"To Protect and Serve"

Last month, two Northwest Indiana police departments announced initiatives to aid people with autism and their families. While these programs seem rather simple, the potential benefits could be significant in emergency situations. Moreover, these agencies demonstrated their caring and commitment to some of the most vulnerable citizens in their communities, which is certainly impressive and commendable.

On August 28, 2019, the Starke County Sheriff’s Office Facebook page posted an offer of free bumper stickers to families affected by autism or Alzheimer’s disease or dementia. Sheriff Bill Dulan noted that these stickers could be posted on homes or vehicles to give first responders a “Heads Up” in an emergency situation “that your child or loved one may need extra assistance.” These bumper stickers bear the symbol of the Starke County Sheriff’s Department and contain the following messages: “Emergency Responder: An occupant may have autism or special needs. May not respond to verbal commands” and “Emergency Responder: An occupant may have Alzheimer’s or dementia. May not respond to verbal commands.”

By providing these bumper stickers at no cost to families with special needs, the Starke County Sheriff’s Office shows their concern for those who may not be able to communicate in an emergency situation. Additionally, this simple method of identification may assist first responders in providing appropriate care and support to special needs people. Furthermore, these stickers offer peace of mind to families dealing with autism, Alzheimer’s disease, and dementia, knowing that their loved ones can receive the special care they need in a crisis.

While the Starke County, Indiana Sheriff’s Office provides free bumper stickers to help identify people with autism, the East Chicago, Indiana police now offer free identification bracelets for people with autism. On August 1, 2019, The Times of Northwest Indiana newspaper published an article written by Paul Czapkowicz titled, “Forces partner to aid autism patients,” explaining a plan by the East Chicago Police Department to help identify people with autism. [To read this article, please click here.] Working with the North Township Trustee’s Office, the police created the Emergency Identity Program. The township trustee’s office provides forms for parents of children with autism who wish to participate in the program. In addition, the agencies are currently working with the local school system to offer the program to students who have autism.

Parents who enroll their children with autism in the Emergency Identity Program will be given a lime green bracelet for their children to wear on their wrists, ankles, or shoes. These bracelets easily identify the wearers as having autism so that police officers can help them cope better in emergency settings. Additionally, North Township Trustee Frank Mrvan showed compassion for people with autism, hoping that the bracelets would have a positive impact instead of “having a stigma to them.” Participation in this program is voluntary, and families who opt to enroll will receive the identification bracelets at no cost to them.

As well as serving as an easily visible cue to first responders that the bracelet wearer has autism, the bracelets are numbered so that police can look up the person’s name, address, and phone number if needed. In addition, the agencies are collaborating with the local 911 dispatch center so that police could be notified in advance if they were going to the home of someone with autism. Yet another benefit of this program could be helping to find lost children who have autism since many children with autism wander from home, school, or other safe places. These bracelets could help police find these children and return them safely home.

Spearheading this initiative is East Chicago police officer Sgt. Justin Orange, Sr., who is the father of a child with autism. He states, “The reason why this was kind of near and dear to us was because I have a son with autism and there’s also another officer on our department who also has a son that has autism.”

In addition to developing the program to identify people with autism by using these bracelets, the East Chicago Police Department has worked with the Autism Society of Indiana to train officers in how to interact with people with autism and how to calm people with autism who may be agitated in an emergency situation. As North Township Trustee Frank Mrvan wisely notes, “With autism, very often there are triggers such as flashing lights and noises that escalate people, and their escalation turns to fight-or-flight.” Along with training police officers, the city has offered seminars for families of children with autism to explain procedures if the police were called to their homes.

Further demonstrating their commitment to helping people with autism, the East Chicago Police are working with the Autism Society of Indiana to provide the department’s squad cars with de-escalation kits. These kits include items, such as stress balls, stuffed animals, and spinners, to help calm people with autism who are overwhelmed by sensory stimuli or upset in a crisis situation.

At the time this newspaper article was written, more than one hundred children and adults with autism had already registered for the East Chicago Emergency Identity Program. Even more encouraging is that nearby communities are developing similar plans to help people with autism. Specifically, in Lake County, Indiana, the town of Munster has initiated a comparable program, and the city of Hammond has recently started their own program. In addition, North Township Trustee Frank Mrvan anticipates that the Lake County towns of Highland and Whiting will also develop similar programs to assist people with autism in the near future.

With the increase in the prevalence of autism, communities must develop plans to help people with autism and their families in emergency circumstances. Being able to identify people who have autism with stickers or bracelets could prove to be a simple yet effective way to assist with this issue. Moreover, training first responders how to interact with and to calm people with special needs could prove vitally important in emergencies. The Starke County Sheriff’s Office and the East Chicago Police Department clearly recognize the needs of people with autism, as evidenced by their recent initiatives designed to help this special needs population. Certainly, they embody the police motto, “To protect and serve,” through their dedicated efforts to help people with autism. Hopefully, more community agencies will follow their lead and develop programs to aid people with autism, especially in emergency situations when they need help the most.

“…help those in trouble. Then your light will shine out from the darkness, and the darkness around you will be as bright as noon.” Isaiah 58:10

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

Protecting Our Children

 

Protecting our children proves one of the most important and difficult challenges all parents face. When those children remain childlike even into adulthood, as many children with autism do, that obligation continues and often becomes even more difficult. Three recent news stories sadly reveal how vigilant autism parents must be in protecting their older children who cannot safely navigate society on their own.

This week, in a town near where I live, a sixteen-year-old boy and a twenty-year-old man were taken into custody for attacking a seventeen-year-old boy with autism, hitting him in the face and back of the head. Apparently someone videotaped this incident, and police were able to view this video. The victim told police that he didn’t understand why the two young men hit him, and his parents reported that he is autistic and non-confrontational. According to the twenty-year-old attacker, they were “just playing” and “didn’t hit [the victim] hard.” [To read this news report, please click here.]The flimsy excuses and lack of remorse offered by these bullies who preyed upon a disabled teenager is disturbing. Moreover, parents of older children with autism need to be aware of potential dangers, including cruel people who would victimize our children for fun, because our children can be oblivious to situations where they could be harmed.

