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

National Family Caregivers Month

 

November is National Family Caregivers Month, and for many parents of children with autism, round-the-clock caregiving continues day after day, month after month, and year after year––long after those children become adults. Because society is not prepared to deal with the thousands of adults with autism who require special care, the vast majority of these adults with autism depend upon family members to take care of them. Those adults with autism unable to perform daily living tasks independently, such as grooming and preparing meals, rely upon family caregivers to meet those critical basic needs. Although support personnel, including therapists and respite care providers, offer assistance, the bulk of care falls upon family to assure that the adult with autism is kept safe, happy, and content.

The Caregiver Action Network provides a helpful guide online, “10 Tips for Family Caregivers,” that may assist parents caring for their children with autism. [To read this article, please click here.] These excellent suggestions are summarized as follows:

1.  Seek support from other caregivers.

2.  Take care of your own health

3.  Accept offers of help and suggest specific things people can do to help you.

4.  Learn how to communicate effectively with doctors.

5.  Take respite breaks.

6.  Watch out for signs of depression and don’t delay getting professional help.

7.  Be open to new technologies that can help you care for your loved one.

8.  Organize medical information so that it’s up-to-date and easy to find.

9.  Make sure legal documents are in order.

10. Give yourself credit for doing the best you can in one of the toughest jobs there is!

Two of these tips deal with organization, specifically organizing medical information and legal documents, and I have found this to be very important. I have a portable file box organized with important documents dealing with insurance, medical information, Social Security, and other paperwork for Alex we may need. When we were recently successfully pleading our case to keep him on our family health insurance policy, finding necessary documentation was simple because I had all of this information easily accessible in the file box.

In addition, I have organized two portfolio folders of information: one for his services, such as behavioral and music therapy and respite care, and one for medical information. These folders are very helpful during quarterly meetings with his support staff and whenever we take him for medical tests or doctor appointments. In the medical folder, I keep updated lists of his medications and supplements, as well as a list of all of his health care providers and their addresses and phone and fax numbers, which comes in quite handy. Also, I keep a copy of his legal paperwork naming us as Alex’s legal health care representatives, which has proven extremely valuable over the past few years so that we have legal power to make decisions regarding Alex’s health care and to discuss medical issues with his doctors now that Alex is an adult. Of course, the tip about communicating effectively with doctors is also critical because we must advocate for our children so that they get the best health care possible. Often, this requires medical research ahead of time so that we know as much as possible about our children’s condition. Furthermore, many doctors do not know much about autism, and as parents, we may need to teach them things they never learned in medical school to ensure our children receive proper medical care.

Along with organization, seeking help is another common theme in this list of useful suggestions. Finding others who are in similar situations is valuable, not only because they can provide empathy, but also because they often can offer excellent suggestions and recommendations. When Alex was younger, I belonged to two online parent support groups where I learned a great deal about autism and developed friendships with autism moms that have lasted through the years. Currently, I belong to three Facebook groups for parents of special needs children who live near me, and we often share ideas, recommendations of professionals, and tips to help each other care for our kids.

While accepting offers of help is a great idea, it’s one that I am personally not good at doing. Never wanting to bother other people and being too proud to ask for help, I try to be as independent as I can. However, I am thankful that my husband and mother are incredibly supportive and willing to step in if needed. Recommending that caregivers suggest specific things others can do to help is a terrific tip because people often want to help but don’t know what to do. While parents may not feel comfortable having others watch their children with autism, friends and family could help by running errands, picking up groceries, or even simply praying for them. If good respite care is available, parents can use this resource to give themselves a break from caregiving and to allow their children to engage with a caregiver other than their parents.

Another aspect of help is new technology. One of the most valuable newer devices is the iPad, which offers many apps useful to people with autism. Some of these allow nonverbal children and adults with autism to communicate easily for the first time, which is valuable for them and their caregivers. Getting Alex an iPad Mini for Christmas a few years ago was one of the best gifts we ever gave him. He frequently listens to music on it, which relaxes him, and he satisfies his curiosity by looking up dozens of questions every day. Moreover, he can entertain himself by watching videos he enjoys and by playing games.

Finally, another theme found in these tips is caregiver self-care. We need to take care of our children’s parents so that we can be physically, mentally, and emotionally at our best to take care of them. Knowing that I may need to care for Alex for a long time, I have been making changes to ensure I’m as healthy as I can be. Certainly, caregiving is quite stressful, and at times, I have needed to deal with my own anxiety so that I don’t increase Alex’s anxiety. By eating healthier, taking vitamins, getting as much sleep as possible, making time to do things I enjoy, and finding emotional strength through my faith in God, I am better equipped to take care of Alex. Although I admit that I have trouble following the last tip about giving myself proper credit because I am my own worst critic, I am blessed that Ed and my mom constantly encourage me with praise for my efforts. When I doubt how I’m handling a situation regarding Alex’s care, they reassure me that I’m doing the right thing. Perhaps one day I will see myself as competent as they assure me I am.

