Sunday, August 20, 2017

More Than a Mom


After thirty-three years of teaching middle school English, I officially retired last Tuesday. One of the perks of being retired is being able to have breakfast every week with a wonderful group of other retired teachers from my school. As one of the group arrived late, he explained that he had to drive his grandkids to school because his daughter and son-in-law had to be at work early, and he offered to chauffeur their children. He remarked that no one prepares us for how parenthood really is. Noting that television portrays retired people as being in their golden years and enjoying freedom, he commented that in real life children continue to need their parents’ help, and our responsibilities as parents never really end.

Sitting next to one of my closest friends who like me has an adult child with disabilities, we shared a knowing smile. While all parents have ongoing concerns about their children, even when they are adults, our children require our care in ways most people never consider. Since our sons cannot drive, we must take them anyplace they need to go. Moreover, we manage their finances, appointment schedules, medications, and nutritional needs––to name but a few of our responsibilities––and we are their primary advocates who speak up for them. Despite all the tasks we still must do for our sons and our concerns for their futures, she and I agree that our sons bless our lives immeasurably.

As Alex’s mom, I have taken on roles I never imagined I would need to do before we realized he had autism. In addition to the typical mom roles of teacher, nurse, cook, chauffeur, housekeeper, and assorted others, I have also become an amateur pharmacist, psychologist, speech therapist, occupational therapist, barber, and most importantly, his advocate. My job is to make him the best person he can be, and I take my responsibilities quite seriously.  Because I know him so well and love him so much, I know how important communicating clearly with the professionals who work with him is so that they, too, can help him reach his potential. Furthermore, I am grateful to have the support of others working with Alex, bringing out the best in him, and I want to do anything to make their jobs easier.

Because of my belief in the need for parents to assist those who work with their children, I found a blog article I read the other day rather surprising. Entitled “I Just Want to Be My Son’s Mom, Not His Private IEP Case Manager,” the anonymous author describes herself as the mother of a teenage son who has “significant issues with social skills.” [To read this article, please click here.] In the article she describes an incident in which her son’s teacher emailed her regarding an outburst her son had in class. She quotes a statement from the email that frustrated her terribly: “We’d like you to come in to discuss your son’s behaviors and hear your ideas for how we might best help him.” Apparently, after years of advocating for her son, this was the last straw, as far as she was concerned.

In response to the school’s request for a meeting, she describes her reaction: “I felt like I was being asked to be his case manager, teacher, social skills coach, and professional consultant.” Further, she states, “This wasn’t a job I asked for…But I didn’t want it any more.” She complains that she doesn’t “get to have fun” with her son or “spend quality time watching dumb TV shows when I’m busy troubleshooting problems that come up.” Therefore, she makes a decision: “So when I went to meet with them about the latest incident, I quit.” Consequently, she tells the staff at her son’s school that they would have to solve the problems without her help because she’s just going to be his mother.

Perhaps her son’s school has been less than helpful over the years, leading to her decision to turn things over to them instead of being a more active participant in her son’s education. Nonetheless, the email the school sent seems to be reaching out in an effort to collaborate in helping her son, recognizing that she knows him best. She may not have wanted the job of teaching her son’s teachers how to help him, but it’s in his best interest (and, therefore, hers) to educate them how to educate him. She states that she would continue to be his advocate, but part of being an advocate is providing strategies to others to bring out the best in a child.

Maybe she will reconsider the consequences of her decision. Certainly, all parents feel overwhelmed occasionally, and being the parent of a special needs child brings caregiver fatigue that can make one want to quit at times. However, our kids, even our adult kids, need us to be resilient and tenacious. During those moments when we wonder how we can accomplish all we’re expected to do, we need to pray for strength and patience and peace. With God’s grace, we can find the resources and energy needed to continue our most important task in life: helping our children live their best lives.

“So let’s not get tired of doing what is good. At just the right time we will reap a harvest of blessing if we don’t give up.” Galatians 6:9

Sunday, August 13, 2017

Meltdowns Vs. Shutdowns

 
Although many people are aware of meltdowns in autism, the concept of shutdowns in autism may be less known. In a meltdown situation, the child with autism experiences sensory overload and may become emotionally distraught. While this behavior may look like a temper tantrum, the child is not trying to exert control and get his or her way; the child is out of control and feeling overwhelmed. Similarly, in a shutdown, the person with autism is in a stressful situation and responds with behavior that may be misinterpreted. While some may think the child is simply avoiding an unpleasant or difficult task, the shutdown behavior is actually a physical response to certain triggers.

Until yesterday, when I read a fascinating online article entitled “Shutdowns and Stress in Autism,” I was not aware of this behavior commonly found in adults and children with high functioning autism. However, after reading this study by Ingrid M. Loos Miller and Hendricus G. Loos, I realized that Alex exhibits shutdown behaviors at times. [To read this article, please click here. Thanks to the Facebook page “Regarding Caroline” for sharing this article.]

Describing a case study of a young girl with autism who was exhibiting shutdown behaviors at school, the authors note that her behaviors followed a predictable pattern triggered by social stress when she was expected to perform difficult tasks. She would first look away, then rub her eyes, keep her eyes closed, and then become limp, and finally would fall asleep for ten minutes to two hours. The article also lists more than thirty behaviors in Appendix 3 associated with shutdowns, including staring, yawning, asking to rest, and refusing to comply with verbal requests, all of which I have seen Alex do sometimes when he had to do something he found difficult.

The authors note that settings for these shutdown behaviors include school, play dates, meeting strangers, and conversations with adults that asked the child to recall recent events and to describe what happened and what the child liked. Specifically, the authors observe, “…the most stressful events are those in which the child is expected to ‘perform’ using language.” While these stressful situations may cause shutdown behaviors, the authors note that “stress instability” may also cause meltdowns, such as sensory overload or aggressive outbursts.

Because of the difficulties with eye contact, social skills, and language, children with autism may have social phobia, the authors suggest. When an adult pressures a child with autism to respond verbally to a difficult question, the child exhibits an abnormal physical response to stress. As the stress hormones rise, the child shuts down, allowing the body to recover. As the authors explain, sustained high levels of stress hormones can damage the brain, impairing verbal memory, social function, and sensory processing, and causing language deficits. In addition, rhythmic motion, such as rocking, may be needed for calming. All of these issues are associated with autism, perhaps because stress hormones have impacted the brain negatively.

While children with autism are often encouraged to work through their stress, this method is not helpful, according to the authors. These children often remember other stressful events in their lives, and a vicious cycle occurs. Instead, the authors recommend low stress approaches. For example, adults may need to be more flexible in dealing with a child who is experiencing stress. To help control social pressures, adults should help the child focus on the positive, give the child more time to respond, and allow the child to work alone. Social stories may also be effective in dealing with stress. The child may also need to take breaks to stretch, to take deep breaths, or to rest. In addition, breaking down tasks into smaller parts may be easier and less stressful for the child.

In Appendix 2 of the article, the authors have collected information from adults with autism regarding shutdown behavior. For instance, these adults describe feelings associated with a shutdown: “suddenly very sleepy,” “confused,” “like a panic attack,” and other similar details expressing their physical reactions to overwhelming stress. Further, they note that being told to “get over it” or having to continue in the stressful situation makes it worse. Instead, they need quiet time alone to relax––anywhere from a few minutes to over an hour, depending on the severity of the stress.

