Onward and Upward

 

This past week, we met with Alex’s support team for his quarterly meeting. Since he receives state disability services, these meetings are required every three months to monitor his progress, plan for the upcoming months, and discuss any concerns that have arisen since the last meeting. For these meetings, his case manager, behavioral therapist, music therapist, and a representative from the agency that provides respite care and day programs meet with us. Essentially, these meetings resemble annual case conferences for special needs students who have IEP’s.

Because Alex is an emancipated adult; that is, we have decided not to declare him legally incompetent at this time and are therefore not his legal guardians, his presence is required at the meetings. As his parents, Ed and I can advocate for him, but Alex ultimately can make decisions about his support program. Fortunately, he is quite content with his team of professionals and the work they are doing with him. Consequently, my main roles in these regular meetings is to play hostess since they meet in our home and to help Alex navigate the process, explaining what others are saying as needed and translating for him when his speech is difficult to understand. With several people in the room at the same time, he sometimes becomes confused as to whether a question is addressed to him or not. Sitting beside him, I often gently tap his leg to let him know that he is being questioned so that he realizes that he needs to provide an answer. At times, questions are directed to me, and I try to respond as clearly as possible to provide an accurate report of Alex’s current state.

To be honest, I felt a little disappointed right after the meeting concluded. Because Alex has made great progress in the past three months, adjusting amazingly well to his new computer class and making significant improvements in his behavior by showing more patience and flexibility as well as managing his anxiety through coping techniques, I anticipated that we would simply celebrate his achievements. While his therapists noted his improvements, they also focused on areas that still need improvement, namely his tendency to talk too softly, his need to be reminded to use manners by saying please and thank you, and his need to develop greater independence in daily living skills. While I value these skills, I’m delighted that he has overcome two huge hurdles that negatively impacted our lives and led to our getting services for him in the first place.

When Alex’s behavior plan was first written two and a half years ago, he desperately needed to improve three areas: physical aggression, property destruction/mishandling, and inappropriate social behaviors. Thanks to therapy, medication, and maturation, Alex has learned to handle his anxiety appropriately so that he doesn’t resort to aggression or throwing things for attention. This improvement has made our lives so much easier, not worrying that he might have an all-out meltdown. Also, his behavior improvements have permitted him to go more places in public because we don’t worry about him behaving badly. Essentially, our lives have changed so much for the better with the disappearance of the physical aggression and property destruction that we could be satisfied with just mastering those two areas.

However, we also know that Alex also needs to improve his social skills, which his behavior plan defines as not invading other people’s personal space, including not touching them or their belongings, covering his mouth when he coughs or sneezes, and not talking too quietly to be heard or not responding at all. Certainly, as he interacts with more people and goes out into the community more, these skills will serve him well. Yet, I thought after he learned to control his angry outbursts, we might enjoy a plateau period where we just rested a bit, grateful that our lives were finally peaceful. Instead, the meeting this week reminded me that we need to keep moving forward to help Alex fulfill his potential. Yes, he is much better than he was, but his therapists believe that he can continue to get even better and will push him to improve his social skills until he masters those, too. They reminded me that “good enough” is selling Alex short because he can be better than that.

As I reflected more on the meeting, I was able to get past focusing on the weaknesses they discussed and the work we still need to do as his support team and to hear why they believe he can overcome those issues that still linger. They describe him as “smart” and “capable”; they see beyond the typical autism behaviors of social impairment to what he can achieve. Also, I realize that when he masters all these goals, he will need new ones, and at some point, he may not need all the support he is currently receiving. As much as I’d like to rest on the peaceful plateau I imagined, I know that we need to keep moving onward and upward so that Alex can achieve what he is capable of doing.

Looking back, I can recall various tasks that seemed unending and perhaps even impossible. We wondered if Alex would ever become toilet trained, and eventually he did learn to go to the bathroom independently, which made our lives easier. We wondered if we would ever be able to have a conversation with him because his language skills were so weak, and now we can talk with him, despite some lingering speech issues, and find ourselves amused and amazed by what he tells us. We wondered if we would ever be able to take him out in public and trust that he would behave himself, and now we take him someplace nearly every day, not worried that he will misbehave and enjoy watching how happy it makes him to be out and about in the world. Consequently, I know now that Alex has great potential, and I need to be reminded that he can overcome these difficulties with time, patience, and support.

