Truly Aware

 

Today ends another Autism Awareness Month. As many autism parents point out, every month, every day, and every minute (all 525,600 of them in a year, as Alex reminds me) mean autism awareness for our families. Beyond the blue lights and puzzle piece ribbons is the reality that more and more children are being diagnosed with autism, and the mainstream medical community seems to offer no real reason why. Moreover, the educational system and therapeutic support systems cannot handle the influx of all these kids with autism. As they age out of the educational system, programs for adults with disabilities cannot handle them, either, and many are not getting the services they need. That is true autism awareness.

Like many parents of adults with autism, we have our beloved son at home with us, requiring 24/7 care. He needs structure and routines to keep his anxiety from escalating. In fact, we keep a schedule posted on our refrigerator door for him to consult anytime he is concerned about what will happen next, even though he knows that we honor his precious timetable.

9:00 A.M.—Get up, take pills with juice

10:30 A.M.––Eat breakfast

11:00 A.M.––Brush teeth

11:30 A.M.––Eat lunch

12:00 P.M.––Change clothes

4:30 P.M.––Decide what’s for dinner

5:00 P.M.––Eat dinner

6:00 P.M.––Take vitamins; bath time

7:30 P.M.––Have dessert/snack

10:00 P.M.––Take pills, brush teeth, bedtime

Just to clarify, Alex needs help with every single item on this schedule. He takes a dozen pills three times a day and needs us to administer them to him, even though he can thankfully swallow pills. Because his hands shake from one of the medications to keep his anxiety under control, and because he has poor fine motor skills, he cannot pour his own drinks or prepare his own food. He also lacks motor planning skills, which means he needs help with brushing his teeth and changing his clothes. For this reason, I think of our family life in half-hour increments, knowing that Alex will probably need Ed or me to help him with something in the next thirty minutes. In addition, he has other tasks he assigns me at specific times, such as working the newspaper Sudoku puzzle at 1:30 and watching Jeopardy with him at 3:30. Also, his afternoons are scheduled with therapy sessions that I coordinate for him. Although he has become more patient over time, he values punctuality and can become unnerved if his schedule doesn’t go as planned.

Mind you, we are extraordinarily lucky parents in the autism lottery. We have a child who can verbalize––albeit awkwardly––what he wants and needs; only about half of people with autism are verbal. Unlike half of people with autism, Alex does not wander away from safe places so that we don’t have to worry that he’ll drown in a pond or get hit by a car in traffic or a train on railroad tracks. We are also fortunate that he can use the toilet independently and does not have chronic diarrhea or constipation, as many with autism do. Moreover, he doesn’t smear his feces as many do; he even flushes the toilet and puts down the seat, so I count my blessings daily on that score, especially since he was thirteen before he was potty trained. Also, we are grateful that Alex has overcome the sleep issues that plague many with autism so that we can all enjoy a good night’s rest that many families cannot.

God has also blessed us with a tremendous support team of professionals who genuinely care about our family and have helped Alex make good progress in his skills. Sadly, many families do not have these essential resources to help them. After dealing with extreme anxiety that fueled aggression, proper medication and therapy have allowed Alex to cope with his emotions so that he can enjoy life and so that we can have a peaceful family life. We know just how precious this existence is.

While we truly appreciate the progress Alex has made, we know that many families face struggles every single day because of autism, and we can empathize with the frustration they feel. I know how overwhelmed I can feel trying to meet Alex’s daily needs, and I can imagine that those with children who have even greater needs must be even more frazzled. We need to move beyond autism awareness and autism acceptance to autism action. Something needs to be done to help families cope with the daily burdens of autism: more useful research, more funding, more resources, more support. In the meantime, I continue to pray for a cure for autism so that Alex and others with autism will be healed completely and their families who love them can enjoy more abundant lives, freed from the obstacles autism presents. When the need for Autism Awareness Month disappears––now, that will be truly something to celebrate!

“O Lord, if You heal me, I will be truly healed; if You save me, I will be truly saved. My praises are for You alone!” Jeremiah 17:14

The Fidget Fad

 

Trying to teach middle school students the last weeks of school is always a challenge, even for veteran teachers like me. However, this spring a popular gadget is interfering with the learning process, despite its inflated claims of being a panacea for students with special needs. Advertised as the “must have toy for 2017,” fidget spinners are appearing in classrooms, much to the dismay of many teachers. While these handheld plastic flat triads with three bearings that can be spun supposedly help students with ADD, ADHD, OCD, autism, and anxiety, they are creating anxiety for many of the teachers whose students are bringing them to class.

