Commencement

 

As another school year comes to a close, those of us who are teachers try to impart some final words of wisdom to our students before they leave our classes, hoping they may remember something useful from the time they spent with us. Traditionally, this time of year brings graduations and graduation speakers, who, like teachers, offer platitudes to young people going out into “the real world.” While graduation seems like the celebration of the end, these ceremonies known as commencement actually signify the beginning.

Around the country, universities invite various noted celebrities, politicians, and alumni to speak at their commencement ceremonies to give advice to the graduates. Some of these famous people seem to view themselves as experts on life, yet one might question their true expertise. Others offer wisdom notable enough to be quoted in the media. For example, the following quotes were made recently during commencement addresses:

Academy Award winning actor Matthew McConaughey at University of Houston: “Do not fall into the entitlement trap of feeling like victim. You are not. Get over it and get on with it.”

Musician Jon Bon Jovi at Rutgers University: “As the night ignites the day, go make some memories along the way.”

Former President George W. Bush at Southern Methodist University: “You can be hopeful because there is a loving God.”

These comments intended to enlighten young people were similar to those I read last night in a list of one hundred tips for life supposedly created by a high school economics teacher for his students, entitled, “An Econ Teacher Gave His Senior High School Students His Personal List Of Wisest Words…And They Make a Lot of Sense.” [To read this list, please click here.]  Among these one hundred helpful suggestions, I found the following three especially useful:

#71 “If you don’t understand, ask before it’s too late.”

#75 “Keep your word.”

#90 “Make the little things count.”

After reading these commencement speeches and the teacher’s tips, I considered the value of the advice given. Is the purpose of the advice really intended to help others––as I truly believe most advice is given in that spirit, or is it to make oneself seem superior to others? As I read many articles written by parents of children with autism, I’m sometimes perplexed by those who assert themselves as experts, especially when their children are quite young. After being an autism mom for nearly twenty-three and a half years, I have learned from many experiences. However, one of the most important things I’ve learned is that I am still learning something new every day. Certainly, I’m no expert, but I do like to share what I have learned along the way, in hopes that our experiences may be of some help to others, just the way I like to share a good recipe for others to enjoy. With that disclaimer in mind, I would like to offer my fifteen for ’15––some things I’ve learned from being an autism mom.

Begin one new thing (supplement, therapy, method) at a time so that you know what to keep doing and what to stop immediately.

Don’t fret. This annoying phase will pass and be replaced by an equally annoying one.

Focus on your child’s strengths, for those will be needed to overcome the weaknesses.

Ignore rude comment by those who do not understand. In the words of my wise friend, “Smile and think, it sucks to be them.”

Find a doctor who listens. If your doctor doesn’t really listen, find another.

In the words of Barney the Purple Dinosaur, “Please and thank you are the magic words.” Expressing gratitude not only makes you feel good, but good manners also make people want to work with you and your child.

Trust your gut as a parent. Instincts are God’s way of telling you which way to go.

When you don’t know what to do, follow the insightful words of my son, “Wait and see!”

Placing duct tape over the speaker of noisy toys muffles them to a comfortable decibel level. Duct tape also nicely secures objects to prevent them from being thrown.

Praise proves productive. Compliments instill pride and give impetus to keep trying.

Mr. Clean Magic Erasers can magically remove nearly anything a child’s fingers leave behind on a wall, door, or woodwork.

Remember the words of the Roman poet Virgil: “Omnia vincit amor”­­––“Love conquers all.”

As Christopher Robin told Winnie the Pooh, “You’re braver than you believe, stronger than you seem, and smarter than you think.”

Pray hard. Have faith. Trust God. Remain hopeful.

And so, as another school year ends, I am thankful for my students who were willing to learn from me and who were willing to teach me. Most of all, I’m proud and grateful that my favorite student, Alex, maintains a love of learning and a willingness to keep improving his skills, beginning each new task with enthusiasm. No teacher could ask for more than that.

