Normal

A common expression autism parents hear is the saying, “Normal is just a setting on the dryer.” Because life with autism is often anything but normal, this quote is intended to offer comfort, indicating that the concept of “normal” is often overrated. Although we wouldn’t trade Alex for the world, we often long for the normalcy of life that autism frequently denies us. Especially in May and June, I have to fight my feelings of jealousy toward people whose children are “normal” when I see their pictures on Facebook enjoying proms, graduations, weddings, sports, and vacations. Certainly, we are grateful for the progress Alex has made, but human nature makes us wish for an easier life, not just for Ed and me, but for Alex, as well.

This week emphasized the value of normal when we took Alex to the doctor for his annual physical. Since Alex receives disability benefits from the state, we must have a doctor assess his status and health each year. On one form, the doctor must confirm Alex’s disability as a diagnosis of autism with impulse control disorder and obsessive-compulsive disorder. These conditions qualify him as having a developmental delay, something that strays from the norm. On another form, his doctor must assess his physical health by checking a box marked N for normal or AB for abnormal for each body part or system. Thankfully, the doctor was able to mark N for everything for Alex, who is generally quite healthy, except for neurological and speech, which he marked as AB, or abnormal, with an asterisk “due to autism.”

In addition to filling out the forms we needed, Alex’s doctor went over recent test results with us. Because of the various medications he is taking, he needs to have blood tests every few months to monitor any possible side effects. Not only are we thankful that Alex always complies nicely with having his blood drawn for the tests, but we are also pleased that his test results always come back in the normal ranges, indicating that he is healthy and that the medications do not seem to affect him adversely. His most recent tests revealed that all of the results were once again in the normal range, which pleased us. In addition to the blood tests, we had also done a 24-hour urine collection to test whether Alex had any heavy metals in his system. When he was eleven years old, we discovered through urine testing that Alex had high levels of the toxins arsenic, mercury, lead, and aluminum. This led us to two years of chelation therapy with the medication DMSA, a sulfur-based compound that rids the body of toxins. Since we had not tested him in several years, we thought that checking his levels would be wise to see if any toxins had built up after completing chelation. Once again, we were relieved to discover that all of his levels on this test were normal, as well. The only thing that marred this good news that everything was normal was Alex’s abnormal frustration with having to wait in the doctor’s office, which is part of our life with autism.

Aside from the medical tests that indicate Alex is doing well in spite of autism, we have recently seen improvements in his thinking and language that suggest his brain is working better. Because his medications that help him deal with anxiety and aggression keep him sedated, Alex has not been as sharp mentally as he used to be. However, we have noticed that he seems to be regaining his perceptive skills lately, making comments on things he notices and asking interesting questions again. In the past, Alex liked to make proclamations that something was rare, and he has started doing this again, saying things when we’re driving, such as, “It’s rare for the speed limit to be 25 [miles per hour]; it’s usually 30 or 35 or 20 in a school zone.” Another day this week as he was looking out the window watching cars go down our street, he commented, “Purple cars are very rare.” In addition, he has been asking unusual questions, including, “Can we get some food from a gas station?” Food has been a big topic with him this summer, as anytime we go someplace, he will ask, “Will there be food?” He also makes very specific requests for food he’d like to eat, including asking me recently to make shish kebab for dinner. While these comments may not seem remarkable, to us they represent a return of the alert and observant Alex who was overwhelmed by anxiety and then sedated by medication for many months. During those difficult times, we missed his observations and comments that revealed his unique perspective on life. Once again, we begin to see how his mind works, and we welcome the return of the bright, funny, and clever person Alex truly is. For us, that is the normal we know, and while we aspire to the more traditional concept of a normal life, we feel blessed to regain what we thought we had lost and appreciate the comfort of the familiar as we hope for even better.

