The Lowdown, Vol. 6

It’s sort of been good-days-and-bad-days around here lately. Good days, like what I wrote about in a recent post, and bad days, like what I don’t write about. I allude to Nigel’s “grumpiness,” which is blog-speak for blatant disrespectfulness; I say that he is doing well emotionally and behaviorally, and days later he is raging and crying about being irresponsible and worthless; I write about him being comfortable at his current school, yet his academic/executive functioning skills are still lacking (putting it mildly), and I have no strength to deal with it now, after years of dealing with it alone. I need a vacation. We need a vacation.

Fortunately, several months ago we started planning a vacation for the week of Thanksgiving. My father, whom I have written about before, is an avid world traveler and wanted to take his two older grandsons on an international trip as their high school graduation gift from him. Not sure what direction his cancer battle would take (he is currently undergoing his third round of treatment), earlier this year Dad suggested that we accompany him on his annual Thanksgiving-in-Thailand trip now rather than wait for their graduations. And so, I am very excited to announce that early Friday morning we leave for a week in Thailand!

The boys are ecstatic about their first international trip – they have read and enjoyed National Geographic since Kindergarten and can’t wait to get out and explore and experience (albeit briefly) another country. Grandpa has planned some amazing activities! And it will be so great to spend some time together. We can’t wait!

In other news, I was recently honored with the Versatile Blogger Award – twice! I’d like to thank both Stacey at The Four Cannons and Jazzy at Jazzygal for thinking of me! Jazzy noted that it would be perfect to post in my sidebar (the green!), and as soon as I have time to do some size tweaking, I certainly will:

Instructions for this award state that I should list seven interesting things about myself, but since I had done that for a previous award (and I can’t come up with seven more at the moment!), I’ve decided to do a variation – Seven of My Favorite Things:

  • Book: The Shadow of the Wind by Carlos Ruiz Zafon
  • Movie: Best in Show
  • Color: green
  • Food: sushi
  • Animal: tiger
  • Country: Greece (so far!)    

              

I’m going to have to humbly bow out of tagging since I have a huge list of things to do to get ready for the trip, including packing! I’ll be back here with pictures in two weeks!

Experience Matters

I was recently contacted by two different parties conducting surveys regarding our experiences as the parents of children with autism, and I am happy to post the information about them. Why? Not just because those conducting the surveys would benefit from our experience, but because, in the long run, other parents would benefit as well. Our experience matters to them. Letting our voices be heard matters. If you can, please join me in participating in the following surveys:

Mischelle Miller-Raftery, a doctoral student in psychology at California Southern University, is conducting a study on potential prenatal environmental triggers of autism.  Ms. Raftery is looking to survey at least 50 mothers raising children who have been diagnosed with autistic spectrum disorder (Asperger’s Syndrome, autism, and pervasive developmental disorder-not otherwise specified); and 20 mothers whose children have not been diagnosed. This survey asks general questions about the mother’s environment and lifestyle choices during pregnancy. The participant will be asked to fill in each question for the time period during their pregnancy with the child who was diagnosed with autism. The premise of this study is to look for trends between environmental exposures and autism. Specifically, this study explores multiple exposure combinations which might have occurred during your pregnancy. The goal of this study is to explore the possible environmental influences on autism.

To qualify for the study, the participant must meet the following criteria:
• Their child must have been diagnosed with autism spectrum disorder including Asperger’s Syndrome, autism, and pervasive developmental disorder- not otherwise specified.
• Their baby must have been considered full-term (born after 37 weeks).
• Their child must have no other developmental diagnosis.
• Or, for the control group – Have a child over the age of three with no known diagnosis.

Participation in this study should take about 25 minutes to fill out the questionnaire. The link to the survey is: https://www.surveymonkey.com/s/3YBPGBT, which is open until January 15.

The other survey opportunity is being conducted by researchers at Columbia University’s Institute for Social and Economic Research and Policy. They are currently collecting life stories from parents about our experiences in recognizing our child’s autism, seeking professional help and navigating the available service systems. The goal of this project is to gain a better understanding of the road to diagnosis. We parents have different experiences and observations of our child’s development, and we have different personal resources with which we access care and services. We also differ in the type and extent of our support networks and social relations. And finally, we make different decisions in our quest for obtaining the right diagnosis and care for our child.  The researchers would like to give parents the chance to tell our stories. Participation in the survey may help them understand the heterogeneity of autism as well as how children develop over time.

