Sunday, February 24, 2013

How I Did Not Give My Son Autism

This week, the blog The Thinking Mom’s Revolution published an excellent entry entitled “How I Gave My Son Autism” in which a mother examines possible causes of autism that may have contributed to her son’s autism. [To read this blog entry, click here.] With specific references to autism research, she explains how exposing her son unknowingly to various things deemed safe, including Tylenol and sonograms during pregnancy, potentially made him susceptible to autism. Many of the possible culprits were based upon the recommendations of doctors, such as Pitocin and a Caesarian section during delivery; she was simply doing what medical professionals advised. Sadly, she still feels many of her actions are “unforgivable” because of the effects they have had upon her son.

Like her, I have often wondered what, if anything, I did to contribute to Alex having autism. I have always been a seemingly healthy person who lived a very healthy lifestyle. Nonetheless, my pregnancy with Alex was designated high-risk when I was diagnosed with the autoimmune blood platelet disorder idiopathic thrombocytopenic purpura, which made me susceptible to bleeding. To treat my condition, I had to take the corticosteroid medication Prednisone and intravenous gamma immune while several sonograms monitored his development. When I went into labor almost a month early, he was delivered by Caesarian section. Certainly, I have wondered if any of those circumstances led to Alex developing autism, but I was simply following the direction of doctors whom I trusted. Moreover, those treatments probably saved Alex’s life and mine. I can’t feel guilt for that.

Perhaps looking for better answers and certainly seeking ways to help Alex, I constantly research autism.  As I study the research, I often discover that many of the proposed causes could not be responsible for Alex having autism. In other words, my actions should have prevented giving him autism.  For instance, this month, the media reported a new possible cause of autism: low folic acid. [To read the article “Can Folic Acid Reduce the Risk of Autism?” click here.]  Because I knew that taking folic acid prior to and during pregnancy prevented neural tube disorders in babies, I faithfully took folic acid supplements before and during pregnancy.  By being proactive in that respect, I can feel confident I did the right thing for Alex.

According to another article published this month entitled “Fact Box: 5 Areas of Research into Environmental Causes of Autism” [To read this article, click here.], potential causes of autism include the following: nutrition, mother’s immune system, traffic pollution, chemicals, and medication. To address those issues, I can honestly say that I ate properly and took supplements when I was pregnant, I trusted my doctors who treated my immune system issues, I live in a town with minimal traffic pollution, I avoid chemicals as best I can, and I’ve never taken the anti-depressants specifically cited as problematic. Once again, I can’t take blame based upon these causes.

A third research article that appeared this month also seems to suggest possible causes of autism that do not account for Alex having autism.  The article “Autism Causes and Risks, Latest Findings” [To read this article, click here.] proposes various risk factors for autism, including taking anti-depressant and anti-seizure medications during pregnancy, which I have never taken. The research also suggests older mothers and close births as potentially problematic. I was 29 when I gave birth to Alex, putting me under the older than 35 definition of “older mothers.” Also, since Alex is my only child, the close births theory of having two pregnancies spaced a year apart doesn’t fit our situation, either. Another risk factor, genetics and gene mutations, is a possibility, but not one over which I had any control. Two other risk factors could have affected Alex—fever and prenatal inflammation—as I had flu and ran a fever when I was pregnant. However, I did treat the fever with over the counter medication, which, according to the research, should have helped. Moreover, I would think many pregnant women would run a fever at some point; I question how much this might contribute to autism.

Despite the various research about potential causes of autism, nothing has arisen to name definitively the true cause and what might be done to prevent or cure the epidemic. While I empathize with the mom who wrote “What I Did to Cause My Son’s Autism,” I choose to focus on all the things I did not do to cause my son’s autism. Everything I did during my pregnancy and since Alex’s birth has been focused upon keeping him and me healthy, and everything we have done since his diagnosis of autism was to make him better so that he can reach his full potential. Like all parents, we have probably made unintentional mistakes along the way, but anything we did for Alex was out of unconditional love for him. When any feelings of guilt arise, I must remember that we have always tried to do what we thought was best.  Furthermore, we keep praying for Alex’s complete healing so that he can enjoy life to the fullest and “so the power of God could be seen in him.”

“As Jesus was walking along, he saw a man who had been blind from birth. ‘Rabbi,’ his disciples asked him, ‘why was this man born blind? Was it because of his own sins or his parents’ sins?’

