Sunday, December 29, 2013

Benefits of Hot Baths and Epsom Salt for Autism


As I mentioned in last week’s blog entry, Alex was eagerly anticipating getting an iPad Mini electronic tablet for Christmas. Knowing that once he opened that desired gift, he would likely ignore any other gifts, I decided to hide the gift-wrapped iPad so that it would be the last present he would open. After he had opened all of his other gifts on Christmas morning, I asked him if he had gotten everything he had wanted for Christmas, thinking that he would comment that he was hoping for an iPad. When he told us no, we asked him what else he was hoping to get, and he told us, much to our surprise, “A hot tub.” Before he could feel cheated out of a hot tub, which he was definitely not getting this year, we quickly gave him his iPad to unwrap, and he was delighted that he had received the gift he’d been requesting for several weeks.

While the request for a hot tub seemingly came out of nowhere, we really shouldn’t have been surprised that Alex would ask for one. The past several weeks, his current obsession has been soaking in a bathtub filled with hot water and Epsom salt (as I also mentioned in last week’s blog entry). While Alex has always liked taking baths, recently he has wanted to take a bath two, three, or even four times a day, and he wants Epsom salt in the bath water. When he was younger, I put Epsom salt in his bath water after reading about the benefits of this inexpensive compound found in the first aid section of most stores. Epsom salt, or magnesium sulfate, helps children with autism in two primary ways. First, the magnesium soothes and relaxes, while the sulfate rids the body of toxins. In fact, some doctors recommend that children with autism take nightly baths with Epsom salt to help calm and detoxify before bedtime. [To read more about the benefits of Epsom salt baths for children with autism, please click here.] Over time, we didn’t see any particular need to continue using Epsom salt until Alex started requesting them specifically a few months ago.

Recently, when Alex asked for Epsom salt in his baths, I thought he was just being nostalgic about when he was little, as he likes to do. However, in doing some recent research while trying to find something to eradicate the stubborn yeast that has inhabited his digestive tract for many months, I ran across an interesting comment from an autism mom who is also a medical doctor. In Healing Our Autistic Children, Julie A. Buckley, M.D. describes the battle she fought to help her daughter, who has autism and chronic yeast infections. In a chapter entitled, “Mommy, I Have Fleas,” she explains her daughter’s itching and agitation when she has yeast flares, which she describes as “fleas.”  Along with yeast-fighting antifungals, Dr. Buckley also recommends that parents help ease the symptoms of yeast overgrowth with water by encouraging their children to drink filtered water and bathe often. As she suggests on p. 92 of her book, “Draw him lots of baths and pour a cup of Epsom salts in the water, sometimes several times daily.” Once again, Alex’s amazing intuition about what he needs to improve his health has medical validity. After consulting with his doctor, who concurred with this recommendation, we have been allowing Alex to take baths whenever he asks, and we have been buying Epsom salts in the giant economy-sized package.

To reinforce the value of Alex’s tub time, new research that appeared in the news two weeks ago highlights the benefits of hot baths for children with autism. At the annual meeting of the American College of Neuropsychopharmacology, research was presented to support the theory that autism is caused by an overly active immune system, causing inflammation that affects behavior. Specifically, the report states, “This theory is supported by the fact that about a third of autistic individuals show clinical improvement when they have a fever. In response to high body temperature, the immune system may release protective anti-inflammatory signals in the body, which may explain the effect on autism symptoms.” To test this theory, Dr. Eric Hollander and his colleagues placed children with autism in hot baths, trying to recreate the effect of fever on the body. When the children were placed in baths of 102 degrees Fahrenheit for a half hour, parents reported improvement in autism symptoms, namely repetitive behaviors and social communication. [To read this article, click here.] Since Alex has always shown improvement the few times in his life when he has run a fever, this research intrigued me. Moreover, we have noted that we have seen improvements in his behavior after he takes hot baths. Not only is he calmer and more relaxed after baths, but his conversational skills also seem to improve after he soaks in the tub. Consequently, we have supported Alex’s requests for long, hot baths in Epsom salt because we think they are truly helping him. However, we won’t be buying him a hot tub anytime soon.

Even though Alex didn’t get his hot tub, he seemed to thoroughly enjoy this Christmas season, from listening to Amy Grant’s Christmas CD repeatedly to shuddering with delight as he sang his favorite carol, “Joy to the World,” at the Christmas Eve church service. At one point, he showed a little confusion about the holiday when he asked us, “Who is God’s baby?” Nonetheless, he reminded us that we celebrate Christmas “because it’s Jesus’ birthday.” After the various struggles autism has presented our family through the years, Ed and I were very thankful to enjoy probably our best Christmas ever with Alex, filled with peace, joy, and love—gifts we truly treasure.

“For the Lamb on the throne will be their Shepherd. He will lead them to springs of life-giving water. And God will wipe every tear from their eyes.” Revelation 7:17

Sunday, December 22, 2013

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


Sunday, December 15, 2013

Twenty-two

 
“I don’t know about you, but I’m feeling twenty-two. Everything will be all right if you keep me next to you.” from “Twenty-two” by Taylor Swift

Dear Alex,
Tomorrow is your twenty-second birthday, but it doesn’t seem that long ago that you arrived in this world on a bitterly cold day. To be honest, I wasn’t quite ready for you, thinking that I had nearly a month left to prepare for your birth.  Through the years we have teased you that you didn’t want to wait to be born in January because you didn’t want to miss Christmas, your favorite holiday. Of course, you showed me from the beginning that life with you was going to be an adventure, and my plans were going to need revision.

When you were born, my cousin gave me a book called Love You Forever about the love between a mother and her son over the years. In the book, every night, even when her son is a grown man, the mother sings to him, “As long as I’m living, you’ll my baby be.” This book always makes me cry because it’s so sweet, but I didn’t know how true those words from her song would be. When we found out you have autism, we realized that you were going to be a little boy longer than we anticipated, a Peter Pan who may never grow up.

Even now, as you tower over me in your six-foot tall lanky body, you still rely on your dad and me to help you with seemingly simple tasks. However, we know that we are more fortunate than many parents whose children have autism because you eat and sleep well, know your limitations and never wander from us, and can use the toilet on your own. Most of all, we are blessed that you can speak and tell us what you’re thinking, unlike many children with autism. While we had to wait for you to master many skills, that made those accomplishments even more reason for celebration.

In many ways, you are an interesting mix of your dad and me. Your build is his; your coloring is mine. Your mostly easygoing personality comes from your dad, and your need to make lists and do research comes from me. You have an eclectic taste in music: you enjoy listening to jazz and Bob Dylan with your dad, and you appreciate the Bee Gees and Amy Grant, thanks to me. Of course, you have found your own tastes, as well, choosing Alan Jackson and Kenny Chesney as your favorite singers. Whenever you listen to music you love, we watch you smile and sway, and that makes us smile, too.

