Grace over Guilt

 

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

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

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

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

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

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

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

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

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

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

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

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

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

Out of Darkness Comes the Light

 

This past week, I have been on spring break from teaching, yet the rest of our family’s schedule has basically remained the same. Ed, who was on spring break from teaching at the university earlier in the month, had to go to work in the afternoons, and Alex’s schedule of afternoon therapies continued as usual. Trying not to interfere with the morning routine Ed and Alex have established, I stayed out of their way. Despite my best attempts not to rock Alex’s boat, he seemed to find my morning presence annoying, acting irritable and even feisty with me at the time when I would normally be coming home from school. As I tried to help him get ready for his various afternoon appointments, he did not want to cooperate and preferred trying to argue with me instead.

One morning I walked away from him and found him waiting outside the bathroom door for me, ready to continue a disagreement I thought I had already settled. Usually, Alex is eager to see his support team members so that he gives me no trouble when I remind him that he needs to brush his teeth and comb his hair, but this week he wanted to balk at everything I told him to do. To let me know his displeasure, he would play the passive-aggressive game of simply staring at me when I told him to do something or grabbing my hands to get my attention. Using all the tools his therapists have given us, I would calmly redirect him with the reminders of “making good choices” and “respecting personal space.” When that didn’t seem to move him physically or emotionally, I resorted to my no-nonsense middle school teacher voice and informed him that he would be grounded for the day if he didn’t follow my directions.

Of course, in my analytic mind I’ve also been trying to figure out why Alex decided to challenge me when he is normally docile and compliant. Could this be a developmental phase he needs to go through? Was he unhappy that his typical schedule was changed because I was home instead of at work? Were there environmental changes, such as air pressure, the full moon, or allergies, bothering my human barometer son? Was he not feeling well, perhaps irritated by the discomfort of thrush in his mouth again? After trying to ask him questions when he was not moody, I could get no definitive answers for why he was giving me a hard time, other than because “Mommy is shorter than Alex.” Since that isn’t going to change, I decided to look in his mouth and found the telltale signs of yeast overgrowth, called his doctor for a prescription of antifungal medication, and gave him Diflucan. Soon, he showed signs of healing and thankfully became more pleasant with me.

I have been told that people with Alzheimer’s disease and children with autism show hostility to the person who loves them the most because they know that person will forgive them, no matter what. Alex knows that he can always say he is sorry for his behavior, and I will always readily accept his apology and never hold a grudge. He knows that my love for him is unconditional. He also knows that about his dad, but apparently, I get the “favored” treatment because “Mommy is shorter than Alex.” Nonetheless, he and I share an unbreakable bond that allows us to enjoy each other’s company the vast majority of the time and to work out our differences. I truly believe that Alex knows that I always have his best interests at heart, even when he’s not happy with me for pushing him to be his best. He also knows that I will cheer him on every step of the way, and I will do everything in my power to protect him from harm.

Last weekend, Alex and I enjoyed watching a television presentation of The Passion, a modern-day interpretation of the last week of Jesus’ life. As we watched the events leading up to the crucifixion and the resurrection, Alex enjoyed the music the most, swaying and trying to sing along to the contemporary songs used to tell the story. However, I found myself drawn to the portrayal of Mary, Jesus’ mother. Being raised in the Protestant Church, I viewed the importance of Mary only at Christmastime as the young woman who gave birth to the Messiah. However, The Passion made me think about her role as the mother of an adult son facing tremendous suffering, and I wondered how she found the strength to watch her son suffer in pain and die, even knowing that he would be resurrected. According to the Gospels, she was there when Jesus was crucified. Only in the Gospel of John do we see Jesus acknowledge her as he is dying: “When Jesus saw his mother standing there beside the disciple he loved, he said to her, ‘Dear woman, here is your son.’ And he said to this disciple, “Here is your mother.’ And from then on this disciple took her into his home.” (John 19:26-27)  Before he died, Jesus wanted to make sure his beloved mother, who was there to support him to the end, would be all right. The tenderness of that moment moves me deeply.

On Thursday, after helping Alex through some unexplained anxiety, I took him to music therapy, where his therapist was able to further reassure and calm him. As I waited during their session, I could hear the soothing words of the familiar Beatles’ song, “Let It Be”: “When I find myself in times of trouble, Mother Mary comes to me, speaking words of wisdom, let it be. And in my hour of darkness, she is standing right in front of me, speaking words of wisdom, let it be.” In those lyrics that Alex and his therapist only occasionally include in their therapy time, I also found comfort. “And when the night is cloudy, there is still a light that shines on me, shine on until tomorrow, let it be.”  Despite the occasional setbacks––the cloudy nights––the light of hope pushes me forward to help make Alex better. Sometimes all I need to do is wait––to let it be––until the time is right.

