Protecting Our Children

 

Protecting our children proves one of the most important and difficult challenges all parents face. When those children remain childlike even into adulthood, as many children with autism do, that obligation continues and often becomes even more difficult. Three recent news stories sadly reveal how vigilant autism parents must be in protecting their older children who cannot safely navigate society on their own.

This week, in a town near where I live, a sixteen-year-old boy and a twenty-year-old man were taken into custody for attacking a seventeen-year-old boy with autism, hitting him in the face and back of the head. Apparently someone videotaped this incident, and police were able to view this video. The victim told police that he didn’t understand why the two young men hit him, and his parents reported that he is autistic and non-confrontational. According to the twenty-year-old attacker, they were “just playing” and “didn’t hit [the victim] hard.” [To read this news report, please click here.]The flimsy excuses and lack of remorse offered by these bullies who preyed upon a disabled teenager is disturbing. Moreover, parents of older children with autism need to be aware of potential dangers, including cruel people who would victimize our children for fun, because our children can be oblivious to situations where they could be harmed.

In a similar recent incident, a fifteen-year-old boy with autism was the victim of a so-called prank orchestrated by his peers in suburban Cleveland, Ohio. Telling him that he was participating in the widely known ALS ice-bucket challenge, they instead dumped a bucket of urine and tobacco on his head and posted a video of this disgusting act online. After his parents saw this video, they contacted police, who investigated the matter, which gained national attention and outrage. Notably, comedian Drew Carey offered a $10,000 reward for information leading to the identification of those involved in perpetrating this cruel trick. After detectives investigated the case, they identified five teenagers, aged 14-17, who were involved. Prosecutors are currently reviewing the case to determine what charges may be filed. [To read an account of this incident, please click here.] Claiming that this was just a joke, these teenagers also seem to lack an understanding of how wrong it is to victimize a teenager with autism and then post the incident online for others to see. Again, parents of teenagers with autism must know who their children’s "friends" are and protect them from those who would humiliate and harm them.

Besides protecting our children from peers who would harm teens and young adults with autism for their own cruel entertainment, autism parents must also be vigilant against a surprising source of potential danger to our children. This week in Flemington, New Jersey, twenty-two-year-old Tyler Loftus, who has autism, bipolar disorder, and the mental capacity of a five-year-old, was arraigned in court for making “terroristic threats” and  for “unlawful possession of a weapon,” a three-inch pocket knife. Instead of teenagers who would get pleasure at the expense of a person with autism, Tyler Loftus is the victim of a failed system that should be protecting him.

After spending seven years at Woods School in Pennsylvania, where his developmental disability and mental health needs were addressed successfully, the Return Home New Jersey program forced him to obtain services in New Jersey, placing him in a group home, where his severe needs were not met, despite his mother strongly advocating for him. According to her, the past year and a half, he has had difficulties with the clients and staff at the group home because his mental health needs have been ignored, which leads to nearly daily 911 calls and trips to the local emergency room for assessment. Since the hospital cannot treat him appropriately, they return him to the group home. After allegedly threatening his roommate, he was arrested and placed in jail; this week he was arraigned and faces a court date next month regarding the criminal charges, which he clearly does not understand. [To read an account of this situation, please click here.] Incarcerating this young man with autism who clearly needs psychiatric care strikes me as not only heartbreaking but also as cruel and unusual punishment, and I pray that he gets the help he truly needs.

From our own frustrating and upsetting experience of trying to get help for Alex nearly three years ago, I know how limited resources are when it comes to helping adults with autism. Certainly, young men with autism cannot be allowed to be threats to society, but jail is not the answer to this serious problem. The lack of facilities that know how to treat behavioral and mental health issues related to adult autism is appalling and must be addressed. In the case of Tyler Loftus, he was receiving the proper care he needed, but the state of New Jersey took that support away from him because it was not being provided within their state. As parents of adults with autism, we must make others aware of the injustice our children can face and continue to protect them from those who will do them harm, whether knowingly or unknowingly. Our precious children deserve much better.

