There are certain phone calls you never forget. Those are the calls that elicit such an emotional response that the memory is forever fresh in your mind. You are able to distinctly recall where you were, what you were looking at, and even the sounds and smells in the room. I have received three such phone calls from Cameron’s phone. The first one was the summer when Cameron was 15 and he went on his bike to explore the National Mall while I was at work. A nasty storm blew in, and I repeatedly tried calling Cameron to check on his whereabouts. When my phone finally rang, I was relieved to see Cameron’s number on the screen, and answered, “Hi Cam!”
The reply was, “Actually, this is Officer Smith with the US Park Police.”
I was awash with panic before I was able to process that Cameron was fine, but had been caught in the storm and the police were evacuating the Mall. They wanted to make sure someone knew where Cameron was.
The second call I will never forget happened last summer at the precise time Cameron always called to say he was leaving work. Again, “Hi Cam!”
… and “Mrs. van der Poel, this is Ms. Johnson. Cameron has been [assaulted] at work by another employee.”
I shared this event in my “Eyes Wide Open" column, but the memory of that experience is as fresh as if it happened yesterday.
Speaking of yesterday, this brings me to the third phone call from Cameron I’m sure to never forget. An hour before deadline for this column, I was sitting at my PC trying to think of something new to share. I was wishing for a compelling topic beyond my current obsession with trying to find a postsecondary program for Cameron. I took a break, and decided to push the deadline. My phone rang at exactly Cameron’s start time for work. I’m so used to these phone calls, I often don’t answer, and (most of the time) I later listen to the voicemail that Cameron has arrived safely. Because my phone was in my hand when it rang, I answered as soon as it started to ring. “Hi Cam!”
“Mom, I’ve been in a bit of an accident.”
Cameron was riding his bike on the sidewalk of a busy street, and came to an intersection. Cars from the busy street were turning left into the side street, and cars from the side street were turning right onto the busy street. There’s no light at this intersection so it is a bit tricky at rush hour. There was a line of cars on the side street, and the first car in line had pulled through the crosswalk. Cameron started to cross behind the first car, but the second car in line began to move forward as the first car moved forward. Cameron was caught between the two cars. The driver of the second car said he never saw Cameron.
This happened less than a mile from home, and my husband jumped in the car as soon as Cameron gave us the location. I kept talking to Cameron and could tell he was rattled, but not terribly injured. To keep him focused and distract him from his growing anxiety, I told him to call work and let them know what happened, and to call me when his stepdad arrived. Cameron called me back within three minutes.
The entire time this was happening, my inner demons were reminding me of Cameron’s driver readiness screening I wrote about in my last column. When the driving instructor asked me if Cameron could safely to cross the road alone, I was shocked and incredulous. But as the reality of this incident began to settle, I couldn’t help but ask if we had just been lucky that a much more serious accident hadn’t happened sooner. Was Cameron really not capable of processing everything that one needs to process in order to navigate traffic? Of course, I didn’t want to blame Cameron for the accident, but I needed to know if he was safe.
Cameron rode to the hospital in an ambulance. I arrived at the ER, and the first point of contact for the hospital was with someone filling out paperwork at her desk. I said, “Excuse me. My son was hit by a car and brought by ambulance. How can I find him?”
She gestured to the man at her desk and said, “This is the patient. You’ll have to wait.”
I stood there for 45 seconds and said, “I’m sorry, but can I go back to the nurses’ station and ask for my son?”
She turned to the triage nurse and (clearly annoyed) asked her to help me, and the triage nurse muttered that a lot of people had been brought by ambulance, as if Cameron would be difficult to find. Luckily, that was the beginning and end of poor treatment. When I finally found Cameron, he was being triaged by another nurse, in a private room, and the nurse was very compassionate. The nurse asked about existing medical conditions, raising his eyebrows as he offered, “Autism?” It probably shouldn’t make me happy that people immediately label Cameron as having autism, but in this case I felt somewhat relieved.
Cameron was doing a self-assessment of his injuries to his left foot and right leg. He predicted that he would need surgery or they would have to “cut these things off.” The nurse and I assured him that nothing would need to be cut off. Later, while we were waiting in the hall for X-ray, I started to think that what Cameron was referring to being cut off might be the bandages he had received in the ambulance. Surely he didn’t think his injuries warranted amputation! So I asked him if he meant the bandages, and he said no, he meant his leg and his foot. I asked why he thought they would need to be cut off, and he said because they might be broken. I explained that when bones are broken, they heal. There’s no cutting off of arms and legs. To which Cameron said, “So I guess it’s just a crazy idea of mine that they’ll cut off my hand if these warts don’t go away.”
The X-rays showed a small break on the top of his left foot. His left leg and knee were badly bruised and swollen, but nothing time won’t heal. Cameron apologized for forcing me to miss the movie my husband and I were going to see. He was worried that I had wasted my money by pre-purchasing the tickets. I assured him that I had gotten a refund. Cameron lamented that he had “ruined everything” because he had volunteered for a pet adoption event that he would now not be able to attend. I assured him that it was not his fault and that everyone understands that accidents happen and plans must change.
The police officers that responded to the accident also came to the ER. They inquired after Cameron’s well-being and gave me a card with a case number. I couldn’t stop myself from asking them if they felt Cameron was at fault in the accident. From what I’ve been able to gather, the driver of the second car was looking left to turn right, and apparently never considered the crosswalk in his actions. Cameron admitted that he was worried about being on time, so in his effort to hurry, he probably opted for speed over caution. I can see this accident happening to anyone—both from the driver perspective and the bike rider. This could have happened to anyone, regardless of the neurological processing abilities. But it didn’t happen to just anyone. It happened to my son. And as much as I’d like to be able to, I’ll never be able to see the world from his eyes and truly understand what he understands … and what he doesn’t understand. But I just can’t see myself clipping his wings in the interest of protecting him. I guess instead of managing Cameron’s every move, I’ll have to devote my energy to managing this knot in the pit of my stomach. And by the way, I don’t think I’ll find myself wishing for compelling column topics ever again.
First published on October 18, 2011.
Bat lollipops, gummy eyeballs, sticky popcorn—Halloween is that most delicious of holidays when the candy and treats are flowing freely. But what if you are one of the thousands of teenagers and adults on the autism spectrum following a special diet?
In preparation for the holiday, I decided to taste test various products with a few discriminating friends and family to see which items pass muster. I have divided the products into two loosely defined categories: Crunchy and Sweet.
Please note: If you are following a special diet, you need to check ingredients carefully and consult manufacturers before trying something new to make sure any product described here meets your dietary needs. Ingredients and manufacturing practices change frequently and labels can be confusing.
Hands-down, the number one gluten-free pretzel is the Bachman Gluten Free Puzzle Pretzel. This pretzel is shaped like the autism-awareness puzzle piece symbol. Taste testers liked the superior crunch. According to one tester, this gluten-free pretzel “does not crumble the way some gluten-free snacks do.” An added bonus is that the Bachman gluten-free pretzel is manufactured in a dedicated gluten-free and casein-free factory, but the product does come in contact with sesame seeds. By way of full disclosure, I had no idea while testing this product that Bachman donates 5% of sales of these puzzle pretzels to Autism Speaks.
For those of you allergic to or avoiding corn, I discovered a tasty substitute for popcorn. Mini Pops are made out of sorghum. According to the company, sorghum is more nutritious anyway, with fewer calories and more protein and fiber. Mini Pops really do feel like popcorn in your mouth and in your hands. My testers only sampled the Subatomic Sea Salt flavor and the raves were unanimous. Some flavors contain milk or milk products, but the manufacturing facility is dedicated gluten-free, organic, and kosher.
I discovered during this review process that a number of companies make excellent candies and other treats that are suitable for a variety of diets. Everything tested was delicious—so first prize can’t go to one single company. Instead, I narrowed in on a few treats from several companies.
If you are just looking for treats to pass around at a party or to hand out to trick-or-treaters, all my testers said YummyEarth lollipops are the best. And while my testers acknowledged that they enjoyed the allergen-free gummy bears, gummy worms, and jelly beans from several companies, most voted for Surf Sweets when asked to pick only one brand. As my neighbor explained, “Surf Sweets are sweet and fruity, but not too sweet, and definitely fruity.” Some Surf Sweet products are listed as vegetarian and not vegan because they contain Confectioner’s Glaze, which is derived from an insect—but all products are gluten-free, casein-free, and dye-free.
One other item that caught my eye: organic licorice laces by Candy Tree. These long strings of black licorice are dye-free, organic, and the ingredients are gluten-free. (Please check with the company if you require items manufactured in dedicated gluten-free facilities.) With a bit of innovation, you can tie and twist these laces into cob webs, bats, and witch hats. Imagine—allergen-free edible Halloween decorations! Now that takes the (gluten-free) cake!
A Few More Tips
Of course, you can find many other products that are suitable for special diets. Potato chips and corn chips, for example, are usually gluten-free and casein-free, and you can find these at any supermarket. A number of popular food manufacturers make candies and treats that are also free of allergens. But be careful. I tried a few types of gluten-free, casein-free chocolates only to discover that these items contain artificial flavors and artificial colors. Manufacturers are pretty good these days about disclosing ingredients and manufacturing processes if you call them up on the phone. You can also find a plethora of information on the web, but you should always verify Internet data.