As we celebrate Easter today, I’m reminded of the hope we find in the resurrection. Before his crucifixion, Jesus prepared his disciplines for what was to come, saying, “Now is your time of grief, but I will see you again and you will rejoice, and no one will take away your joy.” (John 16:22)  From the grief of Good Friday, Jesus fulfilled that promise to return, bringing the joy of Easter Sunday through the resurrection and giving us eternal life through his sacrifice. Although I don’t know what the earthly future holds for Alex, I am certain who holds his eternal future, and I can be sure that He, who gave His only son, has unconditional and perfect love for my son, which gives me peace.

“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” John 16:33

Easter Hope

 

As an autism mom, I always anticipate the arrival of April and the attention the media gives autism for Autism Awareness Month. Avidly reading the various news features as well as blog entries by others who write about autism, I keep hoping to find some new information that might help Alex. However, I have been disappointed that much of what I have read this week has had a rather negative tone, often critical of autism parents, who are criticized for not accepting their children as they are and for wanting to change them.

After my autism readings this week did not inspire me, I ran across a terrific blog entry written by Mary Evelyn Smith, a mom whose son has spinal bifida and uses a wheelchair. [To read this article, please click here.] Her essay, “That Time I Defaced My Son’s Developmental Questionnaire” made me laugh, and I appreciated her approach to the tedious task of filling out forms we parents with children of special needs often face. Instead of becoming bitter, she humorously answered questions that were clearly ridiculous, considering her son’s disability. For example, she answered the question “Does your child jump with both feet leaving the floor at the same time?” by altering the provided illustration of a child, adding a wheelchair and a banner proclaiming, “That’s how I roll.” In addition, she points out that these questionnaires “are a grossly inadequate representation of his greatness” and suggests that parents of special needs children offer their own descriptors, as she does for her son. To illustrate, she creates her own question: “Does your child possess a dogged friendliness akin to that of a future politician or overzealous Walmart greeter?” Her ability to see the positive and the potential in her son will certainly benefit both of them as they wait for him to get better with time.

Recently, we had to fill out a similar questionnaire for Alex to assess his skills. Although in the past we have completed assessments of his daily adaptive living skills so that he can receive appropriate supports, we were given a new survey to complete, the Risk Mitigation Tool. While this information is necessary so that those working with Alex know what help he requires, the number of check marked items can be a bit overwhelming. For instance, one item on the RMT states, “This individual needs support with…” followed by 32 items. Of those 32, we had chosen 18. Fortunately, we did not need to check eating and drinking because Alex is quite adept at both of those skills, and we did not have to check “constipation episode tracking” or “dehydration episode tracking,” probably because he IS so good at eating and drinking. However, we had to indicate that he needs support with several areas including the following: buying groceries, cooking, laundry, and scheduling medical appointments. To be truthful, my dad, who is amazingly healthy and active at 78 years old, would also have to admit he needs help with cooking and laundry since my mom always takes care of those for him. Similarly, I take care of scheduling Ed’s medical appointments because he hates doing that, so he would have to check that on his list of supports needed.  Fortunately for me, the RMT does not include reaching items on top shelves, killing spiders, and mowing the lawn, so I may appear more self-sufficient than I really am. Essentially, we all have risks to mitigate, but right now Alex has a few more than most. We hope that with time and training, his list will dwindle.

Since I like Mary Evelyn Smith’s suggestion about coming up with new items for questionnaires that highlight our children’s skills, I have some ideas for Alex.

Does your child show a willingness and enthusiasm to eat any and every food placed in front of him––even broccoli, carrots, peas, and spinach––except for popcorn (because it’s too salty)?

Does your child remember small details that most people forget, such as the birthdates of every extended family member (handy for sending birthday cards on time), the Presidents of the United States in order (useful for being a Jeopardy contestant), and over 1000 digits of pi (amazing fun for annual Pi Day celebrations every March 14^th)?

Does your child compliment and encourage you in creative and unique ways, such as seeing a picture of a supermodel in a magazine and asking if that’s you when you were thinner, reminding you that former pro basketball player Muggsy Bogues is the same height as you are, and telling you that your meatloaf rates a “99 percent”?

Does your child pray for nearly everyone he has ever met in life, and if you forget any of those who deserve “God Bless” in your nightly prayer roster, kindly remind you to include them in the list before saying “Amen”?

Does your child find joy in simple pleasures, such as going to Pet Supplies Plus to find the biggest bags of dog food they have or going to the Target Café to have apple chips and Sierra Mist or driving past the gas station to see if gas prices have gone down and excitedly announcing this week’s price?

While Alex may not fit the typical profile of people his age, he possesses special gifts that entertain and bless us as we wait for him to learn the more mundane skills of life, such as laundry and cooking.  Moreover, we believe that he will continue to get better and better because we have seen the great progress he has made over time. As we celebrate Easter Sunday today, we remember God’s great love for us and celebrate the hope we have for our future, knowing that He will take care of all of our needs.