“The Lord says, ‘I will rescue those who love Me. I will protect those who trust in My name.’” Psalm 91:14

Fighting for Our Children

This week, the U.S. House Oversight and Government Reform Committee held meetings in which members of Congress questioned representatives from the National Institutes of Health and the Centers for Disease Control as well as autism advocates regarding the recent significant increase in autism. Fifty years ago, the U.S. autism rate was 1 in 10, 000 children; under the current epidemic, 1 in 88 children in the U.S. has autism. A controversial topic discussed was the potential role of vaccines, which the NIH and CDC insist has no link to the increase in autism rates. However, their research studies that often focus upon genetics have not proven helpful in dealing with the rise in autism or in helping those already diagnosed with autism.

                                                                                                                               

By contrast, autism advocates emphasized the need for environmental research, treatment, and services, especially for adults with autism, who have limited resources currently available to them. During the hearings, the need for parental input, which is often ignored by scientists, was emphasized since parents have direct experience with autism. Rep. Paul Gosar of Arizona commented on the valuable knowledge parents of children with autism have, stating, “We should be focusing on the family. They’re telling you what’s going on.”

In watching video clips from the hearings on C-SPAN’s website, I was impressed with many of the members of Congress who showed great compassion for the families touched by autism and frustration with the government agencies who are failing to serve these children. Despite the millions of dollars spent on research, a definitive cause for autism appears to be nowhere in sight, and they appear to be no closer to discovering a cure. Furthermore, services for children and adults with autism cannot keep pace with the rapid rise of newly diagnosed cases. I watched as parents and autism advocates in the audience nodded their heads in agreement as to what needs to be done to help and shake their heads or roll their eyes in frustration as representatives from the NIH and CDC failed to give any useful information. These government agencies need to know that parents of children are not going away quietly, and with dramatically increasing autism rates, there are going to be even more parents demanding answers and help for children and adults with autism.

One of these autism parent-advocates, Lorri Shealy Unumb, appeared on the stage of the NASCAR Sprint Cup Awards on Friday evening with her son Ryan, who has autism. After her son was diagnosed, she discovered that insurance companies would often not pay for services for children with autism. Using her legal expertise as an attorney, she drafted a bill for the South Carolina legislature regarding insurance reform so that children with autism would be covered. Known as “Ryan’s Law,” this bill has been enacted in 31 states to help families with autism get insurance coverage for their children’s treatment. In addition, seeing the need for appropriate education for children with autism, she established the Autism Academy of South Carolina. As a fellow autism mom, I was delighted that NASCAR recognized Lorri Shealy Unumb’s outstanding efforts to help families dealing with autism by honoring her with the Betty Jane France Humanitarian Award. 

If there is any doubt about parents’ commitment to their children with autism, one only need to observe the efforts they expend to help their children get better. This week I had the opportunity to meet three autism parents whose devotion to their children was apparent in our conversations via e-mail, phone, or Facebook. The first, Julie Tracy, had left a comment on my blog telling me about her son, who is about Alex’s age, and the nonprofit organization her family has established to help adults with autism, the Julie and Michael Tracy Family Foundation. According to their mission statement from their website, “The JULIE + MICHAEL TRACY FAMILY FOUNDATION is dedicated to improving the quality of life and independent outcomes for adults with autism, advancing psychiatric research and expanding public awareness and understanding of this rapidly expanding demographic.” In addition, they are planning a residential setting for adults with autism that will allow them to develop independence and skills needed to be successful. Through our e-mails, I learned that Julie’s son, like Alex, had to be hospitalized for psychiatric treatment, and their experience made them realize the need for appropriate services for adults with autism, leading them to develop the foundation to provide necessary supports not currently available. Her devotion not only to her son but also to others like him motivates her to accomplish a noble goal to help adults with autism who cannot help themselves.

Besides my e-mail conversations with Julie, I had a phone call from an autism dad this week who told me about his two adult sons with autism; he and his wife have dedicated themselves to making life better for these two young men. Despite all our efforts and interventions, both of our families have struggled with our sons’ aggression. He and I discussed the various medications our sons have been prescribed to help them function better. Although neither of us works in the medical field, we discussed the medications, their classifications, generic names, and side effects as though we were pharmacists.  As autism parents, we have learned to navigate the medical field, learning the lingo along the way. During our phone conversation I was impressed with his fierce devotion to his sons and his optimistic attitude about making their lives better. Also, by connecting with him and Julie Tracy, I felt comforted that other parents had been through experiences similar to those Ed and I have had with Alex.

