Christmas Present

With just one more door to open on our Advent calendar, we know that Christmas is imminent. Often, December is a difficult month for Alex, even though he eagerly anticipates his birthday and his favorite holiday, Christmas. Like many with autism, sometimes all the hoopla surrounding the holidays can be a bit much for him. To be honest, all the expectations fueled by the media to create a perfect Christmas can make me anxious, too.

The December issue of a magazine sitting on my coffee table (which is cluttered with Alex’s notebooks and pens, his Jeopardy baseball cap, and his tape measure) insists that I still have things to do in the relatively short time between now and Christmas Day: “MAKE IT MAGICAL!” “Amazing holiday gifts (to buy or DIY)” “Host the Perfect Cookie Swap” and “Deck your halls in striking winter whites.” While magical, amazing, perfect, and striking may be good goals for some, I’m just delighted that my decorations look cheerful, the cookies I baked for family and friends are tasty, and I put careful thought into the gifts I’m giving. More importantly, I have remained calm throughout all the preparations, and so has Alex. As Martha Stewart, whose magazine I quoted, would say, “It’s a good thing.”

In contrast to the perfection stressed by December magazines, autism websites offer helpful tips for families in dealing with the sensory overload that often accompanies the holiday season. Talk About Curing Autism provides practical solutions to make the holidays less overwhelming. In “Talk About The Holidays,” they list good suggestions to make holiday photos, food, gifts, noise, and memories easier and better. [To read this article, please click here.] For example, “Be willing to not take it personally if the child shows no interest in the gift given. It may be something that they will come to treasure at a later date.” Having witnessed that first-hand, I know that tip is on target.

Another helpful website, the Indiana Resource Center for Autism at Indiana University, provides social stories for children and adults with autism to teach them coping skills. [To see their website, please click here.] In a social story titled “Christmas Presents,” a good lesson about being a gracious recipient is provided: “It is good to say ‘thank you’ to the person who gave me the present. If I already have the present or do not like the present, I do not say anything. I smile and say ‘thank you.’ Saying that I do not like a present may hurt the person who gave me the present.” Frankly, this lesson about gratitude could benefit many people, not just those with autism.

With Alex, we have learned over the years to encourage him to participate in holiday activities while constantly watching for signs that he is overwhelmed by sensory overload. For many years, he wasn’t particularly interested in the decorations until they were done, but this year, he seemed to enjoy the process, watching me intently as I hung ornaments on the Christmas tree, set up the Christmas village, and decorated the mantel over the fireplace. Although he offers no suggestions for what gifts he would like to receive, he is completely content to trust my judgment about what I think he will like. Moreover, he seems to have learned the lesson in the social story, smiling and saying “thank you,” never telling me that he doesn’t like a gift, except for the year I gave him socks as a joke and he told me that wasn’t a good gift.

Even though Alex has been remarkably calm and content the past few weeks, we know there’s always the possibility that he can become anxious. Moreover, we know the importance of being flexible, despite the attempts to make Christmas as magical, amazing, and perfect as possible. Last year, we had nearly made it to my brother’s house for our family Christmas get-together when our car skidded slightly on ice. Although this was a momentary loss of control, it was enough to make Alex lose control, and he insisted we had to go home immediately. Despite reassurances, he needed to go home where he felt safe, and we had to honor his requests. While not being able to be with family was disappointing, we had to put his needs first, as we always do. For many years, we didn’t even try to go to family holiday gatherings because Alex couldn’t handle them. At least now we can try, but we prepare ourselves for the possibility that we may have to cancel plans at the last minute. This is the reality of life with autism, which is not always magical, amazing, or perfect.

However, for Alex, Christmas preparations don’t revolve around decorations or food. He will tell you that Christmas is Jesus’ birthday, and he likes to celebrate by listening to Christmas music. In addition to the two Christmas concerts he has enjoyed this holiday season, Alex has been singing Christmas songs with his music therapist and listening to holiday songs on his CD player. Remembering favorite songs from years past, he has sent me searching the house for specific CD’s he wants to hear. The other day, he had me looking for “Glory to God in the Highest” and rewarded my efforts by smiling and swaying to the upbeat contemporary gospel tune. Last night, he requested a Christmas song by gospel songwriters Bill and Gloria Gaither, “Look Who Just Checked In.” After my unsuccessful hunt for the CD with that song, he was able to find a video performance of the song on YouTube. Always curious as to what makes a song special for Alex, I listened to the lyrics along with him:

“Look who just checked in, into the barn, into the world, into the hearts of the boys and girls. Never been a baby quite like Him. Look who just checked in.

He’s the Prince of Peace, the King of Kings, the Lord of the Universe and every little thing. Emmanuel says time again, God is with us once again, once again.”

Despite all the obstacles autism presents in social skills and communication skills and sensory issues, Alex understands the true meaning of Christmas: the birth of our Savior. It’s not decorations or food or presents; it’s the reminder that God sent his Son to Earth to check in to the world and into our hearts. As if that were not gift enough, He gave me my son to remind me what makes Christmas truly magical, amazing, and perfect. “Glory to God in the highest!”

“But the angel said to them, ‘Do not be afraid. I bring you good news that will cause great joy for all the people. Today in the town of David a Savior has been born to you; He is the Messiah, the Lord.” Luke 2:10-11

"All Is Calm; All Is Bright"

 

I don’t like change; in fact, most of the time I’m perfectly happy staying in a familiar rut. Sometimes, God has to give me multiple signs in order for me to do something different, to step out of my comfort zone. Recently, a series of small jolts pushed us to make changes in Alex’s best interests, and so far, the results have indicated that doing something new was absolutely the right decision.

About two weeks ago, when I went to pick up Alex’s medications at the pharmacy, one of them mysteriously was not with the others. The pharmacy technician was puzzled as to why it was missing, but assured me she would check on it and felt confident it would arrive that afternoon. Later in the day, I received a call from the pharmacy that the medication still had not arrived, but they would order it again and hoped it would be ready for pick up the following day. Even though I was confused about the delay on the arrival of the medication, I wasn’t that concerned because I still had a week’s worth.

The next afternoon, I had a message on our answering machine from the pharmacy that not only had the medication still not arrived, but it was also on backorder, and they didn’t know when they could get it. Now I was getting nervous. I called the pharmacy to find out more, and the pharmacy technician told me the company that manufactured that particular drug had stopped producing it. A Google search after I got off the phone gave a hint as to why they suddenly stopped manufacturing it; they had to recall several batches of this time-release drug because apparently it was not properly releasing the doses throughout the day.

When I asked the technician if they could get the medication from another company, she told me that it was the only company who made the drug. Knowing that was not correct because in the past Alex had taken the medication made by another manufacturer, I told her there was another company, but she insisted there was not. (Another Google search confirmed that I was correct as I found the name of the other company.) She did tell me another store in a nearby town had some, but we would have to transfer the prescription and go to pick up the pills ourselves. Not happy with the news she had given me, I nonetheless thanked her for the information and hung up the phone to ponder our options.

At this point, I was verging into panic mode. What were we going to do if we couldn’t get this medication for Alex? I decided to go to the pharmacy the next morning and talk to a pharmacist in person and explain my concerns about finding the medication soon. The pharmacist understood my concerns and immediately tried to track down Alex’s prescription. She scoured the warehouse records, tried to order more, and even called a competitor’s pharmacy to see if they had any in stock. In addition, she passed along the information to the pharmacy manager, including the name of the other company that manufactures the drug, which I had given her.

