Naughty Blessings

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In a recent discussion with some of my “Autism” friends, the topic of impulsive actions by our unique children arose.  A friend of mine called them, “Naughty blessings!” These are the times when our children make decisions that are naughty or that are wrong, but we as observers look at them as a positive thing because they take complex planning or mischievous thought. We may even chuckle quietly while reprimanding the act.

This happens so often in our life with Christopher.  Many times they fuel us and give us hope because these are the times that show growth in his thought process, and many times a little bit of “normal” teen behavior in our not so normal life.  I love it when Christopher does something that makes him shine or shows us his great sense of humor. He will often surprise us with something that I know took a little planning on his part or something that comes out of him that is carried over from another time sometimes from the distant past. For any other child, these stories may not be remembered or significant. For another parent, it may be an annoyance or just another day. For us, though, it is a blessing to know that our child is learning, is aware, and remembers everything.  Just when we think that Christopher is oblivious to what is going on, he will show us a moment of true focus that says that he is present and aware of the situation. It is significant and it is a true blessing!

When we go to visit Maggie at her college, we always stay at a hotel that has a pool with a water slide.  It is not a huge Wisconsin Dells sort of place, but just a small pool that happens to have one water slide going into it.  When we first went there, a maintenance man-made the mistake of telling the kids where the emergency shut off switch was. Christopher was there and saw it, but we didn’t think anything of it.  Things were going fine until Christopher got to the top of the slide, took a step like he was going to slide down, but then leaped over and pushed the button.  The gushing water stopped abruptly and everything was suddenly silent in the pool room except for Christopher’s loud guffawing. We apologized to the maintenance man who turned the slide back on. We knew that he would try to do it again because he was still laughing uncontrollably, so we made either Maggie or Michael go up the stairs first and stand in front of the button.  Even with these preventative measures, it was Christopher’s mission to push that button.  He would go up and slide down a couple of times waiting for his sibling to start to think that he wasn’t going to try anymore, but the moment they had their guard down, he would lunge past them and push the button.  This has now been an ongoing joke for three years.  No matter how hard we try to guard that switch, he can usually get to it 2-3 times each visit.  It isn’t that big of a deal, really, and long ago the hotel staff showed me how to reset the slide, but Christopher still loves figuring out ways to push that switch no matter what we do to try to stop him.  Naughty blessings!

Recently, I was discouraged because Christopher was not pooping regularly after his surgery and even had a bowel movement during the night while in his bed. I was thinking that Christopher totally regressed since this has not happened for years. At the time, I didn’t realize that he was truly constipated due to his sedation medication.  I decided to bribe Christopher.  We went to the store and picked out some very fancy cupcakes with brightly colored frosting. I told him that if he went to the bathroom on the toilet, he could have a cupcake.  Surely, this would get him to poop on the toilet!  I had no luck the first couple of days despite the enticing bribe.  He really tried, but after sitting on the toilet for 45 minutes each evening there was nothing. Christopher knew the cupcakes were in the refrigerator.  He observed me putting them away.  Three days after we bought the cupcakes, Christopher couldn’t take it anymore.  I was in the kitchen emptying the dishwasher.  All of the sudden I heard the crinkling of plastic, and then caught a glimpse of him as he ran into the next room to hide in the corner.That rascal stuffed a whole cupcake in his mouth , liner and all! As I caught up to him, he spit out the paper liner along with a bunch of crumbs while laughing. Thankfully, we have a golden retriever who is always nearby when there is a spill or a trail of cupcake crumbs leading to wherever Christopher is stuffing his face! Christopher is a planner, he is sneaky, he is hilarious. Naughty blessings!

When Christopher was about 10, we stopped at Mammoth Cave on our way to Florida for vacation.  While there we chose a tour of the cave that we thought Christopher could handle.  There are a lot of steps, and it might have been tricky for a kid with low tone and poor balance, but he handled it well. Christopher walked between Eric and I so that if he decided to become impulsive, we would be close.  He was probably wondering why we were walking in a dark, damp place and sometimes when there is no meaning for him, things happen. He becomes naughty.  At the midpoint of the tour the guide had us all find a seat. There were rows and rows of chairs where the 50 or so people on the tour could sit while the tour guide talked.  This was the part of the tour we were most anxious about because we were worried that Christopher would get bored while the guide talked.  He actually surprised us, however, and was quiet for the short speech. Maybe it was because it was such a novel experience being in a cave. Anyway, the tour guide warned us that they were going to turn out the lights now so we could experience the silence and the darkness of the cave. He said we might hear critters, and it would be darker than dark. We both had a tight grip on Christopher as he sat in between us.  The lights were shut off, and we were shrouded in complete darkness!

Now, before we go on, I must explain to you that at home, whenever we would walk into a dark space, to be silly, we always made ghost sounds.  It is just something Eric and I did when the kids were young so that the children thought it was funny and not scary to be in the dark. As the kids grew older, they would all pitch in with their own ghost noises except for Christopher who would just grin and laugh.  Well, when the lights were turned off in the cave and the 50 or so people were listening for critters, they all heard a high-pitched, “Whoooo, whooo!” For the first time, Christopher was making ghost sounds! Then Christopher burst out laughing followed by a roar of laughter from the tour group. Christopher showed us that he could carry over a behavior from home, that he is a thinker, and once again, that he has a wonderful sense of humor. Naughty Blessings!

This last story may be a little more “naughty” than a naughty blessing but it is too funny not to share.  Christopher was about six or seven and at the time. He hated to shop but it was rare that we didn’t have to take him along. On this day we were clothes shopping – every little boy’s favorite!  We were taking him to Sam’s Club and usually took our time there, so we strapped Christopher into a special stroller / wheelchair that we have for him

Christopher was definitely agitated and did not want to be there, but we ignored his fussiness.  In the middle of the store were tables of clothing.  I was trying to find sizes, and Christopher was sitting there arching his back against the straps and whining. We were asking for trouble but chose to ignore it. Big mistake!  There were other shoppers around, but we always try to maneuver Christopher around them to keep them out of reach. Sometimes, however, this is impossible. On this particular afternoon, a woman moved too close to Christopher.  I heard some commotion and turned and saw a woman with her sweat pants pulled down around her ankles, by my son, exposing pretty much everything. She was wearing a thong.  I apologized profusely noticing that Eric was standing 25 feet away just laughing. In the end, Christopher got what he wanted – we left the store.  At the time, I did not see the humor in the whole incident but by the time we got home we were all laughing.  Christopher can strategize, he can communicate what he wants, and he can be so naughty.