Perhaps the most critical point the authors make in this article hinges on what a person with autism needs to cope with stress. First, the person must recognize the signs of stress, such as suddenly feeling fatigued. Next, the person must learn strategies to help reduce stress, including taking a break and being alone. This ability to “self-manage,” the authors assert, is a “pivotal skill” needed in life.

What I found most interesting in this article is gaining understanding why Alex sometimes suddenly becomes very tired during conversations. Clearly, he is in shutdown mode. The strategies his therapists have taught him for coping with anxiety mirror those suggested in this article. As he has matured, he often prefers to be alone to deal with stress, and with an opportunity to go to another room and be quiet, he quickly recovers and can rejoin the conversation.

Hopefully, this information regarding shutdown behaviors will become more widely known to parents, therapists, and teachers who work with children and adults who have autism. By understanding situations that trigger shutdowns, the physical reactions, and ways to help people with autism cope with stress, those who work with and care about children and adults with autism can teach them tools to deal with things that overwhelm them, allowing them to manage stress and to experience life to the fullest.

“Joyful is the person who finds wisdom, the one who gains understanding.” Proverbs 3:13

Sunday, August 6, 2017

A Filled and Fulfilling Week

 
Last week was a busy one filled with appointments for Alex, yet thankfully everything went quite well. On Monday, his behavioral therapist had switched his usual Tuesday appointment because she was going out of town the next day and wanted to see him before she left. Even though Alex is not fond of having his regular schedule changed, he adapted nicely and had a good session with her. In addition, she and I discussed his behavior plan in depth, noting the progress he has made in the five years he’s been in behavioral therapy and specifically the four years she has been working with him. As we talked about how the frequency, intensity, and duration of anxiety attacks have decreased over time, both of us were pleased to note how well Alex handles anxiety now, using the coping strategies he has learned in therapy. Not only are we pleased that Alex is less anxious and can deal with upset much better, but we’re also thankful that he has such a devoted and caring behavioral therapist who celebrates his successes along with us.

That same afternoon, Alex had his regular six-month appointment at the dentist to have his teeth cleaned and checked. Unlike many people who dread going to the dentist, Alex actually looks forward to his visits. Fortunately, he had a very good pediatric dentist when he was little who made going to the dentist a good experience, and he continues to have a positive outlook as an adult. A few years ago, we started taking Alex to our family dentist and have been pleased with how well he has adapted. His dental hygienist is especially sweet and patient, and she brings out the best in him by explaining everything she is going to do and praising him for being cooperative. As the dentist checked his teeth, we were pleased that Alex has no cavities and would not need to come back until his next regular check-up in six months. As a nice surprise, the other dentist in the practice who sees Alex more often and who has filled cavities in his teeth made a special point to come say hello to Alex and see how he was doing. Not only are we pleased that Alex likes going to the dentist and received a good report, but we’re also thankful that the warm and friendly staff take such wonderful care of him.

On Wednesday morning, Alex had an appointment to see the nurse practitioner who oversees his anxiety medications. Although we were supposed to see her in June, a schedule mix-up caused him to become anxious, and we had to reschedule. Although I was concerned that Alex may not be happy about getting up early to see her, the appointment was the first one of the morning, which meant we didn’t have to wait. Despite being somewhat sleepy, Alex was good natured, especially when he saw that she had a scale in her office and was happy to be able to weigh himself. Although most people dread weighing themselves at the doctor’s office, for Alex, this is the highlight of the appointment. As we discussed how Alex was doing on the medications, he was patient and calm. Because he is doing well, she plans to take him off one medication completely, and she doesn’t need to see him for another six months. Not only are we pleased that Alex handled this early morning appointment well, but we’re also thankful that he is making such good progress that he doesn’t need as much medication to keep him calm.

On Wednesday afternoon, Alex’s peer companion came to “hang out” (as she calls their sessions) with him for the last time this summer before she returns to her full-time job as a special education aide. Even though he was disappointed that he won’t see her for a while, they enjoyed their afternoon together watching a movie. As we discussed possible plans for her to spend some weekend evenings with Alex in the future, he seemed happy that he won’t have to wait until next summer to see her. After he said goodbye to her and headed off to his room, she told me, “I just love your son!” Not only are we pleased that Alex dealt well with knowing he will miss seeing his friend for a while, but we’re also thankful that we found such a kind and caring young lady to spend time with him.

On Thursday, he met with his music therapist for their regular weekly session. Because Alex has been sick with thrush a good part of the summer, he hasn’t always been his best during music sessions. At times he has been fatigued, and other times he hasn’t wanted to sing, probably because his mouth hurt from the thrush. However, this week, he had a terrific session in which he was focused and engaged. At one point his therapist came to ask me if Alex could have a drink; he was delighted that Alex nicely asked him instead of running to ask me. Alex was also enthusiastic about watching music videos on his therapist’s phone prior to singing the songs, and his therapist thinks he’s stumbled on a good way to preview the songs. Since I could actually hear Alex singing in another room, I think he’s right. Not only are we pleased that Alex continues to make progress in music therapy, but we’re also thankful that his music therapist brings out the best in him and celebrates even seemingly small steps forward, knowing that they lead to larger leaps.

While we were a bit concerned how Alex would handle a week packed with appointments, this week turned out much better than we anticipated. He fully cooperated with all the various people who worked with him, and their praise and encouragement made him want to do his best. Consequently, not only are we are thankful to God for the progress Alex continues to make, but also for the outstanding professionals we have been blessed to work with, helping him to be healthy and happy.

“The Lord has done great things for us, and we are filled with joy.” Psalm 126:3

Sunday, July 30, 2017

Quarterly Meeting

 
Last week, we had our regular quarterly meeting with Alex’s support team of professionals: his case manager who oversees his budget, a representative of the company who provides respite care, his behavioral therapist, and his music therapist. These meetings are similar to case conferences or annual case review conferences to discuss IEPs for students in special education except that they are held four times per year in our home.  Even though we have become accustomed to how these meetings proceed and truly like all of the people who work with Alex, I always wonder ahead of time what topics might arise and how Alex will react. From his standpoint, sitting through those hour-long meetings must be difficult. Not only does he have to listen to everyone talk about him, but also he’s the center of attention who must answer questions, which has to be difficult for him. Nonetheless, he usually takes these meetings in stride and cooperates nicely. This meeting was no different.

Because Alex had been battling thrush during the past quarter, he has not made the progress we would have liked this summer. The yeast infection has made him tired, but thankfully, not irritable, as it often does. He has not felt up to going places as much as usual, and he has preferred a more relaxing summer of watching baseball games on television and reading. Usually, the case manager will ask what new things Alex has done, seeking to find what progress he has made in trying new activities, but we didn’t have much to offer. However, everyone showed understanding that he has not been feeling well, and his therapists praised his progress in spite of suffering from illness. In fact, this meeting was one of the most positive ones we’ve ever had, which was a nice surprise.