Sometimes treats made in dedicated factories with carefully selected and monitored ingredients cost a lot of money. But often you can get free shipping if you order products from distributors online. Also stores like Whole Foods will usually give you a case discount on items the store carries. Talk to an accountant to determine if food products purchased in order to comply with a medically-required diet can be deducted from your yearly taxes as a health expense.
Luckily, for those of you following a special diet or interested in trying one, finding yummy, nutritious, and safe options is much easier today than it was even a few years ago.
Best wishes for a spooky and deliciously allergen-free Halloween!
I never thought I would be so happy to hear my child argue with me. I know that sounds odd, and if many parents were to hear me say that they would be looking at me like I may have come from Mars. But they don’t understand what it is like to have raised a child who could not express his likes and dislikes, emotions, physical pain and discomfort, personal opinions and individuality in general through the use of speech. It can be a trying road to travel.
But finally at the age of 27 Cody is making huge strides in overcoming his language barriers.
Last Friday night one of my sisters became gravely ill and had to be taken to the emergency room. It was clear that she had respiratory issues of some sort but tests had to be performed to determine what those issues were. After a CAT Scan was done doctors told her that she had a large mass in the base of her right lung that could quite possibly be lung cancer.
When I learned of the news I told Bill I was going to the hospital to see my sister. He really didn’t want me driving alone so he decided that he and Cody would drop me off at the hospital while they went and did a bit of grocery shopping.
Cody had already showered, was quite comfy in his pajamas and had plans to snuggle under his favorite blanket and watch some TV. When Bill told him to get dressed and that we were all going into the city, he had no trouble verbally expressing his displeasure about the idea.
Cody: “Well I’ll just stay home!”
Bill: “No, you need to go with us.”
Cody: “We’ll just stay home!”
Bill: “No we have to go into town.”
Cody: “I’ll just stay home and stay in my pajamas!”
Bill: (Smirking) “Cody, get dressed and get your shoes on.”
Cody: “I’ll just stay home and watch TV on the sofa.”
Bill: “Do you want to stay home by yourself? Nana will be here but she will be asleep and you’ll be all alone.”
Me: (Trying not to laugh.) “Ok. The argument is over. Let’s go get dressed now.”
Disgruntled, he complied.
We had never heard him be so verbally argumentative in such an appropriate way. There was no guesswork involved in ascertaining what he wanted.
While my sister is still in the hospital, doctors no longer believe she has cancer, but a complicated pneumonia which is much more easily treated, thank God!
It was only a couple of days later when I saw Cody’s new-found assertiveness in action once again.
Sunday, we went to the store to buy a get well gift for my sister. While we were there Cody saw a sweatshirt with a picture of a semi-truck on the front. He made a bee-line over to it and shouted, “That’s a semi-truck shirt!” He made this exclamation several times. He kept looking at me and then back to the shirt as if to say, “Mom! Do you see this?” Numerous times he held it up and ran his hand over the graphic. I sort of just stood and watched in awe for a moment. Finally, I asked, “Cody would you like to have that shirt?” Immediately with no hesitation in his voice he answered, “Yes!” Of course, I bought it for him.
His excitement was undeniably evident in his tone of voice. His actions were clearly demonstrative of his enchantment with this item. His facial expression was one of longing and not the flat affect we were used to seeing. And his verbalization was distinct and concise.
It is such a blessing to see this kind of self-expression coming from Cody. This kind of decisiveness and this kind of assertiveness is an indication to me that those kinds of verbal and non-verbal communication processes are present with him and he is now learning to articulate them in a concise and well-defined way which can be easily identified and understood by others. So don’t be surprised if you see me smiling while my child is arguing with me. I’m just happy to know my son is finally able to make his voice heard.
“Supersibling” is a term made popular by Karen Olsson in a 2007 New York Times feature which refers to siblings of individuals with autism who are particularly responsible and mature for their age. Supersiblings are often perfectionistic high-achievers, deeply devoted to their families and their siblings' care.
1. Your life experiences frequently call to mind these lines of dialogue from the movie "Juno":
Dad: “Hey … where you been?”
Juno: “Oh, just out dealing with things way beyond my maturity level.”
2. You are kind and compassionate, a fierce advocate for people on the margins. You may be too scared to speak up at times, but you are always loyal to the underdog.
3. You have this solemn rule buried deep within you from early childhood onward: Thou shalt not, under any circumstances, add to your parents' troubles and difficulties. And if thou doest, thou shalt at least feel very, very guilty for doing so.
As adult sibling Graham Seaton says in a 2004 New York Times article, "[As a child], I was so aware I couldn't make a big deal with my family … My parents already had enough on their hands." Likewise, in another 2004 New York Times feature, author Jane Ross notes, “Even when parents give them explicit permission to vent about an autistic sibling, many children choose silence, experts say, one of many ways they may try to protect their overburdened parents.”
4. The sole exception to the aforementioned no-venting, no-making-a-big-deal rule comes when you're under such stress that your (ordinarily strong) sense of self-control snaps. In such cases, you may be astonished to find yourself smashing a guitar, screaming at a stranger, or running away from home.
5. You have a tendency to take responsibility for other people's feelings. If something goes wrong, it's your fault. If something goes well, you take a moment to feel relieved, and then you start preparing for the next thing that could go wrong. You pray the Serenity Prayer because you are prone to forgetting what, exactly, you can and cannot change.
6. You are attuned to your sibling, able to read his or her expressions and moods. Often, adults rely on you to “translate” your sibling's vocalizations. For example, my brother Willie is obsessed with giving incorrect answers, even when he knows the correct response. Several times a day, he'll call out to our parents, “Is the capital of Spain Barcelona?” or, “Is two minus one four?”
The appropriate response to these questions is a gentle, playful one, something like: “Barcelona? I thought it was Istanbul!” or, “Two minus one is … ten?” This gives Willie the chance to deliver a punchline, saying, “Oh, no, I mean Madrid!” or, “No, it's one!” Such exchanges may be confusing to non-family, especially as Willie can become agitated if his questions aren't answered, or if the answer isn't what he expects.
7. You try to predict the future, because you often end up worrying when you sense the presence of overwhelming possibilities before you. For example, you probably know the estimated genetic odds—numbers, percentages, the whole bit—that your children (or your children's children) might be on the spectrum. You think to yourself: So, the odds that my kids would have autism are high … and the odds that I'll be the one caring for my brother/sister on the spectrum in the future are also high. What do I do? What's the right choice? What if I don't have kids and then end up regretting it, or what if I do have them and end up in some kind of untenable situation of constant caregiving?
At times you feel caught between having a “life of your own” and contemplating a life of caring for your sibling. Eventually, though, you realize that these categories are moot. A life of your own means caring for your sibling in some way, and caring for your sibling in the best and truest way also means having a life of your own.
I think it's only fair to report that I didn't have all the facts when I filed my last column about the shoplifting incident involving Reilly's friends. While it was true that he hadn't stolen anything, he was aware and complicit during the event. This came to light a couple of days later in a meeting between Reilly and school staff. The decision was made to suspend Reilly for a week, along with the kids who had been caught with stolen goods.
Reilly had planned to fly home for the long Columbus Day weekend. The suspension meant I had to change his plane ticket to move his flight up from Friday to Tuesday. While I was happy to have him home for more than the original three days, I was, of course, disappointed in him. And he was disappointed in himself.
When I texted him with the new flight details, he responded, "It sucks that I have to come home by suspension, but it will help me learn not to do anything bad anymore." He wanted to know if our weekend plans would still go ahead. A good high school buddy was to come for the weekend, partly to watch the big Cowboys versus Redskins game with Reilly. I decided I would go ahead with the plan—I didn't want to punish his friend, who was terribly excited to spend the weekend with us.
I got some of the details about the incident from Reilly's school counselor, who had talked the police officer out of arresting the kids. She was quite upset about the whole thing, and disappointed in Reilly, who she thinks is a great guy. I thanked her profusely for saving his bacon, though whether he would have been arrested with the other kids is unclear. I imagine she told the officer that the students all had disabilities and that the school would punish them.
For his part, Reilly had no explanation for his or his friends' very poor judgment. He said he knew what they were doing was wrong; he didn't know why he didn't say so. Another friend who is part of Reilly's group wasn't with them and had warned them that shoplifting was wrong. Why didn't they listen? Reilly had no explanation.
One of the students who was involved was not suspended. Reilly said he didn't think she had told the truth. We asked how he felt about that and whether he had reported that to the staff. He said he didn't think it was fair, yet he didn't tell on the student. But the fact that she wasn't punished didn't matter; it didn't excuse what he had done. I found that insightful and encouraging.
He seems to "get it" now. But of course, his dad and I are worried about all the possible ways his judgment could fail him in the future. Young people on the autism spectrum have trouble making generalizations, taking a lesson learned and applying it in a different situation. And Reilly holds on to a sort of magical thinking that is common in younger children. When I remind him to buckle his seat belt, he says, "Oh Mom, we aren't going to get in accident." When I ask him how he knows that, he tells me it is because we haven't been in an accident yet. So because something bad hasn't happened yet, it never will? I think that's a common belief system among teens, but at some point most kids start to understand the potential consequences for their actions or inaction. Don't they? Or am I attributing something completely normal to Reilly's disability again? As usual, I have no idea.
