Shine

 

This week, I happened to run across a blog entry written by a woman who works with children who have autism, and her words made me reflect upon what makes Alex truly special. In her blog entry “Where Does Your Child’s Soul Shine?” Tali Bergman notes, “Sometimes in our desire to teach a child skills, we end up focusing on all the areas that are most challenging for that child, and what can begin to happen is that a child’s natural delight and enthusiasm in the world (i.e. his shiny soul) can begin to slip away or dim.” She goes on to comment, “But the truth is, it is this shiny soul that will drive all meaningful learning and growth for your child. It is this shiny soul that your child was meant to bring to this world.” Finally, she leaves the reader with an important question, also the title of her blog post: “Where does your child’s soul shine?”

As I reflected upon her words, I realized that so much of what I do as an autism mom is trying to fix what is broken. I try to make sure Alex gets all the proper therapies so that he can overcome the communication and social skill obstacles autism has put in his path. In addition, I constantly seek the best medical care for him so that he can be as healthy as possible and avoid any ailments that may cause him pain. In addition, Ed and I engage him in activities that keep his mind sharp and push him to engage in the outside world that can easily overwhelm him. Most of all, we never give up hope that Alex will get better, and we continually encourage him to make progress in both small and big ways.

For several years, we kept Alex mostly hidden away from the world, not because we were ashamed of him, but because we knew that taking him out places meant too many unpredictable stimuli that could upset him, and we didn’t want other people bothered by having to witness potential outbursts that could arise. We were protecting Alex from the world and the world from Alex. With the encouragement of Alex’s therapists, however, we have realized that he needs to be out and among other people so that he can learn to interact with others and to deal with various sensory issues appropriately. To help him, we have worked with his therapists to teach him social skills and coping skills so that he knows how to behave in public and how to calm himself when he becomes overwhelmed. To be honest, we have been pleasantly surprised how well Alex has handled a variety of situations that we feared would overwhelm and upset him. Instead, he finds joy. While we thought we were doing the right thing to keep him in situations that were safe and predictable, we now understand that he needs to be around other people. We focused our work on controlling his behaviors, but never trusted him enough to allow him freedom to practice the skills we were teaching. In a sense, we were keeping Alex’s light under a bushel.

For what I now understand is that what makes Alex’s soul shine, what he was meant to bring to this world, is his joy to share with others. When he orders his food in a restaurant, he is met with patience and kindness, even though he has some trouble telling what he wants. When we cue him to thank people who have done something nice for him, he is rewarded with warm acknowledgements. When Alex smiles, showing his delight in everything, other people see that irrepressible joy and smile back at him. One of the most delightful sounds I know is to hear one of Alex’s therapists laughing with him, knowing that he has amused them with some funny comment and brought them joy. Even better is to have them tell me how much they enjoy working with him, how they look forward to seeing him every week, or simply, as one told me last week, “He’s awesome!”

One of the often-cited characteristics of autism is the inability or unwillingness to share observations and experiences, which may be a communication and/or social skills issue. Recently, we have seen tremendous gains in this area with Alex, who frequently and gleefully comes running to tell us something he’s seen on television, something he’s read on the Internet or in a book, or something he just remembered. His enthusiasm is contagious as he excitedly shares this information, his face and voice expressing joy not only in finding that tidbit of news but also in knowing how happy we are that he wants to tell us. Instead of keeping things to himself, he wants to include others in his happiness.

While we don’t know what the future holds for Alex—although we pray that healing will allow more possibilities to arise for him—we feel assured that God knows what Alex’s purpose in life will be. In the meantime, we do know that what makes Alex shine is his joyful approach to life. Little things can make him happy, and he wants to share that joy with others. Frankly, I can’t think of a better purpose to have in life.

"Those who are wise will shine as bright as the sky, and those who lead many to righteousness will shine like the stars forever." Daniel 12:3

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

Like Pulling Teeth

 

A couple of weeks ago, we took Alex to his pediatric dentist who also sees adults with special needs for his regular six-month cleaning and check-up.  As I have mentioned in previous blog entries, Alex has always had good experiences at the dentist, and he eagerly looks forward to going, unlike most people. Moreover, he has been quite fortunate that he hasn’t needed any dental work other than to have two teeth filled under anesthesia last summer when he was twenty-one years old. Although we had thought this appointment would be uneventful, since his check-ups always are, we were wrong.

First of all, Alex looks forward to seeing his beloved hygienist Laura, who shows him great kindness and calls him “Sweetie” in her sultry deep voice that he likes. This time, another hygienist cleaned his teeth instead. Alex’s disappointment was obvious as he asked the new hygienist, “Where’s Laura?” I’m not certain why this change was made, as we saw Laura there that morning, but for some reason she didn’t work on Alex this time. After his teeth were cleaned, the new hygienist went over how Alex’s teeth are doing. Many times, the dentist comes and gives me a report about Alex’s teeth, but lately he seems to be unavailable for these consultations. While I appreciate the good job they have done taking care of Alex’s teeth the past several years, I don’t appreciate that he doesn’t take a few minutes to talk with me. In ways he reminds me of the character of the Wizard of Oz: “Nobody gets in to see the Wizard. Not nobody. Not no how.” Instead, the new hygienist had the task of breaking bad news, which wasn’t fair to her or me.