The life stories of parents of children who have autism are being collected through an online semi-structured survey at http://www.understandingautism.columbia.edu.

Thank you for your time and for sharing your experiences.

Steps

Nigel, age sixteen, calmly noticing that there is only enough milk for one bowl of cereal:  “I’ll just have toast this morning.”

*

At the age of six, after he had spent three years in an intensive ABA-based program, Nigel started Kindergarten in a contained (non-mainstreamed) classroom through STEPS, Specialized Training in Education Program Service. It was a two-year program, and he did so well after the first year that I made a huge mistake, one I still regret: I tried mainstreaming him before he was ready. The results were disastrous, and fortunately we were able to have him go back into the STEPS classroom after several agonizing weeks of the regular. He seamlessly returned to STEPS and finished out his second year, making even more developmental strides.

Almost ten years have passed, and I’ve never forgotten the STEPS classroom and how beneficial it was for Nigel. But to be honest, usually it’s the acronym that I think of on a regular basis. It’s a reminder of the nature of development where autism is concerned – sometimes it’s one step forward, two steps back. Sometimes it just seems to be a whole series of steps back. And sometimes there are those blessed days when it’s one forward step after another.

Aside from some grouchiness due to Daylight Savings Time and some minor growling about having to do household chores, Nigel has, behaviorally and socially, been doing incredibly well. He still attends his social skills class every other week, and that helps a lot. But the fact is – he’s self-regulating just as well as he did when he was on medication. It took some adjustment time, but these days, he continues to out-do himself.

For instance, when we were planning his recent birthday sleepover with two friends, he thought that it would be fun to carve pumpkins with them, and I thought it best to prepare him by mentioning that no one should be obligated to carve the pumpkins if they didn’t want to. Nigel’s calm response (in his typical flat voice): “I most certainly recognize that.” (!) Additionally, at this point he has nearly mastered the art of the Unprompted Thank You, less than a year after his first one. And one morning last week, as he was going out to the shed to get his bike to ride to school (a feat that, even after a year, I never take for granted), on his own he remembered his helmet when I kissed him goodbye and said, “I love you. Ride safely.” Usually I notice when he occasionally forgets his helmet. I don’t know which shocked me more – that I didn’t notice, or that when I said ride safely, he realized that he had forgotten his helmet and went to put it on. But that – amazing as it was – was nothing compared to the thing with the toast.

*

Aidan, my creature of extreme habit, my fourteen-year-old limited eater, always has cereal and milk for breakfast. It’s the only dairy he will consume. If we’ve run out of milk on grocery day, he refuses to have anything else for breakfast, and I can’t stand the thought of him going hungry. In the mornings, Nigel usually gets to the kitchen first to pour his own bowl of cereal and milk. Then Aidan staggers in and does the same thing. Once in a while, Nigel, on autopilot, uses up the last of the milk before Aidan gets out there. I’m sure it was never a conscious decision on Nigel’s part not to save any for Aidan. So, knowing that Nigel also likes toast for breakfast, I made a suggestion one morning when there had only been one serving of milk in the carton and Nigel had consumed it.  “Since Aidan doesn’t like toast, maybe in the future if you notice that there’s only enough milk for one person, you could save it for him, and you could have toast.” Nigel negligibly nodded; morning tends to be his least verbal time. I figured that, at best, he might remember to save the milk after I had reminded him at least twenty more times (and no, I’m not exaggerating). I certainly didn’t in my wildest dreams think that two weeks later, after my mentioning it only once to him, that on his own he would pour his bowl of cereal, go get the milk, notice by the carton’s weight that it only had one serving left in it, and calmly, empathetically announce, “I’ll just have toast this morning,” saving the milk for his brother.

But that’s just what he did. He took another (big) step forward. And my heart swelled with emotion for my son, this wonderful soul who has never stopped trying.