And it raises the bigger worry about young people with ASD living and interacting in a world that might not be so forgiving of their stupid mistakes or failures in judgment and reasoning. NYIT staff won't always be there to save them from themselves. And neither will Mom and Dad. I made him promise me that if he is in another situation where friends are using poor judgment he will call his brother or sister for advice. And take that advice. They've done their share of stupid things. Maybe he can learn from their mistakes, too.
I've heard it said before that aging out of free and appropriate public education is a lot like getting an initial diagnosis of autism all over again. When your son or daughter with autism leaves the protection of the school system, there's an abyss before you. And yes, it's a very similar feeling to when you received the first professional evaluation that officially says "something is wrong." There’s a lot of hand wringing and desperate need to take action without knowing what action to take. It feels almost as if someone has dumped a bucket of ice water over your head. (But definitely not in the celebratory, “We just became World Champions and we’re going to Disney World!” sort of way.)
As if facing life for Cameron after high school hasn’t been stressful enough, I’ve recently had a fresh bucket of ice water dumped on me. Cameron’s instructor from this summer’s driver education course recommended he participate in a driver readiness screening before we schedule any behind-the-wheel lessons. Based on his behavior in the classroom, she had concerns about Cameron’s ability to handle everything he would need to process while driving. I had been giving Cameron driving lessons in a parking lot, and while I knew it would be a long process to get him to a competent driving level, I had no doubts that he would eventually get there. Realizing that the instructor had only known Cameron for a very short time, and that the classroom setting is very different from being behind the wheel, I felt confident that the screening process would be a mere formality. Boy was I wrong! When I sat down with the instructor for her review of the screening, I had emotions bubbling up that brought back the distinct 14-year-old memory of being told the amount of supports Cameron needed in an academic setting, and that the short bus would be coming for him to take him to special needs Pre-K.
There’s nothing quite like having someone tell you your son isn’t capable of doing something you’re convinced he can do.
I received a six-page report as a result of the screening assessment. There were several areas of skill that were assessed, and the report contained many occurrences of phrases such as: “Cameron has poor skills in this area,” “Cameron was not able to …,” and “Cameron became anxious …” By the end of the review session, the instructor asked me if I felt Cameron was safe as a pedestrian crossing the street without assistance (!). Cameron and I left the meeting and I doubted nearly every instinct I had ever had when it comes to his upbringing. Were my visions regarding Cameron’s capabilities and reality truly that far apart? How will this effect Cameron’s self-confidence? Has this led him to doubt his abilities as well? The most proud I have ever seen Cameron was when he passed his learner’s permit exam. I think we both convinced ourselves that the written exam would be the most difficult step in his obtaining a license. Now we’re faced with the very real possibility that Cameron may never drive.
Not to worry. I haven’t lost all hope. But that dousing of ice water certainly has my attention.
Right now at my job at Autism Speaks I’ve been looking for personal “Why I Walk” stories during our Walk Now for Autism Speaks events. Each year, there are over 100 of these walks that happen around the United States and Canada. This Sunday marks the seventh anniversary of my walking for the Autism Speaks North Central Walk in Cranford New Jersey.
I started walking as a college freshman because I was in desperate need of community service hours. What I thought was going to end up being a one-day thing then turned into a much bigger commitment. I realized it was a way to help people with autism such as myself and to become an active part of the autism community involved in making changes for our population.
I began to think about my participation in the walks this way because of the people I met that first day. There were just so many families and individuals who shared similar stories to mine. That’s when I started seeing the impact that could be made by simply getting involved. Since that day I’ve constantly seen the walks evolve just as I have matured as an adult. When I was a Resident Assistant during my sophomore year, the walk was one of the first events I encouraged the students in my dorm to participate in. When I was a junior, the walk was a service event I went to with my fraternity. In my senior year, the walk was a fellowship for a club I started in college called Student Disability Awareness. Then for two years in graduate school, the walk was something I participated in to be close to my new walk family along with my fraternity brothers. Along the way, this one walk led to building community and friendships in another two walks in New Jersey.
The walks have been something that has led to one of the biggest and greatest communities I could ever ask for in my life. All of those people I walked with over the past six years became like family to me. Now as I get ready for Sunday—this will be my second year getting to speak at the walk as well—I consider myself blessed to have had the opportunity to become involved in the first place. I look forward to walking every year and I can catch up with “my family” once again.
All right, fellow autism siblings, time to take a poll: How many of you know whether or not your parents have up-to-date wills, or whether or not your sibling has a special needs trust? If you have no idea, you're not alone; in fact, you're probably in the majority. According to a 2008 “Living with Autism” study conducted by Easter Seals, just 38 percent of parents who have children with an ASD have created a will, and just 17percent have created a special needs trust. In the past, I've written about the need for siblings to stand in these gaps; in fact, I created a month-to-month calendar for sibs outlining autism awareness tasks. Even so, I hesitated to talk with my own parents about estate planning. Though our parents have set up guardianship for my brother, I knew that there was more to be done. Certain important steps—such as updating wills and creating a special needs trust—had yet to be taken. I wanted to see a solid plan in place for the future, but I wasn't sure how to help our parents get moving.
Siblings may be reluctant to take the lead for several reasons. First, they may feel uncomfortable bringing up frightening possibilities, such as the loss of their parents. Next, they may feel awkward being the one to raise the topic, thinking that their parents should be the ones to do so. Finally, they may feel unsure of what action steps to request, and how to effectively follow up with their parents. I'm certainly not immune to these feelings. Fortunately, though, I have life experience on my side. As a former program director for a special needs support organization, I've helped families through the estate planning and special needs trust processes in the past. I knew firsthand how liberating it could be, the peace of mind it could afford.
Fortunately, when my family vacationed together last month, my mom brought up the subject. “Honey, we need help,” she sighed. “We have all that information you helped compile about the trust, but we still haven't set an appointment with the lawyer. We really need to do it, we just haven't followed through … we need help.”
A small part of me was incredulous. My parents are organized, efficient people, so why hadn't they picked up the phone and set an appointment? Yet a wiser part understood perfectly. The special needs planning process is easy to put off; it's important, but it doesn't feel urgent. So special needs caregivers procrastinate. What with doctor's visits, medications, therapies, and daily work, there's so much to be done as it is; who wants to add another item to their to-do list? Plus, it's scary for parents and caregivers to walk into a lawyer's office and sign documents that spell out what happens in a worst-case scenario.
“Okay,” I said to my mom. “I hear you. It is really important, but don't worry. We'll think of something.”
Throughout the vacation, I wondered: Aside from actually making the call myself, how can I support our parents in getting this done? How can I hold them accountable to what they know needs to happen? On the last day of our trip, I figured it out. As we were leaving, I told my parents, “I heard you when you asked for help with setting up the appointment with the lawyer. And I've been trying to figure out a way to provide accountability, because it's really important for all of us to have these documents in place. So, how about this as a boundary: No phone calls between us until you set the meeting with the lawyer.”
I employed this strategy because my parents had asked me to help, and because we have a good relationship. We keep in touch on a regular basis, and we enjoy talking on the phone. Temporarily pulling the plug on something we all valued would motivate them more than nagging. And sure enough, an appointment is now on their calendar. Now, we're all breathing easier.
A good work ethic is unquestionably one of the many important virtues that have been instilled in me by my parents. A gift I received as a boy was William J. Bennett’s “The Book of Virtues.” It has a large portion devoted to the benefits of developing healthy work habits, and I have enjoyed reading these passages again and again. I placed a similar importance on the repeated reference in one of my middle school history textbooks regarding having a good “work ethic” which, to me, seemed to be responsible for a lot of tremendously important accomplishments and institutions throughout history. I believe that as I have gotten older and have really started to understand what my parents have taught me, I have incorporated the value of good, regular work into my moral DNA and it has colored a lot of how I see life around me now. I also believe my autism has helped me to remain dedicated to this work philosophy because I can easily remain focused on an idea that either interests me or is important to me. As I have watched my parents work on different projects in the last few weeks, I have again reflected on how much a good work ethic is important to my future and success.
I traveled to Pennsylvania with my father to help him at his job as a sales representative last week. I have helped him in this capacity numerous times, and during the week my father and I visited some of his customers. My father’s main responsibility was helping the store set up their systems. I primarily worked on the minute details such as applying labels and putting the vast quantity of products supplied to each store into their proper places. The tasks I performed were a bit monotonous in nature and could have potentially become very boring if approached with the wrong mindset. I remained dedicated to my objectives regardless, and even if things did feel a bit slow at times, there were also some nice perks. For instance, I enjoyed the short walks from one store to a nearby warehouse to pick up supplies for the next step in the job, and I had an engaging conversation about childhood memories with some warehouse workers at another stop. Those little moments made the long hours of work fly by and were simply wonderful to me. Also, seeing my father work so hard at the tasks at hand and finishing the job no matter how long it took reminded me that I must also put the same time and effort into my own work to become successful at what I choose to do.