“Intelligent people are always ready to learn. Their ears are open for knowledge.” Proverbs 18:15

Planning for the Future

 

Just when things seem to be rolling along smoothly, something arises to stir the waters and make Alex’s future a bit uncertain. This week, we had our quarterly meeting with Alex’s team of support specialists, including his case manager, his behavioral therapist, and a representative from the company who provides respite care for him. In addition, the coordinator of his day program where he learns computer skills joined our meeting by speakerphone so that she could update the team on Alex’s progress. Also, Alex’s music therapist, who was unable to attend due to family commitments, provided a written report of Alex’s progress. Every quarterly meeting, Ed and I look around the room and are reminded how blessed we are to have such caring and capable people working with Alex.

As each member of the team provided input on Alex’s progress toward goals, we were pleased to hear positive assessments and encouraged that they believe he is doing very well and capable of learning more. Although we see significant improvements, it’s nice to hear good things from those who can be more objective than we can be as his parents. Probably the greatest blessing is that the two major areas of concern in his behavioral plan—physical aggression and property destruction—are behaviors we have not seen in a while, thanks to proper medication that helps his anxiety and to therapy that has helped him learn better coping skills. With those major hurdles aside, we can focus more upon developing the third area of his behavioral plan—appropriate social behaviors.

Because Alex is doing well, we agreed as a team to keep all of his supports in place with once a week sessions of behavioral, music, and recreational therapy, one afternoon a week with his peer companion as respite care, and two sessions per week of computer class at the day program. In addition, he will extend his day program time by staying an extra hour each session and having lunch with his peers at the day program so that he can continue developing his independence and social skills. Needless to say, we are delighted with Alex’s support programs, especially since he thoroughly enjoys working with all of these people and is showing signs of improvement from these interactions with others.

After our meeting, Alex’s case manager told me that she had more paperwork for us to sign but needed to be at another meeting, so we arranged for her to meet with us again later in the week. This time Alex, Ed, and I only met with her, and she needed to ask Alex some questions about how satisfied he is with the people who work with him. Although his speech limitations prevent him from expressing how truly content he is, his answers of “Good,” “Fine,” and “Yes” were accompanied by a convincingly big smile.

Then Alex’s case manager told us that some changes regarding services for adults with disabilities may be coming, based upon a federal government investigation in Rhode Island. She explained that the state agency that oversees services for the disabled in Rhode Island had been cited for not providing more opportunities for jobs, and the federal government is urging all states to encourage more community employment instead of placing adults with disabilities in day programs or sheltered workshops. Hence, day programs, like the one in which Alex is enrolled, may become a thing of the past. She went on to explain that vocational skills will be emphasized more, which is why she intervened to get Alex computer training, which is his best hope for employment.

After she left, I did some internet research to find out more about the Rhode Island programs coming under fire and found an article from January 15, 2014, in the Providence Journal entitled  “Department of Justice probe finds thousands of disabled R.I. adults ‘segregated’ in state programs.” [To read this article, please click here.] Apparently after observing state-licensed day programs and sheltered workshops in Rhode Island, the Department of Justice decided that the adults with disabilities who were participating in these vocational and day services were “unnecessarily segregated.” Consequently, they determined that these people should be integrated by working in community jobs. Although the article gives examples of people who are capable of working in the community instead of doing rote tasks for menial wages in sheltered workshops, I question how many others would be able to work in the community, due to various limitations. In addition to physical, intellectual, and social limitations disabilities may cause, communities may not have jobs to offer these adults or know how to train people with disabilities with the skills needed for the jobs.

Like the concept of mainstreaming special education students into regular education classes, this federal government decision in theory seems like a good idea to provide opportunities to those with special needs. However, the reality is that not enough resources, training, and opportunities for success are actually available. For example, when students go from a special education class of four students to a mainstreamed class of twenty-four students, they certainly cannot receive as much one-on-one instructional time from the teacher, even when various accommodations are put into place. Consequently, they may not be getting all the support they really need. Similarly, if adults with disabilities are placed in community jobs instead of day programs or sheltered workshops, they may not have the skills they need to be successful to complete their assigned tasks and to integrate in the community. While the government proposes this shift in policy is a matter of civil rights, I suspect that the real impetus for change is the cost of providing services for the disabled.

