Christmas Gifts

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With the Christmas rush behind us, we can take time to savor the season and appreciate the unexpected gifts we may not have noticed in the flurry of activities surrounding the holidays. Specifically, I am grateful for the following “gifts.”

For once, Alex actually gave me specific ideas about what he would like for Christmas. In years past, he would occasionally make a suggestion or two, but this year, he seemed to have some definite ideas about what he wanted. One request was a Chicago Cubs blanket, which was a great idea because his medications make him feel cold a lot of the time, and he is often wrapped up in a blanket to keep warm. A quick Google search enabled me to find a nice fleece blanket with the Cubs logo at Bed Bath and Beyond, which my mom picked up for him and gave him as a present from my parents. This gift has been put to good use this cold week, as Alex wraps himself in the soft warmth of the blanket.

Besides the blanket request, Alex also asked for some DVDs; he wanted the entire Shrek collection of movies and a movie about football. This led me to online shopping at Amazon, where I found all four Shrek movies in a nice set and a DVD on the history of the Chicago Bears. What Alex didn’t know was that I had made a great Black Friday purchase from Target of a portable DVD player on sale for half price so that he can watch DVDs in his room. Interestingly, Alex has not had a lot of interest in watching movies the last few years even though he loved watching Disney movies when he was little. Recently, he decided he wanted to watch the Harry Potter movies, and we were surprised how well he was able to focus upon the plot and enjoy the movie. This improvement in his attention span is a gift in itself to us.

Another pastime Alex has enjoyed lately is listening to music. Throughout the month of December, he and I listened for hours on end to Christmas CD’s. While we have several Christmas music CD’s by country singers that he knows and likes, he decided that his favorite one was my Amy Grant Christmas CD. In fact, he’s now such a fan of hers that he says she’s his favorite singer, and he’s requested to listen to her other CD’s that I have. Had I recognized his devotion to her, I would have gotten him one of her CD’s for Christmas. Instead, I went with his previous favorite singers and bought him the most recent CD’s from Alan Jackson and Taylor Swift, both of which he likes, as well. Fortunately, Alex and I share similar tastes in music, so listening to music is a pleasant activity that we can do together.

Aside from the various typical gifts, I’m also thankful for other improvements in Alex. One of these is the reemergence of his sense of humor.  When he was overwhelmed with anxiety, he seemed to have lost his quick wit, which also seemed dulled by the medications to help his anxiety and made him sleepy. Because he’s been more alert lately, he’s more observant and better able to communicate. A couple of weeks ago, Alex was talking to my brother and asking him how much he weighed. When my brother told Alex his weight, Alex was thrilled to have that information. Although Alex weighs forty pounds less than my brother, when asked how much he weighs, he immediately deducted two pounds from my brother’s weight and claimed that’s how much he weighs. He was delighted when we all laughed at his comment, and it was nice to see him enjoy making a joke.

Another positive change is Alex’s desire for grooming. Last year, he refused to cooperate with getting haircuts and shaving, perhaps because these activities overwhelmed him with sensory stimuli. As a result, he looked like a shaggy bum for several months. Now, not only does he allow me to cut his hair and shave him, but also he seems to enjoy being groomed and even asks me for haircuts or shaves. He looks so much better with shorter hair and clean-shaven, and I’m pleased that he lets me keep him well groomed.

Probably the most noticeable difference in Alex is that he welcomes my presence. Last year, he much preferred Ed’s company to mine, even telling me bluntly at times, “Mommy is leaving now!” Lately, he likes hanging out with me, listening to music, watching television and videos, and just talking. I’m pleased that he seems to be coming out of the fog and is able to answer and ask questions clearly so that we can have conversations again. Of course, there can be too much of a good thing, and he’s currently a bit clingy, wanting to know where I am at all times, which at times feels a bit like I am being stalked. While I’m glad that he likes my company, I’m hopeful that he will soon be less of a Mama’s boy so that he can be more independent in entertaining himself, and I can go about my activities without always providing him a detailed report of where I’m going and what I’m doing. In the meantime, I remember that he won’t always want to hang around with me, so I need to enjoy his adoration while it lasts.  Truthfully, I’ll be glad when he’s not as fond of me, though.