Caregiving for a family member requires energy, devotion, and unconditional love; however, organization, help from others, and self-care can make this crucial task easier. While other people may not realize how much we do in caring for our loved ones on a daily basis, we know that we are serving God as we love and care for those He has entrusted to us.

“Care for the flock that God has entrusted to you. Watch over it willingly, not grudgingly––not for what you will get out of it, but because you are eager to serve God.” 1 Peter 5:2

Proclamations

 

Since autism significantly impairs Alex’s speech, he tends to speak quietly and hesitantly, unsure of his ability to communicate effectively. We often have to ask him to repeat what he has said––sometimes because we didn’t understand him and other times because we didn’t hear him. However, sometimes he suddenly bursts forth with proclamations of something he wants to tell us––observations on life, patterns he’s noted, or some fact he finds especially interesting––announcing these statements clearly and confidently.

For example, yesterday I was showing Alex a large foam cut-out of a hand my dad had gotten for him at a recent Valparaiso University basketball game. While most so-called foam fingers have only the index finger raised as a symbol of being number one, this hand had two fingers raised. When I asked Alex if he knew why it had two fingers raised instead of one, he immediately explained that the fingers were in the shape of a V for Valparaiso.

Then I could tell that his mind was processing something from our discussion. Suddenly, he announced, “V is a somewhat rare letter.” As I showed interest in his statement, he went through all the letters of the alphabet, informing me which letters were “common,” “rare,” and “somewhat rare.” Clearly, he has watched enough Wheel of Fortune to determine the commonality and rarity of each letter of the alphabet as he confidently ascribed a value for every letter from A-Z. Later, he informed us, “There are about four thousand words that start with V.” I’m not certain whether he knew this fact or had looked it up online, but he wanted to share this bit of trivia with us.

Another announcement Alex likes to make is his assessment of people’s voices on television. He is fascinated by people’s voices, especially if they are deep or high pitched. Moreover, if he finds a person’s voice doesn’t meet with his expectations, he feels a need to share that anomaly with us. For instance, he’ll come running to tell us excitedly, “It’s rare for a kid to have a deep voice!” Lately, he has a fascination with older people and what he has dubbed “old man’s voice” and “old lady’s voice.” However, he’s even more fascinated when elderly people don’t have the qualities of the “old man/lady voice.” The other day, he enthusiastically shared that he had seen on television “some 93-year-old man who didn’t have an old man’s voice.” I’m not sure who would have been happier, Alex, who saw the old man with a young man’s voice, or the 93-year-old who had what Alex deemed was a young voice.

In addition to announcing his observations about the world around him, Alex also likes to proclaim changes he has noted in himself. Not surprisingly, he measures time by his own voice changes, telling us, for example, that in 1993, he had a “young voice.” (Previously he referred to his childish voice as a “little voice,” but has since changed the wording. If we use the phrase “little voice,” he will correct us, making sure we use the new lingo of “young voice,” which he now has decided is more accurate.) As with the “old man/old lady voices,” he will often come running to find us when he’s watching television and hears a particular date to announce the status of his voice at that particular year in time. Probably because we respond to his enthusiasm with praise, happy that he wants to tell us something, he never tires of making these announcements.

After bumping his knee last week and winding up with a bruise, Alex realized that certain motions were painful and compensated by favoring his other leg. So that he won’t obsess on an injury, we keep an eye on the healing without saying much to him. Perhaps because we don’t talk about whether it still hurts or not, Alex will happily inform us when he notices he is feeling better. The other day, he must have recognized that his bruised knee had improved because he suddenly exclaimed, “The knee is all better now!” Not only was I glad the pain had subsided, but also that he could clearly express his joy that he noticed his knee had returned to normal.

Maybe the most out-of-the blue announcement he’s made lately came yesterday evening when he proclaimed: “We can go to Chesterton now!” Chesterton is the nearby town where Alex has enjoyed going to restaurants. However, since his loss of appetite started in May, he hasn’t wanted to go to restaurants because he hasn’t felt like eating as much as he used to. The thought of going to a restaurant, which used to be one of his favorite things to do, seemed to bring anxiety, so we haven’t been to Chesterton for a while. We’re hoping that his proclamation yesterday means that he’s willing to try dining out again and perhaps he senses that his appetite is improving. Fingers crossed and prayers said, we’re hopeful that Alex’s announcement means that he is getting better. Of course, we know that moving forward will take some time and patience, but we see his announcement as a good sign that he is making progress. We’ll know better once we make that return trip to a Chesterton restaurant.

