Chex, Cookies, and Caroline's Carts

 

Recently Alex saw a commercial for Chex cereal snack mix and asked me if we could buy some. Because, like many children with autism, he has been on a strict gluten-free and casein (milk)-free diet since he was seven years old, he knows that he can only eat foods that do not contain these proteins to which he is sensitive. Even though he cannot eat the prepared Chex snack mix, I knew that we could find a recipe and easily adapt it to fit within the guidelines of his restricted diet. Starting with the original Chex snack mix recipe from 1952 that I found online, I made a few changes and came up with a tasty result that Alex really liked.

Here is the recipe I adapted to make gluten-free, dairy (casein)-free Chex snack mix. Melt ½ cup of Fleischmann’s unsalted margarine. Add 1 tablespoon French’s Worcestershire sauce and mix. Combine 2 cups of Chex rice cereal, 2 cups of Chex corn cereal, and 1 cup Snyder’s of Hanover gluten-free, dairy-free, casein-free, egg-free pretzel sticks in a baking pan and pour the margarine/Worcestershire sauce mix over the cereal and stir. Sprinkle ¼ teaspoon of table salt and ¼ teaspoon McCormick garlic salt over the cereal. Bake in a 300 degree oven for 30 minutes, stirring every ten minutes. Cool and store in an airtight container.

When we first discovered that Alex was sensitive to glutens and caseins, I remember being overwhelmed by trying to figure out what he could and couldn’t eat. At that time, gluten-free diets were less common, and I relied upon online resources and special diet cookbooks to make Alex foods he could eat. Fortunately, gluten-free and dairy-free foods have increased in quantity and quality over the years. What used to be available only in health food stores is now readily available in many grocery stores. Items I used to have to bake from scratch, such as cookies, are now offered in a nice variety of flavors and textures. Moreover, the taste and textures of gluten-free and dairy-free foods has improved significantly over the years. Previously these foods often resembled their cardboard containers in flavor and texture, but now these foods mirror their non-special diet counterparts and are quite tasty.

One of the best discoveries we have made recently is the array of products from Enjoy Life. This company makes cookies, cereals, and baking goods in a dedicated facility, which means that no allergens are present to cross-contaminate their foods. Showing their concern for a variety of food allergies, their foods are free of eight common allergens—wheat, dairy, peanuts, tree nuts, egg, soy, fish, and shellfish. In addition, their products contain NO casein, potato, sesame, sulfites, artificial ingredients, or GMO’s. Although I was a little skeptical how tasty their products might be, we discovered that they are delicious. In their crunchy cookie line, Alex is a fan of their vanilla honey grahams and their sugar crisps. (They also make crunchy chocolate chip cookies and double chocolate cookies, but we keep Alex away from chocolate, which seems to make him hyper.) Besides their crunchy cookies, Enjoy Life also makes soft-baked cookies, including chocolate chip, double chocolate brownies, gingerbread spice, and Alex’s favorite chewy cookie, snickerdoodles. While we have been able to find these cookies at our local Strack and Van Til grocery stores, these products are also available online directly from Enjoy Life or other retailers. In addition, their website (http://www.enjoylifefoods.com) offers a store locator where their products can be purchased; their helpful website also provides more information about their products along with recipes. I’m pleased to have found a company that caters to people with food allergies and makes delicious cookies Alex can eat, which has made life better for us.

We are also fortunate that the chain of Strack and Van Til grocery stores in Northwest Indiana support people with food allergies, offering a wide variety of foods for people on special diet plans. In addition, we have been able to attend two of their special foods tasting events, where Alex was able to sample various gluten-free and dairy-free foods to decide whether or not he liked them. In fact, this was how we discovered Enjoy Life cookies. Another way that the Strack and Van Til stores have shown their concern for their special customers is to provide Caroline’s carts in all of their stores. These grocery carts allow parents of special needs children to shop more easily because their special design permits even older children to ride securely facing their parents without their parents having to lift them as they would with a regular cart. After lifting Alex for many years into a grocery cart for his safety, I clearly see the value of Caroline carts for special needs children. Once when Alex was beyond the age typical children ride in the grocery cart seat, an elderly man watched me heft Alex up into the cart and commented, “Honey, you shouldn’t be lifting him into the cart; he should be lifting you!” Fortunately, Alex no longer needs to ride in the grocery cart, but I would have loved a Caroline’s cart when he was younger.