Christopher is older now and hasn’t pulled anyone’s pants down recently, but we still have to watch him at Sam’s as we walk through the aisles.  Every once in a while he will see an emergency exit and run and push the bar.  He doesn’t do this to go out.  He likes to set the alarm off and watch all of the employees come running.  So if you are at Sam’s and you hear the alarm go off, look for a 6’4” young man standing there laughing uncontrollably while his parents try to calm the store staff.  Naughty blessings!

Of course we don’t want Christopher to be naughty and we work continuously on appropriate behavior with him.  In retrospect, however, to go through life without relieving the stress of these situations with humor and hidden blessings would make for an overwhelmingly difficult life.  So we laugh, often and hard, count our blessings, and life goes on.

Teeth

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For a typical young adult, having teeth removed is painful, frustrating, and inconvenient. For a young man with severe autism, it is a whole different experience. It all started when Christopher’s ear, nose and throat doctor determined he might be having discomfort in his ear because it was plugged with wax.  The doctor decided that Christopher was going to need to be anesthetized in order to clean out his ears because the risk of puncturing his eardrum was too great if he was awake. This is Christopher’s only hearing ear, so nobody wanted to risk damaging it.

Whenever we have one doctor that needs to put Christopher under, we go around to all of his other doctors who keep lists of things they wish they could do but can’t when Christopher is awake.  We had a dentist appointment a week later, so we told the dentist that Christopher was going under for the ear cleaning thing.  The dentist had been watching Christopher’s wisdom teeth over time and was seeing that some twelve-year molars and the wisdom teeth were fighting for space and possibly causing pain.  The molars had never developed fully, so the dentist suggested we take them out too. Lastly, Christopher had a cavity that needed to be filled.

So, a couple of Saturday’s ago, Eric and I sat in the empty waiting room while three doctors did their thing in the operating room with Christopher.  We had many feelings.  First, we felt hopeful.  Christopher can’t tell us when he is in pain, but he had been holding his face with his finger in his ear for about 8 months.  We thought that it might be an autism thing that started when we changed his medication, but also worried that he might be having some kind of ear or tooth pain.  Doctors had been watching this for several months, but couldn’t tell if it was an ear problem, a tooth problem or something else.  In the end, though, his finger in his ear had impacted all of the wax and was definitely causing hearing loss. We thought that some deterioration of his behavior might be because of his lack of hearing, but this also gave us an excuse to deal with any jaw pain that might also be the problem.  This led to feelings of guilt.  What if he had been having a terrible toothache for eight months and we didn’t do anything about it?  We also felt guilty because of what we knew he would have to endure for his recovery.  We tried to tell him what would happen, but are not sure he understood.

For a typical teenager, these would all be out-patient procedures. Himg_0065e would go home the same day with instructions to keep gauze in until the bleeding subsided, eat soft foods, and refrain from drinking from a straw. For him, it was completely different. Christopher was in the ICU so that he could be completely sedated.  He was so sedated that he had to be put on a ventilator. When we first saw him, all hooked up with what seemed to be a zillion wires and tubes, in wrist restraints, a machine breathing for him, and bloody gauze hanging out of his mouth, it was pretty shocking. It was only seven teeth after all! Both Eric and I had some tears, and then we both got a little angry with autism and God.  While hugging me, Eric asked, ”What kind of God would put him through this?” At that moment, I didn’t know what to say.

The next three days were a bumpy road.  For some reason, Christopher’s body reacts differently to sedatives.  Every so often, he would kind of wake up and would try to choke up his breathing tube.  It was awful to watch.  We just hoped he wouldn’t remember any of it.  It is also apparent that Christopher is Houdini even when sedated.  In the middle of the night, with his wrists restrained, he somehow woke up and pretzeled his head down to where his hand was restrained and pulled his breathing tube out.  I was staying with him that night but missed the whole thing because I was asleep on the couch next to him. Luckily, a nurse immediately ran in followed by a whole herd of concerned doctors and nurses. Thankfully, Christopher was all right with only some irritation of his trachea and no permanent damage. At that moment, however, he had a wicked sore throat, was confused and angry, and wanted all the IV and catheter tubes off. Again, in spite of his wrist restraints, he was doing everything he could to disconnect himself from everything.  Before we could give him water or do anything to make him feel better, we had to wait for results of tests to ensure that everything was all right with his trachea and esophagus.  Eric and I each sat on an arm and a leg for four hours holding him down so that no more wires or tubes could be dislodged.  Remember, our “little” guy is 6 feet 4 and 200 pounds of squirming and kicking.  It was a long morning!  Once tests were completed to confirm everything was all right, and he was allowed water and calmed down.

We brought him home on Monday night.  After a week of slowly feeding him lots of ice cream, in the form of Ensure milkshakes, and other soft foods, he was ready to go back to school.  He still holds his hand to his ear, but we think it is less often, and he doesn’t have the cringing look of pain that he used to have.  He has also been eating a whole lot more which is a good sign!

For that whole week, our family received many delicious meals from family and friends as well as many prayers for Christopher’s recovery. Now, we have a healthy son when so many things could have gone wrong. So, in the end, God did hear everyone’s prayers and we felt His Grace.  It will take some time to see what effect the surgery will have on Christopher’s behavior, OCD, and mood.  He is probably still having some pain where his teeth were. We will wait and hope.

Happy New Year!

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Happy 2017!  I think we all think about New Year’s resolutions. I know I do. Of course I share the same goals as most everyone.  I would like to be healthier, lose weight, get organized, etc. But I have a few others too:

  1. I recently saw a saying on a T-shirt that said, ”Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.”  Being a mother of a son with severe autism is all about storms. It is easy to get stuck and only see and feel the “nasty.” But there are those little moments of accomplishments, humor, and joy.  I need to appreciate and celebrate them making this the theme of 2017 rather than dwelling only on the negative. There are really so many blessings to be thankful for, and we need to focus on them. Christopher has touched so many lives which I believe is his purpose.  2017 needs to be about thanking God for Christopher and not wondering where God is during the thunder and lightning.
  2. Christopher is 19. There are only two and a half years until he is finished with school.  2017 needs to be a year of planning for Christopher’s future.  Daily life can be exhausting.  It is easy to just want to get through the day and ignore anything past that.  However, we have to plan for the day when he doesn’t get picked up by the bus. How are his days going to be occupied? As much as we love him, we cannot be with him 24/7. We cannot program every minute of his life. We need to find the best programs that fit Christopher and just figure things out.  As much as I need rest, this has to be a priority.
  3. We need to continue to work on Christopher’s life skills. Christopher’s future depends on how independent he is. We have to think about when we are no longer his main caretakers.  Do we want someone else to shower and dress him? Not really.  Unfortunately, we have heard that one-on-one care is difficult to find in programs. Christopher needs to function at a higher level so that he doesn’t always need help with everything.
  4. Finally, Eric and I need to take care of ourselves mentally and physically.  We need to be strong for Christopher and our other children. Just like on a plane in an emergency, we need to give ourselves oxygen before we give our children there’s.  We need to cherish our marriage,do things for ourselves, spend more quality time together, and enjoy life while losing weight, getting organized and all that “typical” stuff.