In a similar recent incident, a fifteen-year-old boy with autism was the victim of a so-called prank orchestrated by his peers in suburban Cleveland, Ohio. Telling him that he was participating in the widely known ALS ice-bucket challenge, they instead dumped a bucket of urine and tobacco on his head and posted a video of this disgusting act online. After his parents saw this video, they contacted police, who investigated the matter, which gained national attention and outrage. Notably, comedian Drew Carey offered a $10,000 reward for information leading to the identification of those involved in perpetrating this cruel trick. After detectives investigated the case, they identified five teenagers, aged 14-17, who were involved. Prosecutors are currently reviewing the case to determine what charges may be filed. [To read an account of this incident, please click here.] Claiming that this was just a joke, these teenagers also seem to lack an understanding of how wrong it is to victimize a teenager with autism and then post the incident online for others to see. Again, parents of teenagers with autism must know who their children’s "friends" are and protect them from those who would humiliate and harm them.

Besides protecting our children from peers who would harm teens and young adults with autism for their own cruel entertainment, autism parents must also be vigilant against a surprising source of potential danger to our children. This week in Flemington, New Jersey, twenty-two-year-old Tyler Loftus, who has autism, bipolar disorder, and the mental capacity of a five-year-old, was arraigned in court for making “terroristic threats” and  for “unlawful possession of a weapon,” a three-inch pocket knife. Instead of teenagers who would get pleasure at the expense of a person with autism, Tyler Loftus is the victim of a failed system that should be protecting him.

After spending seven years at Woods School in Pennsylvania, where his developmental disability and mental health needs were addressed successfully, the Return Home New Jersey program forced him to obtain services in New Jersey, placing him in a group home, where his severe needs were not met, despite his mother strongly advocating for him. According to her, the past year and a half, he has had difficulties with the clients and staff at the group home because his mental health needs have been ignored, which leads to nearly daily 911 calls and trips to the local emergency room for assessment. Since the hospital cannot treat him appropriately, they return him to the group home. After allegedly threatening his roommate, he was arrested and placed in jail; this week he was arraigned and faces a court date next month regarding the criminal charges, which he clearly does not understand. [To read an account of this situation, please click here.] Incarcerating this young man with autism who clearly needs psychiatric care strikes me as not only heartbreaking but also as cruel and unusual punishment, and I pray that he gets the help he truly needs.

From our own frustrating and upsetting experience of trying to get help for Alex nearly three years ago, I know how limited resources are when it comes to helping adults with autism. Certainly, young men with autism cannot be allowed to be threats to society, but jail is not the answer to this serious problem. The lack of facilities that know how to treat behavioral and mental health issues related to adult autism is appalling and must be addressed. In the case of Tyler Loftus, he was receiving the proper care he needed, but the state of New Jersey took that support away from him because it was not being provided within their state. As parents of adults with autism, we must make others aware of the injustice our children can face and continue to protect them from those who will do them harm, whether knowingly or unknowingly. Our precious children deserve much better.

“The Lord says, ‘I will rescue those who love Me. I will protect those who trust in My name.’” Psalm 91:14

Reunion

 

When Alex was first diagnosed with autism, I desperately began searching for information to help him. Along with reading countless articles and books, I spent a great deal of time online, trying to find the most up-to-date research. In addition, I wanted to communicate with other parents who were dealing with the same things we were, hoping that we could share ideas. Thanks to the Internet, people can easily find all kinds of support groups that allow them to connect with others who share their concerns and interests. The first group I joined online was a fairly large autism group with members from all around the world. While I met some very nice and supportive parents in that group, a great deal of arguing and differences of opinion, sometimes known as “flame wars,” led a group of us to break away and start another group.

The second group was specifically for parents of children with hyperlexia, a relatively rare condition where children learn to read before the age of five or six. Most of our kids had begun reading at age three, and many of us used those reading skills to help our children with their speech delays. In addition, most of our kids were younger than those whose parents were in the autism group, so we were dealing with similar developmental issues. From that group, I bonded with a few special moms, and I still keep in contact with them and have always been grateful for their friendship, support, and empathy.

After a few years, a small group from the hyperlexia group formed another sub-group of parents who were doing biomedical interventions with our kids. As we put our kids on gluten-free and casein-free diets to address their food allergies and sensitivities, along with vitamins and nutritional supplements, we wanted to compare notes and share research. Not all parents want to pursue biomedical methods, and we respected those who had chosen not to use those approaches with their kids, taking our conversations elsewhere. I learned a great deal from both groups and appreciated the camaraderie that these smart and dedicated moms offered.

As Alex grew older, I was busier working with him and coordinating his therapies, which meant I had less time for the online support groups. For a while, I “lurked,” reading other people’s comments but rarely commenting myself, and eventually I simply no longer participated at all. Over time, most of us stopped chatting with each other online, busy with our kids and more confident in our abilities to parent these special kids without the support of others who were in the same boat.

Recently, I noticed an email with a familiar designation in my inbox and was surprised yet pleased to hear from one of the members of our small biomedical group. This group had probably not been active for more than five years, and she was curious as to how everyone was doing. Over the next few days, nearly everyone in the group responded with updates about how they and their kids—actually teenagers and young adults since so much time has passed—are doing. Some posted current pictures: their cute little boys I remembered from years ago have now matured into tall and handsome young men. As much as their sons had changed, these moms with their distinct voices had not changed much at all, and the familiarity of their personalities was comforting as I remembered many of our conversations from the past and how we had seen each other through those early, uncertain years.

Over the next several days, my inbox continued to fill with emails from this group, and I found myself feeling overwhelmed by the conversations. Perhaps I should explain that I’m not the type of person who goes to high school reunions. For those who enjoy reminiscing, I think that’s great, but I personally have no desire to bond with acquaintances from many years ago because life has taken me far from those past experiences. One of the topics the group discussed this week as I lurked was the question of  “What would you tell your younger self?” For some, this evoked wistfulness in choices they wish they had made; for others, this gave them a sense of wisdom from what they’ve learned from experience. While I didn’t respond, I suppose that I would have to say that I wouldn’t tell my younger self anything because I believe that everything we go through teaches us something we must learn. Perhaps I would share with my younger self the wise quote that Alex often tells me: “Wait and see.”

