Sunday, August 20, 2017

More Than a Mom

After thirty-three years of teaching middle school English, I officially retired last Tuesday. One of the perks of being retired is being able to have breakfast every week with a wonderful group of other retired teachers from my school. As one of the group arrived late, he explained that he had to drive his grandkids to school because his daughter and son-in-law had to be at work early, and he offered to chauffeur their children. He remarked that no one prepares us for how parenthood really is. Noting that television portrays retired people as being in their golden years and enjoying freedom, he commented that in real life children continue to need their parents’ help, and our responsibilities as parents never really end.

Sitting next to one of my closest friends who like me has an adult child with disabilities, we shared a knowing smile. While all parents have ongoing concerns about their children, even when they are adults, our children require our care in ways most people never consider. Since our sons cannot drive, we must take them anyplace they need to go. Moreover, we manage their finances, appointment schedules, medications, and nutritional needs––to name but a few of our responsibilities––and we are their primary advocates who speak up for them. Despite all the tasks we still must do for our sons and our concerns for their futures, she and I agree that our sons bless our lives immeasurably.

As Alex’s mom, I have taken on roles I never imagined I would need to do before we realized he had autism. In addition to the typical mom roles of teacher, nurse, cook, chauffeur, housekeeper, and assorted others, I have also become an amateur pharmacist, psychologist, speech therapist, occupational therapist, barber, and most importantly, his advocate. My job is to make him the best person he can be, and I take my responsibilities quite seriously.  Because I know him so well and love him so much, I know how important communicating clearly with the professionals who work with him is so that they, too, can help him reach his potential. Furthermore, I am grateful to have the support of others working with Alex, bringing out the best in him, and I want to do anything to make their jobs easier.

Because of my belief in the need for parents to assist those who work with their children, I found a blog article I read the other day rather surprising. Entitled “I Just Want to Be My Son’s Mom, Not His Private IEP Case Manager,” the anonymous author describes herself as the mother of a teenage son who has “significant issues with social skills.” [To read this article, please click here.] In the article she describes an incident in which her son’s teacher emailed her regarding an outburst her son had in class. She quotes a statement from the email that frustrated her terribly: “We’d like you to come in to discuss your son’s behaviors and hear your ideas for how we might best help him.” Apparently, after years of advocating for her son, this was the last straw, as far as she was concerned.

In response to the school’s request for a meeting, she describes her reaction: “I felt like I was being asked to be his case manager, teacher, social skills coach, and professional consultant.” Further, she states, “This wasn’t a job I asked for…But I didn’t want it any more.” She complains that she doesn’t “get to have fun” with her son or “spend quality time watching dumb TV shows when I’m busy troubleshooting problems that come up.” Therefore, she makes a decision: “So when I went to meet with them about the latest incident, I quit.” Consequently, she tells the staff at her son’s school that they would have to solve the problems without her help because she’s just going to be his mother.

Perhaps her son’s school has been less than helpful over the years, leading to her decision to turn things over to them instead of being a more active participant in her son’s education. Nonetheless, the email the school sent seems to be reaching out in an effort to collaborate in helping her son, recognizing that she knows him best. She may not have wanted the job of teaching her son’s teachers how to help him, but it’s in his best interest (and, therefore, hers) to educate them how to educate him. She states that she would continue to be his advocate, but part of being an advocate is providing strategies to others to bring out the best in a child.

Maybe she will reconsider the consequences of her decision. Certainly, all parents feel overwhelmed occasionally, and being the parent of a special needs child brings caregiver fatigue that can make one want to quit at times. However, our kids, even our adult kids, need us to be resilient and tenacious. During those moments when we wonder how we can accomplish all we’re expected to do, we need to pray for strength and patience and peace. With God’s grace, we can find the resources and energy needed to continue our most important task in life: helping our children live their best lives.

“So let’s not get tired of doing what is good. At just the right time we will reap a harvest of blessing if we don’t give up.” Galatians 6:9

Sunday, August 13, 2017

Meltdowns Vs. Shutdowns

Although many people are aware of meltdowns in autism, the concept of shutdowns in autism may be less known. In a meltdown situation, the child with autism experiences sensory overload and may become emotionally distraught. While this behavior may look like a temper tantrum, the child is not trying to exert control and get his or her way; the child is out of control and feeling overwhelmed. Similarly, in a shutdown, the person with autism is in a stressful situation and responds with behavior that may be misinterpreted. While some may think the child is simply avoiding an unpleasant or difficult task, the shutdown behavior is actually a physical response to certain triggers.

