrapped in a blanket with his sippy cup of milk, he slowly began to calm down. It took a good forty-five minutes before he was completely calm again. After he was calmed, he acted as though nothing had happened.

This type of behavior occurred multiple times in the weeks that followed: couple times at school, on the bus, and a few more times at home. We took him to pediatric neurology for an EEG, where they futiley tried to induce a seizure. Although seizures were not confirmed, our pediatrician seems convinced that what Judah is experiencing is, indeed, a form of epileptic seizures. Our pediatric neurologist could not definitively say that Judah is having seizures, but from what we described and reported from the school, seizures were certainly not out of the question. We were given a number of options with which to proceed. We could bring Judah in for a 24 hour EEG; we could start him on seizure medication, and see if his "behavior" stops; or we could watch him and see if his episodes continue, increase, or decrease. At the time, we opted to watch him and continue tracking his behavior. He is still averaging these strange behaviors about once a week.

A couple nights ago, we heard Judah crying upstairs just after we had put him to bed. Neil ran back upstairs to check on him. He seemed scared and mad, constantly wringing his hands. He was tired, but couldn't stop crying. He was unable to vocalize any feeling or emotion other than crying. It was as though he could not use any verbalizations that he knew. His gestures and signs became more pronounced and succinct. He could only cry. Gradually, he calmed down again and was able to use the jargon and verbal approximations that he typically uses. Once again, all was well in his world, and he acted as though nothing had happened.

After talking to my friend, who also has experienced seizures, Neil and I have decided to put Judah on seizure medication. Worse case scenario: the medication doesn't work, and his "episodes" continue. We then take him off the medication. On the other hand, maybe the medication will work, and he will not experience these long, grueling moments as often, if at all. We will, also, know for certain that he is experiencing seizures. Yes, I will call neurology tomorrow and request seizure medication for Judah.

Laughing at our "Calamities"

Now that summer vacation is over and school is back in session, I actually have a few minutes to do a little thinking (and writing)! I have been reflecting on how much Noah and Judah have changed over this past year, and I've had a few chuckles over some of the "calamities" created by these two, although at the time, humor was no where to be found.

Reminiscing back to the two weeks before last Christmas, I recall two little boys who enjoyed their water play in our three bathrooms when no one was the wiser to their goings on.  Neil and I woke up one morning to the bath tub in the master bedroom filling slowly with what looked like sewer water.  It was brown and, well, I'll spare you the details.  One of us sat down to use the toilet and once it was flushed, the water in the tub rose as an overflowing creek bed does when it rains.  Needless to say, we didn't try that twice.  Neil checked the other upstairs bathroom, and it, too, had a tub full of...the same stuff.  The toilet in that one, also, caused the the waters to rise in the tub.  I went downstairs to use the commode in the powder room next to the kitchen.  I noticed upon entrance, that the water from upstairs was leaking down through the vent in the powder room.  Drip, drip, drip.  Water was dropping right onto the toilet.  I opened the lid with hopes to somewhat contain the mess by having the water drip into the toilet instead of on and around the floor.  I called for Neil.  Neil hurried downstairs.  As we stood in the kitchen watching the water drip down from upstairs, one more thing caught my eye.  There were water marks on the wall between the bathroom and the linen closet.  I touched the wall.  It was wet and soft.  Not good.

Our first few phone calls were made to our landlord.  Then we called the home owner's insurance.  It wasn't long before we had someone standing in our bathroom ready to evaluate and assess our situation.  Our landlord also made his way to our home.  All the toilets were plugged.  The tubs were backing up because the water from the toilets had no place to go, so sewage was coming up through the drains in the bath tubs. Meanwhile, water had soaked the carpeted floor between the powder room and the kitchen.  The gentleman who had been called by the insurance company, pulled up one of the toilets upstairs and as well as the one downstairs.  He used the "snake" to see how far he would be able to go down the hole before he hit some blockage.  Nothing had been revealed downstairs.  Good news.  However, upstairs was another matter. As he pushed the "snake" tool down the hole, there was definitely something blocking, plugging the toilet.  He decided to put a camera down there so we could see what it was.  As I stood there watching the screen, I recongnized some of toys that were in our play room the day before.  Bummer.  "This is going to cost us big time", I thought. 