“Then you will have healing for your body and strength for your bones.” Proverbs 3:8

Summer Safety and Autism

In two recent blog entries [To read them, click here and here.], I have discussed concerns regarding the safety of children and adults with autism, given that nearly half of them have a tendency to wander away from safe places. In “Autism and Law Enforcement: A Safety Crisis?” I highlighted the need for better training of first responders in dealing with people who have autism and cited the recent example of an adult woman with autism in my county who was subdued by a police officer with a taser and arrested for stealing a neighbor’s beer in the middle of the night. In a similar story that happened one week ago [To read this account, click here.], a state trooper in Oregon used a taser on an eleven-year-old girl with autism who was found walking down the highway naked in the middle of the night. Because of her refusal to respond to his orders as well her unusual behavior, he assumed that she was on drugs and felt she needed to be subdued with the taser. Unfortunately, she was simply a child with autism who had escaped from her home in the middle of the night without her family knowing she was gone. Certainly the taser was a terrible experience for her, but she could have just as easily been hit by a car wandering around in the dark on a freeway. In fact, this Friday around three in the morning, a car hit a thirteen-year-old boy with autism who has a history of wandering from his home in St. Louis County, Missouri. Because it was dark, the driver could not see the boy until his car struck him; he is currently hospitalized in serious condition with a broken jaw and head injuries. [To read this news account, click here.] Clearly, keeping children and adults with autism safe must be a priority for all those responsible for their care.

On a more positive note, two news stories this week demonstrated the importance of awareness that can save lives. On Tuesday, a pool technician in Florida saved the life of a five-year-old girl who had wandered from her home where her grandmother was watching her while her mother was at work. [To read this article, click here.] After hearing splashing, he found her floating face down in a nearby pond, pulled her to safety, and called 911. Thankfully, his quick actions prevented tragedy, and she will be fine. Because of this experience, her mother has installed alarms on the doors of the family home to alert them should she try to escape again. In another story reported this week [To read this news article, click here.], a suburban Chicago police officer was honored for saving the life of a young boy with autism in March. While off duty and sitting in his car in traffic, Officer Sean O’Brien noticed the young boy wandering alone near a busy intersection, which concerned him. He parked his car and followed the boy, who headed toward the frozen Des Plains River and jumped in the water. The officer pulled the fully submerged boy out of the river to safety. Like the girl in Florida, this boy had wandered from his home while his grandmother was babysitting him. Fortunately, this police officer’s instincts and quick actions saved this boy’s life.

Unfortunately, not every autism wandering incident has a happy ending, as these two did. Many children with autism wander from their homes and die, and parents must take preventative measures to keep their children safe. Last week, I watched a free webinar sponsored by Talk About Curing Autism entitled “Autism-Related Wandering: Keeping Our Children Safe,” presented by National Autism Association President Wendy Fournier. After citing numerous cases where children with autism had wandered from safe places and died, often by drowning, the webinar offered suggestions for parents to help protect their children with autism. I have summarized them as follows:

1.     Make certain windows and doors are secure with locks the child cannot open. In addition, install alarms to alert the family if the child should try to open a window or door. Warm weather often makes escape easier for children, as screen windows and doors are less secure. In addition some parents put stop signs on windows and doors as visual reminders to children not to leave the home.

2.     In public places, make sure whoever is responsible for the child keeps a close watch in case the child decides to bolt. In some cases one parent has thought the other was watching the child when the child wandered. Also, the responsible adult should keep a tight hold on the child by placing both hands on the child’s shoulders or locking arms with the child to make sure he/she can’t run away.

3.     Prepare for an emergency by developing a Family Wandering Emergency Plan; a great resource is AWAARE.org. [To access their website, click here.] Make neighbors aware that your child has autism in case they see your child wandering alone, or in case your child escapes from home. We have made a point to tell our neighbors that Alex has autism. In addition, make law enforcement aware of your child’s autism. Our community has Smart 911, an online service where people can provide more specific information to first responders about their families. [To learn more about this free service, click here.] I registered our family last summer, providing information about Alex’s autism, pictures of our family, details about where our bedrooms are located, and more. While I hope we never need to utilize this service, knowing that we have provided this information gives me comfort that first responders would know something about Alex in an emergency.

4.     Since a large percentage of people with autism cannot communicate verbally, parents should have the child wear identification, especially in public places. A child who wanders may not be able to convey his/her name, address, and phone number; therefore, parents will want to have identification on shoe tags, clothing, or bracelets. This week, I ordered a medical alert bracelet for Alex with his name, our phone number, and AUTISM listed. The company from which I purchased his sporty flex band, American Medical ID, also offers a lifetime service for $20 called Interactive Health Record, in which a pin number is provided along with a toll-free phone number and website, where first responders can access more information, such as medications, emergency contacts, and names of doctors 24/7.  [To learn more about this service, click here.] On my to-do list this week is to register Alex with the interactive website so that when his medical identification bracelet arrives, his information will be current. Another form of identification some parents use is a shirt (which some teenage children who could wander in the night wear to bed) that identifies them as having autism and says if the child is found alone to call 911. This shirt is available from the National Autism Association’s store at their website. [Click here for their website.]