While a few of the online support group seem to be continuing their catching up on news and reminiscing, some of us are standing on the fringes, waiting until the reunion is over or until it’s polite to leave. Others have already left, explaining the obligations that keep them from staying any longer. In a few weeks, probably all of us will lose touch once again, maybe to be reunited a few years down the line when someone feels nostalgic and wonders how everyone is doing.

As I have mentioned in a previous blog entry, Alex still says his childhood prayer of “Now I lay me down to sleep,” followed by a list of people whom he asks God to bless every night. This list has increased over time as people who are important to him have entered his life, such as his beloved therapists. About a week ago, out of the blue, he added three names at the end of his “God bless” list. Although I recognized these boys’ names from many years ago, I asked Alex who they were. He smiled and told me that they were in his preschool class. I’m not sure why he suddenly decided to include these three boys, who are now young men, in his prayers, but I’m touched by the sweetness of the gesture. This was not a one-time addition, either, as Alex has continued to name them every night in his blessings list. When I asked Alex how old those three boys are now, he immediately answered, “Twenty-two,” knowing that they are the same age as he is. I wonder how those boys are doing, what they look like as young men, and what a reunion of that special needs preschool class would be like. Mostly, I hope they feel the prayers of their former classmate Alex, who still feels connected to them, even after seventeen years. God bless Alan, David, and Joshua, and God bless Alex, who prays for them all.

“Yet the time will come when the Lord will gather them together like handpicked grain. One by one he will gather them…” Isaiah 27:12

Talking About Autism

Yesterday I read an interesting article on the Woman’s Day magazine’s website entitled “9 Things Never to Say to a Parent of a Special Needs Child.” [To read this article, please click here.] Citing comments that mothers of special needs children have had people actually say to them, the article suggests why these remarks might be offensive and offers alternatives that may be more acceptable. While I can understand why some of these comments might seem rude or hurtful or just nosy, I really think that most people who ask questions or make comments like these genuinely don’t intend them in a negative way. In fact, I believe that many people honestly want to help, but they may not know how. Having been an autism mom through toddler, teen, and now twenties phases, I have a little different perspective that has come over time, and I offer my thoughts on some of the comments the article deems taboo.

“Wow, you must be so busy.” The article describes this remark as having a condescending tone, which I personally don’t see. All parents are busy, and special needs parents often have additional responsibilities, such as coordinating various therapies for their children. Yes, I’m busy dealing with Alex, and I’m thankful for organizational skills that help me keep things rolling and make me a queen of multitasking.

“You should take care of yourself so that you can take care of him.” The article suggests that this comment is unrealistic because special needs parents are too busy and/or have too many responsibilities to take time for themselves. However, the analogy of the oxygen masks on airplane flights seems to apply well: parents must place the masks on themselves before putting them on their children. In order to help their children, parents must address their own needs, too. In fact, I have told other autism moms that they need to take care of their child’s mother; too often, we think we must always put our own needs last. Being a parent requires sacrifice, and being a special needs parent requires additional sacrifices. Yet, we cannot take care of our kids if we are not at our best.

“We’re only given what we can handle.” This comment, which is often enhanced with religious significance by attributing the giver as the Lord, is described in the article as being a “meaningless platitude.” I suspect that parents who find this comment offensive either feel uncomfortable that they are perceived as stronger than other people, or they don’t appreciate viewing their child’s disability as a test from God. On the other hand, this statement is likely intended as a compliment and a reassurance that they can cope with the obstacles that come with raising a special needs child. I’ve always liked Mother Teresa’s quote about dealing with difficulties: “I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.”

“Have you tried…?” According to the article, this comment annoyed parents who didn’t appreciate advice from others who were not special needs parents. One mother remarked, “You have no idea what you’re talking about.” Although other people may not have first-hand experience, I appreciate when others show interest and care enough to share research or information they have found on autism. Because I have spent so much time researching autism, I usually have already heard about the information, but I’m happy to discuss it and look for new insights. Over the years, we have tried a variety of approaches hoping to help Alex, and I’m always on the lookout for something that we may not have tried yet. Instead of viewing that question as intrusive, I see it as helpful.

“What’s wrong with him?” While I tend to agree with the article that this comment is probably rude and nosy and certainly could be phrased better, I think that the motive behind it may be concern. Maybe I’m not as offended because I’ve asked the question about Alex myself in frustration, fear, and/or bewilderment. In fact, in moments of impatience, I admit that I have asked Alex, “What is your problem?!”  And then I remember he can’t help what autism has taken away, which motivates me even more to attempt to regain what has been lost and to appreciate the progress he has made in spite of the obstacles. That keeps me busy as I try to take care of Alex and myself, remembering that I can handle all things through Christ who strengthens me, and as I try different ways to eliminate what’s wrong to make him the best he can be.

“But you belong to God, my dear children. You have already won a victory over those people, because the Spirit who lives in you is greater than the spirit that lives in the world.” 1 John 4:4

Woman's Day Magazine

As my friends and family know, I have found great inspiration, spiritual strength, and deepened faith from Pastor Joel Osteen’s weekly-televised sermons as well as his best-selling books. At the end of every sermon, he offers a prayer in which he says, “Keep God first place in your life. He’s going to take you places you’ve never dreamed of.” While I’m not certain that I always keep God first place because Alex seems to demand that position in my life most days, I try to honor God in all that I do. I’ve always wondered what those places I’ve “never dreamed of” might be until this week when a feature article about my family entitled “Caring for Alex” appeared in the November 2012 issue of Woman’s Day magazine. Although I’ve known for a few months that this article was being published, seeing the story of my family and our pictures in print is still amazing to me—one of those places I “never dreamed of.”