If, indeed, the government mandates that day programs and sheltered workshops be eliminated, the results could be disastrous. Too many disabled people need the structure and support of these settings, and not everyone is capable of working in the community. As Ed and I always do, we keep pushing Alex to reach his potential, hoping that he will develop his skills so that he can be independent eventually, and we trust that God has a plan for his future. However, not all adults have the resources Alex does, and I believe that the Department of Justice’s decision could have a profoundly negative impact on thousands of adults with disabilities. Now that would certainly be an injustice.

“In the same way, wisdom is sweet to your soul. If you find it, you will have a bright future, and your hopes will not be cut short.” Proverbs 24:14

Conversation

 

This past week, a colleague who teaches special education at the school where I teach English was commenting that some of her students who have autism don’t realize that they have autism. In fact, some of their parents insist that they do not want their children to know that they have autism. As teachers of these children, we must respect the parents’ decision and be careful never to reveal that we know those children have been diagnosed with autism. My colleague, who knows that Alex has autism because we have always been open about his condition, then asked me, “Does Alex know he has autism?”

As I explained to her, Alex does, indeed, know that he has autism and has been aware of this diagnosis ever since he received it as a preschooler. We never wanted him to think that we were keeping a secret from him, and we thought that not telling him might make him think he should feel ashamed of having autism, which we certainly did not want. Just as parents who adopt children are encouraged to tell their young children that they have been adopted so that they grow up knowing the truth and don’t discover it later in life, we have always been candid with Alex about autism. Because autism impacts his life tremendously, we wanted him to understand why some things are more difficult for him than they are for other people. Alex knows that just as he has brown eyes and brown hair, he also has autism. We’ve never had to wonder when we should break the news to him because he already knows.

Being someone who likes knowing the origins of words, I find the etymology of the term autism interesting. Coming from the Greek root autos, meaning self, the word essentially means a state in which the person exists separately from others. As WebMD explains, “One symptom common to all types of autism is an inability to easily communicate and interact with others. In fact, some people with autism are unable to communicate at all. Others may have difficulty interpreting body language or holding a conversation.” (“History of Autism.” Web MD, 12 May 2013.)

Certainly, Alex’s struggle with spoken language has hindered his ability to interact with other people, and we have worked with him to improve his speech and social skills. For him, spoken English is like a foreign language to most of us, where he struggles not only to find quickly the words he wants to say but also to figure out the proper grammar and syntax. Add in sensory issues that overwhelm him, and I imagine that for him, holding a conversation is much like trying to make oneself heard in the midst of a middle school cafeteria at lunchtime. No wonder he prefers to sit quietly and just listen instead of engaging in the discussion!

On Friday evening, we went to my sister’s house to celebrate my niece’s birthday. In a room full of fourteen lively family members and one dog, Alex sat calmly and quietly, seeming to enjoy listening to the various conversations without being overwhelmed and even smiling as he heard things that amused him. At times, he would quietly imitate people, especially my sister, whose voice fascinates him, repeating what was said. Although we know this is not socially appropriate, we believe that Alex is practicing speech so that he can better interact with others. So long as he does this quietly without disturbing others, we allow him to do it. Moreover, we explain to others that he does this because he really likes the person whom he is imitating; truly, “Imitation is the sincerest form of flattery” when Alex repeats after other people.

As Alex sat contentedly enjoying the discussions, he seemed as though he wanted to join the conversation but did not know how. At one point, my brother was talking about NASCAR, one of Alex’s favorite topics, and Alex quietly but excitedly asked Ed and me, “Is Uncle Freddy getting tickets to a NASCAR race?” We explained that Uncle Freddy was talking about having a gift certificate to learn how to drive a racecar on a NASCAR track, which Alex seemed to find interesting. Later, he noticed that my niece’s boyfriend had holes in the knees of his jeans, and he quietly commented to Ed, “He needs to buy a new pair of jeans because he has holes in them.” Ed then quietly explained that he had probably bought them that way because that was the style. Alex seemed a bit perplexed, but accepted that explanation.

