Friday, October 30, 2009

The Last Hardest Year

Maybe I should add “so far” to the title.

My son’s transition to high school was not easy; freshman year posed new problems, but (happily) also brought new skills.

In sixth grade he was friends with twins – newcomers to his school who left after one year. My son was looking forward to reestablishing ties with them at the high school – all of our town elementary schools (which run kindergarten through eighth grade) feed into one high school. He was disappointed when they expressed no interest in picking up where they had left off with my son, having never put the same importance on the friendship as he did.

This was one of the first times when he felt a need to communicate his feelings to peers, and it was a difficult thing for him to do. He was hurt by the fact that they were ignoring him; I think he was also more aware of how hard it was for him to make friends.

For the first two months or so of high school, he was disconsolate. The work load was demanding and the social scene was unfamiliar to him. The therapist (we called him a “talk doctor” when my son was younger) he had been seeing for some time was particularly supportive during this time, and I also let the Learning Center teachers know he was going through a rough patch. (I like to think that this was proactive on my part, and not controlling!) They introduced my son to one of the school’s social workers. He turned out to be the one extra person who was able to get my son out of his funk, by giving my son specific strategies not only to help him talk to the twins but also how to get involved elsewhere in the school.

By Christmas break of his freshman year, he was in a much better place. He let the twins know that he was hurt by the fact that they were ignoring him and they apologized; they had not intended to snub him and really had not been aware of the impact of their behavior. He was still not one to go out on a weekend night with friends, but he continued to play rec league baseball and that helped him cultivate peer connections. Having developed a taste for drama by doing a production in eighth grade, my son auditioned for and won a role in the freshman drama production of "Animal Farm."

Any young teenager goes through a period of finding themselves among their peers in a new situation, and it was not very different for my son. His four years of high school proved to be a true growth period – academically, physically, and in his own self confidence level. Social connections were coming as well, albeit much more slowly than a “proactive” parent would prefer.

Thursday, October 29, 2009

These are the Wonder Years, the Formative Years, Ages 1 through 12...12...12...

A reader (apparently I have a couple!) asked about specific strategies for boosting self confidence for children with social communications disabilities in middle school.

In the case of my son, I thought at the time that these years were harder for his Dad and me than they were for him. In school, he really liked all his teachers, especially the specialist he worked with in the Learning Center a couple of days a week. Although he was not an outstanding athlete, he played soccer, basketball and baseball through our town’s recreation league so had a peer group outside of school. By then, he was too old for arranged play dates, so beyond school and team sports he didn’t really have friends over, or go to friends’ houses. Our town sponsored four or five dances a year for 7th and 8th graders, and my son went to many of them.

He’d come home afterward and usually said it was fun, or at least “okay.” And every time, my husband and I wondered/worried who he talked to there, who he stood with for that matter. There were those who would say to us, “that’s great that he goes; I could never do that when I was his age.” And a little voice inside me would be saying, “Well, he doesn’t ‘get’ that kids don’t usually hang out alone at these events.”

It was not until the last year or so that he told me that he was aware, either at the time or in hindsight, that he had few friends in elementary school. The part of his life that I had thought was harder on his parents was not so great for him either. On his way off – stag – to his senior prom, he mentioned that “At least I know I’ll have friends I can talk to – not like those rec dances.”

His Dad and I never pushed him to go to those dances; in fact, no small part of me often wished he would stay home. I think we knew he would be largely on the outside looking in. Yet of the eight or so dances between 7th and 8th grades, I bet he went to more than half. I don’t know why he went; I don’t know if he’s a more confident person because he went or if it might have diminished his self-esteem.


I do know that by that time, he already had a truly exceptional network of adults who encouraged him and engaged him, including teachers, therapists and family members. Moreover, his peers respected him – even if they did not go out of their way to invite my son to do things with them. There was never any of the teasing or bullying that creeps into the lives of some children with social communication disorders.