Another autism parent connection I made this week was with an autism mom through one of my Facebook groups. After finding out that her child has sensitivities to glutens, she decided to implement the gluten-free diet and wanted suggestions as to what her child could eat on this very restrictive diet. Since Alex has been on the gluten-free diet for many years, I was able to make some suggestions about gluten-free foods and substitutions. As she and I e-mailed back and forth several times, her strong motivation to help her child was evident, and I was pleased to be able to help get her started on the gluten-free diet. Throughout this week, I have been reminded that the only way the autism tide is going to turn is through the tireless efforts of parents who will not give up until their children get the help they so desperately need. Moreover, by working together, parents can share information, insights, and support so that we can accomplish our ultimate goal: helping our children to reach their full potential.

"I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, 'Move from here to there,' and it would move. Nothing would be impossible." Matthew 17:20

Avoiding Annoyance

One of my guilty pleasure pastimes is watching old reruns of the television series Sex and the City. In one episode Carrie wrote a column about “Secret Single Behaviors” after accidentally discovering that her boyfriend Aiden used Rogaine because his hair was thinning. Her own “SSB,” as she abbreviated it, was not talking for an hour after she came home, something Aiden needed to learn to respect. To use Carrie’s frequent catch phrase, “I couldn’t help but wonder…,” and I began thinking about what secret behaviors autism moms use to cope with the various aspects of our somewhat unusual lives. Some of these actions help us maintain a level of sanity, but most probably revolve around avoiding annoying our overly sensitive kids. As I catch myself doing some of these Secret Autism Mom Behaviors, or SAMB’s, I realize that most people with typical kids have no idea the things we do to keep harmony in our households. Therefore, I decided to share my secrets and reveal some of my SAMB’s to give a glimpse of a day in the life of one autism mom.

Since Alex, like many people with autism, relies upon routines (Think of Raymond in Rain Man insisting that the syrup must be on the table before the pancakes arrive.), we try to maintain a predictable schedule. Currently, he wants to eat lunch at noon and dinner at 5:00, and if food isn’t on the table by those set times, he’s likely to be agitated. To reassure him that things are remaining on schedule, we make sure to turn on the microwave before mealtimes so that he hears the oven running and knows we’re in the process of preparing a meal, keeping him calm. I’ve also learned not to set the table until the last minute because as soon as he hears plates and silverware clinking as they hit the table, like Pavlov’s dogs when the bell rang, Alex is ready to eat. Another one of Alex’s routines is list making. To avoid having our house become a cluttered mess of paper emblazoned with Alex’s scrawl, I must engage in a SAMB that Alex cannot know. Since he places value upon his written work, he would probably like to keep every list he’s ever made. To prevent him from becoming annoyed with my need for organization, I sneak his lists to a place where he can’t find them. If he doesn’t seem to miss them after about a week, I hide them in the recycling bin among the old newspapers. So far, he hasn’t caught on to my regular purging of his paperwork, so I’ve kept him from being annoyed with me about that.

To avoid disturbing Alex’s overly sensitive hearing, I’ve learned a few tricks so that he can’t hear what I’m doing. For example, I’m always concerned that my flushing the toilet early in the morning before I go to work might wake him and set him off. Therefore, I listen for the furnace, air conditioner, or humidifier to go on before I flush so that those mechanical noises can drown out the sound of running water. Another thing that bothers Alex currently is people talking on the phone. I’m not certain why this irritates him, but we never answer the phone and simply wait for the answering machine to pick up the call. If someone other than a telemarketer is trying to reach us, we sneak off to a phone where he can’t hear us to return the call. If we want to make phone calls, we do the same thing, hiding in the basement or lurking upstairs in our bedroom with the door closed. As far as Alex knows, we never use the phone, so he probably wonders why we even have one. Probably the most secret of my secret autism mom behaviors is coughing. Alex has a fit if anyone coughs, worried that they’re terribly sick and going to get laryngitis. Ed and I have learned that the only way any of us can get any sleep when one of us has a cold with a cough is to sleep downstairs where Alex can’t hear the coughing. Moreover, we have learned to cover accidental coughs by pretending to sneeze, moving chairs to make noises, etc. We are also pretty good at escaping to rooms where he can’t hear us cough. A recent cold that left me with a cough found me running to the basement, garage, front porch, or our bedroom, where I muffled my cough with a pillow. If all that sounds ridiculous, I must confess that sometimes when I’m driving alone in my car, I cough just because I can do it without fear of reproach. Perhaps that’s the oddest of my SAMB’s because I derive a strange sense of satisfaction from coughing uninhibitedly, not worried about any consequences. As I think about all the different ways we try to avoid annoying Alex, I pray that he will become more tolerant of others’ behavior so that we can relax and not worry that he will get upset over the small things in life. Cough, cough.