In July, I was reading through comments people had made on my blog site and noticed one from Marjorie Ingall, who told me that she was writing an article for Woman’s Day about raising an adult child with autism and asked me if I’d be willing for her to interview me. Knowing that I tend to be a bit gullible [Ed is now laughing as he’s reading this because he thinks I’m very gullible. He’s actually right, but I prefer to think of myself as trusting instead of gullible.], I reined in my initial excitement and Googled Marjorie to make sure she was a legitimate writer. [Now Marjorie is laughing if she’s reading this because I never told her I’d investigated her background.] Once I discovered Marjorie’s impressive credentials as a published writer, I e-mailed her and told her I would be happy to talk with her about our experiences.

In our various conversations by phone and e-mail that felt more like old friends chatting than a writer interviewing a subject for research, Marjorie put me at ease in talking candidly about raising a child with autism. Since she had already read all of my blog posts on One Autism Mom’s Notes, she had a good sense of Alex and our family dynamics and how autism affects our lives. Her warm and sympathetic nature made me trust that she would describe us accurately as parents just trying to do what’s best for our special needs child. Keeping the mood relaxed, Marjorie and I spent a good deal of our phone conversations laughing because we share similar senses of humor, and Alex—my favorite topic of discussion—is a funny guy, as he’s proudly told us himself.

While Marjorie was putting together the written part of the article, Woman’s Day Photo Editor Roni Martin contacted me requesting photographs of Alex and our family to accompany the article. As I went through various digital pictures we had of Alex, I realized that we had very few recent photos in which he was not wearing sunglasses. Because his eyes are sensitive to light, he rarely goes outside without his sunglasses, and most of the pictures we had of him were taken outdoors. Nonetheless, I found some pictures and sent them to her. Then, she suggested that they send a photo crew to take new pictures of our family, explaining that the process would take about four to six hours. Knowing that Alex would not be patient for that long, I proposed instead that we take the pictures ourselves and see if they would be acceptable. Understanding of our situation, she agreed to our request and sent suggestions for what we should wear and how the photos could be staged. Since the article would be published in the fall, she recommended that we not wear summer clothes, even though we were taking the pictures in 90-degree weather. She also suggested that our clothes be solid-colored with no patterns, which made me realize that Alex did not own a single shirt without some sort of striped pattern, so we bought him a couple of solid-colored polo shirts at Target for our photo shoot.  In addition, she advised that a park setting works well for the background, and we headed off to our local park, Ogden Gardens, a beautiful place filled with trees and flowers. Fortunately, Alex was fairly cooperative as we took pictures, and we were pleased to have some good photos as a result.

After we sent the new pictures to the magazine, Roni contacted me again to let me know they wanted some pictures of Alex when he was little to help tell his story. Again, I went through our photographs and selected some of my favorites: a family portrait taken shortly before Alex was diagnosed with autism, a picture of Alex and me on the first day of school as he was headed off to special education preschool and I was off to teach my seventh grade students, and probably my favorite photo of Alex taken when he was two-and-a-half years old and happily reading [with his hyperlexic precocious reading skills] the business section of the Sunday New York Times.  Working with Roni was a pleasure because she was so helpful and accommodating.

A few days later, Woman’s Day articles editor Stephanie Dolgoff contacted me to ask some information about the old pictures and a few more questions about Alex. As she explained to me, this article was “especially close to [her] heart” because she has an older brother with autism who is now in his forties, and her parents had gone through experiences similar to those Ed and I had. Moreover, she expressed her desire that this article would “raise awareness about adults with special needs and their caregivers.” I appreciated her empathy, devotion to telling our story accurately, and her kindness.

Before the article could go to press, Maddi Scheier from Woman’s Day needed to fact check the article by reading aloud passages to me over the phone and making sure everything was true. Just as everyone else had been in this project, Maddi was friendly and pleasant, putting me at ease with her friendliness as well as New York accent that reminded me exactly of Ed’s sister. Now that all the pieces of the article had apparently been assembled, we waited until this week for the November issue to arrive at newsstands.

I suspect that my dad has been checking stores for the appearance of the November issue ever since October arrived, and apparently he talked with a CVS Pharmacy clerk who told him that grocery stores typically receive the new issues about a week before other stores. Somehow, he knew that grocery stores in our area were supposed to have the new issue on sale around noon this past Wednesday, and he immediately headed out in search of a copy for my mom and him and one for Ed and me. Successful in his quest, he immediately brought me my copy shortly after noon on Wednesday, and I was very pleased with the article. A surprise bonus was that the Woman’s Day Editor-in-Chief Susan Spencer previewed the article in her editor’s column with a very warm and thoughtful note about us. Needless to say, I have been very impressed with and appreciative of the Woman’s Day staff who worked on this article and showed great understanding and compassion, which has been a blessing.

As happy as we were with the article, we were overwhelmed by the response of our family and friends, who have shared their enthusiasm for our story being told in Woman’s Day. From my brother and Ed’s sister who couldn’t wait to read the article, so they read it in the parking lots of the stores where they purchased their copies, to the kind e-mails and hugs from friends and family, to my very sweet first hour seventh grade honors English class who applauded when my principal told the school on the morning announcements about the publication of the article, this has been a week where I have been reminded how blessed we are to have such supportive and loving people surrounding us. Although I wish our lives had never been touched by autism, I am thankful for the people whose love has blessed us and for those we have met on the journey. Just as I pray that my blog will help others dealing with autism, I also hope that the Woman’s Day article will help families like ours. And as I always promise in my prayers, “Lord, I will give You the glory!”

“Now all glory to God, who is able, through His mighty power at work within us, to accomplish infinitely more than we might ask or think.” Ephesians 3:20

Helping Hearts

This week, I was scanning through an old magazine at my mom’s house and ran across an article giving advice on how to help a friend who has cancer. Since two of my good friends have been diagnosed with cancer in recent months, the article piqued my interest. Most of the suggestions focused on what not to say, such as questioning the expertise of the patient’s doctor, offering advice on treatment, or telling the person, “I know how you feel” unless you have been a cancer patient yourself and really do know how the other person feels. While all of these ideas were reasonable, the article could have done a better job of telling a friend what to do to help.