The next day I received notification that Alex’s prescription had been filled, which came as a huge relief. When I went to pick up the pills, there was a note that they had gotten them from the store in the nearby town––saving us a trip there––and that they were still trying to track down this medication from their warehouse. While I was delighted to have enough pills to administer twice a day for a month, we still don’t know if the pharmacy will be able to get more next month. Perhaps this was God’s way of telling me it was time to wean Alex off this medication, as we had done with two others successfully.

Contacting the psychiatric nurse practitioner who prescribes Alex’s medications for anxiety, I sent her an email explaining the shortage of this particular medicine. First, I asked her what medication could substitute for the one he’s been taking, and then I asked if we could try weaning him off the medication by forgoing the nighttime dose, since he’s sleeping and wouldn’t be bothered by possible side effects as much. In her email response, I found out the replacement drug is one I really don’t want Alex to take because it has terrible side effects. However, she did agree that he could try not taking the nighttime dose and see how he does.

After discussing our options with Ed, we agreed that now is the time to try taking Alex off the nighttime dose since he’s doing well managing his anxiety. So, last Monday, for the first time in years, we did not give Alex the nighttime dose of that medication. Although I worried that he might have trouble going to sleep or might wake in the night or could wake up in the morning irritable without that dose, he fell asleep easily, slept peacefully through the night, and awakened in a sweet mood. Moreover, he was sweet natured every day last week, despite having his medication reduced by half. Clearly, taking away the nighttime dose was the right thing to do, and we are thankful that he doesn’t seem to be having any negative side effects from this change.

Early Thursday morning, Alex awakened me around 4:30 A.M., and a sense of dread awakened with me. Was the lack of medication affecting his sleep, and would he be agitated? No, he simply wanted to inform me that the power had gone off briefly in the night, and he calmly told me that his alarm clock wasn’t working. As I stumbled into his darkened room, half asleep and terribly nearsighted, I tried to see what was wrong with his clock, plugging it in different outlets, but having no luck.

Since time is very important to Alex, even in the night, I was concerned that he would be very upset that his clock would not work. No, he sat calmly on his bed, even amused that I was clumsily doing everything I could to make his clock work. Finally, I told him that his clock was broken, but I would go to Target when they opened and buy him a new one. Completely satisfied and not a bit irritated, he smiled, crawled under his covers, and went back to sleep. If I had any lingering doubts about taking away the nighttime dose of medication, they were gone. Alex calmly handled a situation that could have upset him in the night without the medication regulating his mood. There in the dark, sleepy, and half-blind, I saw clearly: God had planned this all along.

Because we were content with how well things were going, we weren’t going to initiate medication changes. However, God knew that Alex no longer needed this medication at night and put us in a situation where we feared that we wouldn’t be able to get more. Despite our fears that the change would be hard on Alex (and by association, us, too), he has dealt with the medication reduction beautifully, even in a situation that could have upset him. Once again, we were reminded that God knows what Alex needs better than we do, and we simply need to trust Him, pray for guidance, and be willing to embrace changes instead of fearing them. Tomorrow, as we celebrate the birth of God’s son, I pray that my faith will be more childlike––like my son’s––as I wait with anticipation, trying to be fearless and accepting changes, knowing that God’s plans for Alex’s life are better than anything I can imagine.

“They were terrified, but the angel reassured them. ‘Don’t be afraid!’ he said. ‘I bring you good news that will bring great joy to all people. The Savior––yes, the Messiah, the Lord––has been born today in Bethlehem, the city of David!’” Luke 2:9-12

"Repeat the Sounding Joy"

 

Last Sunday, we took Alex to Tuba Christmas, a wonderful annual concert held in Valparaiso University’s beautiful Chapel of the Resurrection. Although Alex has enjoyed this concert in past years, we had a little bit of trepidation as to how he might react this year, due to his recent increased sound sensitivity. In fact, last month we had to leave a jazz concert early because he covered his ears and told us the loud music bothered him. We hoped that the much larger venue would help make the sound of the music less intense for him and that the lower brass sounds would bother him less than the shrill trumpets and saxophones at the jazz concert. Just to be sure, we sat in the back of the chapel, where he would be farther away from the musical instruments and where we could leave quickly if he became overwhelmed.

Despite the large crowd, Alex seemed comfortable while waiting for the concert to begin and studied the lyric sheet given to us as we entered. As the first song played, he began to sway to the music and was clearly content. For this concert, the musicians play familiar Christmas carols once and then have the audience sing along the second time they play the song. Alex used his index finger to follow along with the words to the songs and smiled as he sang softly to the familiar tunes, several of which he sings each week with his music therapist.

During the second song, a family came and sat behind us, and one of them was obviously excited to be there. I tried to turn subtly to see the young man who was singing with such enthusiasm, but I couldn’t see his face. However, as I turned, his mother recognized me and said hello to Alex and me; she is an awesome autism mom we know. Her son with autism is a little younger but more verbal than Alex, and at the end of each song, he happily exclaimed, “Wow! That was great!” I knew Alex felt the same way as the other young man; even though Alex didn’t say much, he grinned and shuddered with joy.

As I looked around the packed chapel, I saw many people checking out their phones instead of being totally present in the moment. None were as engaged as the young man sitting behind me and my son sitting beside me. Truly, these two embodied the “joyful and triumphant” described in “O Come All Ye Faithful.” Even though autism has presented obstacles that make their lives more difficult, they find joy and triumph in listening to music and singing Christmas songs.

At the end of the concert, the young man proclaimed, “That was the best Tuba Christmas EVER!” When I asked him if he had fun, he enthusiastically told me he did. While Alex was less vocal in his praise, he quietly but happily told us that he liked the concert “one hundred percent” and said that he wanted to come back for Tuba Christmas again next year. I’m glad we didn’t allow our concerns about having to leave the jazz concert early last month prevent us from taking him to this concert because Alex clearly enjoyed himself, and we had the opportunity to share the joy of the holiday spirit with a family like ours, raising a young man with autism.

Of the dozen or so songs we sang that afternoon, the one that best reflected the eager anticipation of our sons with autism was “Joy to the World.” While others may be caught up in holiday tasks of buying and wrapping gifts, decorating houses, baking goodies, and sending cards, Alex spends December looking forward to his own birthday and that of Jesus. Reminding us to celebrate, the song provides the reason why: “Joy to the world! The Lord is come. Let earth receive her King. Let every heart prepare Him room.” Certainly, the two young men with autism sitting in the back of the chapel where they wouldn’t bother anyone were ready to receive their King; their hearts, filled with childlike faith, had already prepared room for Him. In the last verse of the song, we are reminded repeatedly to “repeat the sounding joy,” something we sometimes forget, but an important detail our sons remember.

As the days preceding Christmas dwindle, I am thankful that Alex reminds me daily to savor the anticipation leading up to his favorite holiday. When I feel frustrated or disappointed that his life isn’t as I had hoped it would be because autism has created challenges for him, I think of him and my friend’s son happily singing Christmas carols in the back of the Chapel of the Resurrection. At the front of the chapel, the statue of Christus Rex, Christ the King, joyfully and triumphantly lifts His hands in victory, assuring me that all will be well in the end. Indeed, “Repeat the sounding joy!”

“But the angel said to them, ‘Do not be afraid. I bring you good news that will cause great joy for all the people. Today in the town of David a Savior has been born to you; He is the Messiah, the Lord.’” Luke 2:10-11

Christmas Shopping for Kids and Adults with Autism

 

When I was a kid, my siblings and I eagerly awaited the arrival of the Sears Christmas catalog in the mail every November. Known as the Sears Wish Book, the catalog was published annually from 1933-2011. I imagine that in many households, children often impatiently waited their turns to see what the catalog displayed so that they could dream of what Santa would bring them. My brother, sister, and I used the Wish Book to make lists of what Christmas gifts we wanted each year, and every year my brother had to edit his lengthy list. Apparently realizing customers missed that annual tradition and the nostalgia that surrounded it, Sears revived the Wish Book this year with an online edition at their website and a limited printed version for their best customers.