So, cheers to 2017! I hope everybody has a lot of sunshine in the coming year.  If it does decide to rain on your life, I hope that you can find the strength to dance through it. Happy New Year!

Medication Purgatory

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Sorry for the long absence! I haven’t been able to write my blog because Christopher has been a handful! I just haven’t had time. He hasn’t been himself lately and because of this, my very limited free time has been cut even shorter. This is all because of medication changes. He has been on several medications to help decrease his anxiety and OCD for about eight years, and doctors told us that although the drug is helping him, it is time to take him off in order to prevent liver damage and other irreversible side effects.

We often question whether or not the drugs do anything to help Christopher. It has been so long since he has been drug free that we were curious to see what he would be like when we reduced and finally eliminated the current prescription. I experience a feeling of guilt everyday as I put his pills on the spoonful of applesauce for him to swallow. It is really hard to give this much medication to a child, but at the same time, I remember why we resorted to giving him medication in the first place. His anxiety and OCD were out of control and made him miserable. We do not want Christopher to go back to that unhappy pre-medication state.

Basically, the thought of taking Christopher off of his medication is scary. Putting him on new medication is even scarier. Sometimes the side effects are worse than the condition the medications are supposed to treat. It takes a lot of trial and erroIMG_2837r and sometimes I think we fool ourselves into thinking it is working when it really isn’t. We search for any indication of the slightest improvement because we want something to work so badly. Christopher, unfortunately, is the one who has to go through all of this. He can’t tell us that it makes him feel awful or better. He could be dizzy, nauseous, disoriented, in pain and we don’t know. Often, we feel a sense of guilt that maybe we are doing too much – trying too many things, and should just leave things alone and let him be. In the end, we just want him to be happy, healthy, and to feel good!

It took us years to find the correct combination of medications that Christopher was on prior to this past winter when we were told it could not continue. Up until now, Christopher was really healthy, had found his place in a great school, and was thriving! There is no miracle drug, however, and there were bumps in the road where his behavior wasn’t perfect and periods where he even regressed. We realized long ago that there is not going to be a magic pill to solve all of Christopher’s problems. He will always have anxiety and OCD, but it would be nice if he could just function enough so he can learn, be calm, and be focused so that he can enjoy activities without behavioral issues. Anything beyond that would be a pure bonus.

So, since January, we have been slowing taking Christopher off the main drugs that was helping him function. At first, we didn’t really notice much of a difference, so we continued with the plan to reduce his dose. Then he became manic. Things that made him happy made him REALLY happy, things that were funny made him laugh out of control. Although it is fun when he is happy because he has the tendency to spread his joy, now he became too loud and too obnoxious and it was almost impossible for him to settle down.

At times, his anxiety symptoms increased and along with that, his OCD. He became much more impulsive. As a matter of fact, we are now at a point where he has so much anxiety that any small change affects him. It has not been a good time for him this spring as school has ended and summer activities have started. These changes are difficult when he is at his best.

The new combination of impulsiveness and anxiety keeps him always on the move. He bounces around the house because he just can’t be still. It also gives him superhero strength. He is the biggest person in our family, and is hard to control when he gets going. Recently, Christopher showed us just how strong he was when after dropping his sister off IMG_2738at the airport, he became anxious. He was not in a rage, but he also was not happy. He was sitting in the back seat of the van and somehow pushed the window out of its frame while we were going 70 miles per hour on the expressway. The window crashed and shattered on the road behind us. It was terrifying! Luckily nobody was hurt except for a few cuts that Christopher endured because he was obsessively trying to pick all of the remaining broken glass from the window frame. Once I was able to stop, I had a terrible time keeping Christopher away from the sharp glass even though his hands were dripping blood from several small cuts. I believe this would not have happened if we were not fiddling with his medications.

We have started a new drug along with some over the counter vitamins that have proven to help other individuals with Christopher’s issues. We have not really seen any improvement. This is another common problem. There is no set formula of medication that is proven to help ALL individuals with autism. Often a drug that is a miracle for one person does nothing for another with the same conditions. It is a guessing game. As I have said it before, every child with autism is like a snowflake. They are all different. Because of this, they all react differently to medication.

Drug trials are also a waiting game. All of these behavior modifying medicines take weeks or even months to start working. It’s not like taking an antibiotic in the morning and the fever breaking by nighttime. We wait to see any sign of improvement. This is what we are doing now – waiting and trying to be patient. We ask for others around him like his siblings, respite care workers and teachers to be patient too as his behavior continues to get in the way of his learning and overall function level. We started this in January, and it has now been six months of behavioral decline.

During this time, he has also picked up a few other behaviors that are worrying us. He now holds the side of his face and plugs his IMG_2862ear constantly. He cringes when he does this and looks uncomfortable. We don’t know if he is in pain, if all of the sudden noises bother him, if his ears are ringing, or if he just has as new reality after being taken off a high dose of a pretty strong drug and is just trying to cope. He has lost 25 pounds and has become less engaged and less focused. We have taken him to the dentist twice and the doctor once just to ensure that it isn’t something else.

This is when I question everything. What are we doing to him? I feel sorry for him, and I feel desperate for us. I get angry at the whole situation. Sometimes, I even get angry with him when he is driving me crazy. Then I remember that my innocent, sweet boy can’t help it. As I write this, he is sweetly sleeping next to my husband because he had an urine accident during the night. This is something he almost never does. Again I attribute it to the medication change. Watching him sleeping peacefully, I can say that yesterday’s chaos and turmoil have been forgiven and forgotten. Today is a new day. Another day of waiting and watching Christopher hopefully not struggle too much. We go to the doctor in a few days to report our observations. I am holding onto hope that more changes will be made to his medication, they will begin working, and we can get our old, happy, smiling Christopher back.

The Hotel

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Christopher went back to school last Monday after a week of Spring Break. Many families I know went out of town to either visit relatives, go on an adventure, or relax on a beach. Although I am happy for my friends when I see all their family pictures posted all over social media, I am also very envious. You see, going on vacation with autism in the family creates a very different experience than what typical families might expect. Even spending one night in a hotel can be a huge challenge.

Christopher loves being in hotels. Because he is so excited, the second we arrive at a hotel his energy level skyrockets! It doesn’t matter if it is four hours after his bedtime, and he has stayed up later than he has ever before. Even if five minutes earlier he was dosing off in the car, the second he sees us pulling into the parking lot of a hotel, he becomes hyper with excitement!