Earlier in the week, a friend of mine called to see how things were going with Alex and apologized for not calling sooner. She had e-mailed me several weeks ago asking about his hospitalization, and I had detailed in a reply e-mail the problems he was having with anxiety and aggression and the need to have his medications monitored closely.  During our phone conversation, she explained that she hadn’t called sooner because she didn’t know what to say. However, she told me that she had been keeping us in her prayers. Of course, I understood how she felt because I wouldn’t know what to say to someone in our situation had I not lived it myself. Moreover, I was grateful that she did reach out and call to express her concerns, and I really appreciated that she was praying for us.

The old saying goes, “A friend in need is a friend indeed,” and I have found this adage to be true during the recent challenges and concerns we have had with Alex. Certainly, I knew we could count on our families to support us through this difficult time, but the outpouring of love from friends has been a welcome comfort. What has been interesting, though, has been the way that friends respond to us in different ways, offering encouragement and help. Through their examples, I can share ways for others to help families who are struggling with autism.

Several of my friends are wonderful listeners who allow me to think aloud, share my concerns, and support any of our decisions. Although my mom has been the primary shoulder I have cried upon the past few months, other friends have comforted me during teary times, as well. At other times, two of my male colleagues who are good friends have been especially helpful in empowering me to be strong, assuring me that I will be able to cope as they asked about Alex and patiently listened to my updates on his progress.

Other friends have admitted that they are hesitant to talk to me for fear they will break down and cry. I completely empathize with them because I am the same way. However, they have supported me through hugs, keeping my mind occupied by talking about other topics, and through their e-mails that say what they can’t tell me in person. Similarly, some friends have asked my mom how I’m doing and how things are going, knowing that she can give an honest assessment of the situation.

One of the most helpful gestures that family and friends have done has been to send e-mail notes. Often the notes are simply asking how we’re doing, letting us know that they’re thinking of us, and reminding us that we are in their prayers. Some have been especially good to check on us regularly through e-mail, and I appreciate this act of kindness.  Since Alex has been home, I don’t have a lot of time to talk on the phone, so the e-mails are a nice way to keep in contact with friends. I usually save the e-mails so that I can read them repeatedly as a reminder that we have people who love and support us. Others have sent very sweet cards and notes of encouragement, which I save to remind me how blessed I am to have friends who genuinely care. My friend K.C., who has been recovering from surgery and serious illness while chasing after two preschoolers and getting ready to move, sends me funny cards on a regular basis that always make me laugh, which I have really appreciated. That my friends take time out of their own busy lives to let me know they’re thinking of me has truly been a blessing.

Yet another act of kindness my friends have displayed has been in their offers of help. Some have let me know if there were anything they can do for us, they would be happy to do so. I know them well enough to know that these are not just words tossed off in a sense of obligation, but are genuine in their intent. I have no doubt that if I called these friends with a request, they would immediately be on my doorstep, ready to lend a hand. Others have made specific suggestions of tasks they would be glad to do for me. For example, my friend Debbie, who has faithfully checked in regularly to see how things are going, told me she would run errands for me, do my laundry, and/or sit with Alex. I know without a doubt that her offer is sincere because that’s the kind of thoughtful person she is.

As the autism rates climb rapidly, the likelihood of knowing a family who has a child with autism increases. I hope that by sharing the acts of kindness and generosity my family and friends have shown, others will know how they, too, can help these families dealing with the challenges autism brings. Then they, like those special people God has placed in my life, can bless others with their encouraging words and thoughtful gestures.

“When God’s people are in need, be ready to help them. Always be eager to practice hospitality.” Romans 12:13

Allies

At times, dealing with autism feels like fighting a war. As we try to gain ground, we are sometimes pushed back by the enemy or even forced to retreat. We think we are making progress, and then anxiety or sensory issues or some other aspect of autism takes us back and makes us feel our efforts have been futile. Recently, the reappearance of Alex’s anxiety attacks have made us feel that we have been living in a minefield, where we must tread carefully so as not to do anything that might set off his explosive behavior. During these difficult times, we need our allies most, even though it’s often tempting to shut out the world and try to deal with the problems on our own. Sometimes this self-imposed isolation occurs because we are embarrassed by our children’s behavior, even though they can’t help the way they are acting, and at other times we are so overwhelmed we don’t know how to reach out to others and explain our situations.

I must admit, I’m not good about asking for help. Part of my need for independence is pride and thinking that I can handle things on my own, and part of my unwillingness to seek assistance from others lies in my never wanting to be a burden to others. When people ask, “Is there anything I can do to help?” or say things such as, “If there’s anything I can do to help, let me know,” we often think they’re just being nice and don’t really mean it. However, I have been blessed with special people in my life who mean what they say, genuinely willing to help, so long as I am willing to take them up on their kind offers. I described some of these special people and how they have supported us in various ways in a previous blog entry, “Support,” which can be accessed by clicking here. They have set wonderful examples of how friends and family members can help parents of children who are dealing with autism, especially during the trying times when they need support most.

Thanks to the examples set by the allies in our life, I would like to offer the following suggestions for anyone who wants to help families dealing with autism.
1. Listen—Sometimes we just need to talk about our situation. Verbalizing our fears and frustrations makes them more manageable than leaving them racing around in our minds. We don’t expect you to understand everything we’re experiencing, but your sympathetic ear helps us deal with problems in a constructive way. I keep waiting for my mom to send me a bill for all the “therapy sessions” she does with me over the phone, allowing me to vent, brainstorm, and just talk about Alex and his issues.

2. Compliment—When things are going wrong, we often wonder if we are doing the right things. By reassuring us with kind words that we are good parents, you strengthen our confidence and boost our spirits. A friend told me this week, “Alex is so lucky to have you and Ed as parents,” which was what I needed to hear when we’ve been struggling to help him deal with his anxiety.

3. Write—Send parents of children with autism e-mails and notes from time to time to let them know that you’re thinking of them and that you care. We can’t always visit or talk on the phone because we’re dealing with the demands of our high-maintenance kids, but we can read your words when we have free time and savor the kindness behind them. I have saved thoughtful notes friends have sent at various times and will pull them out and re-read them when I need encouragement. One day this week when Alex was having an especially bad day (which, of course, also affects Ed and me), one of my close friends, who didn’t even know how frustrated I was at the time, sent me an e-mail to let me know she was thinking of me and hoping that Alex gets better for my sake as well as his. By touching base through writing, family and friends can help share concerns and offer support.