Since Alex has never had much problem with decay, I was stunned when she told me that his upper back molars needed to be extracted because they are “deteriorating.” I asked her if she meant his wisdom teeth or twelve-year molars, and she seemed a bit rattled by the question. Next I asked her if his wisdom teeth have erupted, which seemed to rattle her even more. She began flipping through his chart, looking for information, even though she had just examined Alex. Then she told me that it was his twelve-year molars that were deteriorating and needed to be removed and that his wisdom teeth had not erupted but were lying sideways. As if to smooth over the situation, she tried to reassure me that nothing needed to be done before we came back for his next check-up in six months. Since things didn’t seem that imminent, I asked her if those teeth could be saved by having them filled, and she flatly told me they were too far gone. Then she told me that if Alex were in a lot of pain or having trouble sleeping, we should call their office to get a referral to an oral surgeon to have them removed right away.

At that point, I was a bit overwhelmed thinking of how nasty Alex could be if he were in so much pain he couldn’t sleep. I simply thanked her, and we took Alex, who was in the waiting room with Ed and oblivious to this discussion, home. In the car, I thought of all the questions I should have asked her and felt frustrated that the dentist had not explained all the issues and had left a new staff person to go over a fairly serious matter. Once I got home and got my thoughts together, I called the office and asked to speak to her to try and address my unanswered questions. Yes, his upper twelve-year molars needed to be removed, but they most likely could wait at least six months. After she had a brief consultation with the “Great and Powerful Wizard of Oz,” the dentist, she said that if we wanted to be proactive, we could consult an oral surgeon and have the teeth removed before they caused him any pain. That sounded like a plan to me.

However, I was not comfortable taking Alex to an oral surgeon we’d never met before I knew more about what was wrong with his teeth. Consequently, I decided to take him to my dentist whom I like and trust. Fortunately, we were able to get an appointment right away, and Alex was enthusiastic about seeing a new dentist. Since Alex’s dentist never x-rays his teeth, I knew that having x-rays could be tricky because he would have to cooperate and sit still. However, the pleasant dental assistant was very good about explaining to Alex what he needed to do, and the panorama x-ray of his entire mouth went amazingly well because Alex did exactly as he was told. I think he found the rotating machine fascinating and liked that the process would take exactly sixteen—not fifteen or twenty—seconds.

After the x-ray was developed, my dentist carefully examined Alex’s teeth on the image and in his mouth. He also showed me in the dental mirror the decay on the back of Alex’s twelve-year molars that was cause for concern. He was quite understanding as he explained that keeping the back of his back molars clean was difficult and that by removing those teeth, we could take better care of the rest of his teeth. For that reason, he thought removing the bottom two back molars might be a good idea, as well. Additionally, he recommended removing Alex’s impacted wisdom teeth at the same time before they cause him any pain or problems. He explained that when his twelve-year molars are removed, that will allow easier access to the wisdom teeth to remove them, as well. He recommended all eight back teeth be removed under IV anesthesia for Alex’s comfort and felt that doing it all at once would be easier on him in the long run.

After addressing that concern, he checked all of the rest of Alex’s teeth and said that they are in good shape. He asked me if Alex brushed his own teeth, and I explained that his fine motor skill weakness makes it difficult for him to do his own oral hygiene. Therefore, I do most of the brushing of his teeth. He then told me that I “deserve a pat on the back” for the good job I’ve done in keeping his teeth clean and healthy. This was a nice recognition no dentist had given me before and made me feel better about the decay in Alex’s back teeth, which he reassured me was difficult to avoid. Although we aren’t thrilled that Alex needs to have eight teeth removed, we appreciated that we now understood why this would be best in the long run, thanks to my dentist’s gentle and compassionate explanation of how this will help Alex.

Also, he agreed with us that we shouldn’t wait until the teeth cause him problems and should proceed with getting them removed instead of waiting six months, as we had been told we could. He then gave us a referral to a local oral surgeon along with Alex’s x-rays and a written explanation of which teeth need extraction. When we got home, I scheduled an appointment with the recommended oral surgeon for a consultation, and we will wait to see what he says then. Since Alex did well last summer when he had teeth filled under anesthesia, we are hopeful that he will do well with having these teeth removed under anesthesia, but we are concerned about how he’ll react to the discomfort afterwards. Alex, on the other hand, has no worries and is looking forward to the process, seeing it as yet another adventure. I suspect he thinks he has a big payoff coming from the Tooth Fairy in the future. If that makes things easier for him, I’m sure she can fulfill his wish.

“Putting confidence in an unreliable person in times of trouble is like chewing with a broken tooth or walking on a lame foot.” Proverbs 25:19