‘It was not because of his sins or his parents’ sins,’ Jesus answered. ‘This happened so the power of God could be seen in him.’” John 9:1-3

Sunday, February 17, 2013

Lent and Sacrifice

This past week, Ash Wednesday marked the beginning of the Christian observance of Lent, the time leading up to the celebration of Easter. Several of my friends, some of whom are devout Catholics, have followed the tradition of sacrifice by giving up something during this time. Some have given up candy, others will not use their Facebook accounts, and a few have pledged not to swear during Lent. A discussion arose the other day among my colleague friends, who are an eclectic mix of religious backgrounds, regarding how some people “cheat” by indulging in the “forbidden” by not counting Sundays in Lent and allowing themselves a reprieve or by justifying backslides by reasoning that when they gave up sweets, they didn’t mean cookies, only candy, as if they’re somehow outsmarting God.

Growing up in a Protestant denomination that did not traditionally encourage giving up something for Lent, I always felt sorry for my Catholic friends who were struggling with the temporary loss of something beloved during this time.  Ed, who was raised Catholic, tells of “forgetting” to forego meat on Fridays by having a hot dog. Amazingly he would remember after eating it and would relieve his guilt by promising himself to say Hail Marys or to go to confession. Somehow I imagine God finding his approach to sacrifice by admitting guilt and doing penance more genuine than those who deny themselves yet complain about it the entire duration of Lent.

While I admire those who not only give up something meaningful for Lent, but also do so willingly and wholeheartedly, I am not one to observe that tradition. However, some online conversations this week with fellow autism moms made me realize that for those of us whose children have autism, sacrifice is something we know every day. Of course, all parents make sacrifices for their children, but those whose children have greater needs often must give up more for the sake of their children. Certainly, we don’t want to be martyrs; therefore, others are often not aware of how our lives differ greatly from theirs because we have had to give up things others take for granted. While we wouldn’t trade our children whom we love dearly for anything, we long for a simpler life for them and ourselves.

While parents of typical children breathe a sigh of relief once their infants start sleeping through the night, many children with autism continue to have sleep issues for many years. An autism mom told me this week about never getting a good night’s sleep because her adolescent son still interrupts her sleep. This reminded me of a period when Alex was probably seven years old and would climb into bed with us in the middle of the night. Taking him back to his own bed involved a middle of the night battle, and three people sleeping in a bed was way too crowded. This meant that one of us would be like Goldilocks, searching for a bed that was “just right.” Each night created an adventure to see where we would sleep—in the guest bad, in Alex’s bed, in our bed, with Alex, alone, and rarely the three of us together, just too tired to move. Eventually these nightly meetings faded, and we were delighted that Alex was happy to sleep in his own bed again so that we could all get a good night’s rest.

Another willing sacrifice autism parents make for their children is financial. Of course, typical parents know how expensive raising a child is, but those who have children with autism have additional expenses, including various therapies, such as speech or behavioral therapy that may not be covered by insurance. In addition, those who must be on special diets due to food allergies or sensitivities require special foods that may cost twice or three times as much as typical foods. Also, some parents have chosen to give up their jobs or scaled back their careers so that they can be home more with their children, meaning less family income with a more expensive child. Although we have always been blessed with enough financial resources to pay for whatever Alex needs, I know many families who struggle mightily and sacrifice greatly for their children.

Perhaps the least obvious sacrifice parents of children with autism make is a typical day-to-day existence, the little things that others don’t realize we miss. Often, families whose children have autism can’t take vacations because the change of routine and familiar places would greatly upset the child; others can’t financially afford such luxuries. The last vacations we took were when Alex was a toddler—before we knew he had autism and when he traveled well. Since then, we have not been able to travel with him because his unpredictable behavior would defeat the purpose of a vacation—relaxation. In addition, many parents of children with autism can’t go out and leave their children with a babysitter. When Alex was younger, my parents were always willing to watch him so that Ed and I could enjoy an evening out. However, as he and they grew older, we worried that his behavior could be too much for them to handle. He could move faster than they could, and his need for instant explanations required practice in fast-talking, often giving glib, creative, fictional answers. As my mom once said, “I can’t lie fast enough to suit him, like you can.” Consequently, Ed or I go places separately or the three of us go together or more often we all stay home. Essentially, parents of children with autism establish a new normalcy that is unlike lives in other homes. While most of the time, we adapt to the new routines, we do at times covet other people’s seemingly less complicated lives and feel thankful anytime difficult stages pass that make our lives easier.