While I first thought his support team was not fully appreciating what Alex has accomplished recently, I can now recognize that they see him more objectively than I can. As his mother, I focus on what he has done, but his therapists are looking forward to what he can do. For years, Ed and I were unable to find professionals who could help Alex, and now we are blessed with a group who not only understand him as he is but also can envision what he can be with time and intervention. Working with them, we know that we will move onward and upward, not resting on what we’ve already accomplished, but knowing that Alex can, indeed, keep improving, master goals, and reach his full potential.

“Not that I have already obtained all this, or have already arrived at my goal, but I press on to take hold of that for which Christ Jesus took hold of me.” Philippians 3:12

Computer Class

 

As I have mentioned in previous blog entries, we have tried to enroll Alex in a good day program for adults with developmental disabilities for over two years because we wanted him to have the opportunity to socialize with peers. However, his past behaviors raised red flags for the day program we felt would be best for him, despite the improvements he has made over time with medication and behavioral therapy, and they placed him on a long waiting list. In the meantime, we filled his schedule with music and recreational therapy and two hours a week of activities with a caregiver who is about his age. Also, Ed and I have kept Alex busy by taking him to various stores, restaurants, concerts, and sporting events so that he could engage in typical activities. Thankfully, this waiting period gave Alex time to learn coping skills for his anxiety as well as appropriate social skills to use in public.

In December, the day program we had chosen finally had an opening, but we declined the offer. Even though we had thought this program was perfect for Alex, we no longer felt that it was right for him. For one thing, he would have to travel about a half hour each way to get there, and we didn’t think traveling for an hour every day was a good use of time for him. Also, the program had grown during the time we were waiting, and we were concerned that the number of clients and the increased size of the facility would overwhelm Alex. In addition, Alex’s behavioral therapist and case manager, who frequently visit this program to see other clients of theirs, agreed with our decision not to send him there because the program no longer seemed ideal for him.

Instead, Alex’s case manager had told us of a new, much smaller day program that opened last spring. Along with the smaller size, the program appealed to us because their location is less than five minutes away from our home. After touring the facility, we knew that Alex could thrive there; however, their director also had concerns about Alex’s past behaviors. Thanks to the intervention of his behavioral therapist and case manager, they were able to convince the program director to allow Alex to have a trial period to see how he would do in that setting and to prove that he has made significant progress in three years. Knowing Alex’s strengths, his case manager suggested that he could take a computer class there, and they agreed to enroll him for an hour once a week to start.

In January, Alex and I met with the young woman who would be working with Alex and teaching him computer skills. Alex’s behavioral therapist, who met with her to give a briefing on Alex’s strengths and weaknesses, and I were both impressed with her warmth and enthusiasm and felt she would work well with him. So as not to disturb Alex’s afternoon therapy schedule, we decided that he would go to the day program on Thursday mornings from 10:30-11:30, which meant that Ed would get him ready in the morning and bring him to the computer class each week since I’m at work at that time. Even though Alex would have to tape his beloved The Price Is Right episode and watch it later, he was eager to go to “computer school.”  After waiting for so long to get him into a day program, Ed and I hoped that Alex would behave himself so that he could continue and wouldn’t be asked to leave. Fortunately, he has done even better than we could have hoped.

The first week, his teacher assessed his computer skills, which seemed to be stronger than she thought, as he was able to do all the tasks she asked of him. She even had him create a flyer for their agency advertising an upcoming event, and he was able to type all the text correctly and with her guidance add clip art to illustrate the text. After he finished all the work, she allowed him to take a break, telling him that he could play computer games of his choice. However, he apparently did not want to take a break and preferred to work the entire time, so he simply sat there silently and waited for her to make other suggestions. I suspect that she didn’t realize how quickly he would be able to complete the work, and the next week, she had more planned for him to do.