The first person to arrive was the representative of the company that provides respite care for Alex. We had not met this woman before, but she was very friendly. When Ed introduced Alex to her, he made a good first impression by saying, “Nice to meet you” and giving her a handshake with the correct hand. (Nine times out of ten Alex will offer his left hand instead of his right hand for a handshake.) I only wish that his behavioral therapist had been there to see how well he put into practice the social skills she has worked on with him. Clearly, the meeting was off to a good start.

Later, his behavioral therapist explained that our Fun Friday sessions in which she and I take Alex out into the community had been less frequent this summer due to her busy schedule. Nonetheless, she described our recent return to our local Burger King, where the friendly staff always greet Alex warmly and treat him kindly. When we arrived there, one of the ladies immediately came to talk to him, telling him how much she’d missed him. Over the counter she extended her hands, which Alex took hold of, essentially a hug between old friends. Another lady who works there came over to our table to greet Alex with affection, making him feel welcome. As Alex’s mom, I find their kindness toward my son endearing, and I think they find his joy in seeing them, shown by a wide smile and a shudder indicating happiness he can’t contain, endearing. Despite his difficulty with communication and social skills, Alex is making progress and enjoys interacting with people who reach out to him with kindness.

In another anecdote shared during the meeting, his music therapist told of a session where Alex was clearly fatigued from the thrush and needed to end the session early. Although I appreciated his music therapist’s being understanding, I told Alex that he needed to finish the session properly, meaning that he needed to sign the therapist’s time sheet and thank him. Instead, he suddenly burst out singing the goodbye song, which is always the last song they sing in music therapy sessions. His therapist and I were surprised and pleased that he was willing to sing the song unprompted, a cappella, and solo. After Alex finished singing, his therapist grinned and said, “That works for me!” Once again, Alex showed progress by completing most of the session even though he didn’t feel well and by ending that same session literally and figuratively on a high note.

As Alex’s support team chatted with our family and each other in a relaxed and friendly way, I was reminded how blessed we are to have such wonderful people working with our son. For years, Ed and I did our best to provide for Alex’s needs and searched for people who could help him overcome the obstacles of autism. However, God provided the services Alex needs now and sent people with talent and expertise to help. More importantly, these people have genuine caring and affection for Alex, and like us, they want him to be the best that he can be. With all of us behind Alex guiding and supporting him, he will continue to develop skills he needs in life and to reach his full potential.

“You guide me with your counsel, leading me to a glorious destiny.” Psalm 73:24

Sunday, July 23, 2017

"Do This to Remember Me"

 
Although I was raised as a Protestant, I often find my beliefs and values align solidly with those of my devout Catholic relatives and friends. In the Christian Disciples of Christ denomination in which I was baptized, emphasis is placed upon the rite of communion, which is celebrated weekly. One of the beliefs I admire most about the Disciples of Christ is the ecumenical stance on communion, inviting all who profess belief in Christ to partake in communion, not just those who are members of the church, emphasizing that Christ offers the invitation to commune with Him and those who believe in Him.

In I Corinthians 11:23-33, Paul offers directives for communion based upon what he “received from the Lord himself” that continue to guide Christian churches today. He describes how during the Last Supper, Jesus broke bread and proclaimed, “This is my body, which is given for you. Do this to remember me.” Then He took the cup of wine and said, “This cup is the new covenant between God and his people––an agreement confirmed with my blood. Do this to remember me as often as you drink it. For every time you eat this bread and drink this cup, you are announcing the Lord’s death until he comes again.”

Clearly, the significance of this commemoration means that all believers should be included. However, a recent directive by Pope Francis would exclude many Catholics from participating in this sacred rite of communion. According to Vatican Radio, the Pope requested that a letter be sent to Diocesan Bishops regarding appropriate bread and wine for the Eucharist; this letter specifies that gluten-free bread may not be used for communion. To quote this document, “Hosts that are completely gluten-free are invalid matter for the celebration of the Eucharist.”

According to this directive, “The bread used in the celebration of the Most Holy Eucharistic Sacrifice must be unleavened, purely of wheat, and recently made so there is no danger of decomposition. It follows therefore that bread made from another substance, even if it is grain, or if it is mixed with another substance different from wheat to such an extent it would not commonly be considered wheat bread, does not constitute valid matter for confecting the Sacrifice and the Eucharistic Sacrament.”

Consequently, those who have gluten intolerance, such as those with celiac disease or many people with autism, would not be able to partake in communion in Catholic churches. While I am neither a Catholic nor a member of the clergy, I do not believe this is what Christ intended when He instructed Christians to remember Him through communion. As the mother of a child with autism who has sensitivity to gluten, I do not believe that Jesus would want my son or any other person with gluten intolerance issues to consume bread that would make them ill. Nor do I believe that Jesus would want my child nor any other with autism excluded from communion.

Those churches that recognize the dietary needs of their parishioners who must adhere to gluten-free diets and provide them with gluten-free bread as an alternative for communion reflect a welcoming spirit that should be part of communion. Rather than excluding believers, churches should be including them as part of a rite that binds Christians together. Instead of insisting that the bread be made of wheat, churches should remember Christ’s teachings, “This is my body, which is given for you. Do this to remember me.” I sincerely hope that the Catholic Church will prayerfully consider the importance of showing mercy to those who cannot eat wheat by offering them alternative communion bread. To deny these believers access to a significant rite seems to be directly in contrast to what Christ intended.

“Finally, all of you, be like-minded, be sympathetic, love one another, be compassionate and humble.” I Peter 3:8

Sunday, July 16, 2017

Marriage and Raising a Child with Autism

 
Twenty-nine years ago, Ed and I were married and said our vows in front of God and our family and friends. At the time, we had no idea how those promises of commitment would be tested over time, especially in raising a child with autism, something we never anticipated. Nonetheless, the struggles we have faced have only served to make us stronger as people and our marriage stronger in faith and hope and love.

Although the statistic of an 80% divorce rate among parents of children with autism is often presented as truth, studies have shown this to be untrue. In fact, research done by Freedman and Kalb published in 2011 found “no evidence to suggest that children with ASD [autism spectrum disorder] are at an increased rate for living in a household not comprised of their two biological or adoptive parents compared to children without ASD in the United States.” Moreover, “results show that a child with ASD is slightly more likely than those without ASD to live in a traditional household.”

So, what keeps a marriage solid in the face of the obstacles autism presents in family life? I can only speak from our own experience, but I can clearly point to certain factors that have not only kept our marriage together but have also made it stronger.

First, one of the most important components of our marriage is our shared love and devotion for Alex that guides nearly every aspect of our lives. Trying to make his life the best it can be consumes our thoughts, time, and energy. Our shared goals encourage us to work together harmoniously to determine the best ways to help our son. As Alex makes progress, we celebrate together, knowing that our collaborative effort has helped make those milestones possible.

In addition, we know the value of tag-team parenting. Raising a child with autism is often daunting and can test patience and endurance. When one of us is flagging, the other steps in to give the other a needed break from the responsibilities of parenting. Sometimes we simply back the other one up by reminding Alex to thank the other parent or reiterating instructions we have heard the other one give him.