Christopher bursts through the hotel doors with his pool noodle in hand. He absolutely loves hotel pools! He wants to find the pool the second we walk into the hotel. Before we can even deal with our luggage, we have to look at the pool. Once he sees the pool, and we tell him when he will swim, we can go to our room. One thing we also have to do when we arrive is to always tell the hotel clerk that Christopher is autistic and should never be roaming the hotel alone. Seeing him alone means he has escaped. This happens frequently.

Walking through the long narrow hallways in the hotel can be challenging. Most of the time, Christopher will point to each room and loudly say, “That’s not ours!” Every once in a while, he decides to try to open every door to every room as we chase him down the hall. I have stayed in plenty hotels and not once has somebody ever tried to get into my room. I’m not sure how I would react if I heard somebody turning the doorknob and trying to push the door open. The interesting thing is that once Christopher knows which room is ours, he always knows where our room is. He does not know how to identify numbers as far as I know, but he has a great sense of direction and memory. I follow him if I get lost or forget our room number. If we have stayed in a hotel previously, sometimes he will lead us to the room we stayed in a year before!

At home, we have keypads on our exit doors so that Christopher cannot leave our house. We don’t have this luxury in hotels. Did I mention that the swimming pools are Christopher’s favorite thing about hotels? The pool is on his mind constantly! If he is not asleep, we take turns sitting in front of the door so he can’t leave to find the pool. Before we go to bed, we put furniture in front of the door so that we can hear Christopher trying to get out if he wakes up in the night. If Christopher does happen to leave the room, he runs. If we aren’t quick, he can get on the elevator or go into an occupied room where the door is open. He has done both.

Because Christopher tends to run, either Eric or I must sleep with him so that we know where he is even if we are asleep. Correction… Eric sleeps with him. Christopher loves to snuggle while he sleeps, and he likes to be intertwined like a soft pretzel. I can’t sleep like this, but Eric can so he usually has to share a bed cuddling with our 6 foot 5 inch “boy”. Christopher is used to his bed in his room. Going to sleep in a strange place and a different bed is difficult for him. Certainly being in a room with four or five family members adds to his anxiety. Because of this, often only one of us stays in the room with him while the rest of us wait in the lobby for him to fall asleep. Once he is asleep, the rest of the family can quietly return so he doesn’t wake up.

In the morning, Christopher usually wakes up as soon as it is light, or he hears people in the hallway. Again, he is full of energy! He wants to eat the hotel breakfast! I don’t know why this is so exciting for him. We have a Belgium waffle maker at home, and he isn’t excited when we make them for him there. Anyway, when the sun comes up, he is ready to eat and drags me (Eric had to sleep with him!) looking like death down to the breakfast area! I literally sleep in my clothes because he will not wait for me to get ready, and I don’t want him to make noise. I have to take at least one unfortunate soul with me to help. It is usually the kid who Christopher tramples over on his way out of the room. His energy level is high, and he is ready to eat a big breakfast!

Christopher flies into the little hotel eating area with a happy squeal or laugh announcing our arrival. Usually everyone looks up from their meal to see who is so excited about the hotel food.  He will go to the buffet and check out the variety of food and usually chooses everything. One of us sits at a table with Christopher while the other prepares his food. You’d think that we starve him, because he eats like a glutton. We don’t mind because we know he’ll burn off the calories at the pool.

Lately we have been staying in the same hotel every time we visit Maggie at her college. The pool has a waterslide, and Christopher loves it! We do too because it keeps him occupied much longer than a standard pool. This was fine until our keen eyed Christopher spotted the big button that stops the water slide in case of an emergency. He thinks it’s hilarious to press this button. The water slide is pretty loud because of the water flowing and because of all the bubbles that form at the base of the slide. When the slide is turned off there is a dramatic change in the noise level. This is what Christopher thinks is funny. He also thinks it is funny watching people scramble to turn the slide back on. We started out running to the front desk to get a maintenance person to come to the pool and turn the slide back on. After a couple visits to this hotel the maintenance guy recognized us and taught Eric how to turn it back on. Now when we are there, either Eric or I stand guard in front of the shut off button. Christopher still tries to turn the slide off but is rarely successful. He does still get a good laugh when he manages to catch us not paying attention.

Going to a hotel for one night or longer with Christopher is exhausting. There is no reading a book poolside or relaxing in a hotel room. We are in constant alert mode. It can be frustrating and not very much of a vacation. At its worst, it can feel like we are punishing ourselves! Luckily the whole family loves sharing the joy of the experience through Christopher’s eyes. Everything is new and fun and exciting for him.

The Day I Knew

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I found a photograph the other day of Christopher when he was about seven months old. It never made it into a photo album, because I thought it was an awful picture. I remember the day I took the picture because it was the day I began thinking something was not right.

Christopher was my third baby, and I was a busy mother! I often forgot to take pictures of him and decided that I should probably take some to send to the grandparents. He was 7 months old, and I had missed the 6 month picture. I think it is really true that fewer pictures are taken with each additional child! Kelsey was at school and Maggie was napping so it was a perfect time.

I first took pictures of Christopher laying down on a blanket. I then tried to take some of Christopher sitting up. I had pictures of the girls sitting uIMG_2438p at 6 months old, but Christopher really had trouble. In the end, I had to put a toy bus between his legs to use as support. I remember thinking his head was so big and heavy that he looked like a toy Weeble. It reminded me of the commercial jingle that went, “Weebles wobble but they don’t fall down!” Christopher was very wobbly, and unfortunately he did fall down! Now I know it is because he has low muscle tone. On that day I just compared Christopher to his sisters’ development and felt a little uneasy. Maggie had low tone, but wasn’t as wobbly. Maybe he was just not going to be athletic. Another common thought that Eric and I had was that he was our first boy, and boys are always slower developing than girls.

Next, I tried to get him to smile. I pulled out all the stops! I made funny noises, tickled him, and blew on his face. He didn’t really react. Sometimes it seemed as though he was staring into space or just looking right through me. I remembered that as a tiny baby, Christopher missed the milestone of smiling by 8 weeks. I talked myself out of worrying too much. Maybe he was tired or getting sick. He did have chronic ear infections after all. Maybe he wasn’t going to have a big personality like his sisters. He was a quiet thinker.

The little photo shoot didn’t prompt me to call the pediatrician. It was just the first time that I started to question Christopher’s development. Sometimes I wonder if Christopher would be in a better place if I had moved a little faster. It was a very different time than today. This was before Autism Speaks and before there were ads in magazines and commercials on the television indicating warning signs. This was before everybody knew somebody who was autistic. I had no experience with autism or anyone who was autistic.