The second week, an activity that could have thrown Alex for a loop thankfully did not. When he arrived, they were getting ready to have a fire drill. After his teacher explained what was going to happen and what Alex would need to do, he complied with her directions and didn’t seem fazed by the activity at all. After starting his session by standing out in the cold, Alex cooperated beautifully with his lesson on spreadsheets, and Ed said that his behavior was perfect. In addition, she introduced him to the other clients in the day program, three young men, one of whom commented about Alex, “He’s really tall.” At the end of the session, his teacher gave him homework in the form of charts he was to fill out regarding prices for his favorite stocks, and he happily and faithfully completed this assignment every day until his next class when he would enter this data on a spreadsheet he created.

The third week, another complication arose at the beginning of class when his teacher was late because she was working with another client. Nonetheless, Alex handled this disruption without incident, going ahead and starting to work on the computer, as she told him to do while he was waiting. Again, Ed noted that Alex’s behavior could not have been better, even when his teacher was flustered because she could not get the computer printer to work and had to make some adjustments to what she had planned. Alex easily accepted the changes to what she had planned. Moreover, he really liked the homework she gave him for the next week—tracking the daily weather data for the following week.

Last week, once again Alex calmly adapted to complications as he and Ed had to drive in a blizzard to get to computer class. As he had in previous sessions, Alex cooperated and completed his tasks exceptionally well. Along with his spreadsheet activities, he showed his knowledge of Spanish, math, and parts of speech as he completed some computer drills on these subject areas, and his teacher seemed impressed with his skills. Because it was the day before Valentine’s Day, the other two instructors gave Alex valentines, and one had prepared a treat bag filled with gluten-free snacks that Alex could have on his restricted diet, which was especially thoughtful. Also, the other instructor commented that she always looks forward to Thursdays because she gets to see Alex. Echoing her kind sentiments, Alex’s instructor told me in an email last week that he is doing very well and that he is “such a pleasure to work with.” As parents we couldn’t be prouder of him, and we know that he is exactly where he is meant to be in this smaller program where he has been able to shine and to endear himself to the staff who see the good in him.

Although we hope that eventually Alex will be included in more activities at the day program, we are delighted that he has adapted nicely in such a short time and pray that he continues to do well. One night as he and I were talking about his computer class, he enthusiastically told me how much he liked the class. Then he earnestly asked me if he could still be a meteorologist or an astronomer, the dream jobs he has talked about since he was a little boy. I think he put those dreams on hold for a while, and the success he is having now with his computer class has reminded him of what he would like to do someday. While I don’t know what the future holds for Alex, I pray that he will have opportunities like this computer class to develop his skills and learn from people who bring out the best in him, and perhaps one day he can be the scientist he aspires to be. As long as he finds joy and fulfillment in whatever he does, we will be grateful, knowing how far he has come.

“See, the former things have taken place, and new things I declare; before they spring into being I announce them to you. Sing to the Lord a new song, His praise from the ends of the earth…” Isaiah 42:9-10

I Don't Know What Causes Autism

 

This week, Huffington Post featured a heartfelt blog entry written by autism mom Carrie Cariello entitled “I Know What Causes Autism.” [To read this essay, please click here.] With all the uproar regarding the recent outbreaks of measles at Disneyland and a Chicago area day care center, this essay has garnered quite a bit of attention because she addresses the controversy of vaccines and autism. To summarize, after she lists several potential causes of autism proposed over the years, she dismisses all of them “for now,” proclaiming that her son’s autism is genetic: “So, for now, I’m going to believe that Jack’s autism is because of DNA and RNA and heredity.” Furthermore, she asserts, “He’s exactly the way he’s supposed to be.” As she explains, “If I start running around declaring autism an epidemic and screeching about how we need to find out where it’s coming from and who started it and how to cure it, well, that sort of contradicts the whole message of acceptance and tolerance and open-mindedness.” Although I appreciate her candor in explaining her opinion regarding the cause of autism, I must respectfully disagree.

Maybe it’s because I’ve been an autism mom more than twice as long as she has.

Maybe it’s because we have watched Alex struggle with puberty and hormonal changes, something she probably hasn’t yet experienced with her son.

Maybe it’s because I’ve had more time to research and compare notes with other parents whose lives parallel ours.

