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