Letting Go...Strings Attached

Our son has always been hyper-sensitive to criticism. When he was a child, this frequently meant tearful outbursts or -- at the very least -- "the lip." (Every parent has seen this expression, the bottom lip curled out and trembling as a child struggles to contain the tears.) He was especially sensitive to criticism from adults outside his immediate family. He would fret over an offhand remark from a stranger in a store telling him to "be careful" or even an uncle who admonished "don't touch that." As our son aged, his reaction to criticism, even constructive and kindly offered, was less demonstrative but equally revealing. Lately if I try to tell him something I believe he needs to focus on, he might ignore me; he might (half-jokingly) whine in a childish voice, "you don't like me;" or he might choose to verbally end the discussion with his latest catch-phrase, "End Scene." Sometimes, he will be receptive and open, and internalize the message.

And so yesterday, one of my parting comments was, "Keep your face clean at the barbecue tonight." And he answered simply, "Okay."

For children and adolescents with an autism spectrum or social communications disorder, there can be a fundamental lack of awareness of some aspects of personal cleanliness. Whereas neuro-typical people might commonly lick their lips and use their napkins as they eat, people outside the range of neuro-typical might not. As toddlers, they are the messy eaters. But even as they mature, they might need frequent reminders to wipe their mouths. I know my son has a firm intellectual grasp of the fact that a face soiled by remnants of lunch is socially unacceptable; but he doesn't necessarily realize that there is ketchup on his chin. So I've spent many meals over the past eighteen years reminding him to use his napkin. Had Dale Carnegie consulted me for his book, How to Win Friends and Influence People, my first suggestion would have been to keep your face clean.

I'm guessing that there were not a lot of parents dropping off children at colleges over the past week giving such advice to their teenager. Most will have more important counsel to impart. So imagine, if you can, having to worry about those major issues -- drug and alcohol abuse, sexual relationships, study habits, etc. -- and then throw in how to be successful in the cafeteria so your child won't spend the next four years eating dinner alone. If you can see the magnitude of that, you will understand the need I hope to fill here.

Before we left yesterday, two minor glitches arose that required some coaching. We found out as soon as we arrived at his dorm that his room key was temperamental. One of the school's engineers quickly came to the rescue and loosened the lock a bit. It was still hard for my son to get the key all the way in so he could turn it, and he was trying to tumble the lock with the key only half-way in. Once he realized that he had to jiggle it a little and completely insert it, he mastered the lock quickly. The second hiccup was not as easily fixed. The combination lock for his mailbox was very tricky. I managed to open it once, but could not do it again. I told him if he had trouble when he needed to get his mail, he'd just have to find someone to ask for help. Would he have thought to do that himself? Probably -- one thing he has learned pretty well over the years is how to self-advocate in some situations. A very useful tool for him to have.

Drop-Off Day

Much harder than I thought. More tomorrow...

Big Surprise on a Quiet Saturday

(8/29) My son and husband spent a good part of yesterday packing. My son is ready, though nervous. Surprisingly, I found that my husband is not. Although he shares some of the same concerns as I do, my husband is much more emotional at the imminent departure of our first-born, who is -- for all practical purposes -- off to a life of his own.

My son also expressed last night that he was sad about leaving his home town and his current circle of friends. I reminded him that his high school friends will be there as long as he chooses to keep in contact with them, through FaceBook, email, whatever means. But he will be making college friends on a different level. I did not remind him that it will be up to him to nurture those relationships, to hold up his end of the conversations, to insert himself into discussions and come in from the edge.

I think weekend entries will be shorter; less focused on any learning disability, more about the people in the story and how they are coping. At some point, I will provide some introductions.

As the rest of the family sleeps, I'm sipping coffee and contemplating whether this blog will serve the purpose I hope it will. For now it remains unread.

A Bit More on Speech and Conversations

There are certain behaviors that people immediately associate with a spectrum disorder. The most widely recognized is probably failure to make and keep eye contact. Repetitive behaviors are also common, perhaps as a mechanism to keep focused on what's going on, since the eye contact most of us depend on for this connection is so difficult for someone with a social communication disorder.

I remember an incident when my son was still in preschool. As he entered the classroom one morning, a friend welcomed him with an enthusiastic "Hi!" Before my son could respond with a greeting of his own, the other toddler had long since moved on. It was the first clear signal of the combined effect of the learning disability and the dysfluency.

At that time, he was already working with a speech and language pathologist, therapy that would continue right through high school, with practical results. Eye contact is much less of an issue today. He can respond to questions with more than short answers and can usually add his own experiences to conversations. What he frequently still struggles with is adding an appropriate question or comment that would extend the conversation: Someone might ask, "What did you think of the movie?" And he would reply, "I really liked it. I especially liked the part where..." He is much less apt to add what most of us neuro-typicals would add intuitively: " What did you think?"

My son insists that when he's talking to peers and not in the company of adults who might have some influence over the direction of the conversation, he does fine. However, on the day of his high school graduation when some friends stopped by our house for a quick bite of "commencement cake," my son was clearly on the periphery and he was content to let the adults (Dad and I, aunts, grandparents) take the conversational lead. ("So what schools are you all going to?" "Any thoughts about majors?" etc.)