Also, we support each other by giving encouragement and praise often. Since these children don’t follow the typical patterns of development, we frequently find ourselves in situations not described in childcare manuals. Walking on uncharted paths can be scary, and we need reassurance that we’re doing the right thing. I seek guidance from Ed regarding decisions about Alex, trusting his judgment, and he consistently conveys that he completely trusts my judgment in all matters regarding Alex. Our mutual respect for one another has significantly strengthened our relationship, especially during uncertain times when we struggled to find what was best for Alex.

Another key to our marriage is division of labor. Since I am a morning person and Ed is a night owl, we take turns dealing with Alex when we are at our best. When we homeschooled Alex, we divided subject matter according to our strengths, which meant that I taught him German while Ed taught him math. He trusts me to make medical decisions, but he goes along to all of Alex’s doctor appointments and asks questions to show his support. His calm balances my anxiety, and his assertiveness makes me less timid. We complement each other well.

At other times, teamwork is essential, and we have learned to work together well. Our ability to fabricate creative details together to soothe Alex’s worries on the spur of the moment is sometimes nothing short of amazing. While we weave stories with more fiction than fact, we are able to convince Alex that he has nothing to fear. Our combined skills enable us quickly and quietly to remove Alex from a situation he suddenly finds overwhelming. In fact, we often joke that we could work for the Witness Protection Program because we can get Alex in and out of places without anyone ever knowing he was there. With just a look between us, we know what we need to do without saying a word, working together to get Alex to a secure and serene place.

Certainly the most essential pillar of our marriage is our faith. Despite our different upbringings as a Catholic altar boy raised in New York City and a Midwestern Protestant girl, we have found common ground in our Christian faith. As our faith has been tested, we have prayed harder for patience, strength, and Alex’s healing. When our prayers have been answered, we have thanked God for His goodness. As parents, we have been most proud of the faith Alex has developed, knowing that God will always take care of him.

On this anniversary of our wedding, we celebrate another year together, but perhaps more than typical couples, we know how precious our marriage is because it has been tested. While dealing with the obstacles of autism could have taken its toll on our relationship, God has given us everything we needed and allowed our love to grow stronger. Moreover, through His gift of Alex, we have a daily reminder of what is most important in life, and we are able to experience true joy watching our son, who––despite autism––finds happiness in the simple things of life.

“Children are a blessing and a gift from the Lord.” Psalm 127:3

Sunday, July 9, 2017

Increasing Intelligence in Autism

 
For weeks, I have been setting aside autism research to study once I had the time and the concentration needed to read and understand these articles. Since Alex is feeling better, and my to-do list is getting shorter, I delved into some of those research articles I had put away for future reference. Yesterday, I ran across an interesting article published online in Spectrum on May 13th of this year entitled, “Many children with autism get significantly smarter over time.” [To read this article, please click here.] Written by Katie Moisse, this article summarizes research done by Professor Marjorie Solomon and her colleagues at University of California, Davis, MIND Institute. This research was presented in San Francisco at the 2017 International Meeting for Autism Research held in May.

Using data from the Autism Phenome Project, a long-term study of children with autism, Professor Solomon and her research team looked at the IQ scores of 20 girls and 82 boys diagnosed with autism. Comparing these children’s IQ scores at 2 to 3 years of age to their later scores between ages of 6-8, the researchers found that IQ scores were not stable in these children. In typical children, IQ scores tend to stabilize around the age of 5. However, half of the children with autism in this study had increased IQ scores between the ages of 2 and 8. These findings sharply contrast a 2013 study that found IQ scores varied little from childhood until middle age in people with autism.

Professor Solomon and her colleagues divided the children with autism into four groups. First, the “high challenges” group, which made up 27% of the children in the study, started with IQ scores around 44, and these scores dropped over time to an average of 36.

The second group made up 18% of the study group; named the “challenges” group, they averaged IQ scores of 62, which remained stable over time.

A third group, the “lesser challenges,” made up 22% of the children studied. This group started with IQ scores around 100, considered average intelligence, and their scores improved to about 111. These children showed the most improvement in autism severity over time, as well.

The fourth group, which comprised approximately one third of the children in the study, was called the “changers.” These children started with below average IQ scores (around 65), but they made noticeable progress with time, averaging later IQ scores just below 100. In addition, the changers reflected the most progress in verbal ability over time.

In addition to studying the changes in IQ scores, the researchers noted different patterns of progress regarding communication skills, autism severity, and behaviors. Behaviors were specified as internalization, such as anxiety, and externalization, such as hyperactivity. Over time, all four groups––high challenges, challenges, lesser challenges, and changers––exhibited fewer negative behaviors. Professor Solomon notes that this study should encourage families with autism, stating, “…over one half of individuals are seeing big IQ gains over time, and all are seeing internalizing and externalizing behaviors drop off.”

Certainly, as a parent of a child with autism, I find the results of this study hopeful, not only because these children’s IQ scores increase, but also because their negative behaviors decrease. However, I’m also curious about the connections between improvements in IQ scores, communication skills, and behavior. Since IQ tests often tend to be related to verbal skills, perhaps as the children’s communication skills improve, their IQ scores more accurately reflect their true intelligence. Maybe when their behavior improves, they can better focus on learning and testing, which could account for their higher IQ scores. Moreover, I wonder what positive effects various therapies (speech, behavioral, occupational, etc.) might have upon these children, reducing their autism severity and improving their communication, behavior, and ability to learn. These children might not be actually getting smarter; they just gain the skills they need to show how much they really do know.

Nonetheless, any improvements, whatever their cause, are reasons to celebrate. As we have seen with Alex, the better he can manage anxiety, the easier the words can flow to express what he’s thinking and feeling, and he can then demonstrate what knowledge he has been storing in that amazing mind of his. Hopefully, this research will remind people never to underestimate the potential of children with autism because with time they do, indeed, get better.

“But there is a spirit within people, the breath of the Almighty within them, that makes them intelligent.” Job 32:8

Sunday, July 2, 2017

What a Difference a Week Makes!

 
After weeks of waiting for Alex to recover from the ill effects of thrush and essentially waiting for our anticipated relaxing summer to begin, we had breakthroughs this week. Our prayers were being answered, and we were reminded that God puts people in our lives so that we can support each other.

On Monday, the office of the nurse practitioner who prescribes Alex’s medications for anxiety returned my call after three weeks of waiting to hear from her. Her receptionist told me that his lithium level was a little higher than normal and that we should reduce his bedtime dose. In addition, the nurse practitioner wanted us to have his lithium level tested in a month, and she can see him in a few weeks, instead of waiting until the middle of September, as we’d originally been told. Although we already knew the level was too high, had reduced the dosage three weeks ago, and had retested the level and found it thankfully back in normal range, I was glad that her professional assessment was the same as my mother’s instinct. Moreover, I’m pleased that we don’t have to wait as long to see her as we had previously thought.

On Tuesday, I found out that one of my closest friends, who has an adult son with disabilities, will soon receive the Medicaid waiver providing services for him after a long wait. As I explained to her, this is like winning the lottery for parents of children with disabilities because we can finally get the support we need for our kids. I think she’s a little skeptical, but I pray that her son will qualify for services that will not only make his life easier but also his parents’ life, too.