Designed by Drew Ann Long, these carts (as depicted above) were named after her special needs daughter Caroline and developed to keep special needs children safe while their parents shop. The best part of these carts is that parents can easily maneuver children into the cart seats without having to lift them as much as they would with typical grocery carts. Produced by the company Technibilt, Caroline’s carts are now available in stores in more than forty states in the U.S., including large supermarket chains such as Kroger, Publix, Winco, Albertson’s, Shop Rite, and Whole Foods. In addition, these carts are also available at the commissaries of many U.S. military bases. To find stores that offer Caroline’s carts, the Caroline’s Cart website (http://www.carolinescart.com) includes an interactive map to show availability of the carts and provides more information about these helpful inventions. I’m pleased that Caroline carts are now available so that parents of special needs children can more easily and safely place their children in grocery carts.

While parenting a special needs child presents certain challenges that typical parents may not realize, the availability of new products makes life easier and better for special needs children and their families. Moreover, companies who offer these products readily inspire a loyalty and gratitude from the customers whom they help. I’m thankful that our local grocery chain, Strack and Van Til, not only offers Caroline’s carts for special needs children but also offers a wide assortment of foods for people with special diets. While these gestures may seem small, to special needs parents, they mean a great deal.

“Taste and see that the Lord is good. Oh, the joys of those who take refuge in Him!” Psalm 34:8

Bedtime Routine

This week, I was reading an online article about backstage riders, or contractual demands musicians make regarding what must be provided in their dressing rooms before they perform. While some claim these specific requests ensure that more important requirements, such as safety issues, are met, most of them seem to cater to the whims of pampered stars who view their wants as needs. Perhaps the most famous example is the rock band Van Halen’s rider demanding a bowl of M&Ms with all the brown candies removed. Singer and American Idol judge Jennifer Lopez insists that her dressing room be decorated completely in white with white furniture, white curtains, and white flowers. Former Beatle Paul McCartney’s contract includes the rather unusual requirements of 24 bars of Ivory soap and 19 (not 20) six-foot-tall leafy plants. Displaying diva behavior, Madonna insists that a new toilet seat be installed in her dressing room bathroom; Barbra Streisand takes this a step further by demanding that rose petals be placed in her dressing room toilet. Like these stars, Alex has his own list of requirements that must be met; however, his “needs” focus on bedtime instead of showtime. If he knew about backstage riders, he would be likely to want his own contract in writing to make sure his list of demands were met so as not to disturb his need for a nightly routine.

When he was little, Alex’s contract would have included the following bedtime requirements:

• Favorite books and stuffed animals (specifically Barney the purple dinosaur and two teddy bears Mommy made, a.k.a. “friends”) placed strategically in the bed
• Recitation of specified bedtime story (Goodnight Moon, later to be replaced by Veggie Tales’ book Time for Tom), complete with perfect page turning, appropriate voice modulation, and absolutely no changes of wording
• Five sippy cups of various colors lined up on the dresser, each containing a different beverage—milk (prior to the milk-free diet), water, orange Hi-C, orange juice, and apple juice

Fortunately, Alex has outgrown those needed items in order to go to sleep. His current contract would instead include the following requests:

• Digital scale for weighing self nightly, accurate to 1/5 of a pound
• Digital electronic blood pressure cuff for measuring “vitals” (blood pressure and pulse) on a weekly basis
• Prescription progesterone cream rubbed into forearms nightly to combat acne on face
• Burt’s Bees baby oil rubbed into outer ears to combat chronic dry skin
• “Tuck you in,” requiring two pillows (one under the head and one over the head) and specific blankets, depending upon the season, including NASCAR quilt, Chicago Cubs fleece blanket, blue sheet, white blanket, and “states blanket” (actually a quilt I made for him when he was five that has a map of the United States and the individual states surrounding it on one side)
• “Scootching”—a second or third attempt at “Tuck you in” when head is not appropriately placed on the pillow
• Sound effects for “scootching”—emulating the sounds made when game show contestants lose (My version goes “Wah wah wah waaahhhh”; to which Alex responds “Doh doh doh doooohhh.” This always makes both of us laugh.)
• Recitation of nightly prayers, specifically the “Now I lay me down to sleep” version ending with “God bless” of 34 specific people’s names (If any of these people who are important to Alex are not mentioned, he adds their names to the end and acts slightly annoyed that I forgot to include them. “Amen” must be said in unison.)
• Goodnight kiss on the cheek or forehead, followed by mutual declarations of affection—“Love you”
• “See the stars”—turning on one of his two star projectors, the one that accurately displays constellations in white on the ceiling (but requires being turned off once he’s asleep) or the one shaped like a turtle that displays whimsical green depictions of the moon and stars on the walls and ceiling (not scientifically accurate but has an automatic shut-off after an hour, which makes it more convenient)
• Recitation of nightly ditty—“Good night, sleep tight, don’t let the bedbugs bite!” (I must say the first part but allow Alex to finish the ditty with “the bedbugs bite.”)
• Close door to permit enough darkness for the star projections to be seen and to signal that it’s time to go to sleep.

While this complicated routine may seem a bit much, Alex and I have perfected the steps after daily repetitions so that we can run through it fairly quickly. If I forget any of the details, he is quick to remind me what still needs to be done, and he is usually patient about any occasional omissions I make. Certainly, like a rock star, he is pampered, probably because of his autism and his only child status. Since I understand his need for routines, I maintain them, and because I have the time to focus only upon him, I cater to his whims, knowing that he will sleep easily through the night once we have met all his requests. To be honest, this bedtime routine is sacred to me, as well, because during this precious time Alex is the most affectionate and content, which makes my tasks in helping him get ready for bed worthwhile. Eventually, he will be independent and not need me, but for now, I savor the sweet bedtime routine, even those times when it seems tedious, pleased to have a child who prays, expresses love, and knows contentment. To share that experience is truly a nightly blessing.

“In peace I will lie down and sleep, for You alone, O Lord, will keep me safe.” Psalm 4:8

Father and Son

 

An old Jewish proverb states, “God couldn’t be everywhere, so He created mothers.” As an addendum to that saying, I would add that because mothers can’t be everywhere, God created fathers. Like all other moms, and especially those who have children with special needs, my role involves juggling various responsibilities to make sure Alex gets what he needs. However, without Ed’s support, encouragement, and steady presence, I would never be able to manage all those tasks required of me. Just this past week in a variety of situations, I was reminded how well we complement each other as parents, both working toward helping make Alex’s life the best it can be.

On Monday, we took Alex to his psychiatric nurse practitioner for his regular six-month appointment to monitor his health and progress. When we go for medical appointments, my primary responsibility is to act as Alex’s health care advocate, speaking the medical lingo with the professionals, and Ed’s primary role is to keep Alex calm and entertained as we wait. As Ed chatted with Alex about the Beatles, I rattled off the prescription medications he is taking, the dosages, and the times of day he takes them. When we met with his nurse practitioner, I gave a brief summary of his progress and behavior as well as answered her questions. While I try to be objective, Ed takes the opportunity to highlight Alex’s accomplishments, making no secret how proud he is of his son. Of course, both of us were pleased that not only were Alex’s blood tests and vitals excellent, but also that he handled himself well, answering her questions pleasantly and politely.