“Praise be to the God and Father of our Lord Jesus Christ! In His great mercy He has given us new birth and a living hope through the resurrection of Jesus Christ from the dead.” I Peter 1:3

The Shining of the Son

“Little darling, it’s been a long, cold, lonely winter. Little darling, it feels like years since it’s been here. Here comes the sun. Here comes the sun, and I say it’s all right.”—George Harrison

After a winter filled with bitterly cold temperatures and seemingly constant snowfall, this week finally felt like spring has arrived with sunshine and warmer temperatures. Although we awakened to snow on the ground earlier in the week, we have seen the changes that give us hope that spring is on its way. Yesterday, Ed, Alex, and I went to an Earth Day celebration at our county fairgrounds exposition center and were pleased that we didn’t have to wear our jackets because the weather was warm and sunny outside. This Earth Day event brings together various businesses and organizations that set up booths promoting environmental awareness. Our reasons for going are less noble: with no admission charge, it’s free entertainment, especially for Alex who likes to see the animals included in a few exhibits.

As we wandered around the three buildings offering displays and information, Alex was pleased to see three turtles (which are his favorite animal), a rabbit, and two cats. Other than that, he didn’t seem particularly interested in much else, but he patiently made his way to see nearly all of the booths. Because he didn’t say much, we weren’t sure whether he was enjoying himself or not. When we got back in the car, we asked him if he’d had fun, and he said yes. Thinking this might be just a cursory answer, Ed asked him how much he liked the program, and we were surprised when he told us “one hundred percent.” On the other hand, he never asked us when we were going home while we were there, so he probably did have a good time. Certainly, we were pleased that he enjoyed the outing, but we were also delighted that his behavior was excellent the entire time.

Last year, when we took him to the same event, we had him ride in his transport chair the entire time. Because his medications made him fatigued and unable to walk very far without tiring easily, riding in his wheelchair was a better option. If he decided he wanted to go home, we could quickly and easily take him back to the car. In addition, we still didn’t completely trust that he could behave himself, and the chair allowed us to control his movement so that he couldn’t reach anything he wasn’t supposed to touch. Yesterday, however, he walked the entire time because his energy levels are returning and his behavior has improved significantly. At one exhibit for energy-efficient insulation, Alex was fascinated by the digital thermometers that showed the difference between good insulation and poor insulation by shining a heat lamp on the two. Even though he may have been tempted to touch the thermometers or the lamp to see how hot it was, he kept his hands to himself, which showed the progress he’s made in controlling impulsive behaviors. We can trust him because he has become trustworthy again.

Two years ago, Easter was a mixed celebration for us. Alex had been released from his first hospitalization in the behavioral medicine department and was home after nearly a two-week stay. We didn’t know then that he would need two more hospital stays that spring. While we were thankful to have him home, the memories of the anxious, aggressive, and destructive behaviors that led to his need for intensive intervention were still fresh in our minds. Frankly, we were still afraid of him and his potential for angry outbursts. As I chose Easter gifts for him that year, I was mindful of finding small items that were unbreakable, wouldn’t agitate him, and wouldn’t hurt if he hurled them at us. While reflecting on that period of our lives is painful, we are reminded of how much progress he has made in two years, thanks to medication, intensive therapy, and the healing power of God. Instead of being impulsive, Alex has learned to be patient. Instead of being anxious, Alex is content. Instead of being aggressive, Alex is gentle and sweet. When our lives felt hopeless, God sent us the help we needed, and now we appreciate the changes that have made Alex better and our lives easier and happier.

In reflecting on Good Friday this week, I thought about the suffering Christ endured and the sorrow those who loved him felt. Being raised Catholic, Ed grew up with crucifixes, the images reminding of Christ’s sacrifice on the cross. As a Protestant, I was raised in churches with empty crosses, emphasizing the resurrection instead. Both of us have great affection for the Christus Rex, the Christ the King statue in the Valparaiso University Chapel of the Resurrection. In this representation, Christ is on the cross with a king’s crown and both hands raised in joyful victory. Perhaps this image blends the religions of our childhoods and binds our belief in the hope and the joy of the resurrection. On a much smaller scale, we survived the dark days of sorrow, fear, and uncertainty, and God has brought us into the light where we have joy, faith, and hope for the future.

This week, Victoria Osteen, the wife of Pastor Joel Osteen whose sermons and inspirational books have strengthened my faith, posted online the following quote: “Resurrection teaches us that God will always finish what He started.” Sometimes I fret about what will happen to Alex, especially when Ed and I aren’t around to look after him. However, this quote reminds me that God isn’t finished with Alex yet. If we look back two years to the terrible times, and even a year ago to the still slightly unpredictable times, we see that God has led us to a time of contentment and peace. Only God knows what plans He has for Alex and us, but I do believe that His plans are for good. As we now seem to be moving in the right direction, we look forward with hope to see where God will lead us and how He will finish what He has started in our lives. Happy Easter, indeed!

"The Spirit of God, who raised Jesus from the dead, lives in you. And just as God raised Christ Jesus from the dead, he will give life to your mortal bodies by this same Spirit living within you.” Romans 8:11