On Wednesday, I chatted with my neighbors who also have a son on the autism spectrum. Even though their son is higher functioning than Alex, we share the same worries about how our sons will cope in the adult world, especially if we’re not right there to help them. They also told me that our new neighbors, whom they have met but I have not yet, have a child with autism. How mind-boggling it is that three families within a few houses of each other are dealing with autism! Of course, some experts would simply attribute this “coincidence” to better diagnosis, rather than an autism epidemic.

On Thursday, Alex had his best music therapy session in a month. Instead of acting lethargic and irritable, he was engaged and good-natured––a positive sign that he’s finally feeling better. He even requested two new songs: “Take Me Out to the Ballgame” and “Go, Cubs, Go,” a sure sign that he’s been watching a lot of Chicago Cubs baseball games on television this summer.

On Friday, Alex showed that he’s feeling better by requesting to go hiking. Apparently, his energy levels are returning because he did a great job walking the trails at a nearby wildlife preserve, despite the mid-eighty-degree heat. In addition, we have noticed that his appetite seems to be returning, as the variety and amount of food he’s eating has increased. Along with the physical improvements that indicate healing, his mind is sharper, as evidenced by improved speech in his comments, questions, and answers. Thankfully, the brain fog that accompanies thrush appears to have vanished, and Alex is doing so much better.

Yesterday, we took him to his cousin’s graduation open house, and he did remarkably well, despite all the people and activity there. He was pleasant and even did a good job of speaking to people. In contrast, the previous week at this other cousin’s graduation open house, he was anxious and overwhelmed, and we wound up not staying very long. However, a positive experience there made a lasting impression. My sister-in-law’s sister is very sweet to Alex, and she made a special point to come talk to him at the open house. Her kindness did not go unnoticed because Alex has added her to his nightly prayer list this week. As I have said before, I have to think that God hears the earnest prayers of my son, who appreciates those who are kind to him.

Although I found the month of June frustrating, waiting for Alex to get better, God answered our prayers for healing. As a new month begins, we have hope that Alex will continue to improve so that we can enjoy the relaxing summer I had envisioned. Although I don’t know what our plans will entail, I do know that I will be grateful that Alex is feeling better so that he can live life to the fullest. As Alex frequently reminds us, “Wait and see!”

“Lord my God, I called to You for help, and You healed me.” Psalm 30:2

Sunday, June 25, 2017

Held Up

 
The month of June hasn’t turned out as I’d planned. After over a year of not dealing with thrush, poor Alex has had one of the worst bouts he has ever had. Not only does the fungal infection make his mouth and throat sore, but the illness also causes him to develop terrible dandruff and acne. Besides the physical effects, the yeast overgrowth brings on brain fog that makes him less mentally sharp, especially when it comes to verbalizing what he wants to say. On top of that, we discovered that his lithium medication levels were too high, causing an increase of tremors that make using his hands extremely difficult. Since he had been doing quite well for many months, I was eagerly anticipating summer so that we could relax and enjoy activities together as a family. Instead, we have held up on doing things until Alex feels better.

Rather than going to restaurants, one of Alex’s favorite things to do, we have been literally spoon feeding him applesauce, coconut milk yogurt, eggs, and baby food. Our blender has been put to good use making fruit smoothies and rice milk ice cream shakes that soothe his throat and fill his tummy. Because he has lost some weight on his already slim frame, we have had to encourage him to eat every meal and nutritious snacks to ensure that he doesn’t become too thin. Even though he doesn’t feel good, he has been a trouper about eating what appeals and even trying to eat the foods he normally enjoys that apparently doesn’t taste good right now, a side effect of the thrush.

At the end of May, we took him to his family doctor because we were concerned about his decreased appetite, weight loss, and suspicion that thrush was behind his symptoms. His doctor gave us a prescription for seven days of the antifungal Diflucan to treat thrush and wanted us to return in a few weeks after he returned from vacation. He also expressed concern about the lithium level shown on a recent test, which we assured him we would discuss with the psychiatric nurse practitioner who prescribes Alex’s medications for anxiety.

After valiant attempts to contact the nurse practitioner by phone and email yielded no response, despite my insistence with her staff that we needed guidance regarding the lithium medication, we prayed and decided that we needed to do something to prevent lithium toxicity. With Alex’s doctor out of town and his nurse practitioner not communicating with us and unable to see him until the fall, we lowered his lithium dosage on our own. Thankfully, we saw no negative side effects, and his tremors seemed to decrease a bit with the medication reduction. While we were concerned about making this change without medical guidance, we believed it was the right thing to do.

This week, Alex had an appointment with his doctor, who was pleased that he had not lost any more weight and was showing signs of improvement. However, he agreed with us that the thrush is not completely gone, so he prescribed another round of Diflucan, this time for two weeks. When we explained our dilemma with the lithium dosage, he completely supported our decision, which was reassuring. In addition, he ordered a blood test to check the current lithium level that day and told us if the level was still too high, he would reduce the dosage again. We were pleased that he was taking charge and had a good plan after we felt abandoned by the nurse practitioner. Moreover, he wants to see Alex again in three months––or sooner if needed––to check his weight and overall health. Needless to say, we were happy with how well this appointment went, especially since Alex was very cooperative, feeling content and confident that we have a family doctor who genuinely cares about Alex and his health.

Later that afternoon, the doctor’s office called with the results of the lithium test (which was sooner than expected) to let us know that with the medication reduction we had made, the lithium level is now in normal range. Consequently, no further medication reductions are needed at this time. The good test results confirmed for us that we had done the right thing with God’s guidance and that Alex’s doctor is on top of things, which is important to us. While one professional had let us down, another had stepped up and made sure that Alex received proper care. Once again, God had shown us that He is always faithful and provides for our needs.

On Friday evening, we attended our first concert of the summer, a local church band playing in our downtown park plaza to raise funds and collect food for needy children in our community. Clearly feeling better than he has all summer, Alex enjoyed every minute of the concert, smiling, swaying to the music, and clapping his less shaky hands. While most of the songs were upbeat popular music, the band also played two contemporary Christian tunes. As they sang of God’s love, Alex’s expression can be best described as beatific. Sometimes I think he is closer to God than most of us, strengthened by a faith that allows him to be confident, in spite of autism, knowing that everything will be all right in the end. Watching his eyes shine and his smile spread across his face, I was reminded that, in spite of illness and autism and disappointments, God always upholds us and takes care of us, and, indeed, everything will be all right.

“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen and help you; I will uphold you with my righteous right hand.” Isaiah 41:10

Sunday, June 18, 2017

Father's Day

 
[I wrote this essay about Ed and Alex's relationship last year, and everything still holds true today. Ed's unconditional love for Alex and me has kept our family strong through trials and triumphs through the years. He and I have worked together as a team to make Alex's life better, and his steady calmness keeps me grounded. Patiently listening to my concerns, observations, and research summaries, Ed always supports me and assures me that he completely trusts my judgment. His encouragement in the midst of difficult times keeps me going; he helps me become all the things I am not by nature: brave, patient, and assertive. Of the many blessings in my life, by far one of the greatest is my husband, Alex's father.]