Two of the qualities that I’d like to think you inherited from me are your tenacity and your abiding faith. To overcome the obstacles autism has put in your way, we’ve had to keep working and working, never giving up. At times when I felt like quitting, I’d watch you try one more time, and I knew that I could keep going, too. What makes me proudest of you is that your faith in God never wavers, and I love that we end our day praying together. You have a lot of questions for God, and while I hope you find the answers in your lifetime, I’m looking forward to the day in heaven when we can ask Him face-to-face all the things that have puzzled us both. I’m grateful that you have no fear of death because you know that you’re going to heaven someday, and as you tell me, you’re looking forward to seeing your beloved Dr. Trowbridge and Jesus. I’m sure that they will be delighted to see you, too. While I still have hope that you will be healed of autism here on earth, I know that you will be healed in heaven, and I look forward to celebrating that day.

Although most children are afraid of imaginary monsters under their beds, you don’t fear things like that. You worry about gas prices, but you seem to trust that God and your dad and I will always take care of you. Maybe because we’ve faced our monster—autism—head on, we don’t worry about the imaginary ones. Sometimes I think that we are like knights trying to slay the dragon as we keep fighting the battle of autism. The words of Lewis Carroll’s poem “Jabberwocky” go through my head as we try to defeat autism, our Jabberwock: “Beware the Jabberwock, my son! The jaws that bite, the claws that catch!” As we keep praying for your healing, I hope for the victorious ending of autism in your life: “And hast thou slain the Jabberwock? Come to my arms, my beamish boy!”

As your mom, like all parents, I’ve made my share of mistakes in raising you. I know that I’ve been overly protective with you, and I’ve overindulged you at times, mainly because of the limitations autism has placed on you. I never wanted you to be hurt by anyone or anything, and I didn’t want you to miss out on the joys in life. Frankly, at times, it was just easier to do things for you than to have to watch you struggle to do it yourself. As your Nanny, my mom, always says, “Any mistakes I’ve made, I’ve made out of love.” Because of that love that surpasses else anything in my life, I’ve wanted you to be the best you can be. Somehow you seem to know that already.

In your twenty-two years, I’ve tried to teach you all the things you’ll need to know in life, and I hope you’ve learned them well. What has surprised me, though, is that you have been one of the best teachers I’ve ever had in my life. Before you came into my life, I saw myself as impatient and not very strong. However, you’ve taught me the value of patience and the lessons we learn while we are waiting. More importantly, you’ve made me realize that I’m a lot stronger than I ever thought I was mainly because I get my strength from God. Through all the trials we’ve lived in these twenty-two years, we’ve gotten better and stronger. 

What more can I say? Your dad and I love you so much and are so proud of the young man you’ve become, and we’re thankful for God’s blessings upon our lives. Whatever the future holds, know that I will be there to cheer you onto victory and to catch you when you fall. Happy Birthday, my precious son!

“Every time I think of you, I give thanks to my God.” Philippians 1:3

 

 


Sunday, December 8, 2013

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

Sunday, December 1, 2013

Organic Acids Test Results


In a previous blog post entitled “Lab Tests” [October 13, 2013], I explained that we were having The Great Plains Laboratory’s organic acids test with yeast culture and sensitivity run to check Alex’s metabolism as well as to determine the presence of yeast in his system. After collecting his urine and stool samples, we sent the test kit off to be analyzed and waited for results. A couple of weeks ago, Alex’s doctor sent us a copy of the results from the organic acids test, a ten page document that carefully detailed and explained what the test revealed along with recommendations for treatment. Since Alex has had this test run in the past, I was familiar with the information given in the results; however, I still needed to review the potential causes for the various results that were out of the normal range. Out of the seventy-six metabolic markers tested, Alex had seventeen that were abnormal.

The good news was that after comparing the most recent test results with those from the last time the test was run in August 2004, his metabolism shows improvement over time. Essentially, even though he has some metabolic issues, his body does seem to be healing. However, the tests indicate that he still has some vitamin deficiencies, excessive inflammation, and mitochondrial dysfunction—all of which are common in autism. Since Alex has been dealing with a chronic yeast infection of his mouth for many months despite antifungal medication, we were not surprised the test indicated that he does, indeed, have yeast overgrowth in his system.

After studying the test results carefully, highlighting key passages, taking notes, and writing questions, I was prepared to discuss the results with Alex’s doctor last Monday. Once again, I was reminded how blessed we are to have found him. Not only does he possess knowledge about nutritional medicine, but he also enthusiastically pursues ways to make Alex better. As he laid the test results across the examining table and made notes on the paper liner on top of the table, he clearly explained his interpretation of the results, which confirmed my suspicions. I especially appreciated that he treated me as an equal as we discussed possible approaches to treatment, and his warm, reassuring manner made me comfortable about asking questions.

In addition to the organic acid test results, he also discussed the results of the yeast cultures and sensitivity, which detected the presence of the fungus Candida albicans in Alex’s stool, which came as no surprise, since he has had bouts of candidiasis throughout his life. What was surprising was the indication of another fungus, Rhodotorula mucilaginosa, present in his system. While I wasn’t pleased to discover that Alex has not just one but two strains of fungus in his digestive tract, I was relieved to discover that the sensitivity tests showed several antifungals to be effective on these fungi. In fact, the same antifungals that were beneficial to treating one strain were also useful to treating the other, which was good news. The natural antifungals caprylic acid and grapefruit seed extract were shown to be effective, as was Nystatin, an antifungal commonly used in children with autism who have yeast issues. In addition, all three of the prescription azole medications, fluconazole (Diflucan), itraconazole (Sporanox), and ketoconazole (Nizoral), were shown to treat the fungal infections effectively. Fortunately, Alex has taken all of these medications and caprylic acid at one time or another without any negative side effects. In the past, his yeast cultures have shown resistance to Nystatin, so I was pleased to see that we can now add that antifungal to our arsenal along with grapefruit seed extract.

After carefully considering all the test data, Alex’s doctor and I discussed the plans for his treatment. He recommended finishing this month’s dose of itraconazole and then switching to grapefruit seed extract for a month, followed by a month of Nystatin. This rotation of antifungals is a common method of treatment to prevent resistance to any antifungals. He suggested that repeating this three-month cycle would be likely, as he foresees that getting the yeast under control will likely take at least six months. In addition, we prioritized the treatment with supplements recommended by the organic acids test. Because we always do a control method whenever we do something new with Alex, starting only one new supplement at a time, I asked him which supplement we should try first. He suggested a good vitamin B complex to strengthen his immune system and to address nutritional deficiencies indicated by the test results. After that, he recommended adding the supplement CoQ10, followed by the amino acid taurine. Although Alex has taken all of these supplements in the past, we still need to monitor the effects they may have upon him, especially until we get the yeast overgrowth under control.

Along with a copy of Alex’s test results, his doctor gave me a copy of an article about amino acids he had read recently that made him think of Alex. We discussed some of the amino acids Alex has taken in the past, including GABA, taurine, glycine, and thianine, and he explained the benefits of some of these amino acids upon the nervous system, which he felt would help keep Alex calm. Our hope is that once we get the yeast under control, we can reduce the number and/or dosages of psychiatric medications Alex is currently taking and replace them with more natural substitutes to address his anxiety. I also shared some research I had found written by a doctor who has a child with autism and who treats many children with autism. She mentions that whenever her daughter has yeast overgrowth, she complains that she has “fleas” and begs her mother to call the doctor for antifungals. In addition to medication, the doctor recommends frequent Epsom salt baths to help detoxify and calm the itching, the sense of having fleas. Interestingly, Alex has been asking to take two or three baths a day and specifically requests Epsom salts in the tub. As I have mentioned previously, Alex is very in tune with his body, and I was amazed that he knew what he needed to feel better. His doctor agreed, and he recommended that we continue the Epsom salts baths when Alex requests them.

