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