Raising a child is no easy task, and being a parent of a child with special needs adds a whole new set of unimaginable responsibilities. After more than two dozen years of watching Ed rise to the challenges of raising our son with autism, I am amazed by the patience he has developed, the strength and calm he exhibits that make me stronger and calmer, and the unabashed pride he takes in even the seemingly smallest of Alex’s achievements. Through the good and the bad and even the horrible times, Ed’s devotion to Alex and me has remained constant and has even become stronger with time, and for that, I am truly grateful.

I’ve heard it said that the best thing a father can do for his children is to love their mother. Alex witnesses every day how much his dad loves me through his thoughtfulness, respect, and affection. Moreover, Ed also expects Alex to treat me the same way, often reminding him, “Did you tell Mommy thank you? Well, tell her!”

In addition to mentoring Alex in how to treat others, Ed has also held Alex to high expectations. While my natural tendency would be to mollycoddle Alex because autism makes simple tasks difficult for him, Ed knows that he needs to learn how to do things on his own. For example, if Alex needs to wipe his face after eating, I grab a napkin and do it for him. Ed, on the other hand, patiently gives Alex directions, telling him to pick up the napkin and instructing where he needs to wipe his face and praising him for doing a good job. Similarly, he expects Alex to pick up after himself, whereas I would just come along behind him and put his things away for him. However, I won’t always be around to wipe Alex’s face or to pick up his belongings for him, so it’s a good thing Ed teaches him to be more independent.

Some of the most precious moments of my life are when I watch the two of them together without their being aware of my presence. Looking out the kitchen window, I have seen Ed patiently teaching Alex in the backyard how to throw or kick or catch a ball, encouraging him, no matter how many times Alex had to try before he could do it himself. When he finally mastered the skill, his face lit up, and he looked for Ed’s approval; his dad’s face matched his own, beaming with happiness and pride, as did mine watching from the window.

Sometimes I eavesdrop on their conversations and find the give and take amusing. Since speaking is so difficult for Alex, we hang on his every word, even when we have to ask him to repeat or clarify what he has said. I know that Ed savors his conversations with Alex because for many years we weren’t sure if he would ever be able to say more than a few words at a time. As they chat about baseball and jazz and the stock market and other interests they share, they thoroughly enjoy each other's company and appreciate what the other has to say.

Because children never fully appreciate all their parents do for them until they have children of their own, Alex may never realize all of the things his dad does for him. From being Alex’s personal chauffeur to cutting up his food into bite-sized pieces to helping him get dressed and all the other tasks most twenty-four-year-old young men can do without their father’s help, Ed unfailing takes care of Alex and never complains.

By lovingly caring for Alex, Ed not only takes care of Alex’s daily needs, but he has also developed Alex’s faith in God. Knowing that he can always depend upon his earthly father, Alex has no doubt that he can completely trust his heavenly Father. In fact, Alex’s perception of God as being smart and funny probably comes from his attributing these qualities to his dad. However, he rates Ed as being in the high ninety percentages in these two areas, but he gives God 100% rankings in the intelligence and humor categories, noting that only God is perfect. Indeed, Alex is right about God’s wisdom because God knew exactly what kind of father Alex would need to guide him on the less traveled road of autism and gave him Ed. How blessed I am to be the wife and mother to two such extraordinary men!

“The father of godly children has cause for joy. What a pleasure to have children who are wise.” Proverbs 23:24

Sunday, June 11, 2017

What I Am Going to Do

 
In the spring, I made a life-altering decision: this would be my last year of teaching. After thirty-three years of teaching middle school English and working with fantastic fellow teachers, I knew the time had come, just as my retired teacher friends had told me I would know. Although some of my friends and colleagues were surprised by the seeming suddenness in my early retirement plans, for months, God had shown me in various ways that I had finished with this stage of my life. After prayerful consideration, heartfelt conversations with my family, and financial calculations, I knew I was ready. Consequently, I have been completely at peace with finishing my career and looking forward to the future. After making my decision official, I never had even a twinge of regret or wistfulness, which confirms that I am doing the right thing at the right time.

What surprised me, though, was the question that many people asked me once they heard of my retirement: “What are you going to do?” I suppose, since I am retiring at the earliest eligible age, this inquiry makes sense. However, my impression of retirement was that it meant no longer having to do something. Because the question was not one I had anticipated, I didn’t really have a good answer. Moreover, I realized that for the first time in my life I did not have a detailed, organized plan, and I didn’t have alternate plans in case my original plan didn’t work. Amazingly, I was fine with that, which is totally out of character for me. Consequently, I knew my decision was guided by God’s plans and not my own.

I didn’t need to think about my future plans for long because the three people who know and love me best had ideas for me immediately. My mom, a retired teacher herself, is thrilled with my decision and suggested that now I will have time to take my blog entries and edit them into a book about autism. That is a project I have mulled for a while and will definitely take into consideration. My husband noted that now I will be able to get up and make breakfast for him every day. I think he was kidding; if not, he will be sadly disappointed. However, since he wholeheartedly supports my decision, he may be the recipient of donuts from my early morning trips to the bakery. Perhaps the most pleased by my retirement plans is Alex, who excitedly told me, “We can watch Price Is Right together every morning!” Now, that’s a plan I can embrace!

Aside from the suggested writing, cooking, and watching television, I will have time on my hands to fill. Those concerned that I will be twiddling my thumbs or eating bon bons in my free hours need not worry. What am I going to do? I am going to take care of Alex, just as I have for the past twenty-five plus years. What I have realized in the past several weeks is that only a few people who know our situation well understand what taking care of Alex truly involves. Because I have chosen to focus on the positive and tried not to complain about life with autism, I may not have presented a clear picture of what being a caregiver to an adult with autism actually requires. I suspect if people only knew, they would be less likely to ask me about my retirement plans.

So, what am I going to do? This summer my plan is to help Alex get well. Currently, he has probably the worst case of candida overgrowth he has ever had with cheilitis and thrush irritating his mouth and throat. A month ago, he had a virus that affected his appetite, so we have spent the last several weeks encouraging him to eat, trying to find things that appeal to him. The thrush complicated the situation by making even his favorite foods taste bad, and his sore mouth and throat makes eating painful. Consequently, our already thin boy has lost weight, which is concerning. His primary care doctor has prescribed an antifungal medication, which seems to be helping, but from past experience, we know that candida is hard to control, and it will take time before he’s well. We have an appointment to see his doctor again in a few weeks and are hoping that he will be better by then.

In the meantime, we know that he needs proper nutrition to heal, so we constantly encourage him to eat healthy foods. Compounding this issue is that we recently discovered that his lithium level is higher than it should be, leading to tremors that make eating with a spoon or fork nearly impossible. To make matters more complicated and frustrating, the nurse practitioner who oversees his medications has been incommunicado, and despite my best efforts to contact her, we have been put in a position of making medication decisions ourselves. Fortunately, Alex is responding well to the changes we made based upon research, but we never should have been put in this position in the first place. Nonetheless, we are literally spoon feeding Alex ourselves five or six times a day, just as one would an infant. Thankfully, he is also responding well to our coaxing him to eat, and we are seeing improvements in the variety and quantity of foods he will eat.