5.      If a child with autism disappears, parents should call 911 immediately for help and not just search for the child themselves. While some parents may fear repercussions by getting law enforcement involved, they need help from first responders. In addition, they must emphasize the need to check first any nearby water, such as pools, ponds, lakes, or rivers, as many children with autism gravitate to these dangerous places.

Although we have been blessed that Alex has never shown any tendency to wander and seems to have a healthy dose of fear when it comes to water, we know that we must continue to be vigilant when it comes to his safety. By putting preventative measures into place, we hope that we can continue to protect him from danger, and we pray that God will continue to watch over him and keep him safe from harm.

“For He will order His angels to protect you wherever you go.” Psalm 91:11

Father's Day

Any parent knows that raising a child is difficult, but raising a child with autism presents special challenges that test a parent’s patience, character, and faith. In some families, these challenges also test marriages, often breaking them apart and leaving those children to be raised by single mothers. While I am in awe of my autism mom friends who have raised their children on their own, I am thankful that I was never placed in that position. Despite the various struggles and frustrations autism has brought to our family, Ed has remained steadfast in his love and commitment to me and to Alex. I’m not certain that Alex fully realizes how blessed he is to have Ed as his father, but I do. On this Father’s Day, I’m not only grateful for the big things that that make Ed such a special father, but I’m also touched by the smaller gestures that could go unnoticed but mean so much.

1. When the three of us are driving in the car, Ed frequently checks the rear view mirror to see what Alex is doing in the back seat as we’re riding along. I often catch him smiling as he observes Alex enjoying the ride or swaying to music on the radio, and this makes me smile, too.

2.  Alex’s impaired motor skills makes teaching him sports difficult, yet Ed continues to teach him patiently, telling him the same instructions repeatedly. When we are at the miniature golf course, Alex is distracted by all the sights and sounds, but Ed never gives up trying to show him how to putt correctly, his hands over Alex’s on the golf club, reminding him to look at the ball as Alex looks at everything but the ball. I have to laugh every time he asks Alex, “Are you looking at the ball?” because I know Alex is not. Nonetheless, he never gives up trying to show him the proper technique.

3. Various times when Alex has awakened in the middle of the night, Ed has slept on the floor next to Alex’s bed to reassure him and to allow all three of us to get some sleep. I’m not sure how much Alex realized Ed’s sacrifice of comfort, but I’m certain that he felt comfort and security knowing his daddy was close at hand in the night.

4. Using a skill he has learned from his father, Alex loves to tease, and he finds joining with one of us to tease the other parent especially amusing. When Ed is making fun of my gullibility in believing stories that he has created, Alex finds this terribly amusing. Similarly, he likes to align with me when I’m teasing Ed about his sighing impatiently when he’s driving and frustrated by other drivers or having to wait for red lights. Alex also enjoys making fun of Ed’s Brooklyn accent, especially the way he pronounces alarm, Florida, foreign, and donkey, and he can perfectly imitate Ed’s extra or absent r’s and his distinctive vowel sounds. Even though Alex and I are finding humor at Ed’s expense, he is always a good sport about the teasing and laughs along with us.

5. Over the years, we have tried a variety of interventions to help make Alex better, and Ed has consistently supported whatever therapies or medical treatments I wanted to implement. From visual therapy to music therapy to chelation and many others along the way, Ed has trusted my judgment, knowing that I had fully researched the pros and cons of the approach, and has never questioned the time and expense we needed to pursue a treatment. When something didn’t work, he minimized the disappointment I felt, assuring me that at least we tried. When something did work, he shared my enthusiasm that we had taken a step in the right direction. I have always appreciated that he has understood my need to seek ways to improve Alex’s health and skills and that he trusts my decisions. I’m certain that Alex would not have made the progress he has, had it not been for Ed’s confidence in me, especially those times when I wasn’t feeling completely confident myself.

For these reasons and many more, I’m thankful on this Father’s Day and every day that Alex has such a loving and devoted father. Happy Father’s Day to all fathers who have blessed their children’s lives, and especially those autism dads who love their children unconditionally.