That’s not the best you can ask for under the circumstances, but caring empathetic adult relationships can compensate to a significant degree for a shortage of peer friends. For the first few years my son had a cell phone, most of his contacts were family members. He’d go “walk-about” and call his grandparents, aunts or uncles. They were actually good friends to him as well.

Wednesday, October 28, 2009

Step One

They say admitting you have a problem is the first step in dealing with it. Obviously a learning or physical disability is not a problem, but it is definitely something you have to deal with.

My son sent an email last night to his Stage Tech teacher, with words to this effect: I have a nonverbal learning disorder that makes it more difficult than normal to do these types of assignments. Can we meet?

This was after he went to the Internet to search for directions on how to do these particular stitches; he did find illustrations, but they were “too vague” to help him.

These two actions provide me with a good deal of insight into his odds for success in college. First, he took the initiative to try an alternative means to figure out this sewing assignment. Second, he acknowledged his learning disability. And third, he pointed out by saying "more difficult than normal" that this would "normally" be a difficulty assignment anyway!

It isn’t as though we hid the NLD from him for the past ten years; but neither did we ever really discuss the particulars of it during that time. However, last summer as he was preparing to leave, I gave him the write-up with the results of his most recent evaluation, which was really the best written of all the evaluations he has had. It was a clearly written summary of his strengths and weaknesses, the developmental history was right on target, and it ended with four strategies for success in the classroom.

At the time, he just filed it somewhere, and I still don’t know if he read it or even if he still has it. I did verbally stress the four strategies (which included extra wait time for him to formulate an answer, used of a keyboard for tests and assignments, extra time on tests and…hmm; I’ll have to get back with the last one!).

His teacher responded very thoughtfully, thanking him for the heads up, offering some meeting times to discuss it further, and reminding him of the availability of the school’s Learning Center. I assume that the latter will also be confirmed at the meeting he has next week with Disability Services.

Tuesday, October 27, 2009

Slicing a Bagel

My son was making himself a bagel for breakfast recently and I noticed that he was slicing it the “New York” way. I have heard (who knows if it’s true) that most of the Emergency Room visits in New York City on a typical Sunday morning are for hand wounds inflicted by bread knives while slicing a bagel.

A knife with a serrated blade works best for slicing bagels and crusty bread. Since you’re using a sharp instrument, do NOT hold the bagel flat on your palm and slice it toward you. I realize many people do this successfully every day, but it really is not the best way, nor is it safe. It’s usually going to be better if you place the bagel vertically on a counter or cutting board, hold the knife handle – blade down – with one hand and place the other hand over the top of the blade. Guide the knife through the middle of the bagel in a gentle sawing motion to the bottom and pull it apart.

Instructions on cutting a bagel might not be very impressive – can’t anyone slice a bagel, and can’t anyone do that any way they want to? As my son would say, “W/E” (text lingo for whatever); but please be careful.

Monday, October 26, 2009

Giving Up?

Today my son called to tell me that he intended to write an email to the Stage Tech teacher to let her know that this sewing assignment seemed beyond his capability. He told me it felt like he was “giving up,” but I think he intended to send the email anyway.

Some suggestions I gave him: Explain why you’re having a hard time; ask for, don’t demand an alternative assignment; copy the Office for Students with Disabilities in on the email, so they will at least be aware of the challenge. I asked if he wanted me to take a look at a draft, but his come-back was, “if I can be respectful asking that guy not to call me, I think I can manage this email.”

Is he giving up? Is it ever giving up if you’ve tried your best? I think it is okay to concede defeat once in a while, especially when not doing so becomes a major distraction from the bigger picture.

Friday, October 23, 2009

Is Anybody There?

This stirring song from the play and film, “1776,” has John Adams talking to an empty room.

Although the title of the blog is Instructions for life, for those who need the book…although the stated goal of the blog is to help adolescents and young adults who have social communications disorders…although my objective is to help my son be even more successful, I have to tell you – he is not the least bit interested in reading this.

For those who think I am too involved in my son’s life, rest assured my involvement is largely “virtual” – through this unread blog! Someone will get something out of it some day…I hope...