Maybe it’s because we’ve run tests that have diagnosed mercury and aluminum poisoning and know that both of those toxic metals exist in vaccinations.

Maybe it’s because I know that you can love the child unconditionally but hate the disability passionately yet still be accepting and tolerant.

Maybe its because I don’t believe that Alex is exactly the way he’s supposed to be. I believe that autism has robbed him of things typical people his age enjoy, and I intend to do everything in my power to make sure he will not always be denied those opportunities.

On Friday, the discussion of the measles outbreaks arose among a group of my colleagues. One sympathetic friend noted how awful it was for those tiny babies to have the measles and how miserable they must be. I thought of how awful it is for children with autism who, unlike the vast majority of children with measles, don’t get better after a few days. Our oldest and wisest colleague noted that he had been immunized against both measles and mumps, but still got both diseases as an adult and questioned the effectiveness of vaccines. The youngest colleague, who is cocksure about everything, claimed that he had read “all twelve of the case studies,” and was certain that vaccines don’t cause autism. Although I was torn between wanting to slug him or to enlighten him on the autism research I’ve been doing for twenty years, I decided that either would be a waste of time and energy because he had already made up his mind, and I left the room.

Immediately following me was my colleague/close friend/confidante who knows my story well and who knew that I had left without a word after deciding that “Discretion is the better part of valor.” As the mother of two small children, she has struggled with the issues of vaccine safety herself, wondering and worrying if she is doing the right thing, and I have supported her decisions, just as she has supported mine. For the record, Alex received all of his childhood immunizations on time according to the CDC schedule because at that time little was known about possible links between autism and vaccines and because I believed that was the right thing to do at the time. Although I don’t know for certain that vaccines caused autism in Alex, I certainly believe they were a contributing factor for him. Consequently, I understand the dilemma parents face in deciding whether or not to vaccinate their children.

As my beloved friend and I discussed the issues of immunization rationally and respectfully, we came to the same conclusion that as mothers we want what’s best for our children and pray that we make the right decisions. As she wisely pointed out, we will love our children no matter what problems we face. However, we know that life is hard, and we don’t want our children’s lives to be harder than they need to be. Therein lies the crux of my drive to find out what causes autism and why I can’t be satisfied until I know the answer: I don’t want life to be harder than necessary for Alex.

If we can find the cause of autism, then maybe we can find effective treatments and potential cures. I want people to be as outraged about the autism epidemic as they clearly are about the measles epidemic so that they will work harder and faster to help those affected by autism. Moreover, I don’t believe that this is how God intended Alex to be; I believe that Alex is meant to be healthy and to live an abundant life. Accepting what is instead of seeking what can be feels wrong to me, and I have hope that Alex will overcome autism one day. Until then, I’ll keep searching for the cause of autism so that Alex and others like him can be healed and so that other families don’t have to worry that their children will face the struggles those children with autism have endured. Unlike fellow autism mom Carrie Cariello, I don’t know what causes autism, and that frustrating uncertainty mightily motivates me to keep looking for an answer.

“Lead me by Your truth and teach me, for You are the God who saves me. All day long I put my hope in You.” Psalm 25:5

Autism Connections

 

Somehow we just know. Maybe it’s the lack of eye contact, the toe walking, or the hand flapping, or even more likely the way the parent helps the child navigate a public place, but those of us whose families have been touched by autism recognize each other almost immediately. Knowing that staring is hurtful, we watch surreptitiously to confirm our suspicions that they, like us, belong to the autism club none of us ever wanted to join. If our understanding gaze is met, we smile and try to convey that we empathize. Often, we do not speak—like our children with autism, we’re not sure what to say in the situation. Somehow just knowing that we’re not alone comforts us and reassures us that others are dealing with lives similar to our own.

Other times, the signs are more obvious, and we can connect beyond the knowing look and sympathetic smile. For example, last summer when Alex went for his routine blood tests, which he thankfully finds fascinating and handles amazingly well, the lab technician interacted with him with such ease and compassion that I suspected she had some first-hand knowledge of autism. As I noticed an autism awareness ribbon on her identification lanyard, she told me to ask for her specifically whenever Alex needed blood draws and explained that she, too, was the mother of a child with autism. Quickly, we compared notes, discovered several similarities between our children, and felt a sense of relief to talk with another parent who understood raising a child with autism.