While we wish Alex could be spared of the annoyance of yeast overgrowth, and we continue to pray for his healing, we are thankful that a variety of ways exists to treat the problem so that we don’t need to worry that he is running out of options. Moreover, we’re especially grateful to have a doctor who is in this battle with us for the long haul and who understands the importance of addressing a physical issue that significantly affects Alex’s behavior adversely. Most of all, we are thankful for the healing power of God and for His guidance through medical professionals and tests so that we can help Alex be healthy and happy.

“Lord, your discipline is good, for it leads to life and health. You restore my health
and allow me to live!” Isaiah 38:16

Sunday, November 24, 2013

Give Thanks


During the month of November, as a tribute to Thanksgiving, some of my friends have been posting daily statements of gratitude on Facebook. Earlier in the month, I had considered participating in that worthwhile activity, but I knew myself well enough to realize that I would forget to post at some point. More likely I would write something in a hurry that was less thoughtful, such as “I’m thankful Hostess Twinkies and cupcakes are back on the market,” that would make me seem rather shallow or insincere. Even though I have not made daily Facebook proclamations of things I appreciate, I find myself daily—and not just during the month of November—giving thanks for many things, both large and small. Sometimes something will suddenly catch my attention, making me realize how an improvement has made my life easier, and I give a quick prayer of thanks. Other times, I recognize how ongoing blessings have touched my life, and I feel grateful. Of course, most of my prayers focus upon Alex, and when God answers them or redirects our path, I feel thankful. With that in mind, here are my thirty thankful thoughts.

1. As I was folding laundry the other day, I was thankful that Alex outgrew his need to chew his socks and shirt collars for sensory stimulation. Not only are his clothes free of holes, I no longer accidently step on yucky gooey socks he has left behind.

2. This week when I took Alex to get his hair cut professionally for the first time in nearly twenty years, I was thankful that he cooperated nicely and that the stylist treated him kindly. After three bad experiences having his hair cut at the barbershop when he was a little boy, I started cutting Alex’s hair myself because it was easier. However, now I’m glad that he’s eager and willing to allow someone else to cut his hair.

3. I’m glad Alex has recently rediscovered the joy of reading. The other night he asked me if he could stay up longer to read; of course, I said yes.

4. Since Alex is on a gluten-free and dairy-free diet, I’m thankful that more stores and restaurants carry foods that he can eat on his restricted diet. When we first started on the diet about fifteen years ago, choices were more limited, and reading labels carefully was necessary. Now foods are often clearly marked as gluten-free, making shopping easier.

5. I’m thankful that despite the restrictions of his diet, Alex has always been a good eater, willing to try new foods. As I’ve mentioned previously, the only foods he refuses to eat are mashed potatoes and popcorn, which makes him much less picky about foods than either of his parents. Luckily for Ed, Alex happily eats the carrots he doesn’t want.

6. Yes, I’m delighted that I can buy Hostess Twinkies and cupcakes again; when they come out with gluten-free and dairy-free versions that Alex can eat, I’ll be even more pleased. (Okay, that was shallow.)

7. As I was filling out annual paperwork for Alex’s disability services, I found myself frustrated in trying to decipher what information they wanted. However, I realized that we are blessed that he qualifies for services that make his life better and will be crucial for him in the future.

8. In reporting Alex’s limited personal financial assets for his paperwork, I recognized how fortunate we have been to have always had the financial resources to pay for whatever Alex needed over the years. Until he was legally an adult, we received no government benefits for his disability, and our insurance did not pay for any of his therapies. Nonetheless, we somehow always had enough money to pay for speech, visual, music, and biomedical therapies and anything else he needed.

9. Over the years, we have been blessed with various therapists who brought out the best in Alex and helped him overcome obstacles autism presented. We are truly grateful for Miss Susan, Miss Linda, Noel, Melissa, Seda, and Jennifer not only for the patience and kindness they have shown, but also for seeing potential in Alex and making him better.

10. I’m grateful that Alex, Ed, and I are healthy. Last week, as we were filling out medical forms for respite care, the case manager commented that Alex seemed to be quite healthy. Other than autism and the thrush infection we have been battling, Alex is remarkably healthy, as are Ed and I, which has made our lives much easier.

11. Finding doctors who are knowledgeable about autism isn’t easy, but we are thankful for the medical professionals who have helped us keep Alex healthy and happy. Dr. Trowbridge’s loving care until her retirement was truly a blessing, and now we appreciate Dr. Mike and Michelle for their expertise and for their compassion.

12. We are truly grateful for medications that help Alex deal with anxiety so that he can be happy and we can live peacefully, not constantly worried that he will erupt with aggression, as he did before he was on medication. This change has greatly impacted our lives in a positive way.

13. One of the small things: I’m grateful that gasoline prices no longer upset Alex. Trying to find routes around town that avoided gas stations was difficult, and hoping that he wouldn’t see the signs advertising the prices was often futile.

14. Every time I hear Alex flush the toilet, I’m thankful that he finally mastered toileting independently. While this may seem a small thing, for us, this is a major accomplishment that took ten years, many teaching approaches, and lots of laundry and carpet cleaning.

15. Every morning I wake up and thank God that Alex slept through the night peacefully. When he was younger, he often wandered the house in the middle of the night before we discovered the benefits of the supplement melatonin. More recently, he took up sleepwalking, which meant walking him back to bed. For the past several months, he stays put in his bed, which means peaceful nights for all three of us.

16. Whenever Alex asks for something nicely, I’m pleased that he’s learned the value of manners, specifically the importance of saying “please” and “thank you.”

17. Ed and I are thankful that our job schedules allow us to spend time with Alex to care for him. Because of our understanding supervisors, we have always been able for at least one of us to be home with him, which is, as Alex would say, “Good because it’s rare and special.” We know how blessed we are in this respect.

18. I’m grateful that my background as an English major and my experience as a teacher has helped me as I’ve researched methods to help Alex and as I’ve home schooled him. My training in college gave me critical reading skills and taught me how to assimilate new information quickly, which has been beneficial in doing autism research. Moreover, teaching a variety of students has given me many approaches to helping Alex learn.

19. Whenever I log onto my computer, I’m thankful for the Internet with its wealth of information on autism research and resources to consider for helping Alex.

20.  I’m also grateful that the Internet has allowed me to meet some amazing autism moms who have shared their lives and experiences. Besides the empathy these moms give freely, the wealth of knowledge they collectively share benefits all of our kids. I can’t imagine dealing with autism in isolation and know how fortunate I am to live in this modern age.

21. I’m thankful for mindless computer games like Candy Crush Saga and Bejeweled Blitz that prove to be great stress relievers to give me a break from being an autism mom. Okay, that was a little shallow, but it’s the truth.

22. This week when Alex asked if we could listen to Christmas music CD’s, I found myself thankful for the healing power of music. As I watched him smile, sway, and even dance (until he realized we were watching), I was pleased that music brings him so much joy and contentment.