Thursday, October 22, 2009

Office for Students with Disabilities

A few weeks ago, when my husband was picking up my son for the weekend, my husband stopped in to the college’s Office for Students with Disabilities. He was impressed by the people he met, and suggested to my son that he should stop in and talk to one of the intake advisers.

Unfortunately, my husband had the fellow’s name wrong. When my son asked for him yesterday, they said there was no one by that name working there. Still, he set up an appointment to talk about potential accommodations in two weeks.

In the meantime, stealth Mom dropped a note to find out the person’s name and he responded promptly, and suggested that if my son felt he needed to get in sooner, to just call him. I forwarded his response to my son, so he would have the contact information. I hope he will make the call; but – worst case – he has the appointment.

And that’s a good thing. Because when he met with his faculty adviser today, they talked about next semester’s courses…and that was pretty much it. I asked if he mentioned the sewing assignment; no – he forgot.


After about three days of stressing about tying a knot in thread and sewing a seam, I was surprised that he would forget to bring up the subject; could be that it was not the forum to discuss particular classroom problems. In any event, she had offered help to the class for anyone who needed it. At some point, I know he will figure it out.

Wednesday, October 21, 2009

Yes He Can

My son is really enjoying this Ultimate Frisbee. What I had assumed was a pick-up game has evolved into an intercollegiate team, and there is a game tonight against another local school. Though the game roster is limited, he intends to go to support the team and he will continue to practice with them.

But it wasn't all good news. In the matter-of-fact way he has of speaking, he announced to me that he was not sure he could handle the workload of his chosen major (Theater). In addition to the class work, he will be required to have 50 hours of practical work on shows, and he didn't see how he could do it. Not for want of trying -- recall that he was replaced as an assistant Stage Manager for a live production early in the semester. I could not tell if he was looking for an excuse to change majors; if so, I would not be the person to give it to him.

I pointed out that any major would be difficult and would require a tremendous amount of work on his part. I reminded him that most days when we talked he assured me that he did not have a lot of homework. So was he fretting about the potential for a heavy workload? I suggested he back-burner this decision, and cross that bridge when he comes to it. Clearly the workload right now is manageable.

I think one of the things that precipitated this crisis of confidence is that he is currently working on a sewing assignment for a Stage Technology class. Because of fine motor delays, my son has used a keyboard for written assignments almost since he learned his letters; it doesn't surprise me that he's having trouble with sewing. But he is also letting this experience cloud his judgment. He seems ready to give up over -- not even one class, but one assignment in one class. Moreover, this was the same class he had come out of only a week or so ago, when he called to tell me it was so good we should be paying more tuition (gee, thanks, Stretch).

I shared with him that he was used to having a real support net that was always under him for the past twelve years -- so unobtrusive that he barely knew it was there -- until now, when it's gone. He just said to me that maybe he was over-confident about being ready for college and "should have taken a gap year."

NO!! I know he is ready for this. But the disability for which he received support services all those years is not going away. The only difference now is that he has to ask for that support. Once it's set up, I think it will be invisible once again, a part of the fabric of his life. The college has a disability services office that has his most recent evaluation (mid-junior year); and my son's academic advisor happens to be the teacher for that Stage Tech class. I told him that either of those would be good places to start when he was ready to ask for help.

He called earlier today to say he was going to the Office for Students with Disabilities and "what do you think I should say?" I offered some openings, which is usually all he needs: Tell them you are feeling so overwhelmed by the workload in general and the sewing assignment in particular, that you are questioning whether you can get through this at all. Tell them you've had great people to work with in the past, including a private therapist and a school counselor in addition to academic support. Ask for direction.

Unfortunately he just called again to tell me that he could not set up an appointment with anyone until November 3; sarcastic remark: "that was helpful." He does have a card and phone number for one of the people who works in that office that his Dad got a couple of weeks ago and I told him he might want to call that person and ask if there's any hope of getting to talk to him sooner. Again, in his matter-of-fact manner, my son let me know that he had set up an appointment with his faculty advisor for tomorrow at one. Perfect! He seems to have everything pretty well under control; but he either doesn't realize it or he doesn't believe it.