Although the Wish Book was a staple of my childhood, Alex has grown up in the computer age where online shopping and the seemingly endless availability of products on Amazon have changed holiday shopping. By typing in a few clues, I have been able to find gifts that matched his unique interests. For example, his love of the irrational number pi led me to find a door-sized poster with the first one thousand digits of pi, a pie plate with the symbol of pi and several digits, a roll-up tape measure with several digits of pi, and several books about his favorite mathematical concept.

While others are out shopping on Black Friday, I’m home with my laptop scouring possible gifts for Alex. Added to the challenge of finding Christmas gifts he will love is the arrival of his birthday nine days before Christmas. In addition, he rarely gives any suggestions about what he would like, so I’m often working without the lists my siblings and I were kind enough to supply to my parents when we were kids.

Fortunately, other parents facing similar dilemmas of buying gifts for their children with autism have offered ideas and suggestions in helpful online lists. I recently discovered a great blog entry on the Recovering Kids Blog entitled, “Top 25 Foolproof Holiday Gift Ideas for Kids with Autism” that introduced me to the Boogie Board Jot. [To read this article, please click here.] After reading about the Boogie Board Jot, an LCD eWriter for writing lists and drawing with a stylus that can be erased with a push of a button, I knew this was ideal for Alex and his need to jot lists. Some comparison pricing online led me to ordering it from Best Buy, which also had free shipping.

Another great site for shopping is National Autism Resources, which offers a “Toy and Gift Guide for Autistic Kids and Teens.” [To see this list, please click here.] This user-friendly list allows the parent to shop by the age of the child and the type of toy, which is very helpful. Recognizing that many parents of children with autism seek toys that are not only entertaining but also educational, these toys are categorized under the skills they help teach and needs they help meet, such as gross and fine motor, calming, sensory, and social skills.

In gift giving, parents often need to think outside the box because our kids have unique interests and needs. When we find the right gift for our kids, we like to share those ideas with others who might also benefit from our fortunate finds. For example, Alex’s interest in astronomy and meteorology led me beyond books to three gifts that play essential roles in his daily/nightly living and are as important to his bedroom as the furniture. For example, Moon in My Room by Uncle Milton (available at many stores and online) hangs on the wall across from his bed. Using a remote control, he can click on various phases of the moon to light up the battery-operated moon. With an automatic shut-off device, the moon acts as a night light he turns on when he goes to bed but turns off on its own about the time he falls asleep. I think Alex also likes Moon in My Room because it reminds him of one of his favorite childhood bedtime stories, Goodnight Moon. Nonetheless, this Christmas gift continues to be a big hit with him.

After trying various star projectors that illuminate Alex’s ceiling with stars, we finally found one that doesn’t burn through batteries and bulbs quickly. The Vicks Starry Night Cool Moisture Humidifier runs on an electric plug and projects color changing stars on the ceiling with or without the cool mist humidifier. In the winter, the humidifier does double duty by providing moisture for the dry air and entertainment at night with the colorful stars.

Along with astronomy, Alex also has a keen interest in meteorology, and we have gone through a variety of weather stations over the years. A few years ago my brother found a terrific colorful weather station as a Christmas gift for Alex, and it’s one of his prized possessions. Sitting on his bedroom dresser, Alex checks it first thing in the morning and right before he goes to bed, as well as multiple times throughout the day. Alex likes knowing the current weather, indoor and outdoor temperatures and humidity, and the daily high and low data. In addition, this weather station shows the current time and date, two vital pieces of information for Alex. On this small screen, Alex has most of the information he thinks he needs to know every minute of the day. Needless to say, it was a perfect gift for him.

Another great source of entertainment and education, card games by Gamewright, which are available in many stores and online, can teach children and adults many valuable skills. Simply handling the cards helps develop fine motor skills, playing games teaches turn taking and other social skills, and the Gamewright games often address language skills. On Black Friday, I found various Gamewright card games on sale at the Kohl’s website that I thought would be fun and help increase Alex’s social and language skills. For example, Fitz It has the players name objects the fit the descriptions on the game cards, such as naming an object that “comes in a box” and “fits in a blender.” In Think ‘N Sync, players try to match answers to a given prompt, such as naming an ice cream flavor or a sport with halftime. This strikes me as a good way for people with autism to realize that other people may think differently than they do. In the Over Under Game, “The Game of Guesstimates,” players make their best guess and then check the correct answers to see if they were over or under in their estimates. For example, one of the six hundred questions is “How far away is Pluto?” This kind of trivia involving numbers is right up Alex’s alley, and he will probably memorize the answers, making him an even tougher opponent when we play along with Jeopardy every weekday.

Speaking of Jeopardy, for those who love game shows, as Alex does, Jeopardy and Wheel of Fortune have online merchandise stores. Last year, I found a Jeopardy baseball cap for him on their site, and he now wears that hat whenever he watches the show. I believe it’s his thinking cap. This year, I found a similar one for Wheel of Fortune so that he can wear that cap when he’s watching Pat and Vanna and contestants solving puzzles every night.

While finding gifts our children will enjoy and perhaps even use to learn important skills can be tricky, especially when they have autism and unique interests and needs, the Internet has made Christmas shopping much easier. The availability of helpful search tools and parents sharing valuable tips makes shopping for our kids less stressful. With Cyber Monday tomorrow, many online stores will offer discounts and my personal favorite––free shipping––so that parents can not only find gifts for their beloved children but also save some money, as well. Until the gift of healing arrives, we search for those gifts that help our children learn and, more importantly, bring them joy.

“Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.” Matthew 7:7

'Tis the Season

Alex loves the holiday season and eagerly anticipates this time of year every year. This week, we enjoyed a pleasant Thanksgiving dinner with my parents that he helped me cook. Yesterday morning, we were able to get together for breakfast at one of Alex’s favorite restaurants with my siblings and their families and my parents. Although being in a crowded restaurant in a group of fourteen people could have been daunting for Alex, he handled the situation quite well and enjoyed being with his grandparents, parents, aunts, uncles, and cousins.

After about an hour, however, I noticed the subtle appearance of the dreaded “claw.” When Alex is overwhelmed or not happy about something, he bends his wrist down into an acute angle and bobs it up and down to let us know he’s not pleased. I was pleased that he waved the claw under the table so that only I could see it. Using the techniques that I have learned from his behavioral therapist, I told him that I knew he was upset and asked if I could do anything to help him. He waved his claw again to make sure I had seen it and then quietly told me, “It’s too hard to remember the haircut calendar.”

The haircut calendar is Alex’s go-to excuse that simply means he’s overwhelmed. He used to tell us when he was upset that he “never wanted to use the typewriter again!” No one was making him use a typewriter; this was just something he blurted in frustration. However, we know better than to minimize his anxiety, so I calmly told him that he had just had a haircut two weeks ago, which seemed to calm him a bit. I also gave him the option of going home––not as a punishment but as a way to escape a situation that may be upsetting him. He insisted that he wanted to stay, and he was able to use calming skills so that he was able to snap out of whatever was bothering him and enjoy the rest of the time. While I wish Alex didn’t have to suffer from anxiety, I’m happy that he has learned to deal with being upset without causing a scene and that he can calm himself instead of escalating into a meltdown. This is a huge blessing.