Christopher was a very quiet baby. He did not cry often. As a matter of fact, I used the baby monitor to determine when he was awake. He would stir in his crib but rarely cried when he awoke. I thought it was strange, but I was not alarmed. I mean, who doesn’t want a quiet baby?
Another red flag was that Christopher seemed disinterested in rattles and baby toys when he was in his baby carrier. He was just content looking around. I would see his eyes focus on a cool pattern on furniture or clothing. This entertained him! I would brag about how easy going he was compared to his red headed two year old sister who was full of spunk and in the middle of the “terrible twos.”
The biggest red flag was that Christopher did not coo or makes noises. Only occasionally did I hear sound come out of his mouth. Again, I just thought he was going to be a quiet child.
I rationalized everything like a lot of mothers do. It was easy to go into denial because the differences were so subtle back then. Also, every once in a while Christopher would smile, coo, and look at me. When we would go into the pediatrician’s office for an appointment, and the doctor would ask if Christopher was cooing, I would say yes but would not say how often. This is the way it was for most of the questions. I wanted to believe that everything was OK.

At 18 months, wheIMG_2440n Christopher did not respond to his name and did not have even one word in his vocabulary, I began to panic. No one else did, however. Our pediatrician was conservative. Christopher had chronic ear infections, and the doctor thought that might be delaying him. He said we would wait until he was two to get tubes if things didn’t improve. Then he would see if any more evaluations were needed. At this point, I made a mistake. I listened to the doctor instead of my gut. I knew there was something wrong, but I really didn’t want to know. I wanted to believe the doctor, but knew there was something else going on.

A couple of months later at a park district class for Maggie, a woman approached me with a phone number for an early intervention evaluation program. She was a child development specialist and had been observing Christopher while her child was in the class with Maggie. She noticed him wandering around with no purpose, his lack of social skills, and his low tone. Thankfully, I made the call and got the ball rolling.

When Christopher turned two he did have ear tube surgery but the miracle I was hoping for never happened. He still didn’t respond to his name. His vocabulary never took off. After the tubes were put in we started to think that he was deaf. I remember thinking that we might have to learn sign language, and that wouldn’t be so bad. We had hearing tests done, but at such a young age, they were inconclusive. We used to beat pots and pans behind his head to see if he would turn around. Sometimes he wouldn’t but other times he would, so we decided he was hearing us. Only years later did we have a conclusive hearing test where doctors determined that he was deaf in his right ear.

Finally, we took him to Chicago Children’s Memorial Hospital for an MRI and an EEG. The MRI was normal, so we almost cancelled the EEG. I remember them hooking up all the wires and waiting for him to go to sleep. I also remember the nurse asking me when we had a follow up with the neurologist. When I casually said, “In a couple weeks,” she said that she was going to try to get us in to see him that day. We knew something was wrong!

The doctor met with us and told us that Christopher was having three different kinds of seizures. We never noticed them because they were petit mal seizures that can be hard to notice. When a person has a petit mal seizure, they just kind of space out and when it is over they snap back into awareness. I can honestly say that I have seen Christopher space out, but do not know for sure which ones of these might have been a seizure. The doctor also said that it was hard to know how severely the seizures would affect his development, and that he might never speak.

With this news you might think we were freaking out. Strangely, we weren’t. I think that the knowledge of what was wrong and the promise of a real treatment plan with new medicine that would stop his seizures gave us hope that he would finally start to catch up in his development. We thought that our life would finally get back to normal.

Our life has never been the same. He began receiving developmental therapy, physical therapy, speech therapy and occupational therapy. We had other tests done including genetic tests that showed that he didn’t have any genetic syndromes that were known at the time. At this age, the doctors still didn’t diagnose him with autism. When kids are really young, sometimes they start out with a diagnosis of PDD NOS. That is “Pervasive Developmental Disorder Not Otherwise Specified.” To parents like us this meant, “We don’t know exactly what it is or what is causing it, but there is something wrong with his development!” This is usually a temporary diagnosis that changes when the child gets older. In Christopher’s case, it changed to Autism, OCD, Apraxia of Speech, and Anxiety Disorder.

At this point, I still thought that Christopher could catch up to his peers. I was a first grade teacher. I knew what to do! Eric and I remained optimistic. We really didn’t have any idea about the journey we were beginning.

The photographs I took that afternoon years earlier never made it to Grandma’s house or even into the family albums. I didn’t like the blank look on Christopher’s face. Every time I run across those photos it is a reminder of when our somewhat perfect life took an unexpected turn.

I have heard someone describe children with autism as snowflakes. Each is unique. I believe this is true. Everybody I have talked to has a different beginning story. Maybe this is why there can be so much confusion. There are quiet babies. There are babies that have low tone. It doesn’t mean that the baby will have the same story as Christopher. It is also important to know that there were other children in Christopher’s early programs who seemed to have mIMG_2441ore severe delays than Christopher who have caught up with their peers. No matter how bad it might seem, you never should give up hope, and should never spend too much time and energy comparing your kids with others’. As a parent, however, you need to listen to your instincts and if there is any question that things aren’t right, you need to act upon it right away! Doctors’ ideas can be challenged. Find a doctor that listens to your concerns and will help you find the answers you need.

Christopher didn’t start therapy until shortly after his second birthday. Was this too late? Would starting earlier have made any difference? We will never know. How far will he develop? When he was little, we asked a lot of doctors this and none could really give us an answer. Now we understand that it is only something Christopher will answer. It is 16 years later, and we are still watching him grow and develop. I do know that Eric and I have given Christopher a life full of love, attention, and stimulation. We accept him for who he is instead of who we wanted him to be, and we have always worked hard so that Christopher can live up to his full potential.

The Beach

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There are several reasons why I write this blog. In addition to documenting our family’s journey through a life much different than what any of us ever expected, I hope that some of my stories as an “experienced” mother of a son with autism can help someone else who is just beginning their journey.  Another goal is to share honest thoughts and real emotions that I experience during both the good and the bad times that arise as we care for Christopher. Most importantly, I write to create awareness.  I want people to understand that individuals with autism are people who watch and understand all that is going on around them. They may not react in expected ways, but they are sponges taking it all in.

This is a story about something that I did that I still regret. Being a mother for 26 years, I know things happen and mothers can react in impulsive and incorrect ways. We are human. I can probably tell you a story about each of my kids when I didn’t behave as I should have. If I can’t remember, then ask my kids. They can probably tell you that moment right away. It’s the thing they remember that might have made them feel badly or even when they realized I am a flawed like everyone else.