Reflecting on this Christmas season, I’m thankful for the joy we can now see in Alex’s eyes when he’s engaged in his favorite activities, the love that has carried the three of us through good times and bad, and the hope that Alex will continue to get better and better. In the words of an Amy Grant Christmas song that is a favorite of Alex’s and mine: “Love has come for the world to know, as the wise men knew such a long time ago. I believe that angels sang that hope had begun when the God of glory, who is full of mercy, sent His Son.” And in the words of Charles Dickens’ beloved character Tiny Tim, “God bless us, every one!”

“Now may the God of hope fill you with all joy and peace in believing.”  Romans 15:13

The Tragedy of Sandy Hook

Since the December 14^th senseless tragedy at Sandy Hook Elementary School in Connecticut, where twenty young children and six staff members were killed, people have been trying to come to terms with why and how something this terrible could happen.  Debates over the need for stricter gun control laws, along with plans for increased security measures in schools, as well as discussions of how to address mental illness have filled the media. However, rational minds simply cannot grasp the irrationality of such a horrific act.

In trying to explain the motive behind the actions of killer Adam Lanza, someone who knew his family explained that he had been diagnosed with Asperger’s syndrome, an autism spectrum disorder. This information immediately sent the autism community scrambling to distance autism from the dangerous and deadly behavior exhibited by Adam Lanza. Major autism organizations issued statements to declare that autism would not drive a person to commit such heinous crimes. Specifically, the National Autism Association posted on its website: “There is no link between planned violence and Autism Spectrum Disorders.” Similarly, the Autism Society of America addressed concerns, stating, “No evidence exists to link autism and premeditated violence. Many of individuals with Asperger’s syndrome who have committed crimes had co-existing psychiatric disorders. Individuals with autism who act aggressively typically do so because they are reacting to a situation.” 

If, indeed, Adam Lanza had Asperger’s syndrome, he likely also had another psychiatric disorder, as suggested by the statement from the Autism Society of America. Common comorbid conditions associated with autism include obsessive-compulsive disorder, bipolar disorder, depression, and general anxiety disorder.  In fact, one study reported that nearly 84 percent of individuals with autism spectrum disorder also met the criteria for diagnosis with an anxiety disorder. While autism alone presents many obstacles, the additional conditions create more problems that require intervention. Unfortunately, help is not always readily available.

Last week, a friend sent me a link to the online article “I Am Adam Lanza’s Mother” [To read this article, click here.] and wanted to know my opinion regarding this controversial essay.  In telling about her 13-year-old son and his extremely challenging and frankly frightening behaviors, Liza Long candidly declares that her son has the potential to be as dangerous as Adam Lanza. In the essay, she admits, “I live with a son who is mentally ill. I love my son. But he terrifies me.” Despite all her best efforts, she has struggled mightily to get him the help he needs, but she has found few and limited mental health resources available.  

Although Alex’s behavior was never as extreme as Liza Long’s son, I could sympathize with her frustration and fears.  As I have explained in previous blog entries, when Alex was fifteen years old, he began exhibiting aggressive behaviors that were completely out of character for our docile, gentle son. After having to wait six weeks to get an appointment with a child psychiatrist, who offered no real help and admitted that I knew more about autism than he did, we realized how little help is available. Thankfully, Alex’s doctor gave us a prescription for the sedative Ativan, which we could give him when he was having meltdowns to help calm his anxiety and curb his aggression so that Ed and I could physically manage him. Once he outgrew that phase, which was likely tied to hormonal changes of adolescence, we thought we would no longer have to worry about medicating him to keep everyone safe. We were wrong.