Despite no studies showing their effectiveness, these fidget toys claim to relieve and reduce stress and anxiety, increase focus, build concentration, and help with boredom and restless hands. Some companies even market the fidget spinners as “educational toys.” The fidget spinners are also described as “addictive,” the one adjective I will agree is true. The low cost of these spinners––anywhere from $1-20, with most priced around $5––makes them affordable for nearly all students. The fidget spinner takes the place of the typical spring appearance of rubber bands to shoot, paper airplanes to throw, or the ever-popular erasers to toss. However, students claim they need these spinners to focus and be calm. Either they bought the hype or think that their teachers are that gullible.

To summarize, a fidget spinner is an attractive nuisance. If one kid has a spinner, everyone in the class wants to see it, touch it, spin it; they are mesmerized by these gadgets. They want to pass them around so that everyone can enjoy all the benefits of these miraculous inventions. Certainly, this does help them with boredom, as the ads claim, yet their focus and concentration are upon a stupid piece of plastic with metal bearings and not on what they are supposed to be learning in class.

Moreover, the sound of the spinning bearings poses a distraction. One ad claims that the low humming sound actually “helps promote a sense of calm.” As the teacher, that humming sound makes me want to take that spinner and throw it out the window, so it clearly fails to calm me. I suppose these fidget toys have become necessary because students cannot bring their phones or video games to class, and they simply do not know what to do with their hands when they aren’t holding an electronic device to entertain themselves.

Yet another disruptive fidget toy appearing in classes this year with similar claims of positive effects is the fidget block. Ranging in cost from $5-10, these cubes have various buttons and knobs on each of the six sides to provide sensory stimulation. While some of these fidget blocks claim to be silent, others make the same annoying sound made by the clicking of a retractable ink pen. Of course, one of the problems with the fidget spinners or blocks is the potential for dropping the item, which proves distracting for the entire class. However, these fidgets are slightly better than stress balls that roll down the aisles.

As an autism mom, I understand that some children do need sensory toys to help them focus and/or remain calm. However, as a teacher, I see many students jumping on the sensory issues bandwagon who don’t really need a fidget toy but just want to have something to play with in class. Because teachers must protect the privacy of our special needs students who are mainstreamed, regulating the presence of sensory toys becomes problematic. Consequently, I’ve had to accept the fidget toys so long as they remain in the owner’s hands and are used properly. However, when they start sharing their spinners with their friends and or taking them apart, they become mine until class is over.

If, indeed, students truly need to have sensory toys, I would recommend the following alternatives: pool splash balls, squeeze blocks that look like Legos, and desk buddy rulers. The advantage that all three of these items have is that they do not roll, would not inflict injury if tossed across the room, are silent, cannot be taken apart into pieces, are inexpensive, and have actual sensory value to students with sensory needs. The splash balls intended for playing in swimming pools are made of soft material lightly stuffed with polyester filling. They are lightweight, smooth to the touch, squeezable, and unlike stress balls, cannot roll easily. Squeeze blocks offer the same benefits. Desk Buddy rulers offer the various tactile stimulation of a fidget cube without the noise or likelihood of falling off the desk and rolling on the floor. If parents are considering buying sensory stimulation toys for their children with autism or ADD/ADHD, I would recommend any of these three items instead of the fidget spinners and cubes.

While students who actually have stress, anxiety, and focusing issues should have their needs met, those claiming to have these problems should not be playing with toys that distract them, their classmates, and their teachers. Good alternatives exist for students who truly need sensory stimulation, and parents and teachers should seek these items instead. Fortunately, teen fads rarely last long, and spinners will likely spin out of favor just as quickly as they arrived in classrooms this spring. After dealing with students doing the "dab" dance arm movements in the fall, we teachers know that annoying fads will eventually go away and be replaced by something equally annoying. In the meantime, we secretly hope that those parents who bought their children fidget spinners and cubes will be treated to a summer of humming and clicking and dropping them so that they can understand why we found these toys so annoying in our classrooms this spring.

“Rejoice in our confident hope. Be patient in trouble, and keep on praying.” Romans 12:12

Grace over Guilt

 

Most mothers, especially those who have special needs children, would admit one of the strongest and most difficult feelings to handle is guilt. Often we feel guilty for what we may have done that might have caused our children to have issues. At other times, we feel guilty for our perceived sins of omission, failing to do something that might have made a difference in our children’s lives. The saying goes, “Hindsight is 20/20,” and looking back on our lives, we recognize the things we may have done differently had we known what we know now. On the other hand, if we truly believe that God is guiding our lives, we realize that every event in life is necessary to get us where we need to be. That consideration relieves some of the pressure we moms face, knowing that everything in life, indeed, has a purpose.