Ed. note: Veterans Day has always been an important day to our family, and Nigel and I will be continuing his tradition again this year. If you hadn’t read it last year (or would like to again), I’d be honored if you would read my post about Nigel’s tribute to veterans. It’s one of my favorite stories about my son – and the veterans he looks up to.

The New Guy

Nigel, in recent years, has developed a liking for scary movies. Like, horror movies. Granted, they’re not his favorite, and he likes many other types of movies. In fact, he likes most movies, so perhaps he just doesn’t discriminate when it comes to movies. But seriously, how can a kid who loves Winnie the Pooh and Tigger also enjoy horror movies? I’ve tried asking him why he likes them, but of course answering any “why” questions is always difficult for him. He said, “With scary movies, I just think to myself that it’s not really real, so I’m not really scared.” Well, okay then. Let’s move on.

So he stepped things up from last year’s zombie theme (he was the zombie killer from The Evil Dead, not a zombie), and this Halloween he decided to be Jason from the Friday the 13th movies. Pretty simple, as far as costumes go – just buy the hockey mask and put on old clothes. But there was one small problem – I had told him last year that that was his last year trick-or-treating. At sixteen and 5’10”, he’s just too big. But with his five-year emotional delay, that’s like telling an eleven-year-old that he can’t go trick-or-treating anymore. And on Halloween this year, Nigel begged me to let him go “one last time.”

I gently reminded him that last year was his last time, and in the split second before he could protest, I had a flash of genius. “And Nigel!” I proclaimed, “Now you are old enough to open the door for the trick-or-treaters! And you can wear your costume while you give out the candy!”

He smiled a little, processing. “Because I’m almost an adult.”

Wanting to save that conversation for another time, I quickly moved on to describing the duties and “policies,” as Nigel put it, of being the candy giver-outer, feeling triumphant that my idea had successfully diverted a tirade. Nigel was delighted about his new role, and I was just as happy about his not-usually-this-easy acceptance of change as I was about being relieved of my annual post for the past nine years. It was time to train the new guy. I told Nigel not to scare the little ones, to say “Happy Halloween!” in a cheerful voice, even though he was being Jason. I instructed him to give out one candy bar (Snickers, of course, and KitKat) per kid. We set up the candy bowl, and he diligently watched out the window.

“Hey, Mom,” he called to me from his spot near the front door, “I thought up a good catch-phrase for myself.”

“A catch-phrase?”

“I’ll say, ‘I left my machete in the shed.'”

“Okay, but not to the little kids.”

The doorbell rang, and I hovered around the corner, out of sight, ready to assist if necessary. I heard some little voices yelling Trick or Treat! One said, “I like your mask.” Nigel, confused for a second, dutifully said Thanks, and then Happy Halloween! before closing the door. “Mom!” he called out in an amused tone, “There were three little Dorothys!” I laughed to myself then, realizing that the ones I thought would be scared of his costume actually had no idea who he was supposed to be and weren’t scared at all. He was just a guy wearing a hockey mask.

Sure enough, as time went by and the older kids started coming, I heard Whoa, that’s kinda scary as he opened the door. His tone of voice changed from being cheerful and friendly (to the littler kids) to sounding a little more foreboding as the evening went on. He employed his “catch-phrase” a few times, and when someone asked for a second piece of candy, he answered in his typically flat, deep voice, “The policy is one piece of candy.” At my spot around the corner, I stifled a guffaw.

Even with Nigel’s strict adherence to policy, we ran out of candy by 8:30 and had to shut off all the lights in the front rooms of the house. Then we went back to the family room with the few pieces I’d fortunately squirreled away, and Nigel humored me while we watched one of my all-time faves, Disney’s animated The Legend of Sleepy Hollow. Not very scary, of course, but it was the perfect ending to my favorite Halloween ever.

The Autism Sisterhood: A Review

The Autism Sisterhood: A (Brief) Manual, by Michele C. Brooke, states on the back: “The Autism Sisterhood is designed to be a starting point. It’s short because I know you don’t have much free time to sit without interruption, and it’s small because I hope that once you’ve read it, you’ll place it in your purse or backpack and pass it along to another mom (or dad) who may need it.”