Along with the actual acts of caregiving, I find myself engaged in constant prayers not only for Alex’s healing but also for guidance so that we know how best to help him. Once again, I find myself having to develop my faith and patience as I wait for God to reveal His plans and to heal Alex. So what am I going to do? I am going to wait on the Lord and keep myself busy taking care of my precious boy. While that may not sound like an exciting way to begin retirement, I know that is what God wants me to do and will help me to do, and I have no doubt that the rewards will be absolutely worth the effort in the end.

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11

Sunday, June 4, 2017

Planning and Preparing

 
Yesterday I read a terrific blog entry by Phoebe Holmes on Scary Mommy entitled “Special Needs Parents Have an Extra Special Set of Parenting Skills.” [To read this post, please click here.] In this post, she describes how special needs parents are always prepared for anything, carrying tissues, assorted Band-Aids, pain relievers, and snacks. In addition, she explains that special needs parents always know where restrooms and exits are located. As she humorously suggests, “Follow us in case of fire––we’ll be the first ones out.” If things fall apart, our kids may fall apart, so we must always be overly prepared for any likely or even unlikely situations that may occur.

Fortunately, planning and organizing come easily to me. My colleagues jokingly refer to me as Pam-o-dex because I can quickly find any information someone might need. My husband has dubbed me the family E.P.A., or Executive Personal Assistant, because he and Alex rely upon me to have appointments and family outings arranged with every detail planned. This includes scheduling appointments that don’t conflict with Alex’s various therapy sessions or interfere with his beloved The Price Is Right or Jeopardy. Whenever possible I’m also careful to schedule appointments first thing in the morning or right after lunch in hopes of minimizing time spent in the waiting room.

In addition, to make sure we have any information that might come in handy, I have a red medical folder for Alex that I take with us anytime he has a doctor/dentist/optometrist appointment or goes for medical tests. In this folder, I have a copy of his legal document authorizing Ed and me to have rights as his medical power of attorney, a list of all his doctors with their addresses/phone numbers/fax numbers, a list of the medications along with the dosages he is currently taking, copies of his most recent lab tests, and dates of upcoming appointments so that I don’t accidentally schedule two things at the same time. Also, I carry his insurance cards in my wallet along with his state identification card. Clearly, the two years I spent in Girl Scouts taught me to “Be Prepared.”

Now that summer is here, we’ll be attending outdoor concerts and old-time baseball games at our local parks. This also puts my E.P.A. skills to the test, making sure that I bring everything we’ll need. Of course, we’ll need drinks and snacks that I’ll pack in our soft-sided cooler, along with napkins and wet wipes. One of the best things we ever bought was a lightweight folding cart, the beach caddy deluxe, from Bed Bath & Beyond (and I used a coupon to save 20 percent on the price). We put our portable chairs in it so that we don’t have to carry them, and the cart also holds our cooler and jackets. Alex loves to push the cart, so that makes getting to the park with all our stuff even easier. Also, I bring along Superband insect repellent bracelets that use natural substances instead of chemicals to ward off mosquitoes. (I buy ours in the garden section of Walmart for about one dollar each; Amazon also carries them.) As long as Alex has something to eat and the bugs don’t eat him, he is generally a happy camper.

Since school is out, we’ll be able to enjoy more family outings, which means that I’ll shift from lesson planning to activity planning, and I’ll trade my schoolbook bag for a snack bag. I’m looking forward to our summer adventures with my guys, who know they can trust me to have all the details arranged in advance. After all, I am the E.P.A.

“May He grant your heart’s desires and make all your plans succeed.” Psalm 20:4

Sunday, May 28, 2017

Martha's Month and Pam's Plans

 
Recently I received an offer for a free subscription to Martha Stewart Living magazine if I renewed my current subscription to another magazine by the same publisher. Since it cost me nothing, I decided to accept the offer, not even knowing how amusing I would find this magazine. On page one of every issue, readers are greeted with “Martha’s Month: Gentle reminders, helpful tips, and important dates,” a calendar with brief notes apparently highlighting what Martha plans to do each day. Clearly, she and I lead very different lives, and her agenda often makes me laugh. For example, why does she really need to “Sharpen knives and scissors” on June 19th?  Does that have anything to do with her plans to “Deadhead peonies” a week later?

I notice that she never mentions doing laundry, grocery shopping, or even spending time at the Target Dollar Spot. Perhaps she has staff to do those tasks that seem to consume so much of my time. I also suspect that her plans on the 9th to “Clean outdoor lighting fixtures” probably involve a more thorough job than my simply tapping the glass until the dead bugs fall out and then kicking them into the grass with my athletic shoes. Speaking of athletic, Martha admirably and diligently plans to exercise (weight training, yoga, cardio, and core on a rotating basis, of course) every Monday, Tuesday, Thursday, and Friday. My fitness routine is much less structured, consisting of random stair climbing to find things Alex has lost, contorted stretching to shave his face and tie his shoes, and power walking as a means to keep up with his long-legged strides. On three of those days when she is getting physical exercise, I’m getting mental exercise by working the Sudoku puzzle, knowing that Alex will carefully check my accuracy and call me on any mistakes I might make.

A good deal of Martha’s time seems to focus on gardening. She plans to plant melons, beets, spinach, lettuce, bush and pole beans, and sunflower seeds next month––all on different days. Instead, I will be planting myself on the couch to watch Jeopardy and baseball games with Alex. Martha will also weed her various gardens: rose gardens and vegetable beds. Instead, I plan to weed through autism research next month, looking for ways to make Alex better. The fruits of her labor allow her to “harvest garlic scopes” and peas; however, I harvest pens for Alex by lifting couch cushions and having them magically appear.

In other ways, perhaps Martha and I are not that different, after all. On June 2nd, she plans to “Wash and groom cats,” which I can’t think would be too much different than my washing and grooming Alex on a daily basis. On the 11th, she plans to “Pick strawberries for jam”; I just pick up strawberry jam at the grocery store. While she plans to “Stock up on summer wines” on the 7th, I plan to stock up on toilet paper around that time. On the 27th, she has earmarked time to “Feed roses,” and I feed Alex multiple times every day.

Aside from the small chores, we both have important tasks next month, as well. On the first of June, she will “Cover garden paths between beds with salt hay.” [What is “salt hay,” anyway?] On that same day, I will be teaching my last day of seventh grade English, trying to keep my students in their seats by walking the paths between their desks without the benefit of salt hay. On the fourth, she will “Judge the Cooper Hewitt Smithsonian Design Museum’s National High School Design Competition,” which sounds impressive. The next day, I will be meeting with Alex’s psychiatric nurse practitioner to go over his comprehensive metabolic profile, lipids profile, complete blood count, medication levels, and complete thyroid panel results, which also sounds fairly impressive. On the 24th, Martha will be enjoying recreation, as she plans to “Go for a horseback ride.” I, on the other hand, will be calling in Alex’s prescriptions, impatiently waiting for the ads about shingles and pneumonia shots to finish so that I can punch in the numbers to refill his medications.