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

Autism and Law Enforcement: A Safety Crisis?

Two weeks ago, in my blog entry “Autism and Wandering: A Safety Crisis,” I discussed the prevalence of children with autism who wander away from safe places such as home and often wind up tragically drowning in nearby bodies of water. Specifically, I mentioned that in early May three children with autism had wandered away from their families and were found drowned. Since that entry was written, a fourth boy, Freddie Williams from Webb City, Missouri, who was fourteen years old and had autism, wandered from home and drowned in a pond. Clearly, this is an issue that cannot be ignored, and as I noted in my blog entry, parents will need to work with law enforcement agencies to develop training regarding how to deal with children and adults who have autism.

Along with learning how to deal with children who have autism and wander, law enforcement must learn how to interact with adults with autism who are agitated. A little over a week ago, an adult woman with autism in a town neighboring mine was arrested for theft, disorderly conduct, and resisting law enforcement. [To read the online newspaper account, click here.] She was caught stealing a beer from a neighbor’s outdoor refrigerator in the middle of the night, and when police approached her, she was not compliant with their orders, which is not surprising considering that people with autism often have trouble following verbal directions, especially in a situation where they are anxious. Apparently, she refused to come out of hiding from behind a shed, kept her hands in her pockets when she was told to show her hands, and attempted to flee. To subdue her, the police officer used a Taser on her twice. Certainly, the police officer needed to protect herself, but the thought of using a Taser on someone who likely has greater sensory issues than a typical person seems like cruel and unusual punishment. The police chief defended his officer’s use of the Taser, however, saying this use of force was appropriate in this situation.

As if this weren’t upsetting enough, a follow-up article published a few days ago [To read this article, click here.] indicates that a local judge has determined that the woman must remain in jail. Even though he admits that jail is not the proper placement for this woman with autism, he stated that she will have to make do there until they can move her to another facility with proper supervision that will meet her needs yet also protect society. The article also mentions that when the woman clearly did not understand the court proceedings, he addressed her mother, who like her daughter, broke down in tears when the judge told her she could not come home. My heart breaks for this woman who clearly does not belong in jail because she doesn’t understand the ramifications of her actions and for her mother who is trying to help her the best she can. Moreover, I’m not sure where the judge thinks he is going to place her, as we found out last year when we were dealing with Alex’s extreme behavior because no one wants to deal with adults with autism. There is no facility in this county who will deal with adults with autism, and parents of adults with autism are left to do the best they can to help their children on their own.

Last year, a teenage boy with autism in a town about an hour away from mine was shot and killed by police officers when his parents called for help to help subdue him. [To read a news account of this incident, click here.] When he threatened the officers with a knife and cut one of them, two officers each fired one shot, killing the boy. Again, police officers understandably needed to protect themselves, but perhaps better training in dealing with people who have autism might have prevented this tragic outcome. As more children with autism become adult-sized and difficult for their parents to manage, police are more likely to be called upon to help intervene when their behavior becomes extreme and potentially dangerous. Something needs to be done to keep everyone—parents, people with autism, and police officers—safe.

To protect our children with autism, whether they be those liable to wander into a pond or those who may become confrontational in a crisis, parents will need to lead the charge for better training of law enforcement so that they can help our children and not harm them. They need to understand our children’s communication deficits, difficulties with social skills, and anxiety that may lead them to basic “fight or flight” responses. A valuable resource can be found at the Autism Society of Maine’s website regarding law enforcement and autism with several links to excellent information. [To access this webpage, click here.] I’m hopeful that something can be put in place in every community that will prevent children with autism from wandering and drowning and from having adults with autism being subdued with Tasers or guns. After all, both parents and police officers have the same goal—to protect, especially those who cannot protect themselves. Perhaps some good can then come from these sad situations so that our children with autism will remain safe.

“Because you trusted Me, I will give you your life as a reward. I will rescue you and keep you safe. I, the Lord, have spoken!” Jeremiah 39:18

Acts of Kindness

 

In March, I wrote a blog entry entitled “Should Autism Be Neither Seen Nor Heard?” describing incidents reported in the media where children with autism and their parents had been treated badly in public places because of the children’s behavior. Fortunately, we have not had to face scorn in public, partly because Alex likes going places and generally behaves well when he is out and mainly because Ed and I make certain that his behavior never disturbs others. Keeping Alex close at hand, watching for cues that he’s becoming overwhelmed, knowing where all exits are located, and moving rapidly to remove him from others’ view should he become agitated, we never want him to bother other people. Nonetheless, we would hope that other people would be patient, tolerant, and understanding should he have a sudden meltdown, knowing that he really can’t help his behavior when anxiety overtakes him. Moreover, we would do everything in our power to calm him and remove him from the situation so that he wouldn’t be disruptive to other people.