Tuesday, October 20, 2009

How to Say Leave Me Alone, Nicely

The man my son met at the bus station a week or so ago has called him several times a day since then. He has sometimes left a message, but mostly he has not. My son stopped answering the calls after the first two.

This is an unusual situation for neuro-typical people, but – I suspect – much more common for our trusting children and young adults with social communications problems. My son was torn between wanting to be nice to someone who needed a friend, and wanting to ignore a man who was pretty much stalking him. My son never felt threatened, but he did start to get the sense that this friendship was destined to go nowhere. He did not want to hurt the man’s feelings, but the constant calls were getting to be a distraction.

I suggested to my son that he let the man know that classes were demanding and he was very busy – too busy to meet, and even to busy to chat on the phone. I suggested that he close the conversation with “Maybe we’ll run into each other downtown some time.”


My son made that difficult phone call last night. He waited until after 11, thinking the fellow would be sleeping and he could just leave a message, but he answered and they talked for a few minutes. I think my son handled it perfectly. He felt badly, but he also felt relief. I did too.

Monday, October 19, 2009

Editorial Comment

In our local paper this past Saturday, Doug Flutie wrote an editorial regarding the lack of health care coverage for services that autistic children need (Boston Globe, 10/17/2009). Doug Flutie’s son, Doug Junior, is autistic; and the former star quarterback has been a staunch advocate and fundraiser for autism research. He pointed out that, while it has been well-documented that one-on-one speech, occupational and physical therapy are some of the services that improve the lives of children with autism spectrum disorders, the only subsidized services that they receive are through their schools. Most Health Care insurance plans will not cover additional services outside of school.

My family is fortunate. My son’s learning disability does not leave him deep in the autism tunnel. The services he received through our school system were excellent. The services outside of school had mixed results. He has a psychologist who has been helping my son deal with his learning and social issues with phenomenal results. But – as I have written before – the group social skills classes were less successful.


In the forefront today is the teacher who worked at our elementary school’s extended day program who taught my son how to play Ultimate Frisbee, which continues to be his most solid connection to college peers so far.

Friday, October 16, 2009

Why?

My son was hospitalized for the third time in four years in the spring of 2008. In the middle of pre-season “captain’s workouts” in his second attempt to make the high school baseball team, he had to call it quits because he suddenly became unsteady. He made it home and off to the ER he went. They sent him home that night after increasing his Tegretol dosage, thinking it might be break-through movements. His Dad and I knew better and the next day with no improvement we brought him back and he was admitted. It turned out to be a brief stay, as the symptoms subsided. His neurologist identified the way my son was walking as “Parkinson’s gait” and added a low dosage of a Parkinson’s medication.

While he was hospitalized, they ran tests to see if they could get at any kind of root cause to my son’s physiological issues. One result was the discovery of a genetic mutation (a chromosome 16p deletion, which actually has a longer identifier) that was believed to correlate with incidences of autism. While this explains only a small percentage of autism cases, it gives hope for further advances in genetic evaluation for autism.

We were asked to take part in an ongoing study, and I received a letter yesterday that the results of the study were to be presented on October 28th at a Harvard Medical School building in Boston.

For more information, please visit www.autismconsortium.org. The site has links to many additional resources.

Thursday, October 15, 2009

Vulnerability

I think parents whose children have learning differences tend to worry more than parents whose children have no learning issues. In my opinion, as a parent of the former, this extra worry factor is both normal and justified.

My son is much more trustful than other adolescents, and in some ways more naive. Because it is sometimes hard for him to make friends, he finds it easier to talk to people who take the first step.