About a year ago, we again began seeing aggressive behaviors linked to anxiety in Alex (as I have also detailed in previous blog entries). Not only were these outbursts more intense than they were five years earlier, but the increase in Alex’s size and strength as a six-foot-tall young man made these meltdowns dangerous. As we desperately sought help for him, we kept running into dead ends. The waiting list to see a psychiatrist was nearly two months, and two trips to the local ER showed that they could only sedate him and send us home with more Ativan.  We had to make three calls over a three-month period to the police to help us safely control him when his aggression became so intense we could not restrain him ourselves. When we finally pushed for our local mental health facility to admit him as an inpatient, they told us that they would only admit him if he were homicidal, suicidal, or psychotic. Eventually, after asking many questions, we discovered that they would not admit him at all because he has autism, which they consider a developmental disorder instead of a mental disorder. No one seemed to know how to help Alex, and fortunately, my intensive Internet research led us to St. Anthony Memorial Hospital in Michigan City, whose Behavioral Medicine Department admitted him as an inpatient and provided him with the care he desperately needed.

While Alex was being treated in the hospital, we kept questioning the staff as to whether he had some co-morbid condition that was causing the behaviors that were so different from his typical self. The psychiatric nurse practitioner who has overseen his medication since he was hospitalized and who has considerable experience treating adults with autism explained to us that aggression is quite common in young men with autism. She diagnosed him as having autism with aggression and impulse control issues and felt certain that he did not have bipolar disorder or another coexisting condition. After weeks of trying various medications in various combinations and dosages, she finally found a therapeutic mix that keeps Alex calm so that we can manage him at home without fear. As we have been working to find services for Alex, some of the caseworkers who have read through Alex’s list of medications have commented about how many psychiatric medications he is taking, almost in a critical way. Although we wish that Alex didn’t have to be on any medications, until his potential for aggressive behavior subsides, we must keep him on this regimen so that he does not become a danger to himself or others. This is an unfortunate reality of our situation, but we are thankful that medications make him able to function, especially since Ed and I are responsible for his complete care. In thinking about Liza Long’s situation and wondering about what Adam Lanza’s mother faced with her son, I feel frustrated that finding help for children and adults with severe behavioral issues is so difficult for parents. Perhaps if interventions were more readily available, tragedies like Sandy Hook could be prevented.

In reading the profiles of the Sandy Hook Elementary students who lost their lives, I was saddened and surprised to find that two of the twenty children killed had autism. Through statements provided by their parents, Josephine “Joey” Gay was described as having nonverbal autism, and Dylan Hockley, who died in the arms of his teacher Anne Marie Murphy, also had autism. The vulnerability of these two children is heartbreaking, and the prevalence of autism, as evidenced that two of the twenty children were victims of this condition as well as victims of the action by a killer who perhaps had autism himself with coexisting mental illness, is also deeply concerning.

Certainly, Adam Lanza’s mother should not have kept guns in her home. Certainly, Adam Lanza needed help. Certainly, schools need to make security a priority. However, from our experience, the key issue that needs to be addressed is making help for children with autism and mental illness a priority so that parents can readily access resources instead of constantly seeking and fighting for them. Ignoring these problems will not make them go away, and the consequences for society could very well be—as we’ve unfortunately seen—terribly tragic.

“Do not stay so far from me, for trouble is near, and no one else can help me.” Psalm 22:11

Twenty-one

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Today is Alex’s 21^st birthday. Although most young men his age would likely be excited about going out with friends to celebrate this milestone, Alex has simply requested that Ed and I take him to Wal-Mart this afternoon, and he is looking forward to shopping with us. Even though autism has robbed him of a typical life as a young adult, he thankfully is unaware of the things he’s missing.  For Alex, life is good, so long as he has places to go, good food to eat, a comfortable bed for sleeping, and Ed and I helping him with the things he still can’t do for himself. As I have mentioned in previous blog entries, Alex is blessed because he finds joy in the simple things.