My mother is also working on a unique project as I write this column. For the past several weeks, she has been preparing a presentation on AIT (Auditory Integration Training) and Therapeutic Listening for an upcoming meeting of our local special education PTA (SEPTSA). She has been doing extensive research online and over the telephone speaking to various program providers, gathering a vast amount of information on the programs, and organizing it all into a cohesive presentation. Seeing her work so hard and put so much time and effort into this presentation has been very inspirational to me.
I, myself, have been hard at work in the last few months doing writing projects in the hopes of having them published. Two essays I wrote were not chosen for publication, but I did receive an honorable mention for one of them. This will not stop me from continuing my writing career.
The level of dedication my parents have for their endeavors is the same type of passion I want to give to everything I do. Anything less than my all would not lead to the type of results I expect from any work I engage in. To me, work is more than a virtue; it is the way to lead a more productive and fulfilling life.
I get the news moments before my 21-year-old son Mickey gets home. The biopsy is back: Our 14-year-old cat Fudge has lymphoma.
I still manage to greet Mickey cheerfully when he walks through the door. But he knows me too well. “Do you have sad news for me? Is Fudge dead?”
So much for the myth that people with autism have no empathy.
We try a course of chemo. She responds better than we expect. But late one Sunday night, Fudge suddenly pees on the carpet. She has never done this. She staggers, and looks spacey. Something is very, very wrong. When I pick her up, she is limp.
“Is Fudge dying?” Mickey asks.
“No,” I lie, trying to shield him. “She’s feeling sick. The vet will try to make her better.” Inwardly I cringe; what if I’m wrong? But she may yet pull through. Why alarm him until we must? We call the animal specialty hospital. I place a soft towel in her carrier, and carefully tuck her in. Marc drives her to the pet emergency room, and waits while they run blood work. The vet determines that her kidney values are elevated, and that she is dehydrated and anemic. They admit her to the ICU.
We try to coax Mickey to join us when we visit Fudge the next day, but he’s having none of it, so we leave him with a sitter. As we get out of the car, Marc tells me, “I signed a DNR last night.”
“I guess I should have asked you,” he says.
“Yes, you should have.”
“Would you really want her intubated, or shocked with paddles?”
I shudder. “No.”
How do you visit a pet in the hospital? Are you supposed to show up with flowers? A box of fish-flavored treats? As we enter the facility my heart starts hammering. They take us into the overly bright ICU, and I am assaulted by the sound of so many dogs barking. Fudge is frightened by loud noises; couldn’t they keep the cats in a quieter room? I see technicians in green scrubs. Steel examining tables. Floor-to-ceiling metal cages; Fudge crouches in one of them, connected to a beeping monitor. She looks diminished. Forlorn. Or is she drugged? Her eyes are dilated. “You can’t touch her without gloves,” the tech warns, pointing to a sign. Fudge sniffs my gloved hand but looks away. Please, open the cage so I can hold her, I want to say. I can’t even reach my fingers far enough through the bars to touch her. I will myself not to cry.
“I’m so glad we didn’t bring Mickey,” Marc says. “This would really have freaked him out.” He’s right. It freaks me out. Mickey would have been terrified.
We bring Fudge home the next day. “Hi, honey,” Mickey says, petting her head. Fudge is a bedraggled version of herself. We set up a makeshift IV pole to administer bags of fluids. We give her injections. Pills. Supplements. Fudge is quiet. She sleeps most of the time and eats little. But she still purrs. I wonder: is she signaling contentment, or trying to soothe herself?
Not an hour goes by that Mickey doesn’t ask, “Is she going to die? Is she still dying? Is she weak? Is she still young? Just a little young? Will she come back when she dies? I want her to come back. Why can’t she come back? When Fudge dies you have to put her in a box in the back yard.”
“Is that where you think we should bury her?” I ask, thinking that might give all of us some measure of comfort.
“NO!” he says. “Don’t bury her.”
His questions exhaust me. I can’t explain the finality of death. I barely understand it myself.
I watch as he squats on the floor beside Fudge. He croons, “How are you, my pretty girl?” After a while, he looks up and says, "Fudge needs her blessings."
I’m unsure what he means, but I take her in my arms. She is so emaciated that I can feel the fragile architecture of her rib cage.
You think you will have a pet forever. You bathe her. Groom her. Feed her treats. Nurse her through surgery. You buy her fishing pole toys and feather ticklers and little bouncy balls with bells in them. You do these things for her, even when she hawks up hairballs on your best rug. You do them because of her sweet squeaks and trills, and the way she always—always—answers to her name by trilling right back. You do them because of the way she snuggles against your hip whenever you sit on the couch. You do them because every night she sleeps on Mickey’s pillow or the foot of Jonathan’s bed, lulling them to sleep with the sound of her motorized purr, and because she has the most gentle disposition in a cat you’ve ever seen. You do all these things because she is family.
And then you have to let her go.
What we didn’t realize, when we first fell in love with that delicious caramel and chocolate colored kitten, was that someday we would have to make hard decisions. Fudge has given all of us joy for nearly 15 years. But we know that soon there will come an awful day, after months of suffering, when she will let us know that it is time to go. Marc and I will stay with her in those final moments, just as we did with our two other cats, cradling and whispering and stroking her, until her heart stops beating. We will walk out of that vet’s office without her.
And then we will have to tell Mickey and Jonathan that our pet is gone.
There is no “good” way to lose your pet. There isn't. But here’s the thing I return to again and again. Just as it is with people, either we choose to engage, to love, knowing that every relationship is time-limited ... or we choose never to love at all.
Knowing this from the beginning doesn’t make it hurt any less at the end.
This is the story of Goldilocks and the Three Postsecondary Programs for Students with ASD.
Once upon a time, Goldilocks went looking for a postsecondary program for her son with ASD. She merely wanted a program that would aid her son's progress in achieving long term goals. The first program she looked at didn't provide enough support. The next program she saw provided too much support. And the third program was just right. And Goldilocks and her son lived happily ever after.
Nice story, right? Unfortunately, I'm beginning to think the happily ever after, "just right" program exists only in fairy tales. I'm smart enough to realize that I am not going to find everything on Cameron's postsecondary checklist in one program. But the compromises I am faced with based on what I've seen so far, make me wonder if I'll ever find anything "right enough."
In order to keep myself focused, I've drafted a document with Cameron's long term goals. I've done this document in the style of IEP goals. I've saved myself the burden of making the goals measurable, as in "five out of six times, Cameron will ..." I've just tried to form an outline of what's important in this phase of Cameron's education.
My goals are in the basic categories of academics, socialization, and employment. According to statistics, basic employability skills require ninth grade level in reading, writing, and math skills. To many this may seem like a meager academic goal, but it's probably the one I struggle with the most in seeking Cameron's postsecondary placement. It seems that programs catering to Cameron's academic level focus more on basic independent living skills that Cameron has already mastered. And programs that focus less on independent living skills don't provide the social structure Cameron so badly needs. It's a vicious cycle, with nothing coming close to "just right."
Cameron needs structure, but he also needs to hone his abilities in forming his own structure. Cameron needs help socially, but will someone structuring his day and providing daily social events teach him social independence? Or will he return to his isolating ways as soon as he exits the program? And what about the fact that Cameron has been in a "special" school for the vast majority of his education? Will putting him in a program without opportunity for inclusion benefit him when it comes time for the real world?
I've been researching postsecondary programs for the better part of three years now. The good news is there are more programs emerging with each passing year. The bad news is, the newer the program, the harder it is to assess outcomes. This postsecondary phase for Cameron is crucial in moving him forward in life. It's not just a parking space for a few years, only to then be faced with another "What now?" scenario. The step after the postsecondary step is real life. Yes, it's out there in the not-so-distant future, just waiting for Cameron. Ready or not. Will it be a happily-ever-after future? It will all depend on the finding "right enough" program.
I have learned a valuable lesson during the last few days. If I really you really want to know how well adapted your child is or isn’t then step completely out of the way and keep tabs from afar.
This past weekend I had the opportunity to get away for a couple of days. My sister had a conference she was going to where there would be lots of opportunities to play in between her meetings, and she could bring one guest.
When she called and asked me if I wanted to go with her I was ecstatic! But I had my reservations about leaving Cody and Bill to fend for themselves. Bill assured me they would be fine and I should go. And yes, I was excited and somewhat relieved. But in the back of my mind I wondered how they would do without me. Needless to say, I called often. Each time I found myself amazed at how much Cody has matured and how independent he is becoming.
While I was traveling to my destination, Bill and I talked every hour or so. There was a little part of me that expected to hear that Cody was becoming agitated or nervous. But that didn’t happen.
In many of those conversations Bill turned the phone over to Cody so he and I could chat for a few minutes. I was pleasantly surprised to hear no signs of anxiety in his voice. His tone of voice was even and his topics of conversation were about things he enjoyed doing or something fun that he and Bill were doing. I had expected to hear him ask me repeatedly when I would be home, like he used to do. He didn’t do that this time. I did tell him when I would be back at least once each time that we spoke. So perhaps that is now enough to satisfy him, which is a huge improvement from the past.
My sister and I finally arrived at our hotel around 5:00 Sunday evening. I called Bill to let him know we had made it there safely and to see how things were going at home. He informed me that Cody was doing just fine and they had already eaten, and had showered and shaved. He also informed me that Cody had taken over some of my dinner duties such as helping to clear the table when dinner was over. Cody was also very decisive and verbal about helping Bill choose what foods would be on the menu for different meals.