23. The other night Ed commented about how nice it is to see Alex happy again. After months when Alex seemed to be only agitated or emotionally flat, we are delighted to see him enjoying life again. His laughter and smiles are a gift to us; when Alex is happy, so are we.

24. I’m thankful for Ed, who devotes himself to Alex as a father and also devotes himself to me and our marriage as we try to figure out what’s best for our family. I always know that he supports my decisions, but I appreciate that he is willing to listen as I think aloud about what choices we have. His unconditional love for Alex and me is one of the greatest blessings in my life.

25. I’m also thankful for our extended families for their love, support, and prayers through the years. While I would think that they would develop autism fatigue from listening to us, they continue to show caring and interest. God bless my beloved mother for patiently listening to my daily concerns, newest research, and multiple anecdotes, and for always having an opinion. Her strength has made me stronger.

26. My friends who have shown care and concern for Alex, Ed, and me through the years have helped more than they know. Their prayers and encouragement lifted me in the tough times, and they rejoiced with me during the good times. Moreover, when I was overwhelmed, they understood when I needed to talk or needed a hug. Again, Alex would say that they are “rare and special.”

27. I’m glad that I decided to write this list of blessings because right now I’m more aware than ever how fortunate I am. I’ve said that autism is the only difficult thing in my life, but perhaps it has been a blessing in disguise to make me see what a charmed life I’ve led. I know that dealing with the obstacles of autism has made me more patient and understanding, and I wouldn’t be the person I am had it not been for Alex.

28.  I’m thankful for Joel Osteen’s ministry that has developed my faith as I’ve listened to his Sunday sermons on television, read his daily devotions online, and read all of his inspirational books. His teachings help me on a daily basis as I remember that I’m “too blessed to be stressed,” “blessed by the favor of God,” and “a victor and not a victim.” His positive message of hope and God’s love inspire me daily to become a better person.

29. Every night when I listen to Alex’s bedtime prayers, I’m grateful that he has developed complete faith in God. He talks about God and Jesus as friends of his, and his belief in heaven and all that awaits gives him comfort. As his mother, I have comfort knowing that God loves Alex more than I do and will watch over him when I can’t.

30. With all of these blessings, I am most grateful for faith, hope, and love that have carried us along on this autism journey. While I don’t know what God has planned for us, I do know that He will give us the resources we need, as He always has. Most of all, I’m thankful God is always there. In the words of Alex’s favorite hymn, “In the Garden”: And He walks with me, and He talks with me, and He tells me I am His own; and the joy we share as we tarry there, none other has ever known.”

“Be joyful always; pray continually; give thanks in all circumstances, for this is God’s will for you in Christ Jesus.” I Thessalonians 5:16-18

Sunday, November 17, 2013

Theory of Mind and Literary Fiction


Last month a report that appeared in Science magazine entitled “Reading Literary Fiction Improves Theory of Mind” caught my attention as an autism mom and as an English teacher. [To read the summary of this article, click here.] Some researchers believe that people with autism lack Theory of Mind, or the ability to understand that other people have different thoughts and feelings than they do. Some have simplified this concept to the belief that people with autism lack empathy, or the ability to understand and share others’ emotions. Of course, those who cannot understand other people’s feelings and predict how they may react in situations are likely to have impaired social skills, which are also common in people with autism.

To assess Theory of Mind, researchers use the Sally-Ann test to see if children can understand how other people think. This test uses a story format with two girls, Sally and Ann. Sally has a ball, which she puts in a basket, and then she leaves the room. While she is gone, her tricky friend Ann removes the ball from the basket and places it in a box instead. Children are then asked to guess where Sally will look for the ball when she returns. Those who understand Sally’s thinking will choose the basket, knowing that’s where Sally thinks she left the ball. Those who lack Theory of Mind will choose the box because that’s where they know the ball has been placed. Typically children with autism believe that Sally knows the ball is in the box because they know it’s there; they don’t stop to consider that Sally is unaware that the ball has been moved while she was gone.

Since Alex has never been tested for Theory of Mind as far as I know, I was curious to see how he would do with the Sally-Ann test. When I gave him the test this morning, he immediately gave me the right answer, confidently telling me that Sally would look for her ball in the basket. Was this a lucky guess, or does Alex truly possess Theory of Mind? From recent progress we have seen in Alex, I believe that he has developed some understanding of the way other people think.

As the article in Science magazine points out, little research has been done to determine what helps develop Theory of Mind. With Alex, I think that behavioral therapy has helped him to understand better how his actions impact others. Through social stories and scripts his behavioral therapist has developed, Alex recites the rules for interacting with other people. For example, in his script “I Need to Keep My Hands to Myself,” he reminds himself that he needs to stop when he wants to touch someone or their belongings. The last line of this script explains the outcome when he follows the guidelines: “EVERYONE is happy when I keep my hands to myself.” In addition, his behavioral therapist discusses with Alex the potential consequences of impulsive behaviors, asking him what can happen if he would throw some something or grab someone. He knows that those are bad behaviors and can verbalize that he doesn’t want to break things or hurt people. He will sometimes add, “That would be sad.”

One of the recent changes that we have noticed is that Alex is showing interest in stories that have a plot. An avid reader, he has always preferred to read nonfiction works, especially reference books such as almanacs, encyclopedias, and dictionaries, to fiction works. Not surprisingly, his viewing preferences followed his reading choices, and he generally only watched game shows and news programs on television. After he lost interest in watching Disney cartoon movies, he never showed much interest in watching other kinds of movies. We were never sure whether this was a personal taste of his, or whether he couldn’t focus for an extended period of time or follow a story with a plot. Nonetheless, he has recently begun watching television shows and movies, enjoying them thoroughly. He has become a fan of two of my old favorites, The Waltons and Little House on the Prairie, following the struggles and triumphs of the Walton family in the 1930’s and 40’s and the Ingalls family of the late 1800’s. Even though their lives are quite different from his, Alex seems to show concern for the problems the characters face and acts pleased when they are able to overcome their struggles. Perhaps these shows have taught him how other people think and react in different situations.

According to the article in Science magazine, researchers discovered that those who read literary fiction did much better on Theory of Mind testing than those who read nonfiction, popular fiction, or nothing at all. Perhaps literary fiction allows the reader to identify with characters and then apply their understanding to people in real life. As an English teacher, I often take a psychological approach to literature, teaching my students to identify characters’ motives and to assess why characters act as they do in their circumstances. Although I wasn’t thinking about Theory of Mind specifically, I have always wanted my students to apply literature to their own lives to give real meaning to what they have read. As Common Core Standards become the educational guidelines for nearly all of the United States, their emphasis upon nonfiction could be potentially damaging for the development of students’ social skills. While nonfiction has its place in the real world, those of us who know the value of literary fiction will need to make certain students have the opportunity to read works that make them think about how humans deal with problems and interact with others so that they may develop their own interpersonal skills. With this in mind, I hope to engage Alex in more literary fiction, introducing him to some of my favorite characters so that he can not only enjoy interesting plots, but also learn from characters who can further develop his Theory of Mind and his social skills. As always, we try to keep Alex moving forward so that he can reach his full potential.

“All the believers were united in heart and mind. And they felt that what they owned was not their own, so they shared everything they had.” Acts 4:32


Sunday, November 10, 2013

Who Are You?