“God will judge us for everything we do, including every secret thing, whether good or bad.” Ecclesiastes 12:14

Unexpected Rewards

Last weekend I had the rare opportunity to visit with two favorite cousins I hadn’t seen in several years. As understandably proud mothers, they talked about their children—now successful young adults who are intelligent, attractive, and very nice people. In addition, I spent time with my sister and her two daughters, my beloved nieces who are now eleven and fourteen years old, and as Ed aptly describes them, “the nicest girls,” who are also smart, pretty, and personable. Although I am genuinely pleased that their children are doing well, I can’t help feeling a bit wistful that my child still struggles with simple tasks. Their children eagerly anticipate dating, college, and careers, but Alex’s future holds uncertainty and perhaps none of those milestones of young adulthood. On the other hand, he has been spared from much of the angst of the teenage years because he simply doesn’t care what other people think of him. However, as his parents, Ed and I sometimes feel that we are sitting at the airport, waving as our friends and family depart on their journeys of life while we sit in the terminal, waiting on stand-by for a flight that may or may not ever arrive. As much as we try to fight it, sometimes jealousy arises.

Whenever I’m tempted to sink into self-pity mode, something happens to lift my spirits and make me feel blessed for what we have. This week, we took Alex to the dentist for his regular six-month cleaning and check-up. As I described in “Dentist,” Alex loves going to the dentist, and we are thankful that his dentist and especially his dental hygienist are wonderfully patient and sweet with him. While we were pleased to hear the good news that Alex’s teeth are very healthy—he has never had a cavity in his life—we were even happier to hear that he was remarkably cooperative and pleasant. His hygienist enthusiastically told me, “He just gets better and better!” The dentist, whose practice he once told me is comprised of 25% special needs patients, then commented that he knew that Alex faced various challenges, yet we had done a really good job with him and should feel proud. That kind comment blessed us and gave me encouragement I needed. Since Alex had done so well at the dentist, Ed treated him by taking him to one of his favorite places, Walmart. Although most teenagers would not be caught dead grocery shopping with their fathers, Alex loves going with Ed and pushing the cart—for him, this is the equivalent of an amusement park. When they returned home, Ed proudly told me what a great job Alex did navigating the cart through crowded aisles, smiling the entire time. To think that about a year ago, we were pushing Alex in a transport chair through the store because we didn’t trust him to walk through the store on his own makes this progress amazing to us. Besides improving his behavior, Alex also seems to radiate joy that’s contagious. Ed noticed that as Alex smiled, people in the store saw him and smiled back. Perhaps this is his mission in life: to make others feel the joy he finds in everyday experiences.

Along with these two positive experiences this week, Alex also had another good session at music therapy. For the past few months, his music therapist has remarked that he has seen great progress in Alex, especially in his social skills and language, to the extent that he only points out small issues, refining and working toward mastery of skills that took time to develop, such as speaking at an audible volume and looking at people when he talks. In contrast, we have noticed other children in the therapy office waiting room who still struggle with behavioral issues, and we have felt empathy toward their parents who are trying to help their children. As Ed commented the other day, whenever we feel bad about something that Alex can’t do, we see other children who are more profoundly affected by their issues and feel thankful that he has accomplished so much over the years. The other night, as I was mulling over the reassurances we’ve enjoyed from these unexpected rewards this week, I heard country singer Darius Rucker’s new song, “This,” and its uplifting lyrics resonated with me: “All the doors that I had to close, everything I knew but I didn’t know, thank God for all I missed, ‘cause it led me here to this.” Although our path in life hasn’t been typical, looking back, we are, indeed, blessed that God has led us to this.