On Wednesday, I went out to dinner with some friends for a Girls’ Night Out, leaving Alex and Ed to enjoy one of their “Boys’ Suppers.” This means that Ed cooks seafood, which they both love and I despise, and they look forward to these opportunities to eat their favorite food together. When I came home, I found Alex in his favorite spot, stretched out on the loveseat with his long legs hanging over the end, and Ed stretched out on the couch, both of them contentedly watching baseball on television. Knowing that Ed takes good care of Alex and that Alex enjoys time alone with his dad allows me to enjoy some time with my friends and gives me a break from the autism mom routine.

This week, I wondered aloud how much Alex’s therapies were benefitting him, not being critical of his terrific therapists, but just questioning how much of his progress simply comes with time and maturation. Ed immediately listed all the positive aspects of Alex’s therapy, reminding me how valuable those sessions are to Alex. Perhaps one of the greatest strengths of our marriage and partnership as parents is that when one of us is flagging in energy and enthusiasm, the other points out all the good to lift the spirits and encourage moving forward toward our goal of making Alex better.

Yesterday, we took Alex for a Saturday Social monthly event at an agency that provides services for adults with disabilities. A couple of months ago, we had taken him for the first time to this program; that time the activity was crafts, which are not among Alex’s favorite things to do. However, he apparently had a good time because he pestered me to call them to find out what the activity was for this month. When he found out the planned activity was Bingo, he was delighted because the combination of letters and numbers in the game are right up his alley. Since Alex did so well the last time we took him, I had told Ed that he didn’t have to go and that I could take him myself. Nonetheless, Ed decided to go along with us, even though he was the only male there other than Alex. Even though I know he hates situations where he has to make small talk, he pleasantly chatted with people and cheered on Alex, who won four prizes. Besides being there for Alex, I know he was there to support me, to make me feel more comfortable in a relatively new situation.

As we celebrate Father’s Day today, I am thankful that God blessed my son with such a loving and caring father. Even though life with autism has meant that our life is much different than those families who have typical children, Ed makes the best of our situation, focusing on Alex’s strengths and not his weaknesses. In times of crisis, he provided the strength I needed to get through the situation, and in the day-to-day routine, he offers his opinions but trusts my judgment. While Alex can’t fully express his feelings, I know that he adores his father and thinks he’s the smartest and funniest guy he knows, and he knows Ed feels the same way about him. Through all the obstacles, their love has grown stronger, and I am so proud of both of them for the men they have become. Happy Father’s Day!

“For the Lord corrects those He loves, just as a father corrects a child in whom he delights.” Proverbs 3:12

Commencement

Dear Class of 2014 (especially my two nieces who just graduated from high school),

As you listen to commencement addresses, you hear all sorts of platitudes about how to live your life. Some offer good advice, and you should pay heed. Despite all that you have learned in your education, you will learn so much more in life. Sometimes you will be prepared with the wisdom you have gained, but many times in life, experience will be your best teacher. I can confirm that truth from my own experience. Despite all I learned from my excellent education, nothing really prepared me for the most important role in my life as an autism mom. When I look at photographs of myself at your age, I see an innocent, wide-eyed, hopeful girl who had no idea what challenges she had ahead of her. Yet, raising a child with autism has made me do all those things your graduation speakers have told you to do—dream big, work hard, and never give up—in ways I never thought I could do.

Aside from just the day-to-day experiences of helping my son overcome the challenges autism has presented, I have learned valuable lessons from scriptures and country song lyrics that have reminded me what’s really important in life: patience, perseverance, presence, faith, hope, and love.

What no one tells you about life is that you’ll spend a great deal of time waiting for something—waiting for a phone call, waiting in line, waiting for something good to happen. While you wait, just learn to be patient, which will serve you well when you are waiting for situations to get better. As Amy Grant sings in “It Take a Little Time,” “It takes a little time sometimes to get your feet back on the ground. It takes a little time sometimes to get the Titanic turned back around. It takes a little time sometimes, but, Baby, you’re not going down. It takes more than you’ve got right now. Give it; give it time."