Yesterday evening, I had to employ some calm down skills of my own. Alex needed to have blood drawn for his regular six-month lab tests to make sure he is healthy and to check that his medication levels are appropriate. Thankfully, he never minds having blood tests, and lab technicians always remark on what a good patient he truly is. My anxiety was with the check-in clerk who was rather insistent that he needed to fast for ten to twelve hours prior to these tests. However, Alex does better in the evening when he is calmest; therefore, we always do the testing in the evening. Although I explained this to the clerk, she made some remark about the tests being inaccurate and told me that she would tell the lab technician that he hadn’t fasted.

Even though I knew I was doing what was best for Alex, I somehow felt as though I was being chastised and wondered if I would get more flack from the lab technician. However, we soon discovered that the warm and friendly lab technician was an autism mom herself who completely understood why we did not have Alex fast prior to the test. She explained that she never made her son fast before tests, either. I prayed for a sympathetic lab technician and was given an empathetic one who told us to ask specifically for her by name whenever Alex needed a blood draw. Not only did she enthusiastically praise him, but she also gave him apple juice as a reward for his bravery. As we chatted with her afterward, we were thankful to have someone who completely understood our situation. That was a huge blessing.

Earlier in the week, Alex had been talking with his behavioral therapist who was asking him about his favorite times of the year. He explained that his favorite month was December because Christmas and his birthday are in December. He went on to tell her that Christmas is his favorite holiday. When she inquired why, he immediately responded, “Because it’s Jesus’ birthday!” Of course, I was delighted by his answer, as was she.

As I put up Christmas decorations over the past few days, I’ve been trying to remember to savor the effort instead of resenting the extra work. I have decided that I’m going to do things that bring joy. My mom had asked Alex what his favorite decorations were, and he told her, “The cousins’ stockings.” Ironically, I had not yet put up the dozen small stockings with his cousins’ names on them, so he was remembering them from last year. In fact, I was debating about putting them up at all because it was one more task to do. However, once I discovered that they were his favorites, I immediately hung the stockings on our stair railing because they bring Alex joy, which brings me joy.

After I finished hanging our huge assortment of ornaments on our Christmas tree yesterday, Alex carefully surveyed my work, smiling as he studied the ornaments. When I asked him what he thought and what grade he’d give me, without hesitation, he enthusiastically told me, “A+!” Certainly, that high praise made the effort worthwhile, but his joy was an even greater reward. Most of all, I’m thankful for my son who reminds me that the true importance of Christmas is finding joy and celebrating the birth of God’s son. What greater blessing could there be?

“You will conceive and give birth to a son, and you will name him Jesus. He will be very great and called the Son of the Most High. The Lord God will give him the throne of his ancestor David.” Luke 1:31-32

Gifts

 

In the family photograph taken a few days ago on Christmas night, Alex is easy to spot. Among the two grandparents, three siblings and their three spouses, five cousins, two nieces’ boyfriends, and a little dog, only Alex and the dog are not looking at the camera. With Ed’s hand on Alex’s shoulder, my right arm around his waist and my left hand holding his left arm, we make certain that he doesn’t suddenly leave the group before the camera timer goes off and snaps the picture with him walking away. Although it would be nice if he were focused and smiling and free of Ed’s and my grasp, we are pleased he is there. Last year was the first time in many years that the three of us could join the rest of the family for a Christmas celebration, and despite all the confusion that fifteen people and a dog can bring, Alex remained calm and pleasant the entire evening. This is a gift.

On Monday, we took Alex to a new family doctor for a regular check-up. In the past few years, we have taken him to various family doctors because some have taken other jobs out of town and others have refused to take our health insurance. Each time we start with a new doctor, I have to recite Alex’s medical history, explaining how various aspects of autism, including gluten and casein sensitivities, candida overgrowth, and heavy metal poisoning, have affected his health. We liked the new doctor’s manner and his interaction with Alex, who was amazingly patient (and an amazing patient) as the doctor carefully assessed his medical history and recent blood test results and then thoroughly examined him.

Pleased with how well this first appointment had gone and what a positive first impression Alex had made, we were content to leave once we had asked and answered questions. However, the doctor turned to Alex and asked if he had any questions. Because Alex usually relies upon us as his legal health care representatives to communicate for him, we were surprised to hear him speak up and ask how long it would take for his toenail to heal. Taking Alex seriously, the doctor had him take off his shoe and sock, carefully examined the toe, and told him about three months, which satisfied Alex. Not only had Alex sat through the entire appointment without becoming anxious about how long it was taking, but he had also become an active participant in the process. This is a gift.

Later that afternoon, he also had a regular six-month appointment with his psychiatric nurse practitioner who oversees his medications for anxiety. Since she has taken care of him for nearly four years, we feel comfortable with her and expected a routine appointment because we knew his blood tests had all shown normal results. However, we didn’t anticipate having to sit in a crowded waiting room for nearly an hour. Wondering whether Alex had used up all his patience during the morning appointment, Ed and I tried to keep him entertained with a book we had brought about—of all things––time. While the two of us became more annoyed about having to wait, Alex remained remarkably calm. This is a gift.

After we were finally ushered from the waiting room to her office, Alex once again showed the progress he has made by answering all of her questions and relying less upon us to speak for him. Despite computer problems that meant she had to write all of his prescriptions by hand instead of the much faster electronic method, Alex sat patiently. When it was time to leave, we thanked her, and Alex walked toward her. Thinking that he just wanted to see what was on her computer screen, Ed and I were pleasantly surprised that he offered his hand to her for a handshake (As usual, he mistakenly extended his left hand instead of his right hand, but still this is progress in his social skills!) and politely said goodbye. This is a gift.

On Christmas Eve, Alex indicated that he wanted to go to church, as we had last year for the first time in many years, mainly because his cousin was singing in the choir. Like last year, we were pleased that he sat quietly yet seemed to enjoy listening to the choirs sing as well as watching children on the stage listening to the Christmas story. This year, as he smiled and swayed to the familiar carols, he also watched the lyrics projected on the screen at the front of the church. And then, he began to sing along. This is a gift.

On Christmas night, as we prepared to leave the family gathering, Alex hugged my parents with his typical loose arms and with his head leaned toward the other person’s shoulder, and then he purposefully headed toward the fireplace. Because Ed and I are always on guard, we followed on his heels, making sure that he wasn’t going to harm any fragile decorations that may have caught his eye. Then he leaned down and gently patted the head of my brother’s little dog who was resting there. Alex, who never pays much attention to animals, apparently wanted to say goodbye to the dog, the only other one in the family photo not looking at the camera. We thought he was oblivious to her presence, especially since she was lying in the corner of the room, but he had noticed her and wanted to show affection to her before leaving. This is a gift.

In the day-to-day busyness of life, especially life with autism, we may not always notice the little things. Yet, this week Alex revealed that he continues to make progress, and God revealed that He is continuing to heal Alex. How thankful we are for these precious gifts!

“Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.” Galatians 6:9

Fear Not

 

As mothers, our most important task is to raise our children to be happy, healthy, and independent. Consequently, one of our greatest fears is dying before we accomplish that goal. When our children have disabilities that make them rely upon us more, we worry about who might care for our children––even when they are adults––if we were not there to do it ourselves. However, our faith tells us not to fear because God already has everything figured out.

Yesterday, I read an emotional article about a young mother who passed away last week, leaving behind a husband and young daughter along with a letter she left for friends and family. When her husband posted this letter on Facebook a few days ago, her words went viral, shared thousands of times and capturing the attention of the mainstream media as well as social media. NBC Chicago entitled the story “Wisconsin Mom Who Died of Cancer Writes Heartbreaking, Hilarious Letter.” [To read this article, which includes a link to her letter, please click here.]

