Friday, April 30, 2010

One More Time

There is an Ultimate Frisbee tournament this weekend at another school (sound familiar?). It is only scheduled for one day, so there should not be any problems with sleep-over arrangements. As it stands now, my son is driving to the school tomorrow morning with the other team members. My husband is planning on driving down and meeting him and watching some of the games. They will then most likely come back home together and my son will head back to campus on Sunday afternoon or Monday morning.

Keep your fingers crossed – it would also be nice if they won a couple of their games!

Thursday, April 29, 2010

Something to Look Forward To?

My intention today was to summarize an article I found on the website NLD Online ( about surviving in a work environment with a nonverbal learning disability. It would be better for readers to see the entire piece.

The article is called “Nonverbal Learning Disabilities from 9 to 5”; (c) 1997-98 by Kelli Bond. It offers a very enlightening discussion that underscores the need for some type of coaching when it comes time for people with NLD to embark on a job or even a job search.

The subject has been on my mind since my son heard from the Best Buddies organization that they had been overwhelmed with requests and would not be able to provide any guidance for the time being.

Wednesday, April 28, 2010

Too Much Information

When I was in undergraduate school, I really did not take school seriously – especially in my freshman year. In fact, I took it for granted that this post-secondary education was somehow owed to me; but that’s another story…

So if I slept through a class, or skipped a class for whatever reason, my parents never knew about it. One reason that I never shared that piece of information was because I would have felt terribly guilty and it was easier (on me) to live by the “lie of omission.”

Not so, with my son. Last night he called and innocently mentioned that he had a really hard time getting to sleep on Monday night. When he finally drifted off (I think he said it was close to five AM), he slept right through his morning class. He was quick to add that it was no big deal, because he had already spoken to someone from the class and he had not missed any new assignments.

But wasn’t there a paper due for that class? Did you email it to the professor? Apologize for not being there to hand it in? “No, but I’m going to do that.”

If I had not suggested that, would he have waited to hand in the paper – which had actually been completed by the deadline – during tomorrow’s class?

More importantly, would it have made any difference? With his penchant for honesty, he chose to mention that he had missed a class. Did that give me the go-ahead to mention what I believed his next responsibility was? If the paper had been handed in at the next class, he might have lost credit because it was late -- but I have no doubt that I handed in my share of late college assignments.

Was I offering him some needed coaching? Or was I helicopter-parenting?

Tuesday, April 27, 2010

Powering Through

As his first year of college winds down, my son is dealing well with the amount of work to be done prior to the beginning of final exams. Everything was coming due this week. When he talked about the pressure he was feeling as we were walking last Sunday, I suggested making a list – either in his head or on paper – of what had to be done and when it was due. He could then mentally or with pen in hand tick off each task as it was accomplished.

The list started off on Sunday afternoon with a couple of lab reports, a nutrition report, a health project and an English paper; that’s what I can remember anyway. He also wanted to make sure he dropped off his signed accommodation letter in the Office for Students with Disabilities.

As of this moment and to the best of my knowledge, the only item not quite completed is the English paper.

In his freshman year in high school, one of the teachers in the Learning Center told my son that he should not let his “ADHD” get in the way of success. As I pointed out to my son at the time, and as you can guess by the amount of work he can accomplish whenever he puts his mind to it (which is always), attention deficit is NOT part of his learning issues. Very few adolescents can focus and multi-task the way my son can!

Monday, April 26, 2010

Ultimate Disorganization

And I bring this up because my son did not go to the Ultimate tournament this past weekend. As he was getting into the car at 6 AM he was told that the team was planning on staying over, but they had not arranged enough sleeping space for everyone; they were short three spots. My son has an acquaintance at the school that he could have contacted, given enough notice; but he would have needed more than a couple of hours to do so.

I asked my son flat out if he thought he was asked to stay behind because he was less apt to raise a fuss, and he did not think that was the reason. He said the captains that are responsible for making arrangements are not particularly well organized; and the communication has not been great.

So he did some homework and then jumped on the train and came home Saturday afternoon. My daughter was invited to a party Saturday evening, so we all went downtown and my husband, son and I enjoyed a nice dinner and stroll while not-so-little sister was at the chi-chi party. On Sunday, bro and sis went for a walk; then I ran and walked with my son. We enjoyed a steak dinner and I drove him back to school last evening.