When he was doing out-patient therapy five years ago, he got in the habit of stopping at Starbucks. The baristas knew him and what he ordered, and one (Steve) was particularly nice to my son. One day my son called me at work to tell me he met a really nice guy at Starbucks. The guy was “in his 30s I think” and they talked about school and “stuff.” My internal alarms started going off, but I was able to get enough details to get the sense that the meeting was benign. Nonetheless, I called the Starbucks, and spoke to Steve, explained who I was (“grande caramel frappacino’s Mom”) and told him about the conversation I had just had with my son. Steve recalled seeing the guy and, while he was not a regular, Steve told me that he seemed okay. I asked him to just keep an eye on my son whenever he came in and Steve said no worries. And then I had no worries (fewer worries, anyway).

Yesterday my son took a bus to a nearby mall. Since he was not sure of the schedule, he ended up waiting about forty-five minutes at the depot downtown. He called last night to let me know that he was able to get a charger and he was all set. And, by the way, “I started talking to this guy who was also waiting for the bus.” The man, apparently in his fifties, told my son that he was learning disabled; I don’t know what else they talked about in that time. But they exchanged phone numbers and last night my son told me the fellow had called him and left a message. My son was not sure if he should call back or not. My gut was screaming “NO!” My mouth said, Gee, that’s a tough call. You’re trusting like Dad and I am very distrustful most of the time. But IF you decide to call him back, please don’t make plans to meet him anywhere alone, please make sure you’re in a public place, and please only in the daytime. You need to be careful.

So today he called me about lost keys (another entry) and told me that the man had called him twice last night when my son answered and called him again this morning and left a message. All of this contact was setting off my son’s own internal alarms. Plus he said the message the man left (“I have something to tell you”) felt "off" to my son. Time for me to put my foot down: "Okay, please don’t call him back and don’t answer if he calls you. I’m sure he will eventually give up, but if he continues to call and you’re concerned, go to the campus police and let them hear the messages."


You want your child to make friends; you want her to be more outgoing with peers; you want him to be part of a group. But not like this. Am I paranoid? Cynical? Or just careful?

Wednesday, October 14, 2009

How to Keep Track of Everything

I suppose if anyone knew the answer to that, they’d be wealthy. The short answer is probably -- impossible! I’ve written about my son’s difficulty in staying organized before. First it was what he forgot to bring home and what he left at school; this week it’s what he forgot to bring back to school and left at home.

He called Monday to let me know that he was pretty sure his iPod was still sitting on his desk at home. Sure enough, there it was. And by the way Mom, could you look around for the new video game I bought over the weekend? I was sure I put it in my backpack, but it’s not there now. Good old Mom found it on the floor of his room, tucked behind the TV stand. Lastly, I got a text from him yesterday saying that he seems to have left his phone charger home – that was right before his phone went dead. And yes, the charger is right on the floor partly under the bookcase, where he left it.

We all do this, and some of us do it more than others. Moreover, in my son’s defense, he has gotten infinitely more careful about keeping track of his belongings. He has not lost or damaged a cell phone in more than two years. I think the problem is rearing its ugly head at this particular time because this is such a major transition for him. It’s one thing to go from your room, to the dining room, to school, back to the house and to the kitchen, for a walk downtown, etc. All of that represents the small world he was in only two months ago. Now he’s pretty much got two worlds to keep track of, and it’s clearly hard.


I’m not sure what the solution is; maybe an oral checklist would work until he gets used to the bi-locating. I should call him on the day he’s coming home and make sure he’s got all his laundry, books, medicine, phone, and any other necessity. Oh, that’s right; I can’t call him and remind him of that because his phone is dead because he left his charger home. Plan B: get duplicates of some necessities. He is on an adventure today taking a bus to a mall, in search of a phone charger that he can leave in his room.

Tuesday, October 13, 2009

Academics First


While my son was home this past weekend, we celebrated his birthday a week early – cake, ice cream, singing, blowing out the candles and presents. We went to a pro soccer game and finished the weekend with a lobster dinner (much to my daughter’s dismay!).

At some point over the weekend…okay, maybe more than once…I asked him if he had any homework he should be doing. The short answer was, at various times, a shrug, a grunt, a “maybe,” or ignoring me. I (half) jokingly told him he better not flunk out, and he replied that he was thinking about flunking out on purpose; which was his idea of a joke.