Last year, I was asked to write an essay about raising a child with autism that became part of a published collection entitled, Wit and Wisdom from the Parents of Special Needs Kids. For my submission, I decided to write about the night I went into labor with Alex and how that foreshadowed what life with autism might entail. In honor of Alex’s 21^st birthday, I thought I’d share an excerpt from that essay, “Expecting the Unexpected.”

With a swift kick to my ribs, I was wide awake at 3:00 A.M. Eight months pregnant with Alex, I knew that since I was awake, I might as well go to the bathroom. Once I got there, an unmistakable gush mean that my water had broken, and labor had begun, three and a half weeks earlier than expected.

 

Thinking that I had more time to prepare, I had not packed a suitcase yet, nor had we put together his crib. After awakening my husband and phoning my parents, we headed off to the hospital, uncertain of what was ahead of us since this was our first child, who would also turn out to be our only child.

Because I had developed an autoimmune bleeding disorder, my pregnancy was deemed high-risk, which meant a flurry of activity and an insistence by my obstetrician that I have a Caesarian section under general anesthesia. Although we were disappointed that we wouldn’t see Alex being born, [Ed was not allowed in the delivery room; I think the doctor was worried there could be complications.] we were thankful that the birth was safe for both of us, and we thought we had smooth sailing once the pregnancy was over.

However, we had no way of knowing that autism was in our future. The first year, Alex met all of his developmental milestones within the normal range, but after that, we noticed signs that pointed to language and social delays common in autism. 

Through the years we have learned that Alex must always do things on his terms when he’s good and ready. For us, life with autism has meant learning to wait patiently and to celebrate successes when they arrive—essentially a matter of always expecting the unexpected.

And so, today we celebrate how far Alex has come in twenty-one years:  all the successes he’s enjoyed and all those we anticipate he will accomplish in the future. From the baby who announced his imminent arrival in the middle of the night and nearly a month early to the young man who still surprises us with his unique perspectives and amazing memory, Alex teaches Ed and me to be patient, have faith, and trust God. Happy Birthday, my beloved son Alex!

“Yes, You have been with me from birth; from my mother's womb You have cared for me. No wonder I am always praising You!” Psalm 71:6

Beyond Pollyanna

 

I have a confession: I am a Pollyanna. For those who haven’t read Eleanor Porter’s classic novel named after its heroine, Pollyanna is the girl who always finds reasons to be glad, no matter what the circumstances. Her optimistic attitude has become so widely known that the dictionary defines Pollyanna as “a person characterized by irrepressible optimism and a tendency to find good in everything.” This admission comes as no surprise to my family and close friends. My positive attitude has even influenced Ed after years of being married to me. This week he told me that he realized he’d started thinking like me because instead of being annoyed that he didn’t feel well, he was thankful that he had come down with a cold when he did since he had various obligations the weeks before and after he got sick. With Alex and the challenges of autism, this upbeat attitude has helped me put things in perspective. Sure, he can’t tie shoelaces, but he likes wearing slip-on shoes.  While he’s on a restrictive diet, he’s a really good eater.  Although he has to take several pills a day, he swallows them with ease and never complains. I’d like to think he gets that Pollyanna attitude from me.

While I always try to see things in the best light, some things about autism just can’t be praised. This week, I ran across three blog entries whose writers’ perspectives regarding autism confused me. The first, entitled “Autism: Not Something to be Feared, but Embraced” is written by Andrew Clark, a college senior with Asperger’s Syndrome, an autism spectrum disorder. While I appreciate his willingness to share his perspective as an adult with autism, I’m puzzled by his assertion that autism is something to be celebrated. He describes his poor motor skills and sensory issues that make his sense of touch, smell, and taste overly sensitive. Moreover, he talks about how he was cruelly bullied all through school by his peers. Yet, despite these obstacles he’s faced, he thinks autism is a good thing, to the point that parents should not try to cure their children. He comments that with autism,  “parents see their children in emotional agony and want to be rid of the ‘ailment,’ so money gets thrown around to find the cause, which would naturally lead to a search for a cure.  Society then views the ‘disorder’ as this horrific malady that isn’t understood but feared by the average person.”