4. Pray—If you don’t know how to help, the best thing you can do is to pray. Pray for the parents to have strength, courage, patience, and wisdom so that they can help their children to overcome the obstacles of autism. Pray for the children to overcome their fears, sensitivities, health issues, and developmental delays. Pray for a cure for autism so that these children don’t have to suffer and their parents don’t have to struggle to help them. Let the parents know that you keep them in your prayers. Those who pray for us bless us with their thoughtfulness, reassure us that we’re not alone, and remind us that as we walk through the battlefield, God is always on our side. With our allies beside us, we walk toward the victory. As the Apostle Paul wrote in Romans 8:31, “If God is for us, who can ever be against us?”

“You and all your allies—a vast and awesome army—will roll down on them like a storm and cover the land like a cloud.” Ezekiel 38:9

Suggested Remarks

A few days ago Parents magazine posted an article on its website called “7 Things Not to Say to Parents of Kids with Special Needs.” This feature came from Ellen Seidman’s blog To the Max, where she writes about raising her son who has cerebral palsy. While she clearly states in this article her frustration with people who say awkward things to her about her child, I can summarize her suggestions into three basic areas. [Her article can be accessed by clicking HERE.] First, she does not want pity for her child or herself, and I can relate to her feelings on that matter. However, I think people sometimes confuse pity and sympathy, and others aren’t certain what to say to show that they care about the parent who is dealing with a special needs child. Another comment she thinks is improper is asking about what skills a child has mastered, for example, whether the child is walking yet. Again, I suspect that people are trying to express interest but don’t know how to show this in ways other than by making remarks that may be construed as judgmental or just plain nosy. Then in the next three items, she gives examples of remarks that focus upon the child’s appearance when people say that the child looks “cute,” “normal,” or happy. While she views these comments as negative, I value that someone is trying to find the positives in the situation and be complimentary, albeit in perhaps a less than articulate way. Finally, she lists the following remark as taboo: “You are a saint.” She asserts that she is just like any other mom, trying to help her child. The thing is, parents of special needs children do have different challenges than other parents, although not worthy of sainthood, but certainly buoyed by compliments that recognize the job we are doing in raising our children. When people have said kind things to me about my parenting, I appreciate their comments, which give me support and encouragement. Although I admire Ms. Seidman for expressing her feelings candidly about comments she finds hurtful, I realize that I see things slightly differently as a special needs parent than she does, maybe because I’ve been in this game of Chutes and Ladders longer than she has.

Even though I tend to be overly sensitive to people’s remarks, even to the point of being somewhat paranoid and assuming that people don’t like me unless they openly declare admiration and affection, I guess I try to assume that people have good intentions. Because I have been blessed with people who have shown thoughtfulness and concern for how autism has impacted us, I would take a different approach and suggest things to say that would be positive and reflect the support they are trying to show. My list of “What to Say to Parents of Kids with Special Needs” would include the following:

1. Focus on the positive with a genuine compliment for the child, such as, “He has a great smile.” or “He is so smart.” or “He’s really a great kid.” All of these examples were said to us about Alex, and as a mom, they filled me with pride.

2. Ask about the child’s interests and activities, just the way you would about any person you wanted to know better. For example, the questions “What is he interested in lately?” and“ What does he like to do?” treat the child as typical and allow the questioner to know more about the child’s personality.

3. Express support for the parents by commenting on their strengths. Parenting is often a thankless job, and parenting a special needs child adds extra responsibilities to that load. Comments like “You are wonderful with him.” and “You’re doing a great job.” lift parents’ spirits. I appreciate kind words and have been blessed by great friends and family who reassure me often. In other words, if you have something nice to say, I encourage you to say it.


This article regarding what not to say came as I have been mulling Alex’s schooling lately. This past week Ed and I have been in situations where we were asked questions about Alex and whether he was going to college now that he’s 19. When Ed was buying an anniversary card for me a couple of weeks ago, the clerk asked him how long we’d been married, how many kids we had, and how old they were. Even though his native New Yorker personality makes him bristle at personal questions from strangers, he’s been in the Midwest long enough to be nice about answering them anyway. He told the clerk we’ve been married 23 years and have a 19-year-old son. The clerk then asked where our son was going to college, and Ed told her that he’s not going to college, to which she replied, “Oh, he probably will eventually,” not knowing Alex has autism. Similarly, I saw an old friend who moved away several years ago but was back in town for a visit with family last week. Although she knows Alex has autism, she asked if he is going to college, commenting on how smart he is, and I told her no. In both of these situations, people were trying to be nice, so neither Ed nor I were offended by their questions but appreciated their interest. In contrast, I found numerous comments in response to the Parents online article reflected a needless hostility. Parents of special needs children resented questions and remarks from people who didn’t understand, and people who did not have special needs children accused the parents of being overly sensitive. What was intended to bring people together created a rift, which is sad. However, I do believe that most people are good at heart, and while people need to choose their words carefully, we also need to listen carefully to the true meaning behind those words. In talking about any child—special needs or not—I hope people focus upon the good, making their remarks truly remarkable.

“Some people make cutting remarks, but the words of the wise bring healing.” Proverbs 12:18

Finding Compassion

A few days ago, I had an interesting encounter when I stopped to get take-out sandwiches for dinner. While I was waiting in a booth until the order was ready, I noticed that residents of our local group home for disabled adults were enjoying dinner with their caretakers. I have always been impressed when I have seen the caretakers and residents out in the community because the residents always seem to be having a good time, and their caretakers treat them with kindness and respect. As I was sitting there, one of the caretakers brought a young woman by the hand past my booth. When the young woman saw me, she stopped and smiled, and I smiled back at her. Then she began to pat me on the shoulder gently, so I said hello to her. Her caretaker had a look of embarrassment, apologized to me, and tried to lead her away. I assured them that she was fine as she continued to pat my shoulder, and I explained to the caretaker that I understood because I have a son with autism. The caretaker seemed relieved that I was not being bothered or made uncomfortable, and she told me the woman’s name. When I said her name, she began to make cooing noises, apparently unable to speak, but conveying joy in her eyes, smile, and voice. Then her caretaker told her to shake my hand, which she did, and as she was leaving, we waved goodbye to one another. Despite her inability to speak, we were able to communicate with each other, and I hope that she sensed that I was pleased that she wanted to reach out to me.