Even though Martha’s life seems much more glamorous than mine with her plans to “Host friends for picnic” on the 10th and “Brunch” on the 25th, I wouldn’t trade my life for hers. She’s busy growing flowers, fruits, and vegetables in her garden while I’m busy helping my son grow and bloom into a fine young man, in spite of autism. My month may be more mundane, but I’m certain that the harvest I will reap will be much more fulfilling in the long run. Besides, I’m not big on gardening, wine, or cats. Instead, I think I’ll harvest some Bic ballpoint pens today for Alex before we plant ourselves on the couch to watch 1100 miles of auto racing with the Indianapolis 500 and the NASCAR Coca Cola 600. Now, that’s a gentle reminder, helpful tip, and an important date!

“The Lord will guide you continually, giving you water when you are dry and restoring your strength. You will be like a well-watered garden, like an ever-flowing spring.” Isaiah 58:11

Sunday, May 21, 2017

Finishing Strength

 
In our house, the month of May tests our endurance. As Ed and I finish up teaching for the school year, we find ourselves engaged in grading multiple papers and exams, sitting through end-of-the-year meetings, and trying to maintain the enthusiasm we had in August with students who would rather be outside enjoying the nice weather. Even though Alex continues his schedule of support services throughout the summer, May always seems to be difficult for him, too. Because he is quite intuitive, he likely senses the stress Ed and I feel trying to accomplish everything we need to do, despite our best attempts to keep things calm for Alex. In addition, the high pollen counts and unpredictable weather with varying air pressures along with his concerns about severe weather, namely thunderstorms and tornadoes, makes May difficult for him, as well.

Recently, he apparently caught the virus that was going around and making people lose their appetites. Fortunately, he doesn't seem to be in any discomfort and hasn't complained of anything bothering him. Not wanting him to lose weight and strength, we have encouraged him to eat and drink whatever appeals to him. Although he has been compliant, his diet still includes a limited range of soft foods, such as applesauce, pudding, and scrambled eggs. We keep trying to tempt him with foods we know he loves, but even when shrimp or meatloaf nears his mouth, he makes a face indicating disgust and tells us he’s not hungry. Our formerly meat-loving son who would eat nearly anything placed before him has become a vegetarian who favors fruit. However, we know with Alex that phases pass about as quickly as they appear, so we try not to fret about his current eating habits.

Other than his appetite, Alex appears healthy and content, still energetically happy hopping through the house and enjoying his usual activities. However, we have noticed that the tremor in his hands caused by one of his medications seems to have increased, making eating more difficult for him, and requiring more assistance from us. In addition, he is not as eager to go places as he usually is, which makes us think he’s still not completely recovered from the virus he had a couple of weeks ago.

The other day, Ed mentioned that he had noticed a white film in Alex’s mouth when giving him pills in the morning, and he wanted me to take a look in his mouth. Armed with a penlight, I couldn’t see any redness or sores, but I did see the telltale milky film we see when he has yeast overgrowth in his digestive tract. After more than a year of having the yeast under control, the beast sadly seems to be back. With the extremely warm and wet weather we’ve been having along with an immune system compromised by a strange virus, Alex was susceptible to the invasion of yeast in his digestive system. No wonder he hasn't been interested in eating much! However, we were thankful that the usual primary symptom––irritability, sometimes displayed in a meltdown––has not been present.

Fortunately, we had the prescription medication Diflucan on hand and gave him a dose on Friday and will give him the second dose tomorrow, praying that one round of antifungal will wipe out the yeast in his digestive system and heal him. Next weekend, we will take him for his routine six-months lab tests, which will help his doctors and us see if anything else could be contributing to his change in appetite and increased shakiness. In addition, he has his usual biannual appointment scheduled in a couple of weeks with the nurse practitioner who oversees his anxiety medications, so we can consult with her about our concerns. Hopefully, he’ll be all better by then so that we can spend the appointment talking about how well he has done since he last saw her in December.

With all the other stresses at the end of the school year, I really didn’t need having to worry about Alex’s normally healthy appetite being off. Feeling overwhelmed and fatigued, I have briefly toyed with the idea of having the lesson plans for the final two weeks of school for my middle school students revolve around watching YouTube videos while playing with fidget spinners. Of course, they would be thrilled, but I know that’s not what's best for them. Moreover, I know that I would not be giving them my best, which I always strive to do. With eight class days to go with my students, I will pray for strength, patience, and peace, knowing that God has me where He wants me to be for now, relying upon Him and waiting for what He has planned, and continuing to hope for Alex’s complete healing.

“But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.” Isaiah 40:3

Sunday, May 14, 2017

If Not For You

 
“If not for you
Winter would have no spring
Couldn’t hear a robin sing
I just wouldn’t have a clue
Anyway it wouldn’t ring true
If not for you.” ~Bob Dylan, “If Not For You”

Dear Alex,
If not for you, I wouldn’t have fulfilled my lifelong dream to be a mom. Thanks for letting me be yours.

If not for you, I wouldn’t be a NASCAR fan. Thanks for sharing one of your favorite sports with me so that I could enjoy it as much as you do.

If not for you, I wouldn’t have learned to wait patiently. Thanks for teaching me that good things, indeed, come to those who wait.

If not for you, I wouldn’t know the ABC Chicago meteorologists on a first-name basis. Thanks for making me as enthusiastic as you are about watching the weather reports on television.

If not for you, I wouldn’t be assertive when I need to be. Thanks for giving me reasons to stand up for what is right, making sure you get what you need in life.

If not for you, I wouldn’t know who, when, or where the Chicago Cubs are playing on a daily basis. Thanks for including me in one of your favorite pastimes so that we can cheer on our team together.

If not for you, I wouldn’t have had met the wonderful people who comprise your support team. Thanks for allowing your friends to be my friends, too.

If not for you, I wouldn’t truly appreciate the value of numbers and patterns in time, dates, addresses, and pi. Thanks for helping me overcome my dislike of math, something you adore.

If not for you, I wouldn’t have seen an endearing side in your daddy as he speaks sweetly and gently to you, makes sound effects to entertain you, and talks about you with such loving pride. Thanks for showing me what makes me love him best: his love for you.

If not for you, I wouldn’t pay much attention to the stock market or gas prices. Thanks for keeping me apprised of the daily trends you find so fascinating and making sure that I always go to the gas station with the lowest prices and keeping me honest by having me give you my receipts.

If not for you, I wouldn’t have known the value of a smile. Thank you for warming people’s hearts with your sweet smile that endears you to those who see the pure heart behind those cute dimples and twinkling eyes.

If not for you, I wouldn’t have become familiar with the expressions you have created in your clever mind. Thanks to you, I know what “bad imagine clothes” and “scroungy voices” are and why they must be avoided at all costs.

If not for you, I wouldn’t have realized that the only thing better than reading a good book is to read it aloud to someone you love. Thanks for appreciating books as much as I do and for indulging me in reading to you when you were able to read on your own.

If not for you, I wouldn’t have comprehended how much trivia I have stored in my brain in my lifetime. Thanks for insisting that we watch Jeopardy every afternoon so that we can beat most contestants by combining our acquired knowledge.

If not for you, I wouldn’t know the depth of God’s love, grace, and faithfulness. Thanks for your steadfast faith that reminds me to trust that everything has a reason and that God will always take care of us. I have no doubt that He gave you to me to teach me the most important lessons I needed to learn in life, which makes you my greatest blessing.

Love always,
Mommy

“Children are a gift from the Lord; they are a reward from Him.” Psalm 127:3