"Is that Santa Claus?” Alex suddenly asked me the other evening. In response, I looked around to see what had brought on that question out of the blue, thinking he had seen a picture of Santa on television, in a book, or in an ad. Unable to spot the famous “jolly old soul” associated with Christmas, I looked at Alex and asked him where he’d seen Santa. He pointed to himself, or more specifically, he pointed earnestly to the bright red shirt he was wearing at the time. Knowing that he has trouble identifying and discriminating between people, even himself, I explained to him that not everyone who wears a red shirt is Santa, which satisfied his curiosity.

Similarly, Alex will see little boys on television, out in public, or in magazine pictures and ask us, “Is that Alex when he was little?” Aside from the difficulty Alex has always had with pronouns, particularly I, me, and you, which leads him to refer to himself in third person as “Alex” to avoid the confusion of I versus you, he seems to have trouble with his own identity. I’m not certain that Alex has a clear sense of self, even though we have shown him pictures and videos depicting the real Alex when he was little.

Perhaps part of Alex’s confusion is that he has trouble recognizing people’s faces. When we are out places, he is constantly searching crowds for familiar faces, but he often misidentifies them. If he sees an older man wearing a plaid shirt, he’ll ask, “Is that Grandpa?” Even though the man may look nothing like my dad, Alex has two primary factors that identify Grandpa: age and clothing style. Similarly, he’ll see an older woman with curly hair and thinking it’s my mom, ask, “Is that Nanny?” Again, he has selected two features that he associates with his grandmother and tries to make a connection when he sees women he thinks resemble her. Even when Ed would run into a store or restaurant to pick up something, as we waited in the car, Alex would look around for men with gray hair and moustaches like his dad and ask me, “Is that Daddy?”

Understandably, a quick glimpse of a person may confuse him into thinking he knows them, but Alex also has trouble when he sees people for longer amounts of time or when he looks at photographs of people he knows. For many years, he could not tell the difference between my sister’s two daughters in person or in pictures. Certainly, they look similar, but clear differences between them that we pointed out to him didn’t seem to register. He would invariably ask as he pointed to one of his cousins, “Is that Hannah or Marybeth?” Although I thought his confusion might be that he didn’t see them on a daily basis, he had the same trouble distinguishing me, whom he saw every day, from my sister. Like his cousins, my sister and I share family resemblance, but the contrasts in our hairstyles and eye color should have been enough for him to tell us apart. Nonetheless, Alex still couldn’t tell the difference when he would see pictures of us because he would point and ask, “Is that Mommy or Aunt Tammy?”

Interestingly, a friend of mine who also has a child on the autism spectrum commented this week that his child doesn’t recognize classmates and can’t identify them by name, even if they are quite familiar. I remember another autism mom telling about her son describing a guest speaker at his school by saying that she had “a pink face and black shoes.” This difficulty in remembering and recognizing facial features makes me wonder what the cause is. Does the lack of eye contact, often common in autism, make viewing faces difficult? Perhaps sensory overload, also common in autism, makes concentrating on the person’s appearance overwhelming. Is navigating social situations so stressful that the person can only focus on himself/herself and not really pay attention to the other person? Or, do some people with autism suffer from prosopagnosia, or “face blindness,” as actor Brad Pitt claimed in a recent interview that he does, in which they simply cannot remember faces of people they have met? In contrast to his father, who cannot remember people’s names when he encounters them in social situations, Alex remembers names but not faces.

Another possible explanation for Alex’s struggle to identify people is that he remembers numerical values better than descriptive details. Specifically, he would easily remember someone’s birthday or height or address, but he couldn’t tell what color hair or eyes that person had. For that reason, he always wants to see people’s driver’s licenses because they provide all the information he wants to know about them. We have repeatedly told him that only police officers have the right to ask people for their driver’s licenses, but he still wants to ask to see them anyway, hoping to gain the insight he needs to remember people he meets so that he can quantify them in his mind.

While people’s statistics make an impression on Alex, their appearance really doesn’t matter that much to him. I’ve noticed that he generalizes people’s looks based upon how they interact with him; in other words, he finds people attractive if they are kind to him. Seeing past what they look like on the outside, Alex is more impressed with how they are on the inside, and he has an innate ability to see through to people’s hearts. While he may not remember exactly what they look like, Alex remembers what’s most important, and his ability to see the good in people is a gift God has given him. Maybe in that regard he really is like Santa Claus, constantly looking for people to put on his “Nice” list. Until people start wearing name tags or surrendering their driver’s licenses to Alex, I’ll just keep reminding him who people are, just as I’ve done for his dad for years. It’s a good thing at least one of us in the family has a good memory for names and faces.

“As a face is reflected in water, so the heart reflects the real person.” Proverbs 27:19

Sunday, November 3, 2013

Breakthrough


As I have explained in previous blog entries, Alex has been dealing with chronic candidiasis, or yeast overgrowth, in his digestive tract for many months, which is fairly common in children with autism. From the time he was a baby, we have treated him for yeast infections every few years, but they always responded to medication and were not as stubborn as this current round. In June 2012, a doctor diagnosed him with thrush and cheilitis, fungal infections in and around his mouth. Since then, we have repeatedly taken him to doctors, who have treated him with runs of antifungal medications and probiotics, hoping to rid his body of these pesky infections. In addition, we were blessed to find a family doctor last spring who emphasizes restoring Alex’s immune system through vitamins and nutrition so that his body can fight infection better.

As we have dealt with the yeast the past year and a half, we have noticed the same pattern repeat itself: Alex becomes irritable, impulsive, and obsessive as we then notice his saliva becomes milky and white spots appear in his mouth. Once he begins taking antifungals, not only do his physical symptoms disappear, but his behavior also improves significantly. His doctor pointed out that when Alex doesn’t feel well, he is just cranky, and his behavior reflects that irritability. While we certainly don’t want Alex to suffer from the thrush, we don’t want to suffer his wrath when he’s feeling ill, either. Consequently, we keep working with his doctor to get this fungal infection under control.

Last month we took him back to his family doctor again with the same symptoms: white spots, milky saliva, and increased agitation in his behavior. Once again, the doctor confirmed what we suspected—the thrush had returned despite two months of taking daily doses of the antifungal Diflucan. During the time Alex was on the medication, he was healthy and happy, and we had a terrific summer with him behaviorally. However, within a couple of weeks off the antifungal, we saw a decline in his behavior along with the telltale physical signs of thrush. This time his doctor wanted to try a new medication to see if it may be more effective long term and to prevent Alex’s body from becoming resistant to Diflucan. He prescribed the antifungal Itraconazole, which Alex takes twice a day, for six months if needed. Once again, we hoped and prayed for healing with this new medication.