When the children were little, we spent a couple of weeks every summer at my parent’s condo in Florida. It was wonderful! It actually provided the kids with a lot of structure because we did the same thing every day. We spent the mornings on the beach playing in the sand and swimming in the ocean. It was perfect for Christopher! He craves sensory stimulation, and both the sand and the ocean provide him with an overabundance of it. His favorite thing is for Eric to take him out in the surf so that the waves can crash against him. Christopher loves this feeling. He always has a big wide smile and often waves hit him in the face and go right into his mouth. He doesn’t care. He just drinks it andChrisBeach1 laughs. After a while, Eric usually takes him further out where the waves are not breaking yet. There he and Christopher just ride the swells up and down, floating with the waves. It is quiet and calm. They will do this for hours just relaxing and floating around. Christopher always wears a life jacket because he doesn’t know how to swim. Eric also wears a life jacket so that he can also float around too. Recently, we have even hooked Christopher’s life jacket to a tether so that Christopher can have freedom to float about without needing Eric to hold onto him. Eric can always reel him in if he gets too far away. Christopher always wants to go farther and farther out.

After several hours of this, we would return to the condo for lunch and a long nap. Then we would go to the pool and play. Christopher always did well. The condo complex was great because there was never anybody there in the summer. They didn’t have weekly rentals, and its residents were primarily snowbirds. We usually had the whole pool to ourselves.

Even though Christopher was not completely potty trained for many years, he luckily never had an accident in the pool that I was aware of. There were signs all over about wearing swim diapers and rubber pants. Christopher had these, but after the age of four, they didn’t fit well. There was even a posted notice about a large fine if there was an accident. I was always anxious about Christopher having an accident, so my goChrisBeach3al each day was to make sure he had an empty bladder before swimming. Bowel movements were harder to control, so sometimes, if I thought Christopher was due for one, I would have him sit longer on the toilet. This brings me to that awful “bad mom” moment. Christopher was sitting on the toilet, and we were planning to go to the beach.

When Christopher was six years old, he went through a pinching phase. He has different phases with different people, so he was really only pinching me. Being almost totally nonverbal at this age, I guess I assumed that Christopher had limited understanding of language. This is a misconception that many make, and I was no exception. At this time, Christopher also had severe separation anxiety. He wanted me at his side at all times which was extremely frustrating for me. Eric and I had not discovered how to handle this problem yet. I stood by him in the very small bathroom waiting for him to do his thing, and he started pinching me and laughing. I had pinch marks and bruises up and down my arms. With each pinch, I became more and more frustrated. Finally I shouted, ”Christopher! Stop! If you don’t stop pinching me, I am going to take you out to the middle of the ocean and leave you!”

The second I said it, I knew I was wrong. But at the time, I really didn’t think Christopher understood me. I don’t remember his immediate reaction, but he didn’t stop pinching me. Later, when it was time to walk to the beach, we all went down the elevator, walked along the pathway to a point where right goes to the ocean and left to the pool. Christopher stopped in his tracks and wouldn’t move. We tried to get him to go towardChrisBeach2s the ocean, but he refused. He pulled me left towards the pool. At that instant I knew he understood me in the bathroom. I felt horrible and knew I had made an awful mistake. I felt so much shame! But at the same time, I was also kind of proud of Christopher! He understood me! I promised him I would never leave him in the ocean.

The lesson here is that individuals with autism can hear, they understand, and they are more aware than you think. They probably understand everything you say. I learned this lesson the hard way. I said something awful to my son that probably scared and hurt him.

That day really changed the way I communicated with Christopher. I began to talk normally to him instead of using short easy sentences that I perceived were easier for him to understand. There are still many times when I will talk to Christopher and it looks like he is not paying attention. Later, in fact sometimes much later, he will repeat or make reference to something I have said and even forgotten about.

Several weeks ago we were making valentines, and I was talking to Christopher about making one for Kelsey’s house. He was busy gluing beads to the heart, so I didn’t know whether he heard me or not. A couple weeks later when Kelsey came home, Christopher right away went and found the valentine, brought it to Kelsey, and said, “Kelsey’s house!” I didn’t even remember that we had talked about that until I saw him giving it to Kelsey.

Always assume intelligence! Always assume awareness and always be careful and respectful of feelings that an individual with autism has just like you would be with anyone else. It’s simple! Just treat everyone like you would want to be treated. I can only hope that Christopher has forgotten what I said at the condo that day. Thankfully, he is not afraid of the ocean, and we have gone swimming at the beach many times since then.

Church

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We have gone to church more lately than we have gone in a long time. I’m happy to report that Christopher has been making it through the services with flying colors! This hasn’t always been the case. As a matter of fact, going to church with the whole family together is usually a rare event. Getting to church is not the problem. It is getting through a service without incident that is challenging.

When the children were really little and Christopher was a toddler, attending church was not a huge problem. At that time, I would sometimes dress the boys in matching outfits. I would arrive at church sort of frazzled like any young mother with four children. I’m proud to say that one time somebody complimented me and saying how impressed they were that our family looked so put together. I think it was the matching outfits! He obviously wasn’t looking too closely IMG_0714because I literally had sweat dripping down my face. Eric’s sweater was also on backwards because he was busy with the pre-church preparations, but the kids looked good!

Like most parents with toddlers, we put Christopher in the nursery. At our church, Sunday school begins at age three. At age three, Christopher was still in diapers, non-verbal and non-compliant. Instead of trying to put him in Sunday school, we just continued to drop Christopher off at the nursery. At some point, however, it became clear that the nursery wasn’t working anymore. Christopher still liked going there, but he was just too big and required a staff member to solely attend to him. The nursery was crowded with smaller children and babies. Christopher threw toys and was not always aware of his space, so the other children were not safe. It wasn’t that Christopher purposely hurt children. He just didn’t seem know they were there. He would bump into them causing them to tumble to the ground, or he would walk through block buildings or other toy creations and cause a child to cry. Yes, it was definitely time for him to leave.

The Sunday school teacher encouraged us to go ahead and include Christopher in his age appropriate class, so we tried that. This worked for a while and Christopher’s teacher was wonderful, but we knew there were problems because Christopher really didn’t have any understanding of what was going on. He would lose interest and start having negative behaviors. Even after the church implemented a program for special needs children where a high school student volunteered to be his aide, it did not work for Christopher. By this time the other students were reading and writing, while Christopher was still in diapers, nonverbal and had no attention span. We decided that Sunday school was not the place for him.