Around 9:00 that evening Bill called to let me know that Cody told him he was ready to go to bed. I talked to Cody so we could say our “good nights and I love yous." I was very happy to hear all about what he and Bill would be doing the next day instead of the anxious echolalia I expected. When our conversation ended Cody sounded quite content to go get settled in for a good night’s sleep.
Cody maintained this kind of easy going demeanor throughout the duration of my getaway. And when I saw him again for the first time since my departure there was no sign of the sort of aloof body language that screams, “I’m not talking to you because you went away and didn’t take me.” Instead, he was all smiles and even teased me by panting on my cheek like a puppy might do. This was such a monumental change!
I know we have been striving to help Cody become more self-sufficient. I’ve longed to see him be able to enjoy life in a lot of the ways that his neurotypical peers do. And those longings are coming to fruition more rapidly than I ever thought they would—maybe even a bit too quickly for my liking.
But could it be that I’ve kind of been in the way? Could it be that my over-protective motherly instincts have been hindering his development? Looking back, I think at least to some degree, the answer is yes.
I know a lot of parents have struggles with the idea that perhaps their kids don’t need them to do all the things they’ve been doing for them. But sooner or later they come to face-to-face with the fact that it’s time to give their children a chance to do things on their own and become their own person. And I guess that time has come for me.
It occurred to me last night—thanks in part to Temple Grandin's latest book, “The Autistic Brain: Thinking Across the Spectrum”—that perhaps my brother Willie's experience of the world is akin to living in our home during this renovation season. This is what it's like: Sounds are intermittent, unpredictable, and often too loud. Everything is akimbo, routines and objects alike. Items are jumbled up, and I want, desperately, to put everything in order. I love having things perfectly in place, and construction means that everything is uprooted. (When the kitchen floor varnish finally dried and we were able to move our refrigerator from the living room into the kitchen after 10 months, I danced for joy.) With so many projects in process at once, it's tough to know where to focus, literally and figuratively. Renovation is a disorienting experience, made more challenging by the lack of a definite endpoint. My husband Jonathan and I frequently tell each other, “Imagine what it's going to look like when it's done,” and, “It won't be like this forever,” but still, we don't know how long the process will take.
So imagine going through life in kind of constant, internal “renovation.” It's nearly impossible for people like me, people who don't have autism, to comprehend how overwhelming that must be … what an assault on one's senses, on one's sense of familiarity and comfort. If my brother Willie's experience of the world is like that—which I strongly suspect that it is—I have a whole new sense of compassion for him. Or perhaps I should say that my compassion has deepened with newfound understanding. As my husband works diligently to sand our floors (and I work diligently to tune out the sander and get my writing done), I keep thinking of Willie. I think about all the times I took for granted that my brother could “do better” … when, in reality, he was doing the absolute best he could. He was processing his experiences as effectively as he knew how.
The practical difficulties of living in a “renovation zone” are very real, and at times they overshadow the situation's more intangible gifts. But the intangibles are there, and they matter. In this season, I've practiced greater patience with myself and my environment. I've allotted more time to complete tasks, which leads to a slower, sweeter pace, and a lot less rushing around. And while I love to “finish” things, I've come to accept that, in many ways, our work is never done. The construction--distracting and loud and tedious as it can be—has been my teacher. Likewise, experiencing life with autism confers some specific strengths, difficult as they may be to discern. In “The Autistic Brain” Grandin writes, “I’m certainly not saying we should lose sight of the need to work on deficits. But … the focus on deficits is so intense and so automatic that people lose sight of the strengths … If even the experts can’t stop thinking about what’s wrong instead of what could be better, how can anyone expect the families who are dealing with autism on a daily basis to think any differently?”
Indeed. It takes an exceptional family to shift that focus, just as it takes an exceptional person to look, unflinchingly, at both the gifts and deficits that autism brings. But when we take the time to see the strengths inherent in the challenges, what often springs up is awe, a kind of compassionate wonder. And that same compassion helps the rest of us catch a glimpse of how so-called “ordinary” life looks and feels for people like my brother. I wonder: What if Willie's particular gifts—like his ability to imitate complex rhythms and patterns and make beautiful music, or his love for wordplay and puzzles and organization—arise in part from his experiences of chaos and overload? And if so, isn't that true for you, too? Isn't your love for writing a search for meaning, a way you make sense of the senseless?
These thoughts are like antiseptic on a wound; though they sting at first, they also help to heal.
There are challenges every day when working with adults with autism, especially when the individuals are out in the community working at jobs. As a Supported Employment Manager, I always try to make the worksites safe and to the individual’s liking. However, when out in the community, there is always a challenge or something unpredictable that can happen. In previous columns, I wrote about making sure the individual is placed in the right job, and that the environment is right for them as well. The thing about worksites is that the environment can change without warning, or the job itself can change at the drop of a hat. I have learned ways to help the individuals deal with these changes, and to train the staff on how to deal with the changes as well should something happen without notice.
One recent example of this just happened to an individual on my caseload at a worksite he had been at for years. The individual is very high-functioning, and has never really needed support staff at his worksite at a clothing store. The store managers had worked with someone with a disability before, and understood about autism. Then the store changed managers, and the new manager had never worked with someone with autism before and did not understand the employee’s challenges. The manager had some concerns about the individual walking away from his work, and not being able to do a new task that the manager was assigning him. After speaking with the manager about her concerns, it was decided that the individual would need on-site support in order to keep his job, This was a change in the environment for the individual, because he was used to staff just stopping in at the worksite to check on him, not someone being there all day. It was also a challenge for me because I would have to try to explain to the individual why an on-site job coach was necessary.
When I informed the individual of the change, he asked if the new arrangement was a “punishment.” I simply explained to the individual that support staff would help him learn and perform new job tasks. I wanted to communicate that the employee is doing a good job, but he might need a little help with new tasks. I also wanted to demonstrate to the store manager that I am willing to team up to help keep the individual employed with them.
There are always going to be challenges when working with someone with autism at the workplace. Whatever changes occur—in tasks, schedules, or work environment—the key is to work with the individual and staff to make accommodations to keep the individual employed in the community. As an Employment Manager, I can never plan for these changes. But I always look for solutions that allow the employee to be successful and the employer to feel the needs of the business are being met.
Another column deadline spurred me to check in with Reilly. We had a nice chat on a Friday afternoon, when he was relaxed and happy to answer my many questions. I was all set to write a column about how great he's doing (he is), but then he texted me a few hours later with news that some of his friends had been caught shoplifting at the Target store across the road from his school. He was with them, but not involved in the theft.
It was a stark reminder that, while Reilly and his friends are college-aged, and in a college-like setting, they are in many ways much younger than their years. Shoplifting is typically a younger adolescent crime, though I guess some people never quite outgrow the stage. Most of the students at NYIT's Vocational Independence Program are experiencing a level of freedom from constant supervision that they have never had before. I guess they're bound to make some dumb mistakes. I'm not excusing the behavior, and the school seems to be taking it very seriously. I'm only saying it would be less surprising if the students were 14 or 15 instead of 19 or 20.
Reilly seems to understand the severity of the crime and the consequences for those involved. He is appropriately chagrined. He had to miss homecoming activities because he was with the offenders. The offenders themselves are being suspended or expelled, if not criminally prosecuted. Hopefully, this will serve as a big deterrent to Reilly. A lesson learned. He had a long conversation with his dad about the event. But then he said, “Other than that, it's a pretty good day!”
Indeed, my earlier conversation with him had been full of good news. He's liking the two for-credit classes that he's taking, Criminal Justice and Contemporary World History. He says he's able to keep up with the work. The rest of his classes are going well, also. When pressed, he said he's not wild about the literature course. They're reading parts of Dante's “The Inferno” and talking about the nine circles of Hell. He had to write any essay about his idea of Hell. I correctly guessed that his Hell is populated by Cowboys, Giants and Eagles fans. The Redskins remain his obsession. In cooking class, he's learned to make grilled cheese sandwiches, pasta and brownies.
He and a few friends took the train into Manhattan on their own one Saturday. They visited Madame Tussauds wax museum and ate lunch at Hard Rock Cafe. They planned and budgeted for the trip all on their own, learning useful skills.
The dining hall has a new chef this year, and the food is better. Reilly likes the new pizza bagels. The new freshmen seemed “weird” at the beginning, but now they're fitting in better. He and his girlfriend Ashley had just celebrated their nine-month anniversary.
We even talked a little about the future. He thinks he might like to transfer next semester to a school that has a sports management major. I told him I had looked at the application and he needed to write an essay about a challenge he has faced in his life. He said he couldn't think of one. I didn't tell him that it seemed to me his entire life was full of challenges! After some thought, he said he might write about how hard it was to leave home for the first time. I endorsed that idea.
So, he's doing well and he wasn't arrested. Yet. He's coming home this weekend, since he has no classes on the Columbus Day holiday. He's excited to watch the Redskins versus Cowboys game with his dad. I think I'll hug him a little tighter and resist the urge to lecture.