Within a few days, we saw improvements in Alex’s mouth and behavior without any negative side effects from the medication, which was a blessing. In fact, last week, which marked three weeks of being on Itraconazole, was one of the best weeks we have ever had with Alex. Moreover, he was the best he has been in his life in terms of his behavior, mood, interaction with others, and speech. One improvement is that he has been more independent and focused, entertaining himself by reading and watching television instead of relying on Ed or me constantly. Not only has he been cooperative and pleasant, but his language skills, which have always been his greatest weakness, have also shown huge gains in a remarkably short time. Instead of speaking in short phrases or sentences with syntax, or word order, problems, he has been speaking clearly in complete, often complex sentences. Also, we have been working with him for many months to talk loudly enough to be heard instead of mumbling, and he has recently been speaking with an appropriate volume so that we don’t need for him to repeat himself. With this breakthrough in speech, we now have a much better idea of what he is thinking. For example, the other night, he asked me, “As people get older, does their metabolism slow down?” After all the years he has struggled with articulation (speaking clearly), volume, syntax, and generating speech, despite years of speech therapy, he finally has found his voice, thank God. Perhaps now that he can express himself, he feels less anxiety and frustration, which has helped his behavior. Perhaps now that he’s feeling better, he feels less need to engage in impulsive and compulsive behaviors. I truly believe that we are finally seeing answers to our incessant prayers for healing.

Interestingly, this week we received test results that we had run a few weeks ago before we began seeing the huge improvements. I had asked Alex’s doctor if we could run an organic acids test with yeast culture and sensitivity through Great Plains Laboratory to see what his urine and stool indicated as far as yeast and metabolism. We had not run one of these tests for about ten years, and we were curious to see what the tests might indicate. Although Alex’s doctor was not familiar with the test, he agreed that this test would be worthwhile after I showed him previous test results. Not surprisingly, Alex continues to show yeast overgrowth in his system as well as some metabolic issues that previous test results have indicated. Once again, his doctor and I will discuss what steps need to be taken to improve his health, but the current antifungal definitely seems to be a step in the right direction.

From our experience, I encourage other parents of children with autism to consider investigating the organic acids test to see if their children might benefit from the biomedical interventions the test recommends if results are abnormal. Dr. William Shaw of the Great Plains Laboratory has a special interest in autism and has done extensive research trying to find ways to help children with autism. His website [which can be accessed by clicking here] has considerable information and resources that offer help and hope. The remarkable improvements we have seen in Alex after having gone through terrible experiences with aggression indicate that proper medical treatment can make huge changes in the life of the child with autism. We kept hoping and praying for Alex to get better, and now we see that he can be better than we ever even envisioned. Through the grace of God and the help of doctors, Alex is getting better, and as parents, we are truly grateful.

“O Lord my God, I cried to You for help, and You restored my health.” Psalm 30:2

Sunday, October 27, 2013

Trick or Treat and Autism


This month, several articles have appeared online suggesting ways for parents to help their children with autism celebrate Halloween this week. Since Halloween and its accompanying costumes, candy, and creepiness can be overwhelming to any child--let alone those with sensory and and/or anxiety issues associated with autism--these tips can provide useful guidelines. As I read various suggestions, I found myself nodding my head in agreement at times, but at other times, I was scratching my head in disbelief at some of the stupid comments in these lists. Taking the best of these ideas along with our positive experiences of trick or treating with Alex, I offer my own version of Halloween Helpful Hints.

1. Costume Comfort: Many articles include this suggestion, which is a good one. Sensory issues may make wearing certain costumes, makeup, or masks difficult for children with autism. Here in Northwest Indiana, all kids have to consider the cold factor, which means being able to wear a coat or several layers of warm clothing under a costume to keep from freezing while trick or treating. For that reason, I usually incorporated sweatshirts and sweatpants into Alex’s Halloween costumes when he was younger.  Since I made his costumes for him, I involved him in their construction, discussing ideas with him, picking out the fabric together, and trying on the costume as I sewed it. Also, we knew he would never wear a mask, so that was never a part of his disguise.  Consequently, he was pleased with his costumes and eager to wear them. One article from a national autism organization pointed out the obvious: “If your child does not like their costume, don’t make them wear it.” Aside from the pronoun agreement error [their should be his/her—which bothers me as an English teacher!], this tip should be true for ALL children, not just those with autism.

2.  Practice: Several articles offered ideas of how to prepare children for trick or treating by doing trial runs at the houses of friends or relatives prior to Halloween. The process of ringing the doorbell along with saying “Trick or Treat” and “Thank you” seems like a simple one, but for kids with autism, this can be difficult. Some articles suggested social stories that include the steps for trick or treating to prepare children for this event. With Alex, we used to go over a list of rules before Halloween. We knew he was paying attention, because I could hear him softly chant: “Don’t go into people’s houses, don’t ask their weights or ages, say ‘Thank you’” as we walked along our trick or treat route.

3.  Vigilance: Since almost half of the children with autism have a tendency to wander away from places of safety, parents need to keep their children close at hand when trick or treating. With the additional activity and darkness, children could easily wander away and get hit by cars. Several articles mentioned the importance of carrying flashlights to help guide the way, keep an eye on the child, and reassure the child in the darkness. In addition to keeping the child safe, parents also need to make sure the child is calm. With all the activity, children with autism may become overwhelmed and melt down. As one article stated the seemingly obvious: “Know your child’s limits and do only what he or she can handle.” While this should be a guideline for autism parents (or any parents, for that matter) every day, this tip proves especially true for holidays. When Alex was younger, I kept him right by my side during trick or treating, which once led to my getting yelled at by a grouchy old man who informed me that I was too old to be trick or treating. (My lack of costume and trick or treat bag should have been a clue that I was a parent.) Also, I continually monitored Alex’s mood, asking him if he wanted to go to more houses or go home. Because he had the choice, he remained calm. When he was tired and indicated he was done, I immediately took him home. Common sense prevails.

4. Communication: Although autism is more prevalent, many people do not recognize children with autism nor understand their behaviors and may mistake their inability to communicate as rudeness. Although Alex could say “Trick or Treat” and “Thank you” (often with reminders), he wasn’t prepared for unscripted questions friendly people may ask him. Sometimes, I would cue him with an answer, and other times I would explain that he has autism, which makes speaking difficult for him. One article recommended placing an autism awareness sticker on the child’s trick or treat container and printing cards to hand to people with facts about autism. This struck me as a bit overboard, but I liked the idea of printing cards for nonverbal children that explained that they could not speak, so this card was a way of saying “Trick or treat” and “Happy Halloween.”

5. Alternatives: While trick or treating may be overwhelming for children with autism, some organizations provide Halloween parties for children with special needs that allow them to enjoy the holiday in a more structured setting. Another tip offered in articles is to have the child pass out candy instead of going trick or treating. After Alex was too old to go trick or treating, which he always enjoyed, we have had him engaged in passing out the candy. Most of the time, he prefers to watch us actually give kids the candy, but he likes seeing the little kids dressed up in costumes and listening to “the little voices” they have. With his mathematical mind, he keeps track of how many kids come to our door, which comes in quite handy. Yesterday, as I was buying Halloween candy, I turned to him to find out how much I needed to buy. Since he remembered how many trick or treaters we had last year, he was able to calculate how many bags of candy we should get.

Although most children eagerly anticipate Halloween as a favorite time of the year, for children with autism, this holiday can be overwhelming. By preparing them ahead of time, anticipating their needs, and being willing to change plans, parents can help their children with autism enjoy the occasion on their own terms. For more helpful suggestions regarding children with autism and Halloween, I recommend “Your Tips for a Safe, Comfortable, and Enjoyable Halloween” on the Autism Society’s website. [To access this link, click here.] This article is a compilation of ideas from parents of children with autism and offers truly useful suggestions. As for Alex, although I no longer need to make him a costume, he still insists that we decorate our pumpkin that we picked from the pumpkin patch last weekend. Truthfully, I’ll be glad when he tires of that tradition, since I’m the one who has the task of scooping out pumpkin innards. Happy Halloween to all!