Similarly, when we took Alex a few months ago to a new doctor for a check up, I was pleased to observe that the nurse knew how to engage him and make him feel comfortable. While she spoke to him sweetly, she never treated him like a child, nor did she act patronizing to him because of his disability. Once again, I noticed that she was wearing an autism awareness pin on her identification lanyard, and I asked her about her interest in autism. She explained that another nurse in the office has a son with autism and gave all of the nurses autism awareness pins to wear, which I thought was a great idea. Not only could this autism mom and her co-workers promote autism awareness, but also by wearing the pins, they immediately identified themselves as supportive to any families dealing with autism. All of those nurses with their autism awareness pins demonstrated that their office was a safe place where parents knew their children with autism would be welcomed and understood.

Other times, we dance around the details before we figure out our common link of autism. A few months ago, I was talking with my doctor’s nurse who was checking my blood pressure, and I commented that my blood pressure was amazingly good, despite the stress of teaching middle school kids and raising a “high-maintenance” son. Like typical mothers, we chatted briefly about our sons before discovering that both of our boys are on the autism spectrum. As in other similar situations, I felt relief to find someone who truly understands my situation as an autism mom and wanted to share as much information as possible within a short period of time. Now that she and I know that bond we share, we will smile knowingly at each other, cognizant of how our lives parallel.

Last night, we took Alex to Target as a reward for a good week in which he was cooperative with all of his therapists and us. Happily looking around at various items in the store, he was delighted to find a special 80^th anniversary edition of Monopoly, his favorite board game. He was even more delighted when I reminded him that he had Target gift cards his aunts and uncles had given him for Christmas that he could use if he wanted to buy the game. Immediately, he decided that he wanted to spend his gift card on that special edition game and cradled the box in his arms as he carried it to the checkout counter. As Alex stood patiently waiting to check out, smiling because he found the special game, I noticed the cashier watching him. Unlike the mean girls in Burger King who stared and snickered at him last week, this young woman had a kind way about her. Of course, Alex was oblivious to her because he was just happy to be getting the game he wanted. She asked him, “Is this game for you?” and he just smiled. She then told him that he hoped he liked it, and I prompted him to thank her, which he did quietly.

After she placed the game in a bag and handed it to Alex, he and Ed moved out of the line and waited by the door for me to pay. Hesitantly the cashier said to me, “I miss my old job and the special needs kids I worked with.” I knew she recognized Alex’s autism and wanted to let me know that she understood him. Addressing the elephant in the room, I told her that he has autism, which confirmed what she probably suspected, and she told me that her sister has autism. Once again, members of the autism family club had found each other, and we nodded knowingly. She asked me about his functioning level, and I explained that he is verbal, even though he doesn’t talk a lot, and he’s toilet-trained, so we are fortunate. Then she confided something that made me know why she wanted to engage me in conversation.

“I’m worried that my ten-month-old baby girl has autism.” She explained that because her sister has autism and because she has seen signs in her daughter, such as hand flapping, she has concerns. Listening sympathetically, I nodded and hoped that her suspicions are wrong. She told me that she would keep watching her baby and if the signs continued, she would have her evaluated for autism. Trying to reassure her as the line of customers behind me reminded me I had little time, I told her that I was sure she was doing the right things. I also told her that I hoped her suspicions were wrong and that her baby would be all right, but I also reminded her that because of having a sister with autism and working with special needs kids, she would know what to do, and her daughter would be fine. While I hoped I had said the right things to reassure her, her eyes filled with tears as she smiled and thanked me.

Once again I realized that Alex has an important role in life as an ambassador for autism. People recognize his weakness in the disability, but they also see the strength in his joy and the progress he has made. Because of him, we have connected with wonderfully compassionate people who understand what we have faced because they have dealt with similar issues. Although I wish that none of us had to endure the difficulties autism presents, I’m thankful for the support we families can give each other as we wait for our children to be healed.

“And this hope will not lead to disappointment. For we know how dearly God loves us, because He has given us the Holy Spirit to fill our hearts with His love.” Romans 5:5