At this point, we started bringing Christopher to the church service with us. We arrived armed with a backpack full of toys, snacks, and water bottles. We would quickly show him a toy or jam a snack in his mouth when he disrupted the service. It was hard work getting through a whole hour! Sometimes I wondered why we even bothered. I was so busy trying to keep Christopher quiet that I didn’t hear the sermon. I’m pretty sure nobody around us did either. Christopher would sprawl out in the pew, take his shoes and socks off, and want me to rub his feet. The timing never worked out. He seemed to always want me to rub his feet right before the sharing of the peace. This is when everybody shakes each other’s hand with the people sitting close by. Would you want to shake someone’s hand that had recently been rubbing stinky feet? I think not!
Then there was communion. This was always a challenge. As a matter of fact, it still is. He sees the wafers as a potential snack. If someone is holding a plate in front of him, he is going to reach out and grab whatever is on it. I’m not talking about just one wafer either. He is going to grab as many as he can fit in his hand, and stuff them in his mouth before someone takes them away! There was even a time when he batted the tray out of the server’s hand scattering wafers all over the floor. That’s something you don’t see every Sunday!

Christopher does not take communion. Eric and I sometimes take him up to receive a blessing depending on his mood. This has not stopped Christopher from trying to get his mid-morning snack! We learned very quickly that he can’t have any free hands when he reaches the front of the line. This is a two man job. We’d each need to have a tight grip on one of his arms so his hands are not free. This seemed to work until one Sunday when with both arms immobilized, Christopher decided to lash out with his feet. He kicked the pastor in the shin. The pastor winced in pain and quietly told me it was OK. We felt so discouraged that day. At that point, Eric and I decided something had to change.

For several years, we hired a respite care worker to take him out during church. Christopher liked going to the grocery store and picking things out. We would give her a short list of things for Christopher to find. After shopping, she would meet us in the church lobby where Christopher could have a doughnut with the rest of us. This way, Christopher would still feel a part of church. In spite of this, not having Christopher at worship with us was an emotional struggle. We felt a hole in our family. Church is something for the whole family to share and should not exclude anybody.

Other times, Eric and I took turns. One of us would go to church with the family while the other would stay home with Christopher. This was my least favorite option. Eric and I deal with Christopher’s care together. We are a team. Anytime we split up and one takes Christopher alone while the rest of the family is off doing something elsewhere, we feel disconnected, lonely, and a little depressed.

We continued to occasionally attempt to take Christopher with us. Sometimes he did great and other times he did not. Our lowest point was when Christopher, now 17 and big, pulled the hair of a little girl sitting in front of us. He would do this sometimes when he was frustrated and wanted our attention. We tried to get him up and out of the pew, but he wouldn’t leave. Michael, who was in the band at the front of the sanctuary, came down and helped Eric wrestle him out of the church. All of this happened while the pastor was trying to preach the sermon.

At this point, we gave up for a few months. We felt bad, however, because Michael was really connecting with the church. Every Sunday, he would play in the band, and we weren’t there. We decided that we had to try again. Thankfully, the youth service that Michael is part of is in the basement of the church. The room is kind of a worship space / coffee shop and there is a booth in the back where we sit with Christopher. He can do puzzles and eat snacks on the table, and it has worked out really well. He can be loud, but we are way in the back where it is not too disruptive. It is working! We are at church with the whole family. There are also other families with children with special needs there, so we don’t feel alone.

Sometimes we go to the more formal service when Eric plays the violin or Maggie sings. Christopher is doing better. I have found in these services that Christopher likes to sit in the front so he can see his family members perform. His favorite part of any service is the music.

Churches are now working on making their members more aware of and welcoming towards families with children who have special needs. It is working. A few weeks ago a woman who was sitting next to us squeezed my hand and said that Christopher did so well. She went on to say that she really enjoyed sitting next to our family. This made me feel more at ease and encouraged. There are still difficult times, and I am often distracted during the service, but we are going to continue to go. It is important to us.

Aftermath

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We went out to eat the day after we took the Christmas tree down. We were trying to distract Christopher. We were finishing dinner and all of the sudden Kelsey said, “We need to go. Get him out!” I looked at Christopher, his bottom lip was quivering, and his eyes were welling up with tears. We quickly stood up, gathered our coats, and dragged him outside. As we were walking to the car, Christopher began to wail. He is a big guy and his cry is loud! I was relieved we got him out of the small restaurant before he really started bawling, but we now had to somehow get him in the car without a stranger calling the police. Once again, it looked like a kidnapping. How many times have you been in a parking lot when there was a grown man wailing and five other people trying to stuff him into a car? It was stressful, a little funny, but mostly very sad.

Taking the Christmas tree down each year for most people is a normal thing. I think a lot of people are a little sad, but we all know we will do it all again next year and experience the same joy all over again. We also know that there will be other exciting things that happen as the year progresses. I wonder what Christopher’s autistic mind is thinking. I wonder why this is so difficult for him every year. He literally mourns the death of the Christmas season. The weeks after Christmas are the only times when he will randomly start crying.

Last week was long aIMG_2168 (2)nd sad. Like every other year, we tried to make things easier for Christopher by gradually taking Christmas down so that he would eventually accept it. Unfortunately, there really seems to be no good way of doing it. This year I thought we had a wonderful idea. We took pictures of every Christmas decoration in the house. Every day I showed him two pictures and had him choose one of the decorations to put away in the basement. Christopher has obsessive compulsive disorder and he loves putting things in boxes and putting them away. I wish all my children liked putting things away! Anyway, we had no problem getting Christopher to put a Christmas decoration away. As a matter of fact, he wanted to put more away. As he was doing this you could see the conflict in his mind of wanting to put the decoration away in the basement, but being sad that it would no longer be out. His brain is just so interesting. It is weird, and it is complicated.

That first day I let him take down a few ornaments but not all of them. I knew he would regret it later, and I was right. He became anxious leading to more tears. In spite of this, every day after school we continued this drill. It became part of his routine. He even initiated it one day when I thought we would take a break. Several days later we took the first of our two trees outside. We took the living room tree first because he has less of an attachment to it. At first, he seemed excited. It seemed to feed the OCD side of his brain. That night, however, he cried. He cried for four straight hours. I had to sleep with him that night. I was afraid he would wake up alone and upset in the middle of the night. He doesn’t cry much. As a matter of fact, the last time he really cried was last year when we took the Christmas tree down.

We continued our take down schedule the next day. Christopher was distracted because he could see the living room tree at the end of the driveway waiting for the garbage truck to pick it up. He got out of the house several times when a door was accidently left open. We would chase him outside and drag him back in. He usually didn’t wear any shoes or jacket and it was cold outside! I also worried that a car driving by would not see him in the dark. He would run into the street to look at the tree lying there. Despite this, we began working on taking the ornaments off the special family room tree. This is Christopher’s favorite tree because it is bigger and has his ornaments on it. A couple of days later, like ripping off a band-aide, Eric took the big tree out to the curb. I was secretly grateful that I wasn’t home.