He just sent me a message regarding a grade on a paper that confirms that he really is serious about his academic performance. I think he’s doing the right thing concentrating on his studies. This grade shows me he’s got the big picture in perspective.

But the devil is in the details. After a virus infected his laptop last week, the Tech Support office was able to restore it, but my son neglected to tell them what files he needed to keep. I followed up with the Tech office to see what they could have done better, in terms of checking for documents; I also let my son know what he should have done. Most PCs have a user folder called “My Documents” where text files and spreadsheets get saved by default. My son should have been aware of that; and obviously the Tech people should have been. Fortunately, there was not a lot to lose at this point in the year, but it could have been a disaster.

Since he had lost not only his recent homework, but also his music and pictures, we had to recreate those libraries as best we could. We also talked about copying files periodically to external storage; and I sent him back to school with one back-up and a box of empty disks.

As he had done in elementary and high school, he had created a folder for the year called “Freshman Year.” Because his schedule is a little more complex than it was last year, I suggested he might better organize his work by creating a folder for each class and keeping all the work associated with a particular class in a separate directory.


He’s been working hard; the rest will come in good time.

Monday, October 12, 2009

Cell Phone Etiquette For All

Every weekday morning and evening I commute to and from my office on public transportation. And every morning and evening I am subjected to telephone conversations that I really don't want to hear.

This is not a lesson only for people with social communication disorders (who, in fact, are probably less likely to be offenders). This applies to the general population.

How can you talk to a friend or family member on public transportation and know that everyone can hear (at least) one side of the conversation? On occasion, the volume has been up high enough and the person was sitting close enough that I could actually hear both sides of the dialog: "OMG! She was so wasted!" "Really? What happened?" "She passed out in the doorway of the apartment and her roommates had to drag her in."

Or how about: "Hi, Dad. How was your weekend?" ... "Yes, I'm on my way to work but I thought you'd be awake." ... "Oh, was Mom there too?"

Are you kidding?? Just a few years ago these conversations would never have been taking place within earshot of anyone else. No emergency, no pressing news to share; just gossip or chit-chat.

By a wide margin, the most frequent offenders are young adults in their 20s or 30s; but this indiscretion is by no means limited to that age group.

For anyone reading this and seeing themselves (or feeling kinship) the first thing that goes though my mind is -- If someone is so bored, inconsiderate (or whatever else might cause this) that they feel the need to take out the cell phone just for the sake of shooting the breeze, I would never hire that person for a job that requires customer contact, colleague contact or just tact. Before you dial or answer, think about who is sitting in the next seat, and hope that it isn't the person you are about to meet for an interview.

The second thing I think is -- Hang up! No one cares!!

Friday, October 9, 2009

A (Not So) Small Victory

I asked my son if he intended to go down to the lounge to watch the Red Sox-Angels ball game with a group last night and he said no. He then added, “A friend is coming here and we’ll watch it in my room.”

I would love to know how that came about. If I find out this weekend, I’ll post about it!

Thursday, October 8, 2009

Honesty is the Only Policy

A curious trait that my son shares with most of those who have social communications disorders is an innate inability to lie. He is usually incapable of even the harmless white lies people tell in order to spare feelings, avoid arguments, or for whatever reason. Once when he was about twelve or thirteen years old, my husband and I were joking about our looks and I commented something like, “I know I’m not a ten – probably an eight!” My son chimed in with, “I think you’re more like a six.” OUCH! Imagine when he meets that special someone and she says to him, “Does this dress make me look fat?” Oh, we got trouble…right here in River City…

The first time my son lied to me he was in sixth grade. (In stark contrast, I think my daughter was in second grade the first time she told me that of course she had brushed her teeth, when she really hadn't). He was sitting on the couch as I was going to get the mail and I asked if he was wearing his retainers. “Yes.” Then as I continued to the mailbox I heard him running to his room to get the retainers. By the time I got back, he was sitting on the couch again. Some parents would be annoyed; I was delighted – and laughing out loud!