Certainly Heather McManamy’s courage in facing her death is admirable, but I failed to see what the media described as hilarity. Yes, she had some humorous comments in her letter, but I was more struck by the heartbreaking nature of her words. Even more than the sorrow of leaving behind her little girl, Brianna, I felt heartbroken that she did not seem to have faith in God when dealing with this greatest fear mothers face.

She states: “Whatever religion brings you comfort, I am happy that you have that. However, respect that we are not religious.” While I respect her candor that she was not religious, I wish for her sake and her family’s sake that she had had faith, which her letter seems to indicate that she does not. I think perhaps faith could have brought her comfort as she dealt with cancer and facing death and leaving her loved ones behind. Because I have not walked in her shoes, however, I don’t know that for certain.

What was especially heartbreaking from my perspective was that she does not want anyone to tell her daughter that she went to heaven. In her letter, she requests, “Please, please, please do not tell Brianna that I am in heaven. In her mind, that means that I chose to be somewhere else and left her.” She goes on to say, “Because, I am not in heaven.” I must respectfully disagree with her decision because I believe that knowing that our loved ones are in heaven provides comfort rather than confusion, even for children.

While Alex has been mostly spared of having to deal with the loss of loved ones in his life, he does talk about heaven and people whom he knows are there, including his beloved childhood doctor, his grandfather whom he barely remembers, and his most-admired U.S. President, Ronald Reagan. Moreover, he looks forward to going to heaven someday with anticipation because he indicates that he has a lot of questions he wants to ask God that he can’t find in books or on Google. Somehow I think he and God will have some fascinating conversations one day.

Alex’s complete and confident trust in God allows him to face the future mostly fearlessly, which comforts me as his mother. Last week, he awoke in the wee hours of the morning in a full-blown panic attack, something that has not happened in years. (The next day, Ed and I decided that the combination of dairy-free and gluten-free birthday cake and ice cream along with soy egg nog was not a good snack ahead of bedtime, and we decided to limit his evening sugar consumption to prevent further nighttime meltdowns.) Even in the midst of his adrenaline surge in which he shook and muttered about not being able to count to infinity, Alex knew to seek God’s help along with ours.

With his overly quiet voice, Alex rarely yells, but in the midst of his panic, he kept crying out, “Need to talk to God! Need to talk to God!” As Ed and I tried to calm and reassure him, we reminded him that God is always listening and that he can pray anytime to talk to God. While this isolated incident was upsetting because we hate to see Alex so distraught, we felt comforted that he knew what he needed to become calm: he just needed to talk to God. His faith was rewarded, and God calmed the storm within Alex so that his anxiety disappeared, and he could resume a peaceful sleep.

As Alex turned twenty-four last week, I assessed my work as his mother over the past two dozen years. Yes, he is happy and basically healthy, with the notable exception of autism, but he still has a way to go to be independent. However, as I began thinking about the tremendous strength his faith in God gives him, I felt a sense of accomplishment for teaching him what is most important in life. If something were to happen to me, he would have his faith to carry him, and he would know that he would see me again in heaven. Maybe it’s not as important that we teach our children to be independent as to teach them to depend upon God always, especially when life becomes overwhelming.

With the imminent arrival of Christmas this week, Alex and I have faithfully been counting down the days on our Advent calendar. More than most, he knows the true significance of the holiday, reminding us it’s Jesus’ birthday and looking forward to going to church on Christmas Eve to celebrate. Despite autism, Alex can fathom the significance of Christ’s birth, knowing that his Savior guarantees the ultimate reward in heaven. Consequently, we need not fear troubles in this earthly life, knowing that because God’s plans are good, indeed, we can celebrate with great joy.

“And the angel said unto them, ‘Fear not, for behold I bring you good tidings of great joy which shall be to all people. For unto you is born this day in the City of David, a Savior, which is Christ the Lord.” Luke 2:10-11

Autism Holiday Shopping

 

Yesterday I began my annual quest to find the perfect birthday and Christmas gifts for Alex. Since his birthday falls nine days before Christmas, the importance of this adventure becomes double as I seek to find items that will not only thrill him for his birthday but will also keep him amused until the highly anticipated Christmas morning. A primary factor in finding these gifts is that they are not dangerous. Over the years, I have rejected toys for the following reasons: (1) toys with small pieces (choking hazard because he chewed on things until he was a teenager and stepping hazard for me because he left things all over the floor for me to find painfully when barefoot), (2) toys that were never intended to be thrown but would shatter if used incorrectly or would do property damage to things in their pathways or would hurt when hitting their intended targets––Ed or I––if hurled by an angry Alex, or (3) toys that for some strange reason he found upsetting (e.g. the “Don’t Like Elves!” phase of 1998). Thankfully, for nearly two dozen years, I have been mostly successful.

This week I read an entertaining essay on the Thinking Moms’ Revolution blog [To read this article, please click here.] entitled “The Great Autism Gift Scramble” that discusses the dilemma we autism moms face every year for our children’s birthdays and Christmas. Specifically, she describes trying to locate a copy of her child’s favorite Disney video Aladdin and the frantic search that ensued. In addition, she explains the “create a gift” problems that arise when children request something unique, such as “the dinosaur that talks and is pink polka dotted,” and she wonders whether she didn’t quite understand what the child wanted or whether the child had imagined the item or whether her child was simply messing with her. Nonetheless, she faithfully attempted to hunt down those desired objects. Last year, her daughter, who is interested in classic Hollywood, requested a movie star nutcracker, sending this devoted autism mom again on a wild goose chase to find the perfect gift. As she explains, “I repeat: you will do anything for them. Besides they deserve this tiny bit of happy.”

Similarly, I read a news article this week about an autism mom in Canada whose twelve-year-old son is obsessed with only the primrose-colored Crayola markers. [To read this news report, please click here.] If he cannot find his precious primrose markers, he goes into meltdown mode. As his mother, Stacey Haley, explains: “No primrose means hell in my household.” After making a plea for people to send her primrose markers, she received packages from around the world containing primrose markers. In addition, Crayola heard her story and also sent her primrose markers; therefore, she has requested that people no longer send markers anymore because they now have plenty. Overwhelmed by the generosity of strangers, she noted, “What started as a little ask for my son has turned into a movement of supportive communities who have gone out of their way to make a difference in the life of our family.”

Fortunately, Alex has not asked for anything elusive, unusual, or nonexistent this year. A few years ago, he wanted old calendars for Christmas, which taxed my brain until I thought about old calendar towels. Then I discovered the magic of eBay, which connected me to people who apparently hoarded antique linen calendars until deciding to sell them to crazy autism moms like me. Now he has a collection of towels from various decades of the 1900’s. Of course, he has moved on from that obsession, and the highly sought old calendars now sit folded in a box as a memory of Christmas Past.

This year, when asked what he wants for his birthday and Christmas, Alex has no requests. I specifically asked him the other day what he wanted when Ed’s sister asked me to ask him so that she could fulfill a wish. Even reminding him that she could track down something in New York that he could not find here, he still was noncommittal, asking me, “What would be good?” With no help from him, I suggested that she send him a gift card from Barnes and Noble so that he could pick out books when he was more decisive.

Of course, this did not solve my problem of what I should get him. Yesterday, I set out in the early morning hours, armed with small envelopes labeled individually with store names and their opening times along with notes about some items to look for and coupons for discounts (and realizing that Alex did, indeed, get his OCD from me). With my Skechers Go Walk sneakers and my Fit Bit Zip to record my steps, I was ready to walk to the ends of the earth (or at least through selected stores in my area) to find perfect gifts for Alex. After four hours and 2.53 miles (according to my Fit Bit Zip), I felt triumphant.