Until yesterday, when I read a fascinating online article entitled “Shutdowns and Stress in Autism,” I was not aware of this behavior commonly found in adults and children with high functioning autism. However, after reading this study by Ingrid M. Loos Miller and Hendricus G. Loos, I realized that Alex exhibits shutdown behaviors at times. [To read this article, please click here. Thanks to the Facebook page “Regarding Caroline” for sharing this article.]

Describing a case study of a young girl with autism who was exhibiting shutdown behaviors at school, the authors note that her behaviors followed a predictable pattern triggered by social stress when she was expected to perform difficult tasks. She would first look away, then rub her eyes, keep her eyes closed, and then become limp, and finally would fall asleep for ten minutes to two hours. The article also lists more than thirty behaviors in Appendix 3 associated with shutdowns, including staring, yawning, asking to rest, and refusing to comply with verbal requests, all of which I have seen Alex do sometimes when he had to do something he found difficult.

The authors note that settings for these shutdown behaviors include school, play dates, meeting strangers, and conversations with adults that asked the child to recall recent events and to describe what happened and what the child liked. Specifically, the authors observe, “…the most stressful events are those in which the child is expected to ‘perform’ using language.” While these stressful situations may cause shutdown behaviors, the authors note that “stress instability” may also cause meltdowns, such as sensory overload or aggressive outbursts.

Because of the difficulties with eye contact, social skills, and language, children with autism may have social phobia, the authors suggest. When an adult pressures a child with autism to respond verbally to a difficult question, the child exhibits an abnormal physical response to stress. As the stress hormones rise, the child shuts down, allowing the body to recover. As the authors explain, sustained high levels of stress hormones can damage the brain, impairing verbal memory, social function, and sensory processing, and causing language deficits. In addition, rhythmic motion, such as rocking, may be needed for calming. All of these issues are associated with autism, perhaps because stress hormones have impacted the brain negatively.

While children with autism are often encouraged to work through their stress, this method is not helpful, according to the authors. These children often remember other stressful events in their lives, and a vicious cycle occurs. Instead, the authors recommend low stress approaches. For example, adults may need to be more flexible in dealing with a child who is experiencing stress. To help control social pressures, adults should help the child focus on the positive, give the child more time to respond, and allow the child to work alone. Social stories may also be effective in dealing with stress. The child may also need to take breaks to stretch, to take deep breaths, or to rest. In addition, breaking down tasks into smaller parts may be easier and less stressful for the child.

In Appendix 2 of the article, the authors have collected information from adults with autism regarding shutdown behavior. For instance, these adults describe feelings associated with a shutdown: “suddenly very sleepy,” “confused,” “like a panic attack,” and other similar details expressing their physical reactions to overwhelming stress. Further, they note that being told to “get over it” or having to continue in the stressful situation makes it worse. Instead, they need quiet time alone to relax––anywhere from a few minutes to over an hour, depending on the severity of the stress.

Perhaps the most critical point the authors make in this article hinges on what a person with autism needs to cope with stress. First, the person must recognize the signs of stress, such as suddenly feeling fatigued. Next, the person must learn strategies to help reduce stress, including taking a break and being alone. This ability to “self-manage,” the authors assert, is a “pivotal skill” needed in life.

What I found most interesting in this article is gaining understanding why Alex sometimes suddenly becomes very tired during conversations. Clearly, he is in shutdown mode. The strategies his therapists have taught him for coping with anxiety mirror those suggested in this article. As he has matured, he often prefers to be alone to deal with stress, and with an opportunity to go to another room and be quiet, he quickly recovers and can rejoin the conversation.

Hopefully, this information regarding shutdown behaviors will become more widely known to parents, therapists, and teachers who work with children and adults who have autism. By understanding situations that trigger shutdowns, the physical reactions, and ways to help people with autism cope with stress, those who work with and care about children and adults with autism can teach them tools to deal with things that overwhelm them, allowing them to manage stress and to experience life to the fullest.