To be honest, in my OCD fashion, I have scrutinized every possible thing that could have led to Alex having autism. If I had done things differently, might he have escaped this condition that makes his life more difficult than it needs to be? I remember a colleague of my obstetrician asking me point blank why I was still working midway through a pregnancy considered high risk. When I explained that my doctor had assured me that I could safely work up until the day I gave birth, as long as I felt well enough, he scoffed at me. Then he turned to Ed, wagged his finger, and said, “If she were my wife, she wouldn’t be working.” Perhaps if I hadn’t dismissed his opinion as old-fashioned, might Alex have not developed autism?

“Neither this [blind] man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.” John 9:3

In my last trimester, I caught the flu and had to be hospitalized because the virus made my blood platelet count drop to dangerously low levels. To treat this condition, the internist gave me gamma immune IVs, which I later discovered contained mercury as a preservative. Had I stayed home to avoid exposure to germs and not gotten sick, might Alex not have been exposed to the virus and mercury, which we later discovered had poisoned him?

“So let us come boldly to the throne of our gracious God. There we will receive His mercy, and we will find grace to help us when we need it most.” Hebrews 4:16

As a conformist who follows rules and guidelines, I implicitly trusted Alex’s pediatricians and faithfully took him to receive all of his vaccinations on time, even though he had been exposed to prednisone in utero that I was given to treat an autoimmune condition. When they assured me that he would be fine, I believed them, and gave him Tylenol as they recommended, never questioning the process. Had I done more research about vaccines and their toxic ingredients and known about how Tylenol hinders the body’s natural detoxification pathways, might I have spared him neurological damage?

“Each time He said, ‘My grace is all you need. My power works best in weakness.’ So now I am glad to boast about my weakness, so that the power of Christ can work through me.” II Corinthians 12:9

When I suspected that Alex did, indeed, have autism, I tried to present my concerns when he was three years old to his pediatrician, who basically dismissed me as a fretting first-time mother. Although I pointed out his language delays and resistance to toilet training, he assured me that Alex couldn’t be autistic because “He’s too smart.” Moreover, he was certain that Alex’s delays in speech and toileting were simply because he was a boy. Trusting his professional judgment, we waited another year before insisting that Alex be tested for developmental delays. Had I instead trusted my mother’s instinct and ignored the pediatrician’s opinion, would a year earlier of intervention have made a difference in the long run?

“In His kindness God called you to share in His eternal glory by means of Christ Jesus. So after you have suffered a little while, He will restore, support, and strengthen you, and He will place you on a firm foundation.” I Peter 5:10

The bottom line is that I have made multiple mistakes as Alex’s mom. However, many of the choices I made were based upon trusting professionals whom I thought knew better than I did. Moreover, my intentions have been focused upon doing what I thought was in Alex’s best interests. When I allow my mind to wander into the “What if?” scenarios, I realize that the guilt I feel is unwarranted and does nothing to change things. Furthermore, I’m certain that God has forgiven any mistakes I have made in raising Alex. Instead of carrying around guilt, I must accept the gift of grace and be thankful.

“God saved you by His grace when you believed. And you can’t take credit for this; it is a gift from God.” Ephesians 2:8

As we celebrate Easter and the resurrection of Jesus, we know that through God’s sacrifice of His son, all of our sins are forgiven. To hold onto feelings of guilt diminishes the value of that ultimate parental sacrifice. Grace is not something to be earned but something to be appreciated because it’s given in spite of our mistakes. Instead of looking back on what I think I should have done differently, I need to look back on all that God has done to make Alex better and how our faith, hope, and love have been strengthened, trusting that He will guide us to the future glory He has planned.

 “Therefore, since we have been made right in God’s sight by faith, we have peace with God because of what Jesus Christ our Lord has done for us. Because of our faith, Christ has brought us into this place of undeserved privilege where we now stand, and we confidently and joyfully look forward to sharing God’s glory.” Romans 5:1-2

Search: Alex and Google

 

In a previous blog entry, I explained that one of the best ways to find out what Alex is thinking is to check his Google search history. Because his speech is still delayed, he doesn’t always verbalize what is on his mind. In fact, if I ask him what he’s thinking, he’ll often blurt, “Nothing!” to avoid having to explain his thoughts. Truthfully, most of the time, I’m not too surprised by the list that appears in his search history, and I’m relieved to discover that he’s not searching topics that would make me worry about him. Last night, I took a quick peek at his most recent searches just to confirm that he's using his iPad and Internet privileges appropriately and was pleased to discover that he is. Moreover, I found some of his current topics of interest pretty interesting.