As I scoured the stores’ shelves, I realized that even though Alex is a young adult, most of the same criteria apply for the perfect gift now as they did when he was younger although thankfully he doesn’t throw things in anger anymore. The teacher in me looks for gifts that are educational, items that will encourage developing his speech, language, fine motor, and social skills, which means I spend a lot of time looking at books and games. Knowing his love of sports and music, I look through the fans’ section for his favorite teams and search through the CD’s for something new for his listening pleasure. If in doubt, I always choose something in red, his favorite color. Of course, I also have to keep the annual tradition of getting him at least one calendar, a new Old Farmers’ Almanac, and the latest edition of the World Almanac, which he loves so much that he literally sleeps with it.

While I wish that Alex could give me some guidance about a gift he would really like this year, I suppose I should be grateful that he’s not asking me for something nearly impossible to find. In addition, I think his lack of gift requests probably means at least one of several possibilities:
He trusts me completely to choose gifts he will like.
He has truly become a man, and we all know that men never give good gift suggestions (or at least I have learned this from his father and my father).
He has everything he wants and needs in life, so anything else is just a bonus.
He is totally content with his life and really doesn’t need anything to make him any happier.
As I watched him study with delight the ornaments on our Christmas tree this week, I think that the latter reason is probably the most likely one. After all, as Alex reminds me, Christmas is Jesus’ birthday, and that’s the best reason to celebrate. Certainly, we also think Alex’s birthday is pretty special, and as we celebrate the birth of God’s son, we also thank God for the birth of our son and for all that He has given us.

“Yes, you will be enriched in every way so that you can always be generous. And when we take your gifts to those who need them, they will thank God.” 2 Corinthians 9:11

While We Wait

 

Today marks the first day of Advent, the season leading up to Christmas. In the Christian Church, Advent, from the Latin word adventus meaning arrival, is a time of anticipation, waiting for the celebration of the arrival of Baby Jesus. In the business world, this first day of Advent comes between the significant shopping days of Black Friday and Cyber Monday, and merchants await the profits to be gained from eager holiday shoppers. For most people Advent is a time of waiting for Christmas marked by a flurry of activity in preparation for this important holiday.

Like many people, Alex eagerly anticipates Christmas, his favorite holiday, counting down the days on the calendar. Like me, Alex is not by nature a patient person. However, he relies upon his beloved numbers and measuring tools of clocks and calendars to help him deal with waiting. Moreover, he has adopted a philosophy about the future, often telling us: “Wait and see.”

This week, we have had our patience tested in situations where we had to wait. On Friday, Alex’s ever-punctual music therapist was late for the first time because he was involved in a meeting that ran longer than he had anticipated. Although he called to let us know he would be late, I knew that Alex was becoming more anxious every minute he had to wait. Checking his watch and the clock on the wall, Alex was patient at first, but as time passed, he became more and more concerned whether his music session would ever happen. Adding to his frustration was that he was looking forward to singing Christmas songs that his therapist had promised the previous week. As I talked him through his anxiety, I gave him the choice to leave or stay, and he chose to stay. The wait was worth the effort because when his therapist arrived, they were able to sing the songs Alex had been waiting to sing all week long. Of course, Alex’s first request was “The Twelve Days of Christmas,” a carol about waiting for the good gifts to arrive.

This weekend, as I ran some errands, I also had to muster up my own patience, as the official start of the Christmas shopping season brought more people out seemingly to get in my way. As I waited in my car for people who acted as though they’d never seen green traffic lights before, waited for people who seemed to want to stand endlessly in front of items I needed to buy, and waited in lines to check out behind people who couldn’t make decisions about how they wanted to pay, I took deep breaths and tried to keep my peace. Knowing that the month of December will be filled with these moments of waiting, I found myself questioning: What do we do while we wait?

A quick concordance search of the Blue Letter Bible online shows that the word “wait” appears in 70 verses in the New Living Translation of the Bible and in 101 verses in the King James Version of the Bible. As I scanned through these verses, I noticed that not only are we told to wait, but we are also told how to wait. The verb “wait” is often followed by the adverbs “patiently” and “quietly.” Scriptures also tell us to wait “confidently,” “eagerly,” and “with eager hope.”

Consequently, we know how we’re supposed to wait, but I still struggle with what I’m supposed to do while I wait. From the time Alex was diagnosed with autism, I have been waiting for him to get better, sometimes patiently waiting, but often times restless and frustrated when progress seemed slower than I thought it should be. To fill my time, I focused on autism research, seeking answers to my questions and trying to find ways to make Alex better.  When I find myself too focused on the future and the “what if’s” both positive and negative, I have to remember to live in the present and have faith that God has already figured out the future for Alex.

When I question Alex about future events, such as which sports team he thinks will win a game or what he thinks the weather forecast will be, he reminds me to watch for what the future holds by saying, “Wait and see.” Not only does he understand that waiting––even though he and I both dislike that process––is part of life, but he also holds anticipation for what is to come. Moreover, he has an expectation that waiting will bring a reward. To understand the value of waiting requires peace brought with patience along with hope bolstered by faith. Alex’s complete and unquestioning faith in God allows him to believe that if he waits, he will see something good, even if it’s as simple as being able to sing “The Twelve Days of Christmas” with his music therapist.

During this sacred yet busy time of Advent, I pray that I remember to be patient as I wait, knowing that good things will arrive in their good time. Just as certainly as I know that Christmas will arrive on December 25^th, I also know that Alex will get better in time. Trusting God, I will strive to wait patiently, quietly, eagerly, confidently, and with eager hope at what He has planned for Alex’s future, which I have no doubt will be something to see.

“Such things were written in the Scriptures long ago to teach us. And the Scriptures give us hope and encouragement as we wait patiently for God’s promises to be fulfilled.” Romans 15:4

Repeat the Sounding Joy

 

Yesterday, I read an anecdote written by an outstanding autism mom blogger whom I admire and respect that made me reflect on not only how far Alex has come over the years, but also how much I have learned from time and experience of being an autism mom. In her story, which she asked other parents to share online, she told of recently taking her young son with autism to get a haircut at a salon. When he began to squirm, the stylist told her that she could not cut his hair safely because she was afraid she might cut him. His mother explained that he has autism, and the stylist refused to cut his hair. Undeterred, the mom took her son to another salon, where a stylist successfully cut his hair and kept her son calm in the process. However, she was still angry that the first salon turned them away, citing discrimination because her son has autism and noting that parents of children with autism should not have to tolerate this kind of treatment.

The comments on Facebook that followed her story and response to what happened basically fell into three categories. Most people who commented were fellow autism parents who shared her anger and demanded action against intolerance toward children with autism. A few defended the actions of the first stylist, noting that she honestly explained her fears of hurting the boy. The third group shared their own bad experiences with their children’s haircuts that led them to find more patient stylists or more often to cut their children’s hair themselves. Had I made a comment, I would have fallen into that third category, the walk-away-and-move-on-with-life autism parent. After a few bad experiences with having Alex’s hair cut at the barbershop (through no fault of the barbers, who handled him remarkably well) when he was young and had sensory issues, I decided to learn how to cut his hair myself. Perhaps because we were not refused service, I didn’t feel the righteous indignation she described. Moreover, I tend to avoid confrontation and would prefer to walk away from uncomfortable circumstances than to make a point.