After that, as my niece Hannah was talking, Alex leaned over to me and asked with concern, “Does Hannah need to have surgery?” When he last saw Hannah, she was talking about going to the orthopedic specialist to see if she would need surgery on her hip this summer, and he wanted to know what the doctor had said. Realizing that Alex had been listening to conversations with interest and was concerned about other people, I knew that he really did want to participate in the discussion. Instead of answering him myself, I told him that he could ask Hannah himself. Although he was tentative, he asked her whether she would need surgery, and she seemed pleased that not only had he shown concern about her but also that he was relieved she would not need surgery.

Although autism makes conversation and social interaction difficult for Alex, he does not exist in his own world. He genuinely cares about other people, even if he doesn’t quite know how to talk to them, but he wants to engage with them and find out more about them. Indeed, he’s even showing concern about them. Even though we were a little worried about how he would handle being in a large group of people, we realized Friday evening how important it is to give Alex opportunities to practice the conversation skills and social skills we have been practicing at home with him. Clearly, he is learning these valuable life skills, and we are delighted to see him making progress in these areas. More importantly, we are thankful to see his concern for other people and evidence that he is learning how to express those concerns verbally, proving that he continues to overcome the obstacles autism has put in his path so that he can truly enjoy being with others.

“Let your conversation be gracious and attractive so that you will have the right response for everyone.” Colossians 4:6

Blessings of Motherhood

 

“…While Earth herself is adorning,

This sweet May-morning,

And the children are culling

On every side,

In a thousand valleys far and wide,

Fresh flowers; while the sun shines warm,

And the babe leaps up on his mother’s arm:––

I hear, I hear, with joy I hear!”

William Wordsworth, “Ode: Intimations of Immortality from Recollections of Early Childhood”

Yesterday, as an early Mother’s Day gift, Ed brought me a beautiful bouquet of a dozen delicate pink roses from Alex and him. As I began to unwrap the protective covering surrounding the flowers, Ed noticed that one had been bent and snapped off its long stem. When I began to place them in a vase, their leaves fell off, and I found a stem without a rose. Disappointed that the roses were not as perfect as they had appeared, Ed sighed and apologized. However, I was delighted with my ten and a half leafless roses. Not only am I blessed to be Alex’s mother, but I am also blessed to have a loving and thoughtful husband who makes every holiday special. Besides, as I explained to him, those ten and a half roses symbolize our life with autism­­––not what we expected, but special and sweet nonetheless.

For all the sessions of various therapies, I’m thankful for the progress Alex has made.

For all the different pills I’ve administered, I’m grateful that Alex is better.

For all the questions I’ve had, I’m indebted to those who have answered them.

For all the times I have waited, I’m pleased that the waiting was worthwhile.

For all the worries and tears and fears, I’m appreciative of the joys Alex has brought me.

For all the prayers I have prayed, I’m content that God has always been faithful.

Twenty-four years ago, when I first discovered that I was going to be a mother for the first time and that I was carrying Alex, who was to be my only child, I had no idea what life had in store for us. After two dozen Mother’s Days, I can look back over all the troubles and triumphs and know how blessed I am to have Alex as my child.

When I update Alex's therapists on his progress, I’m thankful for our awesome support team.

When we do typical family things like going shopping or eating at restaurants or watching television, I’m grateful that we can enjoy these times together because Alex is better.

When Alex asks me countless questions, I’m indebted to Google for having answers when I do not.

When I tell Alex I’ll do something in five minutes and he sets the kitchen timer, I’m pleased that he makes me keep my promises.

When Alex takes my hand in a crowded place, I’m appreciative that he trusts me to guide him.

When Alex and I say bedtime prayers every night, I’m content that I have taught him always to have faith in God.

Happy Mother’s Day to my wonderful mother, who taught me all the things I needed to be Alex’s mother, to my sister and my sisters by marriage, to my aunts and cousins, to my dear friends, and to the autism moms like me. May God bless our children and us!

“So give your father and mother joy! May she who gave you birth be happy.” Proverbs 23:25

Autism: Something Old, Something New

 

This week, the Huffington Post published an outstanding article online entitled “Autism: Maybe It’s Not What We’ve Been Told.” [To read this article, please click here.] Written by an autism dad with a degree in biology, he explains how his three-year-old son with autism made significant sudden improvements in his speech, eye contact, behavior, and motor skills after being treated for a strep infection with antibiotics. Amazed by the positive changes in his son, John Rodakis began studying medical research regarding connections between antibiotics and improvement in autistic symptoms and was surprised how little research has been done in this area.