October marks the beginning of National Disability Employment Awareness Month. It could not come at a better time for me because I’ve seen my job responsibilities at Autism Speaks focus more on the emphasis of employment services for young adults. For example, a few weeks ago I had the opportunity to attend a small business Town Hall in New York to engage in a discussion focused on employment-related issues for those with autism. This I learned was part of an ongoing series of small business Town Halls hosted by Autism Speaks, which will be happening around the country in the next few months.
In the NYC Town Hall there was a panel that led the overall conversation, which consisted of four small businesses that currently hire and provide job training for individuals with autism. The businesses involved were the Autistic Global Initiative (AGI), Rising Tide Car Wash, Extraordinary Ventures and [Words] Bookstore. I’ve had the opportunity to meet the leader of AGI in Val Paradiz many times in the past along with Jonah Zimiles who owns [Words] Bookstore. The other two businesses I wasn’t aware of but was thrilled to have the opportunity to hear more from.
My specific role in this event was to provide social media coverage for Autism Speaks social networks. After the event was over, it hit me that there were several more small business Town Halls to come! This excites me because at the end of each one I’ll be able to read a recap on the findings and hopefully learn more about different businesses helping our community. In a nutshell, I think that’s what National Disability Employment Awareness Month is all about in terms of autism. At it’s core I’ve always thought of this as an awareness campaign to help better educate businesses that it’s time to start employing more adults with autism, as well as letting those in the autistic community know of opportunities for them.
So for the rest of the month I’m excited to continue reading more about these Town Halls and hope it betters my understanding of adult services. As an adult on the spectrum, I would say I have a decent knowledge of this area but am in need of improvement. As I’ve only had one full time job in my life for under a year, I am going to take this month and these items to help myself and hopefully educate others like myself who are just starting out in the workplace, and the thousands not there yet.
One thing that comes to my mind is that outside of the urgent need for employers to develop jobs and hire individuals from the autism community is also the opportunity to encourage individuals with autism to become entrepreneurs by starting their own businesses. For example, I recently published my first book, “Defining Autism from the Heart.” So in addition to my full-time job, I also have my part-time job with the book. This week I had my first official book signing at [Words] Bookstore in Maplewood, NJ.
Now [Words] is helping me promote my book. I bring this up because I know not everyone in our community can handle a full-time job. There is still income to be made though in part-time employment. I can attest to this from my experience. Many other autistic adults create marketable items as well. We have to get out of the mindset that we can't do things, that we can’t be employed.
October is going to be an exciting month! I can’t wait.
Though I'd never seen her before, I recognized her immediately. Everything in her face and manner gave her identity away. At the time, I was scanning a crowd of rowdy children for my young friend David.* Once a month, I volunteer at a local respite-care night, free to special needs children and their siblings. On this, our second respite night, I was expecting David, but the young girl next to him … she was a surprise. When I spotted him at last, I saw why I'd had trouble finding him: her form effectively shielded his. She and David were seated together, one plate of hamburger and veggie chips before them. They had separate chairs, though they gave the impression of sharing one seat. Their heads leaned together in the pose of people long accustomed to sharing space. There was only one conclusion to come to: This must be his older sister.
I took a deep breath and walked over to their table. Kneeling beside them, I said, “Hi, David. It's good to see you again!” Turning to his sister, I said, “Hi, I'm Caroline, David's buddy. What's your name?”
“I'm Darcy,*” she replied. Her voice was guarded, but there was a barely-perceptible eagerness there, too. She's smart to be cautious … but I think she could use a friend, I thought. How to set her mind at ease? I'll just show her that I respect and care for David, I decided. She clearly adores him.
“It's nice to meet you,” I said. “David's sister, right?”
“Right,” she said, a small smile lighting her face.
“I can tell. And how old are you?” I asked.
“I'm eight … we're twins!” she exclaimed. I couldn't believe I hadn't seen it before; the resemblance was readily apparent.
“Wow! I always thought it would be so cool to have a twin,” I said. “I have a younger brother, Willie … he has some special needs, too. Autism.”
“How old is he?” she asked, with interest.
“He's 26, and I'm 28,” I said. “He lives with our parents. I miss him … but anyway, I had a great time hanging out with David last month,” I told her. “We made a Play-Doh cake, and he had us all jump out and yell, SURPRISE!”
Here, David chimed in, right on cue: “Everybody, everybody!”
“He does that all the time,” she said. In her tone was that sweet exasperation that is so specific to siblings.
“I bet!” I replied.
With that, the conversational floodgates opened. Darcy had questions: “What do we do here? What happens next? Is it all right if I have some food, too?”
She was winning me over and making my heart ache, all at the same time. “Of course!” I replied to her last question. “Have whatever you like.” Saying this to some children is a recipe for disaster. But Darcy, I sensed, could be trusted not to go overboard. Sure enough, she selected a few chicken nuggets, and shared them with her brother.
For the next few hours, we three stayed together. Darcy was incredibly attuned to David, helping him as we moved through various activities. Yet as the night went on, Darcy would dash off on her own more often, running away to shoot baskets with other kids. I was happy to play a part, however small, in allowing her to drop the supervisory role and just be a kid.
At the end of the evening, we played Parachute, everyone's favorite. We took turns running beneath the fluttering fabric, and the look on David's face as he scrambled across the floor was pure joy. Swift-footed Darcy made it out first; I lingered to make sure David escaped. He ran the last few steps before crashing, happily, into me. I grinned, holding him up for a moment as he caught his balance. Then Darcy was by my side, giving me a spontaneous hug.
In that moment, the differences between us—age, autism, everything—fell to the ground along with the primary colors of the parachute. They swirled among the reds, yellows, and blues before disappearing from view. And all I could see were two siblings, two smiles to cherish.
My autism has created numerous difficulties in my life, many of which I have been able to overcome. However, there are still tasks that I have to learn. I had the opportunity to work on one of these tasks this past week: preparing and administering my own asthma medications. With the changing of the seasons, it seems that I always come down with a cold, and as I had expected, like clockwork, I did just that. This is compounded by the fact that I am also asthmatic, so once I catch a cold my symptoms are often complicated by asthma. It also does not help that for some odd reason neither I nor my parents have ever been able to fathom, my system is overly sensitive to the tiniest changes in temperatures and air pressure, making my colds last longer than normal and become, at times, severe. I have to address the cold immediately or it will work itself into a much more serious illness such as bronchitis or a sinus infection.
When I was younger, these colds would cause me to seize up and shut out everything else around me. When ill, I had a hard time focusing and my behaviors were more erratic and harder for me to control. This paralyzing effect greatly alarmed my parents for two reasons: It was a surprising reaction that other children my age did not exhibit which made it hard for them to figure out what to do for me, and my autism prevented me from fully getting a grasp on the situation.
My parents have used a nebulizer machine since I was a very young boy to administer my asthma medications as I was never able to master the use of inhalers. These treatments were and continue to be a welcome relief for my lungs during my colds. As this cold is the first of the season, my mother thought it was time for me to learn to prepare and administer my own asthma treatments. She taught me the names of my medications and the step-by-step process of setting up their administration. I learned how to put together and take apart the nozzle apparatus I use to receive the treatment as well as how to put the two medicines I use into it. I have already known for years how to fit the nozzle onto the machine itself and turn the machine on and off. I am now learning, though, what happens after my treatment is over: I now know how to clean and dry each part of the nozzle apparatus and store it for later use.
I have been steadily recovering from my cold and now the only part of it that remains is a stubborn cough. That is lessening, too, due in part to my daily treatments. I think it is very important for me to learn more and more about what I can do for my own well-being, and I am proud that I now have the knowledge to administer my own asthma medications independently.
My life has its ups and downs, but I am glad that I am now able to more readily anticipate and control more and more of the down moments.
“So how’s Madison,” my new caregiver asked as she was driving me to my next appointment. She’d remembered my last couple of visits with Madison and my reported incidents—Madison’s bloodied head and then the darling’s decision to whack mine hard enough for me to see stars. She knew I’d struggled with figuring out both when to see Madison and where to see her.
“We had the best visit ever,” I said from the back seat of my van. “She was calm, focused. She spoke so clearly in all the drills we do.”
Our scripted conversations are often the best indicator of Madison’s mood and alertness.
“How are you?” is the prompted question. “I’m fine,” is her learned response.
“What’s up?” I say. “Not much,” she replies.
“How’s life?” I ask. “Not bad,” she says.
At least that’s the way is supposed to go. But often she makes substitutions.
“How are you?” I asked in the last visit.
“I’m 19 years old,” she said, quickly, but clearly.
“No, Madison. How ARE you?”
“I’m FINE,” she boomed back.
“Good job, Madison! Now, how OLD are you?”
“I’m 19 years old.”
“No, try better,” I said and looked down at the floor, with shades of ABA training coloring my response. “Madison you are 21,” I said and looked into her eyes. “Twenty-one,” I repeated.
She looked back at me and I tried again. “Madison, how OLD are you?”
“Twenty-one,” she said, cracking a smile.
“Great job, Madison! High five!” And we gave each other our palms in mid-air.
We visited for a long time. I had brought in lunch for us as I’d learned to do. It’s not the Tuesday lunch outing we were used to, but it gave us some time together. And that’s the point.