And so, while my friends are giving up Facebook, favorite foods, or foul words, I have made a conscious choice not to give up things for Lent. As a matter of fact, I have decided to work on not giving up. I will not give up searching for ways to make Alex better, so I will deliberately seek research and compare notes with other autism parents through Facebook and the Internet. I will not give up chocolate, which keeps me happy and calm, even when Alex tests my patience. I will be honest about my frustrations, which may involve occasional colorful language, so that I can deal with obstacles. Most of all, I will not give up hope, which keeps me going on a daily basis. With the hope that Alex will get better, we anticipate the day when we can look back at the things we have given up and declare that any sacrifices we made out of our love for him were, indeed, worthwhile for what we gained in return. Isn’t that the purpose of Lent, after all?

“Live a life filled with love, following the example of Christ. He loved us and offered himself as a sacrifice for us, a pleasing aroma to God.” Ephesians 5:2

Sunday, February 10, 2013

Autism and Medications

After the tragic killings in December at Sandy Hook Elementary School, the media speculated upon the possibility that shooter Adam Lanza had an autism spectrum disorder as well as reporting what medications he might have been taking. While the autism community quickly reacted by issuing statements adamantly denying a link between autism and planned violence, some discussion arose linking medications to violent behavior. Some parents who strongly oppose medicating their children with autism circulated information that cited several instances where school shooters had been taking psychiatric medications. A writer and autism mom whom I respect and admire, Teresa Conrick, posted an article on the Age of Autism website entitled “Pharmagunddon: School Shooters and Psych Meds” detailing various instances in which school shooters were allegedly taking psychiatric medications at the time they committed their heinous crimes. [To read this article, click here.] While I appreciate the thoroughness of her research and her invitation for the reader to “be the judge,” I have trouble agreeing with the implication that the medication caused the violent behaviors.

In a college course dealing with statistics, I learned the adage, “Correlation does not imply causation.” While these individuals may have been taking psychiatric medications, the behaviors that led doctors to prescribe these drugs more likely impacted the individuals to a greater extent than the medications themselves. Perhaps the medications they were taking were not the best for treating their conditions, or they may have needed different dosages than they were taking at the time.  In addition, some medications such as SSRI’s must be taken for a few weeks before symptoms improve, which could be a factor. Moreover, they may not have been compliant about taking the medications as directed, rendering them useless.  Too many variables exist to make judgments as to whether these drugs made people more susceptible to engaging in violent behavior.

Although I understand parents’ reluctance to put their children on medication, in some cases medication may be necessary for the well being of the children. If a child has diabetes and needs insulin, the parents would be negligent not to make certain the child received that medication.  In autism, co-morbid conditions, such as obsessive-compulsive disorder or anxiety, may benefit from medications that help the brain and the rest of the nervous system function better.  While I understand that some parents prefer to try vitamins, supplements, and other less drastic interventions, sometimes more is needed to address problem behaviors. I’ve noticed that some of the most vocal parent critics are those whose children are still young; until the child has gone through adolescent hormonal changes that can greatly impact behavior, from our experience, I would advise waiting to rule out medications completely.

From the time Alex was diagnosed with autism at four years of age, we began using biomedical treatments to help improve his various neurological issues. He became quite adept at swallowing pills at an early age, and he took as many as four dozen supplement pills each day, under the direction of our family doctor who specialized in nutrition. From vitamins to minerals to amino acids to essential fatty acids, Alex took whatever he needed to make his body work better. In addition, we put him on a strict gluten-free and casein-free diet that he maintains even today to address his food sensitivities and allergies. We treated him for yeast overgrowth in his digestive system, and we did chelation therapy to rid his body of toxins that had accumulated. Whatever interventions he needed, we pursued in hopes of making him as healthy as he could be, and we hoped to avoid putting him on medications. However, when his OCD behaviors became quite upsetting to him at age eleven, his doctor felt he would benefit from taking the SSRI Prozac. The improvements in his anxiety and behavior, such as frantically checking clocks to see what time it was and slamming doors in a ritual before bath time, came as a great relief to him and to us. Clearly, he needed his serotonin levels regulated in order to function better and stay calm.

Last year, when we had to hospitalize him in the behavioral medicine department for severe anxiety and aggression, his psychiatric nurse practitioner believed that after nine years, Prozac no longer worked for Alex. During his hospital stay, she tried a variety of medications at various doses until finally reaching a combination that kept him calm and prevented him from the dangerous aggressive meltdowns we had been facing for months. Currently, he takes the SSRI Zoloft along with mood stabilizers, an anti-psychotic drug, and sedatives. While we must monitor his behavior and watch for side effects as well as have regular blood tests to check his levels, we are pleased with the significant improvements we have seen while he has been on these medications.  (Fortunately, he is not taking any of  “The Top Ten Legal Drugs Linked to Violence” listed in Teresa Conrick’s article.)