As he points out in his article, nearly all of autism research focuses upon genetics instead of biomedical causes. However, as he notes, recent medical research indicates that gut bacteria has been linked to ulcers, food allergies, and possibly diabetes. By focusing almost exclusively upon autism as a strictly genetic disorder instead of a medical condition, scientists may be missing the real cause of autism, one that could actually be treatable and perhaps even cured. John Rodakis asserts the need for research to pursue connections between autism and metabolism, immune function, and the microbiome (the bacteria, fungi, viruses, and other organisms that live on and inside the human body). He states, “The encouraging thing about this view is there is reason to believe that many of these children can get better.”

Also in the news this week, the U.S. government has changed its recommendation regarding how much fluoride should be put in drinking water, lowering the amount for the first time in more than fifty years. [To read a news report on this issue, please click here.] In 1962, fluoride began being added to drinking water supplies as a way to prevent tooth decay. However, apparently some children are getting too much fluoride, causing their teeth to develop white splotches, which are now found in approximately 40 percent of adolescents. This change of policy has made me wonder about what other recommendations the government has offered that may have negative effects upon children. While the white splotches appear to be only cosmetic, could fluoride or other substances our children are given for health reasons be responsible for unexplained increases in ADD/ADHD, allergies, asthma, and autism? As parents, we must pursue the unanswered questions behind what is causing our children’s health issues.

In previous blog entries, I have noted that we have followed the research done by doctors and scientists whose own children have autism, knowing that they will actively search for ways to make their children better but will not engage in risky treatments that could harm their children. While some of the methods we have tried with Alex under doctor supervision have had little or no effect upon him, others have certainly made him better. After tests showed that he had sensitivities to the proteins in milk (caseins) and grains (glutens), Alex has been on a gluten-free and casein-free diet that has kept him healthy and without digestive issues that plague many people with autism. Other tests revealed that he had heavy metal poisoning, specifically arsenic, mercury, and aluminum, and we treated this condition through chelation therapy with DMSA, a sulfur compound that binds to the toxic metals and removes them from the body. Had we left those toxins in his system, he could have developed serious health issues, such as cancer, in the future. One of the most significant improvements we observed occurred when we treated him with methyl vitamin B-12 shots, which we believe treated nerve damage. Within a few weeks of starting twice a week B-12 shots, Alex was finally able to toilet independently after ten years of unsuccessful potty training. To us, that was a miracle cure. Had we simply assumed that autism is a genetic disorder that could not be treated medically, we would not have seen the progress we have celebrated over the years.

Currently, we are still struggling with recurrent Candida yeast overgrowth in Alex’s digestive system, a battle that has been fought throughout his life intermittently but especially vigilantly in the past three years. Using a variety of antifungal medications and nutritional supplements, we keep trying to get rid of this stubborn invader. Over time, we have learned to recognize the signs, which I have dubbed ABCD: A-acne outbreak, B-behavioral decline, especially an increase in OCD and anxiety, C-coating of mouth and tongue in the morning which makes swallowing pills difficult, and D-dandruff outbreak. When the Candida is under control, all of these symptoms disappear. When the Candida is out of control, Alex’s negative behaviors escalate, even to the point of aggression; therefore, we must begin treatment as soon as we see the early warning signs. Hopefully, we will finally get the yeast under control so that Alex doesn’t have to suffer the annoying symptoms that bother him.

Consequently, like autism dad John Rodakis, I fully believe that autism is not what we’ve been told––a strictly genetic disorder that affects the brain––but a medical condition that needs to be investigated further so that our children can be treated and get better. If they have digestive conditions such as leaky gut or fungal and/or bacterial infections or nerve damage or heavy metal poisoning or allergies, to ignore these conditions is simply wrong. As John Rodakis states, “We need to fund this kind of research. Our children deserve better answers.” Indeed, they do.

“Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert.” Isaiah 43:13