Because it is hard for people with social issues to feel empathy, they frequently don’t think about how someone would feel when they hear a truth that casts a negative light on the receiver. My son did not intend to hurt my feelings (and fortunately I have thick skin!) – If you’re a six, you’re a six. It was as though he saw it as a label, not as a description, so why would it hurt your feelings? On the other hand, he himself is very sensitive to criticism. I think this inner sensitivity that he has should eventually help him to understand better the impact his words might have on other people.

The social acceptability of white lies that serve the greater good is an important lesson to learn and practice. Don’t tell your Mother she’s a “six;” don’t tell your significant other that, yes – that dress does make you look a little fat. Before you tell anyone a truth that has a negative perspective, try and categorize it and decide if the person might think it’s nice or not so nice. Putting it into either of those slots might be easier to do than trying to determine if it will result in hurt feelings. It is really an art to be able to lie a little, just enough to avoid a misunderstanding, without sounding insincere. For better or for worse, most neuro-typical people are quite adept at this.


For my son, telling the truth is usually the right thing to do; why would you lie? However, in sixth grade, he discovered that lying could come in handy!

Wednesday, October 7, 2009

Emily Post - Table Manners

Manners can be learned in many different ways, or sometimes never learned at all. At this point in my life, I am still acquiring new behaviors that are the “norm” in “polite company.” Still, such behaviors are not practiced by everyone, and they are not even practiced by all adult “neuro-typicals.”

Between my mother and her sister, I acquired the rudiments of dinner and table manners (and would remember to use them) by my early twenties:

- Put your napkin on your lap when you sit down

- Fork goes on the left, knife on the right

- Eat to left (your bread plate is to the left of your dinner plate), drink to the right (your water glass is to the right)

- Use silverware beginning on the outside and moving inward toward your plate

- Small fork is for salad, larger one is for dinner

- Do not start eating until everyone at the table has been served

- Keep your left hand on your lap and eat with your right (although Europeans eat differently)... and try and chew with your mouth closed

I remind both my children of these conventions frequently, and my son’s most recent refresher was as he was getting ready for his prom. After the basic reminders listed above, I finished with the instruction that not many people need to get, “Use your napkin -- keep the food off your face.” I have to assume that table manners are less important in the college cafeteria (except for that last bit of advice).

Tuesday, October 6, 2009

Increasing Numbers

The print, radio, television and Internet news services have all carried stories yesterday and today about the increased prevalence of autism spectrum disorders. The latest figures put the number of American children with any form of the disability at about 1 in 100; and for boys only, the incidence is much higher – 1 in 58. It is not clear what has caused the dramatic increase, and some have said it is a question of better diagnostic tools and tests, as well as a broader definition of ASD.

Concurrent with these news releases have been anecdotal stories of children, teens and young adults coping with the milder forms of autism, such as Aspergers. There is a cottage industry of “social coaching” for high-functioning autistic teens. They learn how to enter, hold and maintain a conversation; how to make phone calls, how to be a good host for company.

As I read, I made a mental inventory of which skills my son was good at, which he was improving at, and which he was not yet so good at. I think he has learned pretty well how participate in conversations. Although if there are adults around (parents, teachers) he is still occasionally likely to let them take his role, asking the appropriate questions and sharing information.

There were a few things that struck me in one of the articles I’ve read over the past two days. The first was that, try as they might to do and say the right thing, there is about a 50-50 chance that a teenager with a social communications disorder will be “rejected” by a teen peer (although I prefer to think of it in a less harsh phrasing – maybe that the peer would not be fully inclusive). My son was really never rejected in grade or high school; but neither was he included in any particular group when it came to activities outside of school. This actually had an upside, in that my son always worked hard on his homework and graduated from high school as a member of the National Honor Society. Still, I would not have minded seeing an occasional “C” in exchange for a couple of friends he could go to a movie with.


The second thing that I was happy to see was the mention of the social networking site, Facebook. This has become an extraordinary part of my son’s social life. He can connect with friends without the pressure of reading faces or tones. Every child with a social communication issue should create a page on Facebook as they transition to high school.