While many parents were having conversations about curfews, behavior, homework and myriad other minor and major subjects, my son and I had conversations about conversations -- the mechanics of having a dialogue. I would tell him: It's like playing a game of catch. Someone throws the ball to you; not only do you have to catch it, but you have to throw it back, otherwise the game ends. And that's just the plain vanilla conversation -- let's not forget facial expressions, tone, kidding, sarcasm and all the other nuances that round out the meaning of the words themselves. After eighteen years, I still feel the need (most of the time) to add "just kidding" when I tease him.

Autism Spectrum

I struggled over this entry. I don't want to get ahead of myself, but this morning presented me with a "teaching moment" -- possibly the first actual instruction! In the end, I decided to put it aside for a later entry and keep on track with further background.

My son's learning disability, Nonverbal Learning Disorder, is very similar to Asperger's Syndrome. Asperger's has been recognized for several years as being within the spectrum of autism disorders, but NLD has not. About a year ago, my husband, son and I volunteered to take part in a genetic study through Children's Hospital in Boston. Early in that process, the women interviewing us for our health histories said that NLD was expected to be similarly recognized in mid-2009. I have not heard whether that came to pass or not.

With the sharp rise in diagnosed cases of social communications and autism disorders, there is a plethora of information available on the subjects. It has become common in everyday dialog to hear someone mention a child they know of that is "on the spectrum." Like other words and catchphrases that have wiggled their way into our language over the past generation (AIDS and HIV positive, Windows and Mouse, TIVO and Texting), we don't have to stop and define the "spectrum" to which the speaker refers.

Understanding the complexities of their own disability is an important step for a young adult coping with it. I should add here, that my son has yet to read the results of the neuropsychological re-evaluation that was completed over a year ago. Nonetheless, at some point, he will need to know the symptoms and hallmarks of his particular diagnosis. The answer can be different for each person, and it is complicated for our son. In addition to the learning disability, he has been diagnosed with a movement disorder (which has been well controlled by medication he has taken since before turning two), and he has a dysfluency/speech issue as well. It has been identified as "initial onset dysfluency:" not quite a stutter, more of an extended pause before he can begin speaking. One of the recommendations in his educational plan is that teachers should allow him extra time to respond to verbal questions. The social communications problems caused by the NLD are exacerbated by the dysfluency.

Our son has spent most of his life so far in speech therapy of one sort or another, most recently in a "social communications" group setting (more later). As a toddler, he worked with a wonderful therapist who used left and right brain exercises, including "cross-crawling." It was the first I had heard of this and I was skeptical. But one day as I was driving home from day care and he was about three, he said to me, out of the blue, "I love you." Wow - whatever cross-crawling is, Please keep doing it!

Four More Days

I just got a text message from my son: "Four more days." Although by his own admission he is both excited and a little nervous about starting college, lately it's apparently very satisfying to him to make sure I'm aware of exactly how much time remains until our worlds begin to separate.

Part of me wants to jump right in with things he needs to know; but as long as I still have "four more days," I'll say a little more about how I arrived here, thinking I can help.

There have been dozens, perhaps hundreds of books written for educators and parents to support them in helping the children in their care deal with the challenges of a learning disability. From my personal point of view, I've found some of them useful and informative; but I couldn't imagine my son gleaning any practical information from them. Such books typically focused on the diagnosis itself, or on strategies for raising and educating a child with a social communications disorder. What our son needed was practical advice on how to succeed outside the classroom.

All of the lessons that will follow have arisen over the past eighteen years from very specific experiences with my son. I will surely omit situations that might apply to others, which is why a blog might be more effective that a book.

My son was very successful in the one cooking class that he took in high school because he is really exceptional at following clearly written, straightforward directions. So for my son, and others like him, I hope you will find here directions that will help you be successful in Life 101 and Advanced Life.

A Late Start

I'm not exactly sure where to start here... Plan A was to write a book for children and adolescents with social communication disorders. Too late for that now, since my son leaves for college in five days. Would he have read a book of "Instructions For Life?" Probably not. But the past fifteen years or so have consisted of an enormous team effort to give him exactly that -- primarily from his teachers and family. I am not at all sure how much he actually absorbed in those years; I suspect much more than I sometimes give him credit for. But there is still a lot to learn, so here I go...

My son was about 8 when he was diagnosed with Nonverbal Learning Disability ("NLD"). NLD is one of several social communication disorders that are on (or near) the autism spectrum. If you view autism as a tunnel, with profoundly autistic children and adults deep inside, those afflicted with NLD are very close to the edge, but not quite outside with the "neuro-typical" population.

People with NLD generally have difficulty with organizational skills, and can struggle in school with certain comprehension tasks, including written test and assignment directions. Verbal explanations can help. We were fortunate that our school district was well-equipped to give our son the support that he needs. He has been very successful in the classroom.

But this is to be mainly about pragmatic skills for Life, not the educational subset.

The neuro-psychologist who did the testing explained to my husband and me that our son would always be the child off by himself on the playground. I want to use this blog over the next several months, or years, to help him be as successful socially as he has been (so far) academically. I'd like to see him graduate from College, not only with a degree, but with a nucleus of friends with whom he'll be able to socialize, bond and form long-lasting life partners.