“So do not throw away this confident trust in the Lord. Remember the great reward it brings you!” Hebrews 10:35

Parenthood

This week’s episode of the television series Parenthood, “Qualities and Difficulties,” raised some interesting questions regarding how to handle a child with autism. On the show, Max, the son of Adam and Kristina, has recently been diagnosed with the autism spectrum disorder Asperger’s syndrome and has been involved with special training to improve his social skills. In a heated argument with his brother, Adam blurts out in exasperation that Max has autism, which Max overhears and begins questioning. Trying their best to explain to Max what autism is, they use the words disability and tough, and Kristina begins to cry when Max asked if either of them has Asperger’s, and they must tell him that he’s the only one in the family with this condition. Later, when talking to a therapist about the situation, he criticizes the way they handled themselves, saying that they shouldn’t have used negative words or revealed that they were upset; instead, they should help Max focus on the positive aspects. In addition, he gives them a script to use in how to explain Asperger’s to Max so that he can understand it, yet not feel bad about having it.

With Alex, we have been fairly candid about autism and have talked about it rather honestly with him. Just as parents who adopt children are advised to speak openly about the adoption from the time the children are little so that they don’t feel that secrets are kept from them when they find out someday, we felt Alex should know that he has autism and have tried to explain what it means so that he can understand it better. Knowing that his overhearing conversations about autism—especially since he has such acute hearing—was quite likely, we’ve never kept it a secret from him. Moreover, if someone other than us raised the issue of his having autism, we wanted him to feel comfortable with the idea, just as if someone commented that he has brown eyes. While we have emphasized his strengths, telling him how smart and pleasant he is and praising his strengths in memorizing, math, and computers, we have also explained that language and fine motor skills do not come as easily for him as they do for other people, and we understand that he sometimes feels frustrated when he has to work harder to accomplish certain tasks. We have used what the therapist in Parenthood would deem negative words, such as tough and difficult, because they accurately describe some aspects of life. However, we have also shown Alex that everyone has certain challenges that may require help. For example, I can’t see anything without glasses or contact lenses and need a calculator to solve tough problems because math doesn’t come easily, unlike Alex who has perfect vision and can rapidly solve math problems in his head. We have never wanted Alex to see himself as a victim; therefore, talking about autism as naturally as we talk about the weather has made the situation ordinary and something I don’t think he gives much thought, accepting life as it is, but striving to be the best he can because that’s what we have emphasized to him.

In that same episode of Parenthood, the father later decides to take Max to an amusement park, even though it’s a school day. Of course, with Max’s need to follow routines, he resists the suggestion at first, but his dad convinces him to go by telling him that they can ride a favorite roller coaster all day. Unfortunately, when they start to ride the roller coaster, they are told that the ride is broken and will be unavailable all day because it must be repaired. This sudden change of plans sends Max into a meltdown, disappointed that his plans have been ruined, and he keeps yelling, “It’s not fair!” Naturally, his dad feels responsible that Max is upset due to circumstances beyond his control. The other day we took Alex to Walmart, which he regards with the same enthusiasm most kids do about amusement parks. Happily pushing the cart and helping with the grocery shopping, Alex traveled through the store with a big smile on his face. When we got to the checkout line, the woman in front of us was having problems using her credit card. After much discussion with the Walmart clerk and later a store manager, they finally had to void most of her purchases and leave a cart of merchandise sitting there. Through all of this delay, Ed and I kept watching Alex nervously, wondering if this unforeseen set of problems might upset him and debating if moving to another line might be faster. Fortunately, Alex remained patient and never complained about how long we had to wait. When we got back to the car, Ed commented that he was waiting for a roller coaster meltdown, referring to the Parenthood episode we’d both seen the previous night. Although having to wait wasn’t fair, Alex was able to remain calm and pleasant, and we felt thankful that he seems to be learning how to deal with unplanned delays, a sign that he is not only maturing but also overcoming one of autism’s obstacles. Since life, indeed, isn’t always fair, we’ve tried to be honest with Alex and help him learn to deal with the unexpected, which the three of us have learned together along this autism journey, strengthened by our faith.

“So give your father and mother joy! May she who gave you birth be happy.” Proverbs 23:25