Finally, I was surprised to see one of the girls in the coaching class say that she’s “always known [she’s] not normal.” What courage! But it makes me wonder how she came to that conclusion, and how her parents react to her saying something like that. I know that children, adolescents and adults living with some mild form of autism spectrum disorder are as normal as they can be. Still, how many times has my son done something as innocuous as stepping away from me when I try to hug him, that made me think, “I just wish he were normal.”

Monday, October 5, 2009

Whose Life Is It, Anyway?

Over the weekend we attended “family days” at my son’s school. Friday night there was a performance by the 57 first year theater students; Saturday there was a reception, barbecue and family carnival.

The presentation and skits that were performed on Friday pointed to just how strong the school’s theater department is. The signature piece was the story of Snow White, during which the students not only rotated in and out of the principle parts, but also played different parts of the actual set – picture 45 or so students playing the queen’s throne room, the castle d├ęcor, and the table and beds in the dwarfs’ cottage.

It also opened the window (albeit narrowly) on how my son was relating to the other theater majors. I can’t say if he is friendly with them beyond the classroom, but he did look comfortable.

On Saturday, I let him know that I was writing this blog. He seemed neither put off nor particularly thrilled, although I think he will eventually check it out. This was not an easy decision for me, but the intended purpose of this is to help him; it won’t help him if he doesn’t look at it; he can’t look at it if I don’t tell him it’s there…


I hope I can stay true to my goal going forward, but it will be a little different, if not harder.

Friday, October 2, 2009

Short Takes

One of my son’s elementary school specialists was telling me (during a recent meeting about my daughter) how determined my son always was when she worked with him. She not only liked him as a student, but she admired him as a person.

The rehab hospital (Franciscan Hospital for Children in Brighton, Massachusetts) that took such great care of him five years ago would like to publish his (success!) story.

The high school speech therapist who -- among other things -- was instrumental in getting my son to stop wearing sweat pants and start wearing jeans (!) called today to see how he was doing in college. She was so happy when I was able to say "Really well!" and could not wait to pass the word on to other staff members who taught him.

My husband stopped by the Office for Students with Disabilities at our son’s college and they are hoping to get to meet our remarkable young man. But he will have to initiate the contact himself. I am hoping this will be the start of another symbiotic relationship – my son has benefited for many years from his work with specialists, but their lives have been enriched by my son as well.

Thursday, October 1, 2009

Shirts

Shirts have never been a problem – like most kids, boys anyway, my son has a few hundred T-shirts (or so it seems). Thankfully, there are not many occasions when a young man has to wear a shirt and tie. Those times when such attire is de rigueur are daunting. Never mind that my son can not tie a Windsor knot; how many kids his age can?

The buttons themselves of a dress shirt are problematic. I’m not sure he has yet gotten out of the house on any of those more formal occasions with the top button buttoned – not even for the prom last spring. We (Dad) would tighten the tie as best we could to hide the open collar, and send him on his way.

The other problem with buttons for my son, has been lining up the button with the correct button hole. In itself, this would not be a big deal. Who has never mis-buttoned a shirt or coat? However, sometimes people with social communications issues don’t notice that they are buttoned wrong; my son would have left the house more than once not realizing it, or at least believing that it was not a big deal. There were many times that we would help him re-button, or (as he got older) tell him to re-button. A more-or-less harmless statement like, “Hon, your shirt is buttoned wrong; fix it, okay?” would bring out the worst in my son. As I have written before, he often is not receptive to criticism, tending to internalize well-meant remarks as an almost personal affront. My son would sometimes respond non-verbally with a whine or a groan. That was two strikes against us (or the shirt, I’m not sure which): the criticism, and the fact that he had to undo and redo a task that taxed his fine motor skills. Over the years, he’s learned to be more careful the first time; he also is both more aware now if it happens and quicker to correct it.

One more note on pants and T-Shirts: the tag almost always goes in the back! After several painful lessons (perhaps more for me than for him), sweat pants, gym shorts, T-shirts, etc. generally get put on correctly the first time.