As I considered the story of the mom who wanted everyone to know that a stylist who could not cut her son’s hair denied him a haircut, I wished that she had focused on the positive outcome instead. Certainly, when anyone rebuffs our children, we feel anger that someone treats our children badly. As autism parents, we feel perhaps even greater indignation because our children’s disability makes their lives more difficult. On the other hand, over time I have found that people who walk away from our children are a blessing. In our experience, we have found that as professionals who worked with Alex have left for various reasons, their replacements were even better because they provided what he needed at that time. Those who cannot or do not want to work with our kids have no place in our lives. When they close the door, we look for the windows, the opportunities to find better alternatives. For her, she found a stylist who was willing and able to cut her son’s hair. For me, I decided to master a new skill, learning to cut Alex’s hair myself, which has made our lives easier and saved us a few bucks in the process. In addition, this tackling of something I didn’t think I could do developed my confidence so that I could take on other tasks, such as learning to give Alex vitamin B12 injections. Over the years, I have learned that nothing is wasted in life, or as the last line from one of my favorite movies An Unfinished Life wisely states: “And it looked like there was a reason for everything.” Often, the disappointments lead us to circumstances even better than we could imagine.

Several years ago, we realized that Alex couldn’t handle celebrating Christmas with the extended family. Although we tried everything we knew to make the family gatherings less overwhelming for him by giving him time and space away from the group, he found the experience upsetting. The last Christmas we celebrated as an extended family, we left with Alex and me both in tears, he in sensory overload and I in emotional overload that he was so upset. After that, we decided to celebrate Christmas at home with just the three of us, quiet and peaceful, yet disappointed that we could not be with the rest of the family. To ease the sense of loss, family would come to visit us in smaller groups that Alex could tolerate. While this compromise was the best solution for our circumstances, we hoped that someday we could celebrate with a family gathering on Christmas, as most families do.

Thanks to healing from medication, therapy, time, and answered prayers, Alex was finally able to enjoy a family gathering on Christmas this week. Instead of being overwhelmed by all the activity inherent when fourteen people and a dog are in the same room, Alex was happy to be with people he loves and who love him. Not only did he behave appropriately, but he also was content to be in a situation that used to upset him. After all these years, we finally had the family Christmas most people take for granted. While I was tempted to mourn for the lost years, wistful for what we had missed and what autism had taken from us, I focused instead on gratitude for what we had been given. Moreover, this Christmas has been even sweeter because we had to wait for that “typical” Christmas denied to us for so long. What was once bitter is now only sweet, and our joy is an even greater blessing, making us look ahead to the new year with anticipation and expectation that 2015 will be our best year yet.

“Instead of shame and dishonor, you will enjoy a double share of honor. You will possess a double portion of prosperity in your land, and everlasting joy will be yours.” Isaiah 61:7

Twelve Days of Christmas

When I was a kid growing up in the 1960’s and ‘70’s, long before online shopping was a common convenience, my parents had us look through Christmas catalogs from J. C. Penney and Sears to make our wish lists for Santa. My brother and sister and I would look over the catalogs in wonderment, and at some point, my mom would secretly phone in our family order, which my dad would secretly pick up at the stores downtown, allowing our belief in Santa to continue until we were a little older. While I’m sure that keeping all those items on the wish lists straight for three kids wasn’t always easy, at least we gave them ideas about what we would like to have.

In contrast, up until last year, Alex rarely gave us any suggestions about what he would like for Christmas, often answering our request for ideas by saying, “What would be good?” He gets that gift indecision honestly, as I suspect most males are terrible about providing ideas for gifts. In the twenty-five years I’ve been married to Ed, he has never offered any ideas about what he would like for a gift, leaving me to puzzle over what to get him. Nonetheless, I spend the month of December brainstorming potential gifts for both Alex and Ed and hope that I might come up with some presents they will like. Instead of viewing this process as an exercise in frustration, I see it as a challenge.

Since Alex has given me several good specific suggestions, he has made Christmas shopping for him pretty easy this year. As I was sorting through shopping bags this morning, getting ready to wrap gifts, I was reminded of a blog entry I wrote three years ago as an imitation of the Christmas carol “The Twelve Days of Christmas,” in which I substituted the things Alex would like to have at that time. [To read this blog entry, please click here.] Because his interests have changed a bit, I decided to update the list this year, a revised version of Alex’s Twelve Days of Christmas.

On the twelfth day of Christmas, my Alex asked of me:

An iPad Mini

To see the stars

A Rudolph ornament

A world records book

Listen to Amy Grant

A light-up toothbrush

A nutrition book

A Target gift card

A calendar

Three almanacs

Two board games

And a hot bath full of Epsom salt.

Although I appreciate that Alex can now express what he wants, I’m even more pleased that he understands the real reason for Christmas, explaining that it’s “Jesus’ birthday.” This year he has enjoyed looking through Christmas cards sent by family and friends, and his favorite seems to be the one from my sister (whose college degree in math and melodic voice make her “special” to him) and her family, who each signed the card individually. In fact, he carried off their card that proclaims, “Joy to the World” to his bedroom. Yesterday, I heard him humming loudly that old carol, “Joy to the World,” which brought tears of joy to my eyes. This Christmas, we are thankful for the joy Alex has found again, which brings us joy, as well. Indeed, “Repeat the sounding joy, repeat the sounding joy, repeat, repeat the sounding joy!” Merry Christmas and in the words of Charles Dickens’ beloved character from A Christmas Carol, Tiny Tim, “God bless us, every one!”

“…I bring you good news that will bring great joy to all people. The Savior—yes, the Messiah, the Lord—has been born today in Bethlehem, the city of David!” Luke 2:10

Christmas Newsletter

Recently a friend shared a Christmas newsletter another friend had sent enthusiastically detailing the events of the past year. While this annual tradition can simply be a way to summarize the family highlights, some use this opportunity to boast about their accomplishments. Of course, their children are the smartest, best-looking, amazingly athletic, most popular, and highly talented young people to ever walk the face of the earth. Certainly, parents should be proud of their children and their achievements, but I wonder if they ever stop to think how their gloating makes others feel whose children do not possess all the gifts theirs do. As an autism mom, I must fight feelings of jealousy toward parents who have typical children, let alone those who are extraordinary. Let’s just say that these bragfests do little to inspire the Christmas spirit in me.

One evening last week, after Alex had an especially good day, Ed commented that we appreciate little things that few others would really understand. For example, we have taken Alex shopping in crowded stores this past week, and he has shown great improvement with his impulse control, never reaching to touch anything, only looking at things he wanted to see, even keeping his hands behind his back to make sure he wasn’t tempted to reach for them. This is not a big deal for most people his age, but we know what an accomplishment this is for him. We simply measure success differently than most parents do. With that in mind, here is the newsletter I might write to review our year with a little tongue in cheek added because we try to find the humor in our situation.

This year, Alex made very good progress as he continued behavioral therapy. Despite having three different therapist changes in a matter of a few months (One moved out of state, the second one was promoted to a supervisory position, and now he’s working with the third one, who truly IS a charm.), Alex adapted nicely each time he found himself working with someone new. He has learned calming techniques to address his anxiety, and his therapists have been amazed that when he’s upset, he can count to ten not only in English, but also in Spanish, French, German, and (thanks to his second therapist) Turkish. By the time he finishes counting in all these different languages, he forgets why he was upset in the first place.

Despite all the various medications Alex takes, he is a trouper about swallowing all those pills four times a day. Moreover, he’s become somewhat of celebrity at the pharmacy, where the friendly pharmacists know us on a first-name basis. He’s like Norm on the television show Cheers, as they yell, “Alex” when they see him. I suppose they are pleased to see a frequent customer under the age of sixty-five for a change. Besides taking his medications nicely, he is also wonderful about cooperating for the regular blood tests needed to check the effects the medications have upon his system. When we tell him we are taking him to the lab, he eagerly hops in the car as though we were taking him to a sporting event because he thinks it’s fun to have blood draws. The kindness of the lab technicians where we take him regularly only adds to his enthusiasm for this activity most people dread.