Before Alex was diagnosed with autism, I don’t think I would have been as comfortable being around people with disabilities. While I always admired those who chose to work in special education, I didn’t feel that I had the patience or the understanding needed to help students with disabilities overcome the obstacles they faced. After living with Alex and his idiosyncrasies all these years, I have developed a comfort level and a compassion for people with special needs. Through Alex I have learned to see past the differences special needs bring and to search for ways to communicate on a level we both understand. The reward of being able to interact helps me overcome any sense of awkwardness or inadequacy on my part. Despite my natural shyness, I hope that I convey a sense of openness so that people like the young woman in Culver’s feel comfortable in approaching me. One of the students at my school who has autism eagerly engages me anytime he sees me in the halls. Even though he has never been in my classes, he treats me as an old friend, running over to talk to me. Typical of autism, he stands too close, talks too loudly, and never looks at me, but he seems to sense that I am as pleased to see him as he is to see me. One day while I was shopping at Walmart, he came running up to say hello, apparently excited to see me in a setting other than school. His mother seemed embarrassed by his assertive behavior, but I reassured her that he was fine, and I hoped that she knew I understood his behavior and her concerns, as well.

Raising Alex has helped me to develop empathy; those who have not had a family member with special needs, yet interact with ease and compassion, always impress me. In an earlier blog “Support,” I described how blessed I am to have friends who take a great deal of interest in Alex and show kindness to him through various gestures. Recently, I was once again reminded how fortunate I am to have these friends because they express their caring for Alex in ways that show they understand, even though they haven’t experienced life with a special needs child directly. For instance, my friend Crock, who asks about Alex regularly and always reaches out to him by asking me to tell Alex he said hi, brought me a pedometer to give Alex this week. He knows that Alex loves numbers and devices that calculate, so this was a perfect present, and once again he demonstrated how much he understands our situation. Similarly, my friend Danne, who has been seeing the same chiropractic internist Alex has, brought me a gift bag of healing with Epsom salts and baking soda for his baths, as recommended by the chiropractor, along with a pure facial cleanser for his face, which has been breaking out lately. As if this kind gesture for my son weren’t enough, she included a beautiful inspirational card to remind me she cares. Yet another reminder of concern for Alex came from my friend Jody, whose husband, like Alex, is a NASCAR fan. Last summer, after they went to the NASCAR Brickyard 400 race, she gave Alex her lanyard with the Brickyard 400 logo and the ticket with a diagram of the Indianapolis Motor Speedway. Since then, Alex has worn or carried around this lanyard, at times only taking it off to sleep, but making certain it was beside his bed so that he could put it on when he awoke. During his recent moodiness, one thing that would make him smile was looking at the lanyard, and I know that would make Jody smile, as well. Last weekend, her husband went to the Chicagoland Raceway, where he learned to drive a NASCAR car, and Jody asked him to keep an eye out for something to bring Alex. She told me that he called her from the track to tell her there really wasn’t anything for Alex, except that he could bring him back a real NASCAR race car tire. Knowing that I wouldn’t be thrilled for Alex to sleep with a tire, Jody wisely told him that probably wasn’t a good idea. Nonetheless, I was touched that both of them were thinking of Alex and trying to find something for him. To learn true understanding I had to raise a child with autism; therefore, when I find compassion from others who understand Alex without having raised a special needs child, I realize how blessed we are to have them in our lives.

“Light shines in the darkness for the godly. They are generous, compassionate, and righteous.” Psalm 112:4

On Happiness

Poet T.S. Eliot wrote in The Waste Land, “April is the cruellest [sic] month,” and Alex would probably agree with that sentiment. For some reason, April is always rough on him, and as a result, difficult for Ed and me, too. We’ve never figured out whether he is bothered by spring allergies, changes in weather, or something else, but every April, he acts agitated and more easily falls into meltdown mode. This past week, Alex has been irritable at times, complaining that he doesn’t like the computer game Monopoly Junior, which he hasn’t played regularly for about five years. As a sign of his volatile nature, a bottle of the prescription sedative Ativan has been sitting on the kitchen counter all week, ready if needed to keep him from becoming aggressive. A friend of mine who also has a child on the autism spectrum shared with me that this week has been challenging in their household, as well, and we wonder if something in the air is setting off our kids and affecting their behavior.

Whenever we have these setbacks, I have to fight feelings of sadness that old behaviors have returned, even if temporarily, and instead focus on positive thoughts to regain my happiness. To realign my thinking, I remember one of my favorite quotes from Pastor Joel Osteen: “Don’t let anyone steal your joy.” A friend who also likes this line added her own twist, telling me this week, “I’m holding onto my joy with BOTH hands.” Although most of my friends did not realize that we’ve been walking around on eggshells this week with Alex, their acts of kindness lifted my spirits more than they realize. For instance, one morning this week I found on my desk at work a wax paper bag from my favorite bakery with a delicious chocolate treat inside, a thoughtful gift from a friend who always seems to sense when I need the comfort of chocolate. Another day, one of my dearest friends who did know that I was feeling overwhelmed e-mailed me a loving and encouraging note of support, reminding me that I’m stronger than I think I am. The next day, I received a kind note from my cousin, who brought out my maternal pride as she described Alex as a “handsome, sweet young man.” In addition, Alex’s speech therapist many years ago contacted me via instant messaging on Facebook yesterday morning, telling me that she still has a sampler I embroidered for her when Alex worked with her. The cross-stitch picture includes a verse from Proverbs: “A good word doth the heart good.” I was pleased to hear that she still keeps this gift I made, which reminds her of Alex, on her piano, and she went on to say that she tries to live her life according to that saying. Of course, I was touched that she valued the gift so much after all these years. Yesterday offered another pleasant diversion, breakfast with two good friends, one who calms me and another who energizes me. Despite my worries over Alex, the week turned out well because unexpected blessings came from friends who brought me joy in the midst of uncertainty. I’m sure these acts of kindness were not random; God knew I needed the help of others to find my joy.