For example, one of Alex’s favorite pastimes is eating, especially at restaurants, which his search history confirmed. Alex had searched Google for two nearby restaurants, Culver’s, which is one of his favorites, and The Port, a drive-in restaurant open only in the summer. He had also searched the Panda Express menu, probably curious about what they serve and what he can eat there on his gluten-free and casein-free diet; a Panda Express is currently under construction in our town. Besides these restaurant searches, he also had typed in “how to stop being on a gluten-free diet.” I guess he hopes that someday he won’t have to avoid glutens.

Another common theme in Alex’s searches is celebrities. To illustrate, he looked up the birthdays of former Chicago Cubs baseball player Sammy Sosa and singer Celine Dion. Alex includes Sammy Sosa in his prayers every night, and I’m guessing he was curious about Celine Dion after seeing her on The Voice television show. He also searched for information about his favorite college basketball player, Valparaiso University’s star player, Alec Peters. In addition, he wanted to know how much country singer Miranda Lambert and the former host of the game show The Price Is Right, Bob Barker, weigh. Because Alex needs to quantify people by numbers, he likes to know their birthdays, ages, heights, and weights. However, he also knows that asking this information can be considered rude, but Google can tell him this information without making him seem nosy.

One of his search topics could seem cryptic, but I’m fairly certain that it was also related to his interest in celebrities––dead or alive. He will frequently ask about certain famous people and want to know if they’re still living. He finds the musical group the Beatles especially interesting since two of the Fab Four are dead. If he hears something about one of them, he’ll invariable ask, “Is he one of the dead Beatles or one of the alive ones?”

Yet another one of Alex’s interests––statistics––appears in his search history. For instance, he was looking up long words, specifically those with ten letters and sixteen letters. Combining his love of mathematics with his love of meteorology, he had Googled “13 most likely states to have tornadoes.” Also, he studies gas prices religiously, so I wasn’t surprised to see that he was checking out Gas Buddy, which provides current gas prices at various stations in the area.

However, Alex is the ultimate Gas Buddy, whose eagle eyes seek out gas prices as we drive along and compare and contrast the different prices at different places. He’ll excitedly announce from the back seat, “The gas prices at Speedway in Chesterton are four cents higher than the gas prices at Family Express in Valparaiso!” We find that his longest and most enthusiastic spoken sentences typically revolve around gas prices. This is a far cry from when he was younger and got upset by gas prices, throwing things from the back seat or kicking our seats if he wasn’t pleased. In fact, we had figured out how to get around town without ever passing a gas station just to avoid the wrath of Angry Gas Buddy in the back seat. Thankfully, that’s another phase that has disappeared.

Perhaps because Alex can now verbalize better what he wants to communicate, he doesn’t get upset about gas prices and other concerns. Apparently, he finds language acquisition as interesting as I do. Specifically, he had searched the following two questions: “When did language start?” and “When did you [meaning himself because he still confuses his pronouns] start having language?” Alex’s development of language has been interesting because he mastered reading and then writing before speaking. Maybe as his speech has been developing (especially with regard to commenting on gas prices), he has been more curious about his early language skills.

In reviewing Alex’s search history, probably the most curious topic I found was helicopter prices. Hopefully, when he discovered how expensive they are, he realized that he can’t afford to buy one. However, the most thought-provoking question in his search history was “How long is a long time?” He may have wondered about that because we frequently tell him that something happened a long time ago when he asks about some historical event. For his mind that needs to quantify an amount, he was likely seeking some specific range of years. Unfortunately, Google’s answers could not give him the precise details he wanted. Maybe he could put together those two topics, as in, it will be a long time before Alex can save up enough money to buy a helicopter.

While we are fortunate that Alex, unlike many people with autism, can speak and tell us what he is thinking, we are even more fortunate that we can get a glimpse of his very active mind by monitoring his online activity. Although he may claim that he has nothing on his mind, his Google search history proves otherwise, reassuring us that he lives up to his childhood nickname, Mr. Curious, and still loves to learn something new every day.