Although people with autism stereotypically do not seem to care about sharing interests or enjoyment with others, Alex clearly likes to share what he’s seen, heard, and learned. Since approximately half of people with autism are nonverbal, we know how blessed we are that Alex can speak and tell us what he’s thinking. Moreover, we’re delighted that he wants to interact with people and share his thoughts, feelings, and ideas. By encouraging him with enthusiasm and praise, we hope that he continues to develop his language and social skills, knowing that he has a unique perspective and unbridled joy to offer those who are willing to listen to him.

“I will tell everyone about Your righteousness. All day long I will proclaim Your saving power, though I am not skilled with words.” Psalm 71:15

Waiting Time

 

Around here, we live by the clock, the calendar, and the schedule. For Alex, running on time, knowing what day it is, and being prepared for activities ahead are crucial to his daily existence. If not for the numerous clocks throughout our house and his wristwatch, calendars easily accessible, and his daily schedule posted on the refrigerator, Alex would become extremely anxious waiting for whatever was next. To be honest, he gets that from me, who also thrives on the comfort of clocks, watches, calendars, and schedules.

In fact, we can tell when Alex is more anxious because he will consult his beloved time keepers more often, making certain that everything is running on time and making sure he knows what’s happening next. Unfortunately, life doesn’t always go exactly as planned––people may run late, appointments may change, and a power outage might require the resetting of the electric clocks.

Sometimes reality doesn’t jive with our expectations, which can lead to frustration and disappointment. For example, as I changed our calendars from October to November last week, I realized that Alex’s loss of appetite has now lasted six months. When he began eating fewer foods in May and self-limiting his diet that had always been excellent to only a few items, I thought this phase would last only a few days, maybe a few weeks.

By the end of May, Alex still had not returned to his usual varied diet and healthy appetite, so we took him to the doctor, who diagnosed him with thrush. Certainly, the pain thrush can cause in the mouth and throat would explain Alex’s sudden resistance to eating, and we thought that the anti-fungal medication would clear up this yeast overgrowth and make him want to eat again within a few weeks.

However, this bout of thrush has been a doozy, and two more doctor visits and more rounds of anti-fungal medication were warranted. So tenacious is this yeast overgrowth that his doctor has him on maintenance doses of medication twice a week through February. Even though his mouth looks better and the secondary indicators of yeast overgrowth––dandruff and acne––have improved, we still occasionally see some behaviors associated with thrush, namely irritability and increased anxiety. Moreover, Alex still hasn’t returned to his normal eating habits.

Currently, he drinks smoothies made with Rice Dream nondairy ice cream, coconut milk, strawberries, and protein powder for breakfast. For lunch he eats applesauce and raspberry coconut milk yogurt. For dinner he eats applesauce and scrambled eggs with spinach and herb seasoning. For an evening snack he drinks a lemon Italian ice and another strawberry smoothie. While this makes meal planning for him simple since he’s basically eating the same things he’s eaten for months, we would prefer that he return to his previous diet where he ate nearly everything except popcorn. Moreover, one of his favorite things to do was to eat at various restaurants, but his limited diet has kept him from this favorite family pastime.

On Wednesday, realizing that another month has passed without Alex’s appetite improving, I felt frustrated, disappointed, and overwhelmed––three emotions I try to avoid. Why isn’t Alex’s appetite back to normal after all these months? Why won’t this thrush go away for good? Why does everything seem to take so long? What else do I need to do to make him better? As these questions raced through my mind, I could only answer the last one. I remembered the phrase I hear Alex say so often: “Wait and see.”

As Alex’s mom and advocate, I constantly seek ways to make him and his life better. However, sometimes I must remember that despite my need to control and offer helpful advice, God has this all figured out without my well-meaning help. Unlike me, God doesn’t need to read all the latest research in autism; He created the universe. While I’m impatiently waiting, God has already set the appointed time. What God has planned for Alex is greater than anything I could imagine, and healing will allow Him to show His glory. I just need to have the same trust and faith in Him that Alex does.

While six months can seem like a long time when waiting for something to happen or change, in reality, it’s not that long. Perhaps another six months will pass before Alex feels like eating more foods; we’ll have to wait and see. Perhaps tomorrow he’ll wake up and ask for his favorite food, shrimp, and devour it happily after not having eaten it for more than half a year. I don’t know. As we change our clocks back to Standard Time today, I’ll be praying that, like Daylight Savings Time, this time of illness was a summer thing to be put behind us. We will wait and see.

“For everything there is a season, a time for every activity under heaven.” Ecclesiastes 3:1