Of course, the greatest blessing of the week came when Alex’s anxiety seemed to lessen as the week went along. He, too, knows that happiness can be found in simple things. This week he started wearing the lanyard and ticket from the NASCAR Brickyard 400 race a friend of mine gave him last summer. As he put it around his neck and studied the layout of the Indianapolis Motor Speedway printed on the back of the ticket, an ear-to-ear grin spread across his face. Another item that brought him joy was my offering to make him cinnamon toast for breakfast this week. Since he seemed to have lost interest in eating other breakfast items he previously liked, I thought he might enjoy cinnamon toast on the Udi’s gluten-free bread I had bought. The mention of cinnamon toast sent him running to the kitchen table, no matter what he was doing, and he devoured every bit happily. Perhaps out of gratitude (or boredom), he’s been very willing to help me around the house this week. Since tendonitis in my right thumb makes certain jobs difficult, I’ve had Alex helping me with laundry, vacuuming, and mopping, all of which he did with a surprisingly cheerful attitude. While the kindness of my friends has brought me joy this week, nothing has given me greater happiness than seeing Alex smile and hearing him laugh. Essentially, when Alex is happy, Ed and I are happy. Fortunately, April is more than half over, and we hope that the April showers dampening Alex’s mood are nearly over so that we can all enjoy the flowers and sunshine we know are coming in the future. In the meantime, we look for happiness and feel thankful when we find it in simple pleasures.

“Give me happiness, O Lord, for I give myself to You.” Psalm 86:4

Hints

Last week in my blog entry, “Inquiry,” I described a recent experience in which a special education representative asked me some rather nosy questions. Instead of asking about Alex and how autism affects him, she seemed to be more curious about our parenting skills, inquiring about how we had taught Alex about sexuality, why we home schooled him, what we predict his future holds, and what we would do differently. Perhaps I have interpreted her actions unfairly, but I feel she was more interested in putting me on the spot than taking advantage of learning more about autism. To be fair, until we had Alex and learned more about autism, I probably wouldn’t have known what to discuss with a parent who had a child with autism. Autism can be the proverbial “elephant in the room” that some people may not be comfortable discussing, but avoiding the subject can be equally difficult. From our experience, people can talk about Alex and his autism in various ways that show interest and concern, and we have been blessed to have family and friends who have shown their support through their thoughtful comments and questions.

My favorite topic of conversation is Alex, so when people ask about him, I’m happy to talk about him. Even asking, “How’s Alex?” indicates a caring I always appreciate. Depending on my closeness to the person who asked and how Alex is actually doing at the time, my response may range from a cursory “Fine” to a more detailed update of his current status to a completely honest assessment of his recent moods and behaviors. The latter explanation is usually only given to very close family members and friends or my autism parent friends who understand the ups and downs of life with autism. Another question I always appreciate is, “What are Alex’s current interests?” or a similar question: “Does he still like ___?” Because Alex has unusual interests, these conversations are usually lively, and I’m pleased to share what topics he’s currently pursuing, especially to those who have followed his progress along the way. Moreover, I am grateful that these questions not only show an interest in Alex but also a concern for him as a person, not just a special needs child. In an earlier blog “Support,” I discussed how friends had given Alex various things that reflected their knowledge of his special interests. Not only do I appreciate such gestures of kindness, but I am always especially pleased to know that people care enough about him and me to do something nice. Last year, my cousin Diane was traveling around the Southern United States, and knowing Alex’s interest in geography and meteorology, she sent him postcards from her various destinations along the way and included the current weather conditions in her notes to him. Because he was so enthralled with those postcards, he has saved all of them for future reference. Similarly, after my friend and co-worker Jody attended the NASCAR Brickyard 400 at Indianapolis Motor Speedway last summer, she brought her lanyard and the tickets it held for Alex, knowing that he especially likes that particular race. Not only did Alex shudder when I brought it home for him (as he does when he is especially pleased), but he slept with the souvenir from the race, which he only does with his most prized possessions. I often think that Alex has a special sense about people who genuinely care about him and especially treasures what those people give him.

Aside from showing interest by asking general questions, I would suggest four basic hints for those who would like to show support for parents whose children have autism.
1. SHARE—If you hear about new autism research on the news or read an interesting article or book about autism, pass along this information. I always appreciate when someone tells me about something new they’ve heard or read. Often, my friends will preface this news with, “You’ve probably already heard about this, but…” While I try to keep up with all the latest autism research, I still am interested in any information others have seen or heard.
2. SYMPATHIZE—While I don’t need or want pity, I do appreciate understanding of my unusual situation. Many times I cannot commit to various tasks or engagements because Alex needs me. Moreover, at times we have to cancel plans suddenly because Alex’s behavior prevents us from taking him with us or makes us hesitant to leave him. Canceling at the last minute is always a possibility in the unpredictable life with a child with autism, and I am always grateful when others understand that some things can’t be helped.
3. SUPPRESS—While I’m certain some people offer advice trying to be helpful, unless you’ve raised a child with autism, you really don’t know all the ins and outs that may have gone into a parental decision. Many times, we choose our battles with Alex, and ignoring some behaviors may be necessary to prevent a full-scale meltdown. Even if you don’t agree with methods or therapies the parents are using with that child, you need to trust that they are doing what they believe is best for that child.
4. SPOTLIGHT—Although autism presents many obstacles, we try to focus upon Alex’s strengths and use those to overcome his weaknesses, and we are thankful to others who do the same. Certainly, his language, social and fine motor skills are delayed, but he is funny, smart, and obedient. While his handwriting is barely legible, he can type faster and more accurately than either Ed or me. When other people point out Alex’s good qualities, they endear themselves to us because they look past the weak areas and see his blessings and gifts. I know that Ed and I are thankful for the support we have been given, and I like to think that there are special places in heaven for those who have been understanding of children with autism, like Alex, and who have shown them kindness through their caring and concern.

“This is only my suggestion. It’s not meant to be an absolute rule.” I Corinthians 7:6