$1200 was the deductible for all the plumbing to be corrected and the water damage in the wall and the floor downstairs.  "Merry Christmas", I thought to myself. Could be worse, though, I suppose.  Two weeks later, after we arrived back from our vacation, Neil went to Home Depot and bought three sets of door knobs that locked with keys. This way, the boys will not be able to get into the bathroom to cause any more damage or messes, for that matter.  This could also prove to be a challenge for potty training in the upcoming months. Neil exchanged the regular door knobs for the the new ones with keys. Now we keep each bathroom door locked at all times, and when people come to visit our house, they have to either ask to use the restroom or take a key with them!

A Day in our Lives

I was recently sharing with a friend various situations that occur in a typical day here in the Siedschlag family. We had a good laugh over some of the crazy actions and interactions that take place in our home, although I am not always laughing at the time! Taking my dear friend's suggestion, I am going to share them with you so you, too, can laugh with us at some of our "calamities"!

Let me take you on a brief tour of our home first. You won't know all the rooms, specifically, but you will have a better feel for how our home functions and what one may find when entering our house. When you walk in, there is a small entry way with the formal dining room immediately to your left, only we utilize this room as an office and a "quiet get-away" room. On the desk, you will see stacks of papers waiting to be filed next to our computer. This room always looks the cleanest! The living room and the kitchen, just on the other side of the wall, is where much of the action throughout the day takes place. Upstairs there is a decent sized game room where we keep most of the toys and a small library of books. Our bedroom is utilized for more than just snoozing. It is also a room for "trampolining", wrestling with Dad, watching movies on a very small TV, and unwinding at the end of the day. We also have a pretty large back yard surrounded by "neighbor fences" which allow everyone to see what everyone else is doing in their yards! Actually, I believe this is meant to encourage community.

I do shampoo and vaccuum the carpets once a week. I vaccuum the upholstry once a month. I mop the kitchen floor once a week and clean the whole kitchen using Mr Clean with Febreeze disinfectant once a day. I wipe down the fridge, microwave, and toaster oven to show off a little shine, even if only for ten minutes! I wipe the table with a wet rag and then go over it again with Orange Glo wood polish. If I am feeling energetic, I will even use a little Orange Glo on the coffee table and book shelves. Once in a blue moon, not because it rarely needs it, but because within less than an hour one would never know I did anything, I will take some Windex to the patio door. It's amazing how much more light comes in when it's clean! ;-) Actually, I have a daily cleaning schedule so as not to become too overwhelmed:
-Mondays, I clean the floors downstairs.
-Tuesdays, I attempt to get around ten loads of laundry done.
- Wednesdays, the upstairs floors get done along with cleaning the bathrooms.
-I originally set aside Thursdays for "small" projects like filing. Usually, Thursday becomes the day I finish whatever I haven't been able to get done thus far.
-Friday evenings we host a game night, so I made Fridays "mopping days".

One would think with this routine, our house must look close to emaculate most of the time. Not so. There are days you would walk in to our home and never know that a a dish rag or broom even exists in our household. Toys from upstairs that have been dragged downstairs, cups of water on the coffee table and TV stand, containers of Goldfish crackers on the floor, and a few more piles of "stuff" that need to be "filed", or maybe tossed are all common visuals that one would experience while taking a small tour of our home. Uncooked spaghetti noodles on the floor, rolled oats on the carpet, water on the kitchen floor, fruit smeared across the kitchen table, mud tracked in from outside, a dirty pull-up missing from someone's bottom, chocolate chip cookie smeared on places other than the face, dumped spices in the sink, lotion and soap pumped out into the toilet and upset plants are, also, possibilities of what one would have found in the recent past. We have since been able to remedy some of these challenges. I will share some of these stories and what we did to "fix" the problem with you. I truly hope that the following stories will encourage you if you have a child with autism or at the very least make you laugh!

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