To avoid ever having a public incident, parents whose children have autism would have to stay home all the time, which would not be conducive for their learning social skills and proper behavior in public. While taking these children places may involve some risk, we won’t know if our kids can handle situations until we test them. What has been a pleasant surprise for Ed and me is that not only have we found people who are tolerant of Alex’s differences but are also genuinely kind and willing to be especially thoughtful in their dealings with him.

Last week, we took Alex to the doctor because he has another outbreak of thrush, or yeast overgrowth in his mouth. We have only been seeing this doctor a few months, but we have been especially impressed with how kind he and his staff are to Alex and us. Knowing that Alex is fascinated with numbers and vital statistics, the nurse always tells Alex his weight, temperature, blood pressure, and pulse and tells him what they were the last time he was there. In addition, she makes certain to show him the monitor screen for the electronic blood pressure cuff so that he can watch the numbers change as it registers. While that gesture may seem small, it means a great deal to Alex, and even more to us as parents who appreciate someone making Alex happy. Similarly, the doctor has such a wonderful bedside manner with Alex, explaining everything to him as he exams him and speaking to him in a gentle yet never condescending manner. Not surprisingly, Alex actually looks forward to going to the doctor because they have made appointments such a pleasant experience for him.

Yesterday we took Alex to a Celebration of Wildlife at a nearby county park. Every weekend we try to find outings for him as a way for him to get out of the house, be around other people, and learn new things. The main attraction at this event was a large tent with several animal displays from veterinarians, animal rescue groups, and a zoo. The highlight for Alex was seeing turtles and tortoises, which are among his favorite animals. At one exhibit, he was intently observing a turtle when a young woman asked him if he would like to touch the turtle. His eyes lit up, and he shyly told her yes. She picked up the turtle, assured him it was very nice, and encouraged him to touch its shell. He was pleased to have this opportunity, and we were impressed by how sweetly this young woman spoke to Alex and allowed him to have a special hands-on experience. After that, she offered to let him pet a lizard from the display, also assuring him that the animal was nice, nothing to be feared. As she gently encouraged Alex, he also touched the tail of the lizard, which he found interesting. While Alex was impressed with the animals, I was impressed with how naturally she interacted with him and appreciated how kind she was to make his experience at the exhibit more special. A few minutes later at another exhibit, an older gentleman observed Alex happily watching small alligators swimming in a wading pool at his display and offered to let Alex touch one of them if he would like. When Alex indicated that he wanted to touch the alligator (which had its mouth duct taped shut so that it couldn’t bite), the man kindly reached into the pond to get the alligator and hold it for Alex to see and touch. Noticing that Ed had a camera, the man also offered to let Alex take a picture with the alligator, which was a thoughtful gesture. Like the young woman, he was friendly and encouraging with Alex, but he did so in a way that was genuinely kind, a seemingly effortless gesture to make Alex happy.

Whenever people are kind to Alex, they endear themselves to Ed and me and reaffirm a faith that the majority of people are good. While not everyone may realize that he has autism, I’m sure that most people realize that Alex is different from observing him a few minutes. When people are willing to look past his differences and reach out to him with genuine kindness, I hope they feel the joy they bring him and the gratitude Ed and I feel for their efforts. Of course, Ed and I make certain that they know how much we appreciate their kindness by having Alex thank them for their gestures and always expressing our gratitude to them, as well. While their actions bless us, I hope that their interactions with Alex bless them, too, so that they might bless other children like him. I’m reminded of a line from Israel Horowitz’s play I teach my seventh grade students that is an adaptation of Charles Dickens’ A Christmas Carol: “An act of kindness is like the first green grape of summer: one leads to another and another and another.” Moreover, I hope that Alex not only appreciates the kindness of others but truly learns from their examples so that he can show others kindness, too.

“We prove ourselves by our purity, our understanding, our patience, our kindness, by the Holy Spirit within us, and by our sincere love.” II Corinthians 6:6