That night was long. He was loud, he was anxious, he was excited, and he was distraught all at the same time. When Christopher cries, it is so sad. He is so pure of heart and honest. He doesn’t know how to manipulate others with his emotions. When he cries, it is because he is sad and broken-hearted. It is not for show. It is not to cause drama. It is genuine despair. This is what makes it difficult for everybody around him. That night we all surrounded IMG_2155 (2)him, hugged him, and tried to comfort him. The dog even was involved! At one point, Eric and I sandwiched him in bed and our golden retriever was at our feet. There was nothing we could do but tell him over and over that Christmas would be back again next year. The other children took their turn also. They each spent time hugging him and consoling him. I must say, I am so proud of their deep love for Christopher. I know that long after I am gone, Christopher will never be alone.

Weeks later, Christopher is still upset. He isn’t crying anymore but his OCD has set in. He needs constant reassurance that all the other holidays are going to occur in the correct order as the year progresses leading up to Thanksgiving and another Christmas tree to set up. I am conflicted now. I want him to feel better and am sad for him, but I am frustrated. Christopher is unable to keep his attention on anything. He can’t sit for more than two minutes without coming up to me to talk about the list of holidays. I feel like a broken record. Basically, I feel sorry for him, yet I want to bang my head against the wall! The good news is that I know this will pass.

His reaction this year was not too different from last year’s. This year he cried a little more because I think he is more aware of how long the wait is going to be now. This year has also been a little better than last year. He is growing and maturing. He has not become aggressive pulling my hair from anger and frustration. Last year, I think he blamed me for the end of Christmas. I think he believed I had the authority to assign holidays to certain days and could pick tomorrow to be the next Christmas if I wanted. This year he seems to understand that time and other events must pass before Christmas comes again.

Hope and faith help me get through the difficult times. I have hope that someday Christopher will not mourn the end of Christmas. I hope that when he is older and we aren’t around that others will respect and enjoy his excitement for the season. I hope that he will always have a shoulder to cry on when the tree has to come down. I have faith that as he gets older, he will find strength to enjoy the present without worrying so much about the future.

Christmastime

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We bought a huge Christmas tree from the Boy Scout Xmas tree lot this year. While there, Christopher ran around wildly with his arms dancing in the air. Every so often he would stop to touch one or smell the fragrant pine needles. He would then laugh and move on to another row of trees. While I happily followed excited Christopher, Eric was busy finding the perfect tree.

We promised Christopher every night before he went to bed that we would get a big and tall tree. You see, almost every night since last January, Christopher has gone to the corner of the family room and stood where our past Christmas trees have been and has said, “Christmas tree next time.” This is his way of asking us if we would have another tree. After reassuring him every night he would then say, “Thanksgiving, then Christmas tree store,” which we would repeat. Then he would say, “Big and tall, lights and ornaments” before getting into bed. He is basically a 365 day advent calendar. Finally Thanksgiving was over and the day Christopher was waiting for was here!

The tree is beautiful but huge. It was frustrating getting it into the stand. It never looked quite straight. I can’t express in writing how excited Christopher was the next morning when he saw the box of ornaments. I gave Christopher his ornaments from the last 18 years – the Winnie the Pooh first Christmas ornament with all his birth measurements, the ornaments that had his school picture on them, and the ornaments representing all his interests growing up. Christopher’s Christmas joy is centered around putting the ornaments on the tree. He likes presents and other Christmas traditions, but nothing in his world is as exciting as putting the ornaments on the tree and then just staring at them for a month.

As I handed him the Winnie the Pooh ornament, I remembered the excitement we felt on his first Christmas. We had so many awesome dreams for his future! We knew nothing at that time of what was to come. Each of Christopher’s ornaments represent different phases of his development through the interests that he had at the time. We have done this with all of our children, but with them we have choir, swim team, and graduation ornaments. Christopher seems to have a lot of food ornaments! He has an ice cream, popcorn, animal crackers, and a cheeseburger ornament. He even had an ornament that is a plate is lasagna! Mixed in with these are a few truck, car, and airplane ornaments reflective of the toys he liked to play with. This year, one of his ornaments was a jack-o-lantern ornament because, you remember, he cancelled Halloween! He thought that one was funny.

Christopher arranged his ornaments all in a clump. He is very protective over his ornament arrangement. As a matter of fact, every day when he came home from school he would run to the tree and make sure the tree was still there. Then he would touch each of his ornaments to make sure none had been moved! So, we have a gorgeous 13 foot tree with a big blob of ornaments in the middle. It would never make the cover of a Christmas magazine.IMG_2035

This year, Christopher has decided that in addition to his past ornament collection, he loves making new ornaments. In previous years, he would get one or two new ornaments to put on the tree, but this year he has about 20. As a matter of fact, I’m a little worried that our tree is going to start looking like an advertisement for the Dollar Store! We go almost daily to pick out an ornament kit that he glues sequins onto. For the past month, this has been the thing that motivates him the most! When he doesn’t want to get into the car to the store or to pick up Michael, I just have to tell him that we will make another ornament when we get home. It works every time!

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As I said earlier, Christopher spends much of his time just looking at the tree. He likes to lay under it and look up through the branches. I wasn’t really sure what else he was doing under there until a day after we put the tree up. All the decorations were on, and he was under the tree picking at something. Then all of the sudden I saw the tree move a little bit. Christopher noticed the movement too, and luckily was able to quickly get out from underneath it. Right when he sat up, the beautiful tree fell over. Crash! Christopher looked terrified – not because it scared him, but because he thought that we would not put it back up. After much reassuring and a trip to Home Depot, Eric was able to get the tree back up, straightened out, and tied to the wall. Later, we notice a small pile of pine needles under the tree. Christopher was tugging at the branches pulling the needles off and putting them in the pile. He must have pulled too hard causing the tree to topple. Once the tree was safely back up, you could see how relieved Christopher was. In fact, now he finds it hilarious that, “Daddy went to Home Depot to fix the tree.” Whenever he says this, he laughs so hard that we have to tell him to breath.

We have two couches in our family room. Christopher has changed from his normal spot to the couch that is right next to the tree. I often see him just touching the branches or ornaments and playing with the needles. I’m hoping it is OK that he has eaten a few needles. I’ve seen him do that too! The boy just loves everything having to do with the tree.

Christmas has come and gone. Christopher had a wonderful day and did better than past Christmas mornings. Now, a week later, there is anxiety. He knows it is almost time for the trees to come down. He goes over and over the list of next year’s holidays leading up to next Christmas. He wants me to repeat them over and over. I know he understands that Christmas will be back again but I also know that he knows the wait will be just as long as it was last year. Last year, he cried when we took down the last tree. It was devastating!

In a couple of weeks, he will recover and will be back to his happy self. He does like other holidays and almost forgets Christmas at the Memorial Day parade or the Independence Day fireworks. In the end, however, these fun holidays are just days that he can cross off on his way to next Christmas.