Part of that waiting process is plugging away and never giving up, especially when quitting would be so much easier. As I’ve watched my son struggle to do tasks that most people can do easily, he has taught me the value of perseverance. He knows that eventually he’ll accomplish what he has set out to do, and as he often reminds me, “Wait and see.” In the words of Leanne Womack’s beautiful ballad, “I Hope You Dance”: “Whenever one door closes, I hope one more opens. Promise me that you’ll give faith a fighting chance, and when you get the choice to sit it out or dance, I hope you dance.”

With all that waiting and working toward the future, we need to remember to savor the present, to appreciate all the good in the right now that we can easily miss worrying about the future. In her song “So Small,” Carrie Underwood offers good advice: “While you sit around thinking about what you can’t change and worrying about all the wrong things, time’s flying by, moving so fast. You better make it count ‘cause you can’t get it back.”

So how do we deal with all the worries in life? Faith will carry us through those times when we fear the unknown, the overwhelming, and truly terrifying.  Life with autism has strengthened my faith because I’ve learned that I cannot do things on my own, and faith has comforted me by assuring me God is in control. As Garth Brooks sings in “The River,” “There’s bound to be rough waters, and I know I’ll take some falls. But with the Good Lord as my captain, I can make it through them all.”

In those rough waters, faith carries us, but hope sustains us, reminding us that what may seem permanent is only temporary. As we look forward with anticipation, we know that things will get better. In the words of the Rascal Flatts song “My Wish,” “My wish for you is that this life becomes all that you want it to, your dreams stay big, your worries stay small, you never need to carry more than you can hold.”

While learning patience, perseverance, and presence will enhance our lives, faith and hope are vital to our existence. As the scriptures remind us, even greater than faith and hope is love. Without that overpowering force, our lives become meaningless. Love motivates us to help others, to be sacrificial, and to become the best people we can be for others’ sakes. Pure love guides us to do the right thing and reminds us that we’re never alone. As Lady Antebellum advises in their song “Compass,” “So let your heart, Sweetheart, be your compass when you’re lost, and you should follow it wherever it may go. When it’s all said and done, you can walk instead of run ‘cause no matter what, you’ll never be alone.”

Congratulations, Graduates, and as you step out into the “Real World,” I pray that you find patience and perseverance when you need it, enjoy the present, and remember to hang on to hope, faith, and love, which will always see you through any circumstance and help you fulfill your destiny in life.

“There are three things that remain—faith, hope, and love—and the greatest of these is love.” I Corinthians 13:13

Right Place, Right Time

I don’t believe in coincidence. Too many remarkable yet seemingly random things have occurred in my life that remind me the hand of God is orchestrating events for my benefit or so that I may do some good. For instance, when I was pregnant with Alex, I developed a rather rare autoimmune blood disorder causing my platelet count to drop, leaving me at risk for bleeding. (Thanks to the healing of God, I no longer have this chronic disease.) To rule out other conditions, I underwent a bone marrow biopsy, a procedure often characterized as quite painful. Thankfully, I found the experience did not live up to its hype and was more of a feeling of pressure than of pain. Unfortunately, my test results came back inconclusive, requiring a second bone marrow biopsy. At the time, I was frustrated that I had to go through another biopsy, but I was more upset that I would have to wait longer for results that would rule out a potentially life-threatening condition.

After the second biopsy, which was as uneventful as the first, the doctor asked me to take the sample to the lab myself, which struck me as odd at the time. When I arrived at the hospital lab, I explained to the clerk that I needed to drop off a bone marrow biopsy, which seemed to surprise and horrify her at the same time, and she quickly called for a technician to deal with the situation. As I waited for someone to take my bone marrow sample, a young woman appeared behind me and politely told me that she had overheard me tell that the clerk that I’d had a bone marrow biopsy, and she wondered what that was like. She wasn’t being nosy; she explained that her little girl needed to have one and had heard they were terribly painful. As a mother, she wanted to be able to prepare her child and was worried about what she might have to experience. At that moment I knew why I needed to have two bone marrow biopsies and had to carry the second one to the lab myself—so that I could reassure a young mother that her daughter, like me, would get through this testing fine. As she thanked me, I could see relief on her worried face, and I knew that God had placed me at there at the right moment so that I could be of help.