And that’s exactly what this great little book is. I read it in one sitting and found it to be an easy-to-read primer on lots of different topics especially helpful for parents of younger kids newly diagnosed, including contact information and links to various websites, books, and other helpful resources. Brooke covers the following topics, and many more: books (for kids and parents), music, videos, food, holidays, socializing, shopping, being outdoors, playing, and learning. Each chapter includes “Sisterhood Tips” pertaining to the topic and creative ways to approach every issue.

If you’re looking for a practical, enjoyable book (for yourself or a friend) about starting the journey of having a child on the autism spectrum, be sure to check out The Autism Sisterhood. It’s little, but it’s encouraging, and we could all use more of that!

Sixteen

Hello, it’s me, Nigel.
My plans for my 16th birthday, which actually is today, are of going to the Family Fun Center with my friends to have the party there on Friday. The Family Fun Center is where you can play video games or do some stuff outside like the batting cage, mini golf, or my favorite thing to do, in my opinion, is the go-karts. I’m really wanting to get my learner’s permit in driving, because I feel free, when I have my own ride.

Things at school are going fine for me, I have Algebra I, Video I, Theater Arts II/III, English 10, Life Science, and two study periods. As for my favorite class, I have two favorites, Video I and Theater Arts II/III. Speaking of which, for my theater class, I wrote a script for a musical play that I suggested to them. The homecoming dance was fun and exciting. But not as much as my uncle’s power washer. This is what I call empowering.

As for how I feel about my autism, I feel just fine about it. Earlier in the month, I saw the Temple Grandin film and it showed me someone else’s life that was sort of similar to mine. For when I grow up, I’m just wanting to be a filmmaker. Here’s one of my first short films, “Allosaurus Attack”:

License to Worry

I know of several teenagers and several adults, both on and not-on the autism spectrum, who don’t drive or don’t want to. It could be because they realize that they’re too easily distracted, or that they know it’s a huge responsibility and don’t feel ready or comfortable, or even that they simply aren’t interested. I’m sure there are many reasons why people who don’t drive do not. Unfortunately, my son, who was diagnosed with autism at age three and didn’t start talking until age five, does not feel that any of those reasons apply to him. He wants to drive. And he turns sixteen next week.

Nigel has always wanted to be like everybody else. I know this because even before he could talk, he would try to interact with other children by going up to them and laughing in their faces or bumping into them in the hopes that they would play with him. Without words, he tried to engage them. When he started learning to talk, he would go up to kids at a playground, repeat lines from his favorite movies, mixing up words he didn’t know, and the other kids would ask, “What language is he speaking?” Years later, when he was being bullied at the bus stop, I told him that I would drive him to school instead. His response: “But I just want to take the bus so I can be like everybody else.” He is nothing if not determined.

I know that there are people on the autism spectrum who can and do drive. But Nigel is just not there yet, and it may be a while. It has nothing to do with his ability to operate a vehicle. If anything, that will be his strength. The problem is his high distractibility. And his five-year emotional delay. Those are the main things standing in the way of him getting his driver’s license. I wouldn’t feel confident with an eleven-year-old driving, even if he is 5’10”.

I’ve written about this subject before and received all sorts of well-meaning comments ranging from letting him practice so that he gets familiar with the feel of the car (definitely not the issue), to letting him race go-karts (he has for years), to the patronizing all-parents-are-nervous-about-their-kids-driving (not the same thing). Of course all parents are nervous about their kids driving. When my younger son, fourteen and not autistic, starts driving, I will be worried. But nowhere near as worried as I am about Nigel driving, that’s for certain. It’s a far different level of nervousness. They’re both my sons, and on that level I worry equally, but one son has major challenges with judgment and awareness. And on that level I’m far more nervous.

When Nigel started talking about wanting to drive around five years ago, I almost had a panic attack. He knew then that he would have to wait, but I knew that he would have to wait longer than he anticipated. Last year when he turned fifteen, I talked with him about that, but he still wanted to know when. He wanted to know just how long he would have to wait. I told him that we’d revisit the idea in a year, and he has repeatedly reminded me in the past month that the time has come. Ugh.