After twenty-one and one-half years of being cavity-free, Alex finally had two small cavities that needed to be filled this summer. Because of Alex’s anxiety and sensory issues, his dentist opted to schedule this procedure under general anesthesia. Even though we had to get Alex up in the middle of the night so that we could report to the hospital, which is a hour away, at the scheduled check-in time of 5 A.M., he thought this was a great adventure because we were going to a city where he’d never been before. Thankfully, he came through the procedure nicely, and his favorite memory of the experience was watching stock market news on the television in his hospital room.

Aside from his renewed interest in the stock market this year, Alex has also enjoyed following gas prices, which have been at times a source of frustration for him (as they have been for most people). When he was younger, high gas prices would agitate him so much that we had to determine routes free of gas stations to avoid meltdowns in the car. This year, Alex finds following gas prices a pleasant pastime, especially when they are on a downward trend. He happily exclaims from the back seat, “Gas prices are lower!” In addition, he enjoys driving past a local gas station that has gone out of business, leaving an abandoned sign that advertises gas for nine-tenths of a cent, which he finds terribly amusing.

Although gas prices are cheaper this year, we did not go on vacation, as most families do. Because of Alex’s potentially unpredictable behavior, we once again opted for our typical summer of staycation, planning outings within a few minutes of home. Between visits to the Indiana Dunes, local parks, a nearby miniature golf course/arcade, grocery stores, the library, and other stores, we kept Alex busy and encouraged him to develop his social skills. He has become an expert at pushing shopping carts, to the point I’m thinking of having a bumper sticker printed that reads, “MY AUTISTIC KID CAN PUSH A SHOPPING CART BETTER THAN YOU CAN.” Unlike most of the customers at Walmart, Alex knows better than to leave his cart parked in the middle of the aisle, which is a social skill in itself.

Even though Alex didn’t make the honor roll, earn the team MVP, become Prom King, or perform a concert to a standing ovation, we are proud of him and all he has accomplished this year. Moreover, we are thankful for the many blessings we have enjoyed this year and the prayers God has answered. Every day, Alex continues to teach us the value of patience, reminding us to “wait and see,” and we have learned the importance of faith, hope, and love on this journey with him. My favorite part of the day, especially on the hectic days when patience is running low, is the quiet and peaceful moments saying bedtime prayers with Alex, who talks to God as his friend, believing and trusting that He will answer those prayers. May we all have Alex’s steadfast faith as we celebrate the birth of our Lord and Savior!

“May the Lord show you His favor and give you peace.” Numbers 6:26

Christmas Gifts

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With the Christmas rush behind us, we can take time to savor the season and appreciate the unexpected gifts we may not have noticed in the flurry of activities surrounding the holidays. Specifically, I am grateful for the following “gifts.”

For once, Alex actually gave me specific ideas about what he would like for Christmas. In years past, he would occasionally make a suggestion or two, but this year, he seemed to have some definite ideas about what he wanted. One request was a Chicago Cubs blanket, which was a great idea because his medications make him feel cold a lot of the time, and he is often wrapped up in a blanket to keep warm. A quick Google search enabled me to find a nice fleece blanket with the Cubs logo at Bed Bath and Beyond, which my mom picked up for him and gave him as a present from my parents. This gift has been put to good use this cold week, as Alex wraps himself in the soft warmth of the blanket.

Besides the blanket request, Alex also asked for some DVDs; he wanted the entire Shrek collection of movies and a movie about football. This led me to online shopping at Amazon, where I found all four Shrek movies in a nice set and a DVD on the history of the Chicago Bears. What Alex didn’t know was that I had made a great Black Friday purchase from Target of a portable DVD player on sale for half price so that he can watch DVDs in his room. Interestingly, Alex has not had a lot of interest in watching movies the last few years even though he loved watching Disney movies when he was little. Recently, he decided he wanted to watch the Harry Potter movies, and we were surprised how well he was able to focus upon the plot and enjoy the movie. This improvement in his attention span is a gift in itself to us.

Another pastime Alex has enjoyed lately is listening to music. Throughout the month of December, he and I listened for hours on end to Christmas CD’s. While we have several Christmas music CD’s by country singers that he knows and likes, he decided that his favorite one was my Amy Grant Christmas CD. In fact, he’s now such a fan of hers that he says she’s his favorite singer, and he’s requested to listen to her other CD’s that I have. Had I recognized his devotion to her, I would have gotten him one of her CD’s for Christmas. Instead, I went with his previous favorite singers and bought him the most recent CD’s from Alan Jackson and Taylor Swift, both of which he likes, as well. Fortunately, Alex and I share similar tastes in music, so listening to music is a pleasant activity that we can do together.

Aside from the various typical gifts, I’m also thankful for other improvements in Alex. One of these is the reemergence of his sense of humor.  When he was overwhelmed with anxiety, he seemed to have lost his quick wit, which also seemed dulled by the medications to help his anxiety and made him sleepy. Because he’s been more alert lately, he’s more observant and better able to communicate. A couple of weeks ago, Alex was talking to my brother and asking him how much he weighed. When my brother told Alex his weight, Alex was thrilled to have that information. Although Alex weighs forty pounds less than my brother, when asked how much he weighs, he immediately deducted two pounds from my brother’s weight and claimed that’s how much he weighs. He was delighted when we all laughed at his comment, and it was nice to see him enjoy making a joke.

Another positive change is Alex’s desire for grooming. Last year, he refused to cooperate with getting haircuts and shaving, perhaps because these activities overwhelmed him with sensory stimuli. As a result, he looked like a shaggy bum for several months. Now, not only does he allow me to cut his hair and shave him, but also he seems to enjoy being groomed and even asks me for haircuts or shaves. He looks so much better with shorter hair and clean-shaven, and I’m pleased that he lets me keep him well groomed.

Probably the most noticeable difference in Alex is that he welcomes my presence. Last year, he much preferred Ed’s company to mine, even telling me bluntly at times, “Mommy is leaving now!” Lately, he likes hanging out with me, listening to music, watching television and videos, and just talking. I’m pleased that he seems to be coming out of the fog and is able to answer and ask questions clearly so that we can have conversations again. Of course, there can be too much of a good thing, and he’s currently a bit clingy, wanting to know where I am at all times, which at times feels a bit like I am being stalked. While I’m glad that he likes my company, I’m hopeful that he will soon be less of a Mama’s boy so that he can be more independent in entertaining himself, and I can go about my activities without always providing him a detailed report of where I’m going and what I’m doing. In the meantime, I remember that he won’t always want to hang around with me, so I need to enjoy his adoration while it lasts.  Truthfully, I’ll be glad when he’s not as fond of me, though.

Reflecting on this Christmas season, I’m thankful for the joy we can now see in Alex’s eyes when he’s engaged in his favorite activities, the love that has carried the three of us through good times and bad, and the hope that Alex will continue to get better and better. In the words of an Amy Grant Christmas song that is a favorite of Alex’s and mine: “Love has come for the world to know, as the wise men knew such a long time ago. I believe that angels sang that hope had begun when the God of glory, who is full of mercy, sent His Son.” And in the words of Charles Dickens’ beloved character Tiny Tim, “God bless us, every one!”

“Now may the God of hope fill you with all joy and peace in believing.”  Romans 15:13