When Alex was hospitalized two years ago for extreme anxiety and aggression, we were terribly upset that he would have to be away from home for the first time in his life yet knew he needed intensive intervention to get better. While we waited in the emergency room for the nurse from behavioral medicine to come get him to admit him for in-patient treatment, I prayed for a sign that we were doing the right thing. As I looked up, I saw that the nurse, who became one of Alex’s primary caregivers during his hospitalization, was wearing her identification tag on a lanyard nearly identical to the one I wear for my job. Our lanyards, emblazoned with the name Jeff Gordon and number 24, show our support for our favorite NASCAR driver. I knew at that moment God had sent her to mother Alex in my place when he needed specialized care we could not give. That small sign in the form of a fellow NASCAR fan reassured me that everything would eventually be fine.

A couple of weeks ago, I was chatting with one of the technicians at the pharmacy where we get Alex’s medications. As she saw the name of the psychiatric nurse practitioner who prescribes his medicine, she told that she also worked part-time at a medical facility in town and had heard that Alex’s nurse practitioner was moving her practice here. A few days later, we received a letter from his nurse practitioner confirming what the pharmacy technician had told me: she is moving her office to our town this summer. This change means that we will no longer have to drive forty minutes to see her; she will only be ten minutes away from our home. While she could have moved her office to several towns in the area, she chose to practice here. I know this move was not coincidental; God made this more convenient for us.

Yesterday, I had another one of those being at the right place at the right time experiences. Every few months, we have to take Alex for routine blood tests to make certain the medications he takes are the proper dosage and are not affecting his metabolism adversely, especially his liver and kidneys. Fortunately, Alex eagerly anticipates blood draws; he never minds having medical procedures and finds them strangely entertaining. I think we have been blessed to work with medical personnel who have always been kind and gentle with him so that he has no fear of doctors and medical procedures. In addition, I’m always tried to schedule appointments carefully so that he never has to wait long, which can make him anxious. Fortunately, we have also found a nearby lab where their kindness and efficiency always makes blood draws easy for Alex.

When we pulled into the parking lot, Ed and I noticed that the car parked in front of us had an Autism Awareness license plate, which caught our attention. After the registrar quickly processed our paperwork, a lab technician whom we had not seen before treated Alex very kindly and seemed to know instinctively how to work with him, even though we had not mentioned his autism, as we often do. Once again, he made us proud as he handled the blood draw calmly, never complaining a bit. As we were leaving, we thanked the lab technician, who commented that she has a son like him. I then noticed that her identification card lanyard was decorated with the autism puzzle pieces logo and realized that she, like me, is an autism mom. We could have taken Alex anytime to the lab, which is open 24/7, but we were supposed to meet this mom.

While Ed and Alex went to wait in the car, I talked to her briefly, and we compared notes. Although her son is younger, she has experienced many of the same things we have. As she expressed some concerns about recently putting her son on medication, I was able to reassure her how much the same medication had helped Alex. In a matter of minutes, we had bonded because we shared a devotion to our sons with autism, and we could empathize because of our similar experiences. After she had asked me a few questions, I sensed that she wanted to talk more, but we both knew that we didn’t have the time right then to do so. I wrote down my e-mail address for her so that she could contact me, which she seemed to appreciate, and she told me to ask specifically for her anytime Alex needed lab work. Once again, I knew that this meeting was not random; God intended for two autism moms to come together to help each other. Although I am confident that God always directs our steps, whenever these “coincidences” occur, He reminds me that His plan for our lives is good, reassuring me that in the end, everything will be all right.

“…He makes everything work out according to His plan.” Ephesians 1:11