Why, oh why, did I have to have the kid with autism who wants to drive and progressed to the point where maybe he can, but maybe he can’t?? How will he handle the disappointment if it’s determined that he can’t drive? He’s not content to just maneuver the car around an empty parking lot or down a dirt road. Driving go-karts, though still fun, is not nearly enough. He wants his learner’s permit, and he wants it badly.

And there’s my answer, if I’m aware enough to realize it. He’ll pass the written test (I’m sure with flying colors, due to his near-photographic memory), and he’ll get his permit. And maybe, for now, that’s all he wants. He wants to have his learner’s permit like “everybody else.” He just wants to have it. And I’m hoping that having it will satisfy him for a while. I know that eventually he’ll want to get out on the street, but we don’t have to hit the road anytime soon. And when he starts asking to do that, I’ll sign him up with a professional driving instructor. I’ll still worry, of course. But at least I don’t have to yet.

Anyway, I’m hoping.

**UPDATE** Two month after this post was written, Nigel had two more seizures and, after a 24-hour EEG and MRI, was diagnosed with epilepsy. He never obtained his permit and, at 18, still does not drive.

NEHBM

That’s my friend Carrie‘s acronym, NEHBM. It stands for not enough has been made, usually in reference to some little or not-so-little thing that a person in our life says or does that is worthy of appreciation, such as a teacher or aide who shares in our children’s small developmental coups, something that other people might not notice. Such as a friend’s relative who doesn’t mind when our children take off their clothes at a family barbeque. Such as the woman in the public restroom who says “I understand” when our children start screaming because someone flushed a toilet or started the air hand dryer. These are the compassionate people who get it, and NEHBM of the fact that they do.

Our family has been blessed with many people like that over the years (including all three of the ones mentioned above). We’ve also been blessed with some truly wonderful friends. Several years ago, in his quest for friendship, Nigel discovered The Goonies and picked a few boys from his Scout troop to be his group of friends, like he saw in the movie. A few times a year, they would come over to our house to hang out, and Nigel would have them sit on the couch and watch The Goonies while he recited the lines and assigned them roles to play. And they would be compassionate good sports and watch the movie with him, attempting to act out the parts as he directed. But, of course, things change. In recent years, one of the three boys opted not to come around anymore, and another one moved out of state, leaving only one to be Nigel’s remaining “Goonie” friend.

NEHBM of that one friend. A couple of weekends ago, Nigel decided that he wanted to ride his bike over to N‘s house (about a mile and a half away) to see if he wanted to hang out. I suggested that he call N first to make sure he was home before he rode all the way over there, so he did. N wasn’t home and Nigel left a message on their answering machine. He had done this before with the other two friends and not heard back either for several days or not at all. Nigel’s disappointment was always palpable. But that night, N called Nigel back. Not only did he say he was sorry he wasn’t home earlier, he invited Nigel to come over after school one day the following week. Wait – did you catch that italicized part? That sort of thing just doesn’t happen for Nigel, and he was elated. So was I. A few days later, Nigel went over to N‘s house, had a fun visit, and rode his bike home at the agreed-upon time. Like any regular teenager might do. Like autism didn’t matter that day. After a lifetime of always being different, that afternoon was such a gift – both for Nigel and for me.

N‘s mom and I have also become friends over the years, and I can’t thank her enough for being the kind of parent we all wish there were more of, and for raising the kids that we all wish there were more of. Cheryl, my friend, thank you so much for all that you are and all that you do. NEHBM.

A Boy and His Voice

I started this blog two and a half years ago, and in that time I’ve had several requests from readers who had an interest in hearing Nigel’s voice, wanting to see (or hear) him in action. I’m guessing that most of them had read some of the earlier posts I’d written about Nigel’s characteristically stoic, flat voice, and either wanted to compare it to their children’s voices or were just curious. Since that time, Nigel’s voice has continued to evolve. It’s been almost two years since I first started to notice voice inflection, an unexpected gift.  And now, well, you can hear (and see) for yourself.

One of the reasons why I hadn’t posted any videos of Nigel before is because I wanted him to tell me when he was ready. I never mentioned it or made any suggestions – I wanted it to be completely his idea. And last week, he posted his first video on You Tube. He filmed himself talking about his new channel and his ideas for it. The time has come, and I am thrilled to share it with you!