“So I set out to learn everything from wisdom to madness and folly. But I learned that pursuing all this is like chasing the wind.” Ecclesiastes 1:17

World Autism Awareness Day 2017

 

Today is World Autism Awareness Day, and yesterday began Autism Awareness Month. In anticipation of these commemorations, factions have been debating in the media primarily over two terms: acceptance and celebrating. For those who view autism as a defining personality trait instead of a disorder, acceptance of the condition as well as the person with autism is emphasized. Those parents who seek to make their children with autism better are accused of not accepting autism or their children. This is nonsense. That same faction views autism as something to be celebrated. However, for those dealing with extreme anxiety, debilitating seizures, painful digestive issues, upsetting self-injurious behaviors, and chronic sleep disorders, autism is a multi-faceted illness to be cured instead of celebrated. Do people celebrate cancer or dementia or any other disease that negatively impacts the quality of life for the patients and their families?

While I accept my son and love him unconditionally in spite of the autism that makes his life difficult, I do not celebrate autism or accept that autism determines his personality. We have seen the real Alex as the obstacles of autism have faded over time, allowing us to glimpse the brilliant mind and sweet soul behind the limited language, OCD, intense anxiety, and various physical ailments. Consequently, our abiding love for him drives us to help him continue to improve through behavioral therapy, music therapy, nutritional supplements, medication, gluten-free and casein-free diet, Epsom salt baths, and any other methods we deem safe and effective. We want him to be the best that he can be to make his life better, happier, and healthier. Isn’t that what all parents want for their children?

In many ways, Alex at age 25 is essentially a six-foot-tall preschooler. He cannot be left home alone, cannot dress himself, cannot fix his own food nor cut it into bite-sized pieces, cannot groom himself, and cannot ride a bike nor drive a car. He relies upon us for assistance with nearly every aspect of his daily living. Nonetheless, we are lucky, compared to many parents. After dealing with sleep issues when Alex was younger, he now sleeps peacefully through the night, and so do we. Unlike many people with autism, Alex does not have seizures, does not wander from places of safety, and does not still have to wear diapers. Thanks to thousands of dollars worth of medication and years of therapy, the extreme anxiety that led him to attack us aggressively both verbally and physically is now under control, and he manages his fears through calming techniques. Moreover, unlike many with autism, Alex possesses verbal skills––although still difficult for him––to express his feelings, thoughts, and needs. Because we have watched Alex struggle over the years with all that autism made difficult for him, we know how blessed we are that he has come this far. However, he still has a long way to go before he can be independent.

Since the rate of autism has skyrocketed in recent years, most people now know someone who has autism. However, unless they have lived with a child with autism, they probably don’t know what life with autism truly entails. Certainly, empathizing with anyone who has a particular condition proves difficult unless a person has experienced the circumstances first-hand. Even having raised a child with autism, I am often dumbfounded when I see statistics regarding autism and how it impacts those with the disorder and their families.

In honor of Autism Awareness Month and World Autism Awareness Day, I will go beyond symbolic gestures of wearing blue or lighting blue light bulbs. Instead, I will honor my beloved son, who loves numbers and statistics, and share the reality of autism with some eye-opening data provided by the National Autism Association.

“Autism now affects 1 in 68 children. Boys are four times more likely to have autism than girls. The rate of autism has steadily grown over the last twenty years. Autism is the fastest growing developmental disorder, yet most underfunded.”

“About 40% of children with autism do not speak.”

“Individuals with autism often suffer from numerous co-morbid conditions, including: allergies, asthma, epilepsy, digestive disorders, persistent viral infections, feeding disorders, sleeping disorders, anxiety disorder, OCD, sensory integration dysfunction, immune and autoimmune disorders, and others.”

“The mortality risk among those with autism is nearly twice as high as the general population, in large part due to drowning and other accidents.”

“Nearly half of children with autism engage in wandering behavior. Accidental drowning accounts for approximately 90% of lethal outcomes.”

Despite these rather grim facts, the NAA also states, “Autism is treatable, not a hopeless condition.”

While April is the designated Autism Awareness (or to some, Autism Acceptance) Month, for many parents and their precious children, every day is filled with autism awareness. Some of us still tie our adult children’s shoes, still remind them to wipe their noses instead of picking them, fix their gluten-free and dairy-free meals and snacks, and can’t help but feel wistful when we see their typical contemporaries enjoying a life that we once hoped ours would know by now. Nonetheless, we continue to do the therapies we know will help, research for better methods and potential cures, and celebrate our children for the milestones they reach, not the disorder that made those milestones more difficult.  Moreover, we continue to hope that they will get better with time. Most of all, we pray to a merciful God to deliver our children from autism and to keep them safe until we find a cure.

“God is our refuge and strength, an ever-present help in trouble.” Psalm 46:1