We were eating in the school’s lunch area. Madison had plopped down in a folding chair and crossed her legs before plowing into her fries, as usual. But what was most unusual was what she didn’t do. She didn’t grab the snack bag that I bring from home that contains all her favorites. She didn’t plunder it searching for her peanut butter and graham crackers. She didn’t ask for Cheetos or her Nutrigrain bar. She was happy, eating her nuggets and fries. I’d never seen her so content.
So I pressed on with some more “conversation.”
“Madison, what’s your mommy’s name?”
“Your daddy’s name?”
“Your sister’s name?”
“Your brother’s name?”
“PETER!” she shouted, flashing her biggest grin ever. She’s always loved shouting his name for some reason and this time was even more enthused.
I stroked her hair, so soft and well cared for. She looked at me with her hazel eyes, so clear and easily engaged.
I guess she is finally settled and happy. After 86 days in her new adult service program, she has adjusted and is content.
And so am I.
I attended Back to School Night at Cameron’s sister’s school last week. The math specialist gave her overview of the fifth grade curriculum, and concluded by reading a story. I just had to share this story as it resonated with me on so many levels.
The story is about a little boy who found a caterpillar and kept it in a jar as his beloved pet. When the caterpillar began to build its cocoon, the boy feared something was wrong. The boy’s mother reassured him that the caterpillar was merely building a cocoon, and would eventually emerge as a beautiful butterfly.
One day, the boy saw the butterfly begin to emerge from the cocoon. But the caterpillar was struggling so much to emerge from a tiny opening in the cocoon that the boy feared the butterfly would never be able to escape. The boy took some scissors and cut the cocoon so that the butterfly could easily emerge. But the butterfly that emerged looked nothing like the butterfly the boy expected to see. The boy’s butterfly had a swollen body and small wings. The boy waited patiently for the wings to develop, but the butterfly never flew. The butterfly’s body remained swollen, and its wings were too small to allow the butterfly to fly.
You see, a butterfly must struggle to emerge from its cocoon. When the butterfly pushes itself through the tiny opening in its cocoon, this “struggle” moves the fluid from its body into its wings. Without the struggle, a butterfly will never fly.
I don’t know about you, but I feel I’ve struggled enough as a parent to make one heck of a butterfly. But obviously the moral of the story isn’t about struggling as a parent. It’s about letting others struggle and resisting the urge to jump to the rescue. The art of allowing a child to struggle is a difficult one to master, especially when the struggles are so pervasive, as they are when dealing with developmental disabilities. I think the lesson of allowing a person to struggle in order to grow, or “fly” as the story goes, is an important one to keep in mind.
One of the most difficult things about being Cameron’s mom is watching him struggle. Whether it be making simple conversation, or completing a form to document community service hours, I don’t always resist the urge to jump in and help. I answer questions for him or quickly fill out the form, all in the interest of saving time, of course. I have to constantly remind myself of what Cameron is capable of doing on his own, and that short cuts do not necessarily make things better. It’s much easier to go behind Cameron and re-clean his bathroom than experience his frustration of being told he didn’t do the job properly the first time. But I have to remind myself that a boss would not do Cameron’s tasks for him just because Cameron is struggling to get things done right the first time. Moms need to be a little tougher on our kids because the world will be a lot tougher on them if we aren’t.
In a column I wrote several months ago I told you about our trip to the Social Security Office to get the ball rolling for Bill’s retirement, and how under the Family Benefits provision, Cody would no longer receive SSI but receive a monthly sum from Family Benefits.
As a result, Cody’s Medicaid program changed from a “non-spend-down” to a “spend-down” in which we pay a nominal amount to the state each month for him to continue to have coverage.
We did all the paperwork and made all the calls and a few weeks later we received a notice from Medicaid stating all was in order. But it turns out there were a few details they failed to mention.
One would think after all the information we provided and given modern-day technology, that knowledge would have been passed along to other key organizations—you know? Like the fact that when Bill retired Cody would no longer have private health insurance in addition to Medicaid, which I felt we made very clear to all parties involved. That communication didn’t happen.
Last week it was time to refill Cody’s medications so we called the pharmacy to let them know as we always do. Bear in mind this pharmacy is also directly affiliated with the hospital where Bill worked for 18 years. Bill, being the social butterfly that he is, was on a first name basis with all the staff. They had been informed of his retirement and that we would no longer have the same health insurance plan once his official last day arrived and that Medicaid would be Cody’s sole coverage. So there should have been no confusion, right? Yeah—not so much.
Several hours later we received a call from one of the pharmacy employees who stated that Bill’s insurance was rejecting access for Cody’s refills and so was Medicaid. Once again I explained that Bill no longer had that plan and that Cody’s only source of medical and prescription coverage was from Medicaid.
“Yes, that’s showing up,” she said.
“If it is showing up then why are you attempting to bill my husband’s prior insurance plan?” I asked, bewildered.
“It is the Medicaid office who is still showing he has other coverage. You’ll have to call them.”
So once again I contacted the MO Healthnet office to find out what was going on. After navigating through all the recorded prompts I was put on hold to wait for the next available agent. As I sat there listening to an endless loop of really bad elevator music it seemed like hours before my call was answered by an agent.
I explained the situation to him and he said he would fix the problem and that I should contact the pharmacy again to have them bill my husband’s prior insurance once again and when it was rejected to then bill Medicaid and that the rejection notice should accompany their billing correspondence. “Ok.” I said, exasperated. And the call ended so I could relay the message to the pharmacy.
Upon speaking to the pharmacy employee once again I told her what the agent at the state had said. She instructed me to stay on the line while she tried again, which I was happy to do. But it still was not going through. She stated she was still getting an error message that Cody had other insurance and that they should be billed first.
“I don’t know what else to do. That’s what they told me to tell you,” I explained.
“Until they have it out of their system that he has other insurance we’re just going to continue to get rejections,” she said.
Her compassion and understanding were evident but unfortunately it was going to take more than that to fix the problem. So I initiated a fourth phone call.
I ran the gauntlet through the recorded prompts and was placed on hold once again. This time the elevator music was distorted and scratchy like something you would hear in a haunted house. I swore that while I was waiting I could feel my hair turning gray. Finally an agent answered and after explaining our dilemma one more time she asked to put me on standby while she did some checking. She wasn’t gone for very long this time when she came back and said that the pharmacy was coding it wrong. When she told me I was going to have to call them back to tell them I thought I might be in for a psychotic break! But then she gave me a telephone number that the pharmacy could call and the people at this number would help her submit this bill correctly. A fifth phone call ensued.
I conveyed the info to the pharmacy and waited to hear if they had gotten anywhere. Another several hours passed when they called to say everything was all straightened out and we could pick Cody’s meds up the next day. I was so relieved.
But why did all this have to happen? I realize certain things can’t be transmitted in certain ways for privacy and security reasons. But was this truly a HIPPA issue? Or was it a case of someone not doing their job? If it was HIPPA, then perhaps it was a case of HIPPA gone too far.
Let me tell you this: My family and I have very differing philosophies when it comes to bike riding. I view a bike ride as a fairly leisurely occupation, an opportunity to notice the birds in the trees and the scent of saltwater in the air. My parents and brother, on the other hand, consider a bike ride an opportunity to zoom from Point A to Point B as quickly as possible. On vacation—vacation!—they ride for about an hour and a half each morning. And on the last day of our trip to Hilton Head earlier this month, I decided to join them. Within the first five minutes, I gave up hope of trying to catch my brother and reconciled myself to being last in line. Two hours and one empty water bottle later, I could barely stand up straight. My parents and brother headed for the pool, and I headed for the couch.
After I recovered (read: slept the sleep of the exhausted), my husband Jonathan and I made a list in preparation for our trip to the local food store. We'd volunteered to prepare supper for the family, so we needed provisions … and my parents, as it turned out, needed a break. On the first day we'd arrived, I'd offered to spend an afternoon with Willie, thereby giving my parents some time to themselves. And that day, my mom finally took me up on the offer, saying, “Honey, do you think you two could take Willie with you to the grocery store?”
Though I'd been the one to offer, I hesitated. Willie was having a great day, but I know firsthand how fast his mood can change. Worst-case supermarket scenarios spun through my mind; I imagined an epic meltdown in the refrigerated section. With willpower, I coached myself back to reality: You'll be with Jonathan. You won't be alone. And Willie has been doing so well. He's not at all on edge today, and he's been fine every day this week. Plus, it's important to help out and give your parents some much-needed respite. It isn't always easy for them to ask …
“Okay, sounds good!” I said. With trepidation, I picked up my purse and let Willie know that he was invited to come with us. He sprang into action, pulling on his shoes and picking up the empty gallon-jug water bottles that needed to be refilled at the store. (How could he move so fast, after a bike ride and a swim?! I wondered.) Soon we were out the door. “Go out! Have fun!” I called to our parents. Even so, I half-expected them to be doing laundry when we came home. But when we returned—after a gloriously uneventful grocery store experience—Mom and Dad were nowhere to be found. “They made a break for it!” I joked with Jonathan. I was simultaneously surprised and proud of them.
