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

"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

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

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 13^th 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

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