“Yes, the Lord pours down His blessings. Our land will yield its bountiful harvest.” Psalm 85:12

Sunday, October 20, 2013

Plan B


About a year and a half ago, we began searching for a day program for Alex so that he could develop more skills and independence as well as spend time with peers. After visiting two programs, we immediately knew which one we thought was ideal for him. The first day program, housed in a beautiful facility, offered a variety of interesting and entertaining activities we knew he would find engaging. Moreover, everyone—staff and clients—seemed to be enjoying themselves, and we thought that Alex would be happy there, too, because he really liked visiting there. By contrast, the second program did not seem to offer well-planned activities, and the facility just had a sad feel about it, making us feel sorry for the clients. During the brief time we visited there, Alex kept asking when we were leaving and when we could go home. Clearly, this was not where we wanted him to be. Recently, the agency that ran that day program had its group homes closed down by the state for violations. Sadly, their residents had to be relocated to new groups homes after many years, often far away from their families, or their families, some with elderly parents, took them home to care for them. Interestingly, Alex’s intuition was correct about not wanting to stay there even though they were quite eager to have him enroll in their program.

After deciding upon the day program we believed was best for Alex, we filled out all the needed paperwork to enroll him. At first we were told there was an opening for him, and then that invitation was revoked because of concerns about his history of aggression. Even though medication was keeping his anxiety and agitation under control, they wanted him to do his trial evaluation under one-on-one supervision with their staff. Moreover, they wanted to wait until a major construction project that would more than double their facility in size was completed this fall. Although we were disappointed that we would have to wait, we understood their reasons and thought that he would be given a chance this fall once the construction was completed. After the addition to the facility was finished, Alex’s case manager and behavioral therapist began inquiring about when he might be able to start his trial evaluation there, and they were given vague answers about his being on a waiting list. Again, they cited his past aggressive behavior, despite his behavioral therapist and case manager noting the improvements he has made in the past several months with medication and therapy. While we certainly understand their concerns for the safety of their staff and other clients, we are disappointed that his progress does not seem to be a factor in consideration. In addition, their agency has taken some of the clients whose agency was closed by the state. Although those new clients do have a greater need, I suspect this also pushes Alex farther back on the waiting list.

Since our original plan that Alex would be enrolled in our chosen day program this fall does not look imminent, we decided that we needed to come up with an alternative plan that will keep Alex moving forward in his progress, a “Plan B.” First, we asked his behavioral therapist to have her counseling agency complete a new behavioral assessment of Alex based upon his more recent behaviors since the first assessment was done eighteen months ago. She agreed that with the progress he has made a new evaluation would provide a better picture of Alex’s current behavior for anyone who works with him. In addition, we asked his case manager if we could come up with a new budget for his disability funds. Since he is not currently using funds allocated for a day program, we would like to use them toward more behavioral therapy and perhaps other supportive therapies, such as music therapy.

After finding out that this change of plans would be acceptable for his budget, his behavioral therapist and I began brainstorming ideas of ways we could use additional therapy time. Thankfully, his behavioral therapist Jennifer is wonderful with Alex and is available, willing, and eager to work with him during an additional session each week. Even though she has only been working with him for a few months (after the first therapist moved out of state and the second one was promoted to a new position), we feel a comfort level with her as though we have known her for years. As she and I discussed possible activities for Alex’s second session each week, we agreed that increasing his social skills by doing fun activities would be best. These Friday sessions that will begin in November will include me so that Alex gets used to not having either of our undivided attention. We have discussed playing games and going on outings to the library, restaurants, the bowling alley, and stores—all of which we hope will improve Alex’s social skills and his ability to function well in different settings.

Not only are we grateful that Jennifer is able to do additional work with Alex, but we are also pleased that she has taken on this new responsibility with genuine enthusiasm.  Moreover, Alex adores her and looks forward to seeing her every week; he is delighted that he’ll now get to see her twice a week. What a blessing to have her in our lives! While Alex will be developing his skills, we will continue to hope that eventually he will be accepted into our chosen day program. As I told his case manager when I proposed the changes to her, we hope that the increased therapy time will ensure that when the day program is ready for Alex, he will be ready for the day program. While I’m not always patient about waiting, I know that God has a perfect timing, and I’m really looking forward to the fun Fridays Alex, Jennifer, and I are going to enjoy in the meantime.

"Trust in the Lord with all your heart; do not depend on your own understanding.  Seek His will in all you do, and He will show you which path to take." Proverbs 3:5-6

Sunday, October 13, 2013

Lab Tests


As I explained in my last blog post, Alex has been dealing with a chronic case of thrush for over a year. Despite several trips to doctors and urgent care clinics along with a variety of antifungals, we keep trying to get rid of this stubborn candida in his mouth. Last weekend, his doctor decided to try another antifungal medication to see if it may be more effective. In addition, he has concerns that the thrush will become resistant to the one medication we know works, Diflucan. We started the new medication this week, and so far, Alex seems to be responding without any negative side effects. Hopefully, this will be the one that finally knocks out the fungus for good. However, this may be a slow process, as his doctor gave enough refills for six months of this medication.

Since antifungals can affect liver function, Alex’s doctor wanted a blood test run to make sure the medication was not causing any damage. Last Sunday, we took him to the laboratory where we have his routine blood tests done because we never have to wait long, and their staff are friendly and pleasant. As they rapidly processed Alex’s paperwork, he happily watched a football game on the big screen television in the waiting room. Within minutes, the lab technician came to get us to draw Alex’s blood, and we recognized her because she has drawn his blood for previous tests.

Before we began, we reminded her that Alex does very well with blood tests; in fact, they never seem to bother him at all. As she placed the tourniquet around his upper arm before drawing the blood, she told him that she didn’t like tourniquets “because they hurt.” I’m not sure why she put such a negative spin on this step necessary to the blood test, so I quickly told Alex that they never bothered him in the past. Before she stuck the needle in his vein, she then told him that it would “just hurt for a minute.” Alex looked at me, and I reassured him that it would only be a little stick for a second, which was true and less upsetting. As always, he did great while his blood was being drawn, never flinching or complaining. After she was finished, she placed a bandage on his arm and instructed us to keep the bandage on for about twenty minutes. I told her that Alex never bled more than a pinprick after blood tests, and she replied, “Some people tell me that, too, and then they look to see blood running down their arm.” As my mom would say, this lady was a real “crepe hanger,” finding all the worst-case scenarios in a situation. Fortunately, I know Alex much better than the technician does, and he handled the test beautifully despite her frightening comments. Thankfully, blood did not run down his arm, and he seemed unfazed by the lab technician’s warnings.