Do we worry about the long-term effects of these medicines on his system? Certainly! Would we prefer that he not have to be on medications and deal with some mild side effects? Absolutely! Are we hopeful that he will eventually be able to wean off these medications and go back to taking supplements instead? Of course! However, at this point with Alex’s current issues, medication has taken away the behaviors that made him a danger to others and allowed the three of us to live peacefully.  Until God heals Alex—and I know He can—we are thankful for the expertise of Alex's psychiatric nurse practitioner and for the medications that help him overcome extreme anxiety so that he can be his happy, docile self.

“But for you who fear my name, the Sun of Righteousness will rise with healing in his wings. And you will go free, leaping with joy like calves let out to pasture.” Malachi 4:2

Sunday, February 3, 2013

Mama's Boy

Life with Alex is never dull. When he begins doing something new, we sometimes find ourselves puzzled and even frustrated. Sometimes, however, he does new things that amuse and fascinate us. Lately, he’s engaged in some entertaining behaviors that show he’s more mentally alert and involved in the world around him. In my blog entry last week, I described all the questions Alex has been asking, trying to figure out heaven and God. In addition to seeking answers about the afterlife, Alex has been inquiring about my future plans. A couple of weeks ago, Alex started asking me when I will retire from my part-time job as a teacher. He understands the concept of retirement because he knows that my parents are retired, and I guess they have made this stage of life seem quite appealing. Although I have explained to Alex that I’m not really old enough to retire yet, he, nonetheless, keeps pressing me for an age when I plan to quit my job. Since he didn’t seem to appreciate my vague answers, I fell back on one of his favorite lines, “Wait and see,” which seemed to satisfy him.

This past week, however, he decided to come up with a new plan for my future since retirement doesn’t seem imminent. Alex began asking me if I could have a baby. This question took me by surprise not only because I’m too old to have a baby, but also because Alex has never shown any interest in having siblings. Unlike most kids, he has never asked to have a brother or sister, and he has reveled in his only child status. Since my pregnancy with him was high-risk, due to the diagnosis of the bleeding disorder ITP when I was pregnant with him, I had been advised not to have any more children. Once Alex was diagnosed with autism, Ed and I were glad that we only had Alex to raise since he required so much time and care.  Alex’s lack of interest in having a little brother or sister made this choice easier. For him to begin asking for a sibling after all these years seemed rather odd until I began analyzing his motives.

One possibility for Alex’s sudden desire for a sibling may be his fascination with little kids. When we take him places, he loves watching small children, and he especially likes hearing their “little voices.” The other day, he asked me if he could babysit, which is a sweet but misguided idea. Although Alex would like to take care of little kids, he’s not even capable of taking care of himself. I simply told him that babysitting is hard work, which seemed to deter him from that notion. Another possible reason for his wanting to have a sibling may come from his recent request to get bunk beds. I have no idea why he wants bunk beds when he is afraid of heights and slightly claustrophobic, making neither bunk particularly appealing to him.  Ed had told him that he and his brother, Alex’s Uncle John, had bunk beds when they were boys, and perhaps Alex wanted to share this experience. We then explained to Alex that he didn’t need bunk beds because he doesn’t have a brother. Maybe he thought that if he had a brother, we would get him the bunk beds he wants.

Probably the most plausible reason, however, that Alex wants me to have a baby is that he is looking for reasons for me to be home all the time instead of going to work. Along with his retirement questions, he asks me every night if I’m “going to BF [the shortened name of the school where I work]” the next day, and he seems to look forward to weekends, knowing that I’ll be home. In addition, Ed tells me that Alex asks frequently while I’m at work in the morning when I will be home. He does the same thing in the afternoon, asking me when Ed will be home from work; he just prefers to have both of us home. Considering that last year, he often didn’t want me around him, even bluntly saying, “Mommy is leaving now!” his noticing my presence or absence is an improvement. However, I will be glad when he seems a little less attached to me, but I think this may be some separation anxiety stemming from when he was hospitalized last spring. Despite Alex’s wishes, I will not be retiring any time soon, nor will I be having a baby just so he can babysit, get bunk beds, or have me home all the time. There are limits to my maternal devotion to him. Besides, knowing Alex, he’ll be moving onto a new interest soon, and he will be glad again to be an only child.

“If you honor your father and mother, ‘things will go well for you, and you will have a long life on the earth.’" Ephesians 6:3