Together, the three of us unloaded the groceries; Willie pitched in without being asked. Once the food was put away, Willie raced over to Dad's laptop to watch videos. He needed time to unwind, so I let him be as I took charge of finishing the laundry. My husband made sure that dinner preparations were set in motion; soon, the tantalizing smells of meatloaf, roasted asparagus, and spaghetti squash filled the kitchen. I handed Willie a pile of clothes to fold, so he could help out while staying on the computer. And when the family played Go Fish that night, Willie and I tied for the win.
As I drifted to sleep, I kept picturing Willie filling the water bottles. Though the refill machine seemed confusing to me, he'd known just what to do. I handed Willie empty bottles, and he gave them back to me full. He'd taken charge; all I'd done was hand him bills and coins. It was akin to watching my brother on a bike, seeing him fly far ahead of me and not minding a bit.
It took all three of us to carry the water jugs to the car, but as I walked into the bright afternoon, mine seemed to weigh nothing at all.
For the first time since I started writing this column, my deadline approached and I didn't have anything to say. Totally stumped. It occurred to me that Reilly was off my radar. Aside from occasional texts, mostly football related, and Facebook posts—again some football related—we haven't had much communication recently.
As most parents of college students know, no news is generally good news. We hear from our children when things are going badly or they need something. I think this rule applies with Reilly as well.
I have been busy myself, working through the waning days of a political campaign. I'll have a lot more free time beginning November 6. Every now and then, it occurs to me to wonder how Reilly is doing. I go to Facebook for the answer. A sampling of his recent posts gives me clues.
"Grrrr. Mondays suck. That is all." I hear you, pal.
Then something about the Redskins quarterback not being totally recovered from last season's injury.
"Wednesday is such a tease. It's like, 'hey the weekend is almost here,' but you still have to get up early for school. Such BS man."
Sounded like he needed some encouragement that day, so I commented: "Hope you have a good day, bud. Call me when you get a chance. Love you!" To which he replied: "About what?" I'm still waiting for that call.
Then: "Grrr. This Government textbook still hasn't come! Why?????" I'm not sure what that's about. Maybe I should look into it. But maybe it's a problem I'll let him work out with his teacher.
Then something about how his video game system isn't working and he'll have to wait 'til Thanksgiving to play the new Grand Theft Auto game at home. Aww, that's a shame. He seems to be coping fairly well with the disappointment. That's a problem I definitely don't want to solve for him.
There was a post about Miley Cyrus's hair. But then a news nugget: "Had food class today. Made pancakes. I think I'm going to like this class! (smiley face)" In the comments, he said his girlfriend, Ashley, transferred into the class, so he's even happier.
And finally a post he tagged me in: "Rose Donovan, I need this! Just sayin'" It was an ad for a CD, "Punk Goes Christmas," available in November.
In the middle of this week of FB posts, I decided to take a few days off from the campaign and accompany my husband on a business trip to Iowa, giving us a chance to visit our respective families. While I was at dinner with family, I got an accusing text from Reilly: "You didn't tell me you and Dad were in Iowa!" One of his cousins had texted him that he was having dinner with Reilly's parents. "Remember when I asked you to call me when you got chance?" I replied. "That's what I was going to tell you." Touché. Apparently he thinks I live in suspended animation while he's away.
The lesson, I guess, is that when I forget to worry about Reilly, we both seem to thrive in our respective worlds. I will have time to worry about his future again in about six weeks. Right now I have bigger, or at least more immediate, fish to fry. I have to get my candidate elected. Meanwhile, Reilly if you read this, phone home. If I'm not home, try my cell. Love you! Mom.
I came downstairs to find Cameron eating his breakfast. As we greeted each other with the traditional good mornings, Cameron said, "What medicine can I take for a headache?"
My initial reaction was, "Uh oh. He never complains of little aches and pains. I hope he's not coming down with something."
I gave him an ibuprofen, and prompted for water consumption. As I began my morning routine, I started to think about all the over the counter medications we have available to us ... and then I started to realize how infrequently Cameron feels poorly. Aside from the allergy pill and the inhaler he manages himself, he's had little experience with determining what medication to take and when to take it. Yet another independent living skill to develop.
As if on cue, Cameron returned from school that day, and said, "I have an important question to ask. How often can you take those headache pills?" Good of him to ask! He took another pill, and at bedtime I suggested he take another. "Are you sure? It hasn't been quite six hours." Maybe this skill development won't be as difficult as I thought.
Guardianship is just one of the many questions I'm dealing with since Cameron has reached the age of 18. Specifically, with regards to medical care. While I'm a bit concerned with Cameron's ability to sign for himself in all things legal, the thought of him being able to deny medical care, for whatever reason, and the healthcare providers being required to abide by his wishes has left me a bit nervous. Cameron has an extreme aversion to needles. I worry that something causes a visit to an emergency room, a nurse comes at him with an IV needle, and Cameron protests, "No! No! No!" What's a hospital to do in that case?
I decided to graduate Cameron from the pediatric practice he had been going to, and scheduled his annual physical with the internist I see myself. I really like my doctor's approach, as he is very reluctant to get out his prescription pad. He supports reasonable alternative approaches. At my last visit, I had explained a bit about Cameron, and floated a question about guardianship. I was worried that the doctor would not even allow me in the exam room, based on HIPPA regulations. While the doctor seemed to encourage medical guardianship, my own research proved that HIPPA isn't as restrictive as I had thought. Healthcare providers are allowed to provide information to family members, without written consent from the patient. While providers may have their own requirements in this regard, it is not a HIPPA requirement.
How is this going to help me, however in the ER scenario where I'm not there, and Cameron is screaming "No!" at the needle coming towards him?
As part of the initial physical, our doctor does extensive screening. So much so that the lab I took Cameron to for the blood draw was concerned they would be taking too much. But after consulting their matrices, it was determined it was safe to fill up all those tubes with Cameron's blood. I warned Cameron on the way to the lab that they'd probably need about seven tubes. He was a bit miffed that the tube count was closer to 12. As the nurse was preparing for the jab, I coached Cameron on deep breathing and relaxing. I told him to close his eyes and visualize a place he'd like to be. My visualization would always be a beach, but I'm sure this would not be the case with Cameron. I just had to ask Cameron what he was visualizing. "The sausage sandwich I'm getting after this." Of course! It had to be food!
Cameron did great during the draw, and reported to the family at the dinner table that evening that it wasn't that bad. I think he'll be fine if he's on his own with medical care decisions. But I'm going to make sure he understands what it means if he says no when I'm not around.
I can’t begin to tell you how much I love sports. When I was younger sports were a great way to build my confidence so that I could succeed in school. This helped tremendously towards my work ethic when it came to academics and the therapies I took part in. I used to do all the Pee Wee sports and would watch as many professional sporting competitions as I could.
Then, when I was in high school, I became even more engaged in sports when I participated in both tennis and basketball. I loved high school sports so much. That’s why over a year ago when an incident occurred close to home involving a high school athlete, I felt complete empathy. It involved the rise to fame of a fellow New Jersey boy, Anthony Starego. Last October Starego —an young man on the autism spectrum—kicked the game-winning field goal as a placekicker for his high school. A month later, “ESPN College Gameday” highlighted Anthony’s game-winning kick in a featured video titled “The Kick of Hope”.
It wouldn’t be until a few months later that Starego’s rise would stall. In March, Starego’s request for a waiver from the New Jersey State Interscholastic Athletic Association (NJSIAA) to come back to his high school team for a fifth season was denied. I really feel bad for Starego in this situation. Stego—who will turn 19 this year—has the right under his Individual Education Plan (IEP) to remain in high school until he turns 21. New Jersey has a policy that athletes in high school can only play on a team for eight semesters and until they turn 19. Could you imagine being in a similar situation? Having an ability to do something you love but being denied eligibility and having to sit on the sidelines for three years?
Since this incident, Starego’s family has become active in trying to reverse the decision of the NJSIAA. In April, they filed a federal lawsuit on Starego’s behalf. The lawsuit is based on the premise that it would violate his rights under the American with Disabilities Act by denying him the opportunity to return for another season since he is entitled to remain at the school due to his disability.
As a former high school athlete, this entire situation left me very uneasy. After the months of hope that Starego would end up winning his case, it seems that the odds are now more than ever stacked against him. With this unresolved and school back in session, Starego’s chances of playing again for his team are becoming very slim.
A report a few weeks ago from the Star-Ledger made me understand the point of the NJSIAA a bit more when they discussed that Anthony Starego’s talents would bring an unfair advantage to his team as they consider him to have "college level" kicking skills. It was also noted that keeping him on the team for a fifth year would displace another high school athlete.
The Starego family plans to appeal the decision made and hopes to have Starego back on the team before the season begins. I wish the best for Starego in this situation because I couldn’t imagine being in the same shoes as him. I would have felt totally dejected if I attended a fifth year of high school and couldn’t be part of something I loved. Even if he’s not allowed to play next season I hope he continues to tell his story to help inspire countless of young disabled youth around the country. My heart goes out for the Starego family!
The future creeps up on you when you’re busy doing other things. Deadlines and decisions come jumping at you just when you start to relax.
Last week, Cameron had an interview with the director of a postsecondary program we are considering. The interview was done via Skype.
Being a self-advocate in the autism community for the past several years has definitely had a few perks here and there.
Last night I had a dream that found me raging through my childhood home. For some reason, I was very angry with my family.
Every day I live with and struggle to compensate for my autism.
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