As you watch it, keep in mind that this is from a boy whose speech was severely limited before age five, when a doctor asked his name and he could not answer. Ten years ago, I never dreamed that he’d be able to do these things as a teenager, to speak in complex sentences and upload videos to a website. How does a mostly non-verbal five-year-old progress to this point? I had no idea that it was possible because I had nothing to refer to at the time. Nigel was in an intensive, ABA-based program for two whole years before we started hearing spontaneous speech, and we kept him in the program for another year after that. He has continued to receive various services ever since. And it’s all been worth it. Take a look.

I needed a tissue, but that’s just me.  

 

Mainstream

Nigel (in the car on the way to the video store):  What does ‘mainstream’ mean?

I should have known it was coming at some point. But I didn’t. And I felt like a deer in the headlights.

It’s a simple enough word, perplexingly defined by Webster as “the predominant current or tendency of a movement, discipline, etc.” But it’s the secondary definition that we special-needs parents know all too well: “v.t. put (handicapped students) in regular classes.” Yes, that’s exactly what’s printed in my desk dictionary, complete with the parenthesis. And I cringed when I checked it later, wondering if Nigel had heard or read something similar, causing him to ask. Wanting to hear it from me. Wanting to see what it meant to me, perhaps. Wanting to know what it meant for him. It’s something that we special-needs parents mention at IEP meetings and in blog posts and annual Christmas letters (well I do, anyway): Our hopes of mainstreaming. Our relief and pride when it happens successfully. Our sadness and frustration when it does not. I am unfortunately too familiar with the highs and lows of mainstreaming. Sometimes I think we give that word too much power.

Back to the car. Back to me wondering what to say in the second after he posed his question. I figured I’d keep it general, didn’t want to get too heavy. After all, we were going to the video store. The possibility hit me that perhaps he had read the word in the context of movies. So I tentatively forged ahead and said, “Um…mostly it means ‘typical.’ Like with movies and books – what most people are watching and reading. It’s the usual stuff.”

“Okay,” he said, his way of indicating that he understands something. A few minutes later we arrived at the store, and the conversation didn’t continue.

But the box had been opened, and I couldn’t just close it back up. We needed to discuss what was inside. He’s a sophomore in high school (!), he has started attending his own IEP meetings, and he should know. He should hear it from me. So a few days later (processing time for both of us), I went to talk to him in his room one evening, when I knew he would be relaxed, and I broached the subject. I asked him if he remembered asking me what ‘mainstream’ meant, and where he had heard or read it mentioned before. He confirmed that his question was in regard to movies, and then I told him that there was another meaning of the word that I wanted him to be aware of because he might hear it at his IEP meetings or read about it somewhere. I told him that when students have autism or other differences that affect their learning, “mainsteaming” them means that they are taught in the same classroom with other students, but that they often have aides for assistance. I briefly told him of his own mainstreaming history. I told him that some students have difficulty being mainstreamed and are taught in smaller classrooms or homeschooled, and that they are just as important, just as intelligent. They just have different educational needs. I told him that mainstreaming isn’t best for everyone. That sometimes it wasn’t working for him either, and that was okay. We just had to find something that worked for him. And we did, whether it was full-time homeschooling or part-time mainstreaming. It was all okay.

And gradually, over the years, that powerful word lost its influential quality.

Mainstreaming is not about the right way or the wrong way, superior if you are or inferior if you aren’t. It’s not the Holy Grail of education, as I mistakenly believed in years past. I remember the Christmas letter I wrote ten years ago, how I unwittingly glorified mainstreaming by crowing about how Nigel, age five, was finally starting to talk, and I wrote, “We hope to have Nigel mainstreamed for Kindergarten next year.” In fact, he wasn’t mainstreamed until second grade, and that was difficult at best, even with a full-time one-on-one aide. He wasn’t mainstreamed for most of middle school either. And here’s the thing – he’s a better person for it. He has not had a typical education, but he has had a well-rounded one. He has learned just as much, if not more, and he is happy. And I am just as proud of that.