In addition to his blood tests, I had asked Alex’s doctor about running a test his childhood doctor had done several times in the past, the Great Plains Laboratory organic acids test with yeast sensitivity and culture. This test assesses intestinal yeast and bacteria and determines which medications and supplements best treat the condition. Although Alex’s doctor was not familiar with the test, after showing him previous test results, he agreed that this test would be helpful in treating Alex’s chronic yeast overgrowth. With his authorization, I ordered the test kit, which arrived on Friday. Since we had not done one of these tests for several years, I had to refresh my memory as to how the urine and stool collection were to be done to make certain the results were accurate. For example, certain fruits, namely apples, grapes, raisins, pears, and cranberries, and their juices must be avoided for twenty-four hours prior to the test. The samples must also not come in contact with water; therefore, the “nun’s cap” specimen collector I purchased several years ago for tests makes the process easier since it fits nicely in the toilet. With all the paperwork completed and instructions clear, I was ready to play amateur lab technician with the single rubber glove they sent me. (Why they don’t send two gloves has always been a mystery to me.) Now, the rest was up to Alex to produce the samples.

Just as he is a trouper with blood tests, Alex is amazingly cooperative about urine and stool tests. In fact, he gets excited about these tests, asking when we’re doing them and when we’ll get the results. I suspect that he likes the numerical statistics that come with lab reports, but he also tells me that he likes the tests “because they’re rare and special.” His enthusiasm helps me deal with the gross factor of collecting the samples, especially the stool sample that needs to be made into a slurry before sending it to the lab. I’ve discovered the old saying to be true: to paraphrase, the more you stir it; the more it stinks. Nonetheless, Alex produced a good stool sample yesterday, and I managed to produce the slurry without gagging. The second part of the test required collecting his first morning urine, and this morning, he came through with flying colors, giving way more than was needed. Once again, I collected his sample, placed it in the test kit container, and was thankful we were able to complete this test easily. Tomorrow, we’ll have it shipped to the lab and await the results and hope to gain insight into what is lurking in Alex’s gut. While I wish that Alex didn’t have to deal with the yeast overgrowth that has chronically plagued his digestive tract, I’m thankful that we have a doctor who will aggressively pursue curing him and that Alex handles lab tests fearlessly and even happily. And now, as we so often do with Alex, we just wait to see what the tests reveal.

“Search me, O God, and know my heart; test me and know my anxious thoughts.” Psalm 139:23

Sunday, October 6, 2013

Divinely Designated Doctor


Yesterday we took Alex to the doctor for a follow-up appointment after two months of taking the antifungal medication Diflucan for thrush, yeast overgrowth in his mouth. As I mentioned in a recent blog entry, Alex has made great progress over the past couple of months. We believe that healing has been the main reason he has improved in many ways, including being calmer, showing mental sharpness, and speaking more clearly. Although we had hoped that two months of Diflucan would finally clear up the thrush that has plagued him for over a year, we saw signs of decline this past week since he finished taking the medicine last weekend. Instead of being content and easygoing, Alex has been irritable and obsessive. Knowing that we were taking him to the doctor, we bided our time this week and gave in to Alex’s requests to take two baths per day, which seemed to calm his nerves—and ours.

Before we left for his appointment, I asked Alex if I could look at his mouth, and he was cooperative about letting me take a peek. The inflammation, milky saliva, and telltale white spots explained his behavior this week: he has thrush again. Knowing that he was likely to be impatient if he had to wait long at the doctor’s office, I called the receptionist to see how the schedule was running. She told me that things were running on time, but a couple of minutes later, the nurse called to tell me that the doctor was about fifteen minutes behind schedule and suggested that we plan to arrive a little later so that Alex wouldn’t have to wait, which we really appreciated. Fortunately, his nurse understands Alex quite well, always turning the blood pressure/pulse monitor so that he can see it as she takes his vitals and allowing him to read her notes on his chart, knowing his interest in medicine and mathematics.

When we arrived, we were immediately taken back to an examination room, and a young man took Alex’s vitals, telling us that the nurse had reminded him to let Alex see the blood pressure numbers. After he wrote down the information, he turned the chart around for Alex to see, but as I told him, Alex had read the chart as he was writing because he can read upside down, which seemed to impress him. Thankfully, we didn’t have to wait long to see the doctor, who also understands Alex very well and interacts with him in a way that is compassionate yet never condescending. As he held out his hand to shake Alex’s hand (and as usual, Alex offered his left hand instead of his right hand), Alex showed what his behavioral therapist has taught him by shaking hands and saying, “Nice to see you,” which delighted the doctor, Ed, and me.

He then addressed Alex, commenting that he was reading a research article that made him think of Alex, and he began asking me about what amino acids Alex has taken. We discussed taurine and theanine, both of which Alex had taken in the past with some positive results, and I explained that Alex had negative side effects with tryptophan, which made him hyperactive. I also shared with him, since he is also an emergency room physician, the article I mentioned in my last blog entry about trauma surgeons using a combination of vitamin D, omega fatty acids, progesterone, and glutamine for patients with brain trauma. Since he placed Alex on three of those four supplements, he found that research interesting and recommended that we try glutamine, which he thought would be helpful. As we discussed the research we had read, he commented that he believes that divine guidance leads him to what he needs to know, and I totally agreed with him. In addition to his kindness toward Alex and us, our shared faith gives me complete confidence in Alex’s doctor.

After Ed and I explained the improvements we saw while Alex was on antifungals along with the decline we have seen this week post-antifungals, the doctor agreed that the thrush had likely returned, and his examination confirmed our suspicions. We discussed the problems of keeping him on Diflucan, which can lose its effectiveness over time, and the need to check Alex’s liver function, which the medication can affect. After consulting his electronic guide to medications, the doctor suggested another antifungal Alex had not tried, and he prescribed this medication daily for another two months. In addition, he gave us lab orders to have Alex’s liver function assessed through a blood test, which we will do this afternoon. Also, I asked him about running an organic acids test with yeast sensitivity and culture, something we had done with Alex in the past. While he was not familiar with the test, he listened intently as I explained the benefits of this urine and stool test that diagnoses metabolic issues and yeast overgrowth and additionally makes treatment recommendations. Apparently, my summary of the test was convincing, as he enthusiastically agreed that we should run this test on Alex. Consequently, I will soon be playing amateur lab technician, collecting Alex’s first morning urine sample and making a “slurry” of his stool to send to Great Plains Laboratory. Hopefully, this test, along with his blood test, will provide us with some guidance as to how to treat this aggressive yeast overgrowth.

Even though dealing with Alex's having thrush for many months has been frustrating and worrisome, we are very grateful to have a doctor who understands our concerns, works cooperatively with us in trying to help Alex, and interacts with Alex in such a positive way. For example, the last time Alex saw him, he kept staring at the doctor’s watch.  Without hesitation, he took off his watch, and with total trust, handed it to Alex to examine. Alex took a quick glance, gave the watch back to the doctor, and told him, “The date is wrong,” which made the doctor laugh, change the date, and comment on how smart Alex is. Just as Alex’s doctor believes that divine intervention leads him to the research he needs to help his patients, we believe that divine intervention has led us to him: God knew the doctor we needed to take care of Alex. Despite our concerns that the thrush stubbornly keeps coming back (or perhaps never really goes away), Alex’s doctor assures us that he’ll keep working until Alex is finally well. With a doctor who inspires confidence like that and who relies upon God's guidance, we know that healing is coming, and we anticipate that blessing eagerly.

“For since the world began, no ear has heard and no eye has seen a God like You, who works for those who wait for Him!” Isaiah 64:4