“Joyful is the person who finds wisdom, the one who gains understanding.” Proverbs 3:13

Sunday, August 6, 2017

A Filled and Fulfilling Week

Last week was a busy one filled with appointments for Alex, yet thankfully everything went quite well. On Monday, his behavioral therapist had switched his usual Tuesday appointment because she was going out of town the next day and wanted to see him before she left. Even though Alex is not fond of having his regular schedule changed, he adapted nicely and had a good session with her. In addition, she and I discussed his behavior plan in depth, noting the progress he has made in the five years he’s been in behavioral therapy and specifically the four years she has been working with him. As we talked about how the frequency, intensity, and duration of anxiety attacks have decreased over time, both of us were pleased to note how well Alex handles anxiety now, using the coping strategies he has learned in therapy. Not only are we pleased that Alex is less anxious and can deal with upset much better, but we’re also thankful that he has such a devoted and caring behavioral therapist who celebrates his successes along with us.

That same afternoon, Alex had his regular six-month appointment at the dentist to have his teeth cleaned and checked. Unlike many people who dread going to the dentist, Alex actually looks forward to his visits. Fortunately, he had a very good pediatric dentist when he was little who made going to the dentist a good experience, and he continues to have a positive outlook as an adult. A few years ago, we started taking Alex to our family dentist and have been pleased with how well he has adapted. His dental hygienist is especially sweet and patient, and she brings out the best in him by explaining everything she is going to do and praising him for being cooperative. As the dentist checked his teeth, we were pleased that Alex has no cavities and would not need to come back until his next regular check-up in six months. As a nice surprise, the other dentist in the practice who sees Alex more often and who has filled cavities in his teeth made a special point to come say hello to Alex and see how he was doing. Not only are we pleased that Alex likes going to the dentist and received a good report, but we’re also thankful that the warm and friendly staff take such wonderful care of him.

On Wednesday morning, Alex had an appointment to see the nurse practitioner who oversees his anxiety medications. Although we were supposed to see her in June, a schedule mix-up caused him to become anxious, and we had to reschedule. Although I was concerned that Alex may not be happy about getting up early to see her, the appointment was the first one of the morning, which meant we didn’t have to wait. Despite being somewhat sleepy, Alex was good natured, especially when he saw that she had a scale in her office and was happy to be able to weigh himself. Although most people dread weighing themselves at the doctor’s office, for Alex, this is the highlight of the appointment. As we discussed how Alex was doing on the medications, he was patient and calm. Because he is doing well, she plans to take him off one medication completely, and she doesn’t need to see him for another six months. Not only are we pleased that Alex handled this early morning appointment well, but we’re also thankful that he is making such good progress that he doesn’t need as much medication to keep him calm.

On Wednesday afternoon, Alex’s peer companion came to “hang out” (as she calls their sessions) with him for the last time this summer before she returns to her full-time job as a special education aide. Even though he was disappointed that he won’t see her for a while, they enjoyed their afternoon together watching a movie. As we discussed possible plans for her to spend some weekend evenings with Alex in the future, he seemed happy that he won’t have to wait until next summer to see her. After he said goodbye to her and headed off to his room, she told me, “I just love your son!” Not only are we pleased that Alex dealt well with knowing he will miss seeing his friend for a while, but we’re also thankful that we found such a kind and caring young lady to spend time with him.

On Thursday, he met with his music therapist for their regular weekly session. Because Alex has been sick with thrush a good part of the summer, he hasn’t always been his best during music sessions. At times he has been fatigued, and other times he hasn’t wanted to sing, probably because his mouth hurt from the thrush. However, this week, he had a terrific session in which he was focused and engaged. At one point his therapist came to ask me if Alex could have a drink; he was delighted that Alex nicely asked him instead of running to ask me. Alex was also enthusiastic about watching music videos on his therapist’s phone prior to singing the songs, and his therapist thinks he’s stumbled on a good way to preview the songs. Since I could actually hear Alex singing in another room, I think he’s right. Not only are we pleased that Alex continues to make progress in music therapy, but we’re also thankful that his music therapist brings out the best in him and celebrates even seemingly small steps forward, knowing that they lead to larger leaps.

While we were a bit concerned how Alex would handle a week packed with appointments, this week turned out much better than we anticipated. He fully cooperated with all the various people who worked with him, and their praise and encouragement made him want to do his best. Consequently, not only are we are thankful to God for the progress Alex continues to make, but also for the outstanding professionals we have been blessed to work with, helping him to be healthy and happy.

“The Lord has done great things for us, and we are filled with joy.” Psalm 126:3