I think any parents who see their children in “emotional agony,” yet fail to do everything to free them from this crisis would be negligent. Furthermore, I disagree that money spent on finding a cause or cure for autism is “thrown around” because anything that makes life better for these children is worthwhile, as I discussed in a previous blog entry, “Curebie.” I also find the author’s use of quotes around the words ailment and disorder as puzzling since autism obviously is an ailment, often with physical symptoms, and typically is classified as a developmental disorder. Perhaps because he has been diagnosed with autism, he does not see himself as having a disorder. On the other hand, since he will graduate from college, he clearly has overcome many of the obstacles autism often presents. While I agree that those with autism should not be feared, the consequences of not addressing the rapidly increasing rate of autism should, indeed, be feared. Perhaps he will be able to live and work independently, but many on the autism spectrum cannot, and that is scary.

In another blog entry with a similar point of view, “Why Autism Isn’t Always Bad,” writer “Aunt Becky,” the mother of an 11-year-old son with autism, asserts that autism is a good thing. (Aunt Becky also writes a blog called Mommy Wants Vodka, which has a tagline: “Mommy drinks because you cry.”) Pointing out that her child is “only lightly affected by the disorder,” she states in bold print: “Autism gets a bad rap.”  Well, of course, autism gets a bad rap; it can affect a child’s language, interaction with others, behavior, family life, health, and future. Autism deservedly gets “a bad rap.” She goes on to describe her son as having “delicious quirks” that are “simply to be enjoyed. They're quirky and adorable.” While quirkiness may be entertaining in a child, those kinds of behaviors typically do not translate well in the adult world. She goes on to assert “the priceless lesson”:  “that being normal is overrated.” Certainly, we would hope that others would be tolerant of our children’s differences, but even better would be that our children would not exhibit those quirks that call attention to themselves; being “normal” would make their lives much easier.

The third blog entry I read this week regarding impressions of autism was written by Jo Ashline, the mother of a 10-year-old son with autism, in her blog, A Sweet Dose of Truth. In her recent post, “Congressional Hearings on Autism: My Son Is Not a Burden,” she pointed out her upset that in the recent hearings in Congress (which I discussed in my blog entry last week, “Fighting for Our Children”), statements were made that children with autism were “a burden.” Although she candidly confesses that as a parent of a child with autism, she herself has felt “paralyzing fear,” “overwhelming exhaustion,” “lingering loneliness and unrelenting frustration at my lack of ability to help my child in the way I so desperately desire,” she asserts, “But I have never, not once, not even for a nanosecond, felt that my son was a burden.” If, she truly has never felt a sense of burden, I applaud her. Although I love Alex with all my heart and soul and would do anything to help him, there are times when the frustration, fear, exhaustion, and even despair caused by autism has led me to feel burdened, to yell, “I want my life back!” or to pray that he will sleep a little longer so that I can get some much-needed rest or to feel jealous of parents who have “normal” children. (I never said I was a perfect Pollyanna.) At those times when my positive attitude fades, I have to remember that the burden is not Alex—the burden is autism. Perhaps that clarification needs to be made when speaking of these children, who are victims of an affliction that should not be “embraced,” deserves its “bad rap,” and truly imposes a “burden.”  Therefore, I will keep fighting so that Alex has everything he needs to be the best he can be. Those who disagree with me can celebrate autism all they want; I will think positively in my own way, believing and hoping for a cure—a real reason to be glad.

“So be strong and courageous, all you who put your hope in the Lord!” Psalm 31:24

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