It was actually a really nice weekend for all.

Friday, April 23, 2010

Second Tournament

This weekend the Ultimate Frisbee team at my son’s college will participate in its second tournament, this time in New Hampshire. It will mean getting up early on Saturday and Sunday, when my son would much rather sleep in (who wouldn’t). We talked quite a bit about the commitment he made to this sport back in September. For a short time, I was afraid he was seriously considering not participating in this tourney – but I think he was just looking for some empathy and recognition that he really is committed (sore legs and all). No doubt my son would be more enthused if he got a little more playing time, but Ultimate seems to be no different than any other college sport, club through Division 1: freshmen have to put in their bench time. A couple of wins this weekend would also improve his attitude!

Thursday, April 22, 2010

Self Awareness

Of the six “attributes for success” that I mentioned yesterday, I think the most difficult for my son (and others like him with social communications disabilities) to master is self-awareness. So much so, that he is probably not even aware that it might be a struggle for him.

Those who must deal with a nonverbal learning disorder or autism spectrum disorder frequently have a lack of attentiveness to personal hygiene – a smudge of chocolate or toothpaste left on the face, shoes loosely tied or untied, shirt, half-in and half-out and maybe showing signs of a recent snack. So they must develop a self-awareness of their own physicality, their overall appearance.

Self-awareness, or lack thereof, can also be seen in conversations. Sometimes people with social communication deficits are less able to modulate their volume, speaking too loudly or (as is usually the case with my son) not loudly enough; sometimes speaking too quickly or not clearly enough.

In order to achieve success (socially, in a job, in LIFE), there also must be an awareness of oneself as a part of a social group: How close to stand, how to be part of a conversation – contributing to a dialog without commandeering it, making eye-contact, but not staring. Social awareness, even mastered for one situation, must usually be adapted for another situation. The social group is constantly changing. Fitting in and interacting in a class will demand a different self-awareness and self, than a conversation over dinner in the cafeteria. Walking to class with one or two other students will, again, require different skills than sitting in the dorm lobby with a crowd of other resident students. A sense of self-awareness will guide us on what to say, when to say it and – above all – how to become a part of the social group.

If that sense must be learned rather than being intuitive, you can see how much harder it will be to achieve success.

Wednesday, April 21, 2010

Success Attributes

The staff at the Frostig Center (a Pasadena, California school for students with a wide variety of learning disabilities) has developed material they have entitled “Life Success for Children with Learning Disabilities: A Parent Guide.” In it, they identify six “success attributes” that are prevalent in individuals with learning disabilities who have achieved life outcomes that might have once been thought unachievable. They are:

• Perseverance
• Goal-setting
• The presence and use of effective support systems
• Proactive attitude
• Emotional coping strategies
• Self-awareness

My son has already been cited for his perseverance, having won an award for that quality five years ago after his serious illness. He worked incredibly hard on his physical therapy to get his strength back and on his studies to catch up with his classmates. He has also learned very well how to set near-term and longer term goals, in such a manner that he will be able to attain each goal he sets. By focusing his energy on the near term – finishing this term paper, getting to that workout – he is able to maintain his perspective on what is important now and how that will help him in the future.

He continues to hone those other attributes which, as a young adult, he is only beginning to develop. He had been given effective support systems throughout his elementary and high school years and really learned how best to use them. However, at the college level, such supports are not handed to him gift-wrapped; although they might be available, he needs to be proactive to get the highest and best use from them. When he was besieged with doubts and depression over the recent Easter weekend, he learned that one of the coping strategies that will get him re-grounded is a physical workout in the fitness center. He is still searching for other strategies. As for self-awareness, my son struggles with that; and he also struggles with his self-awareness as it intersects with peers, in a social circle.

Tuesday, April 20, 2010

Tell Us How You REALLY Feel!

Recently an email thread came along asking about certain colleges and how accommodating and inclusive they are, especially regarding potential students with disabilities on the autism spectrum or other social communications disorders. With the name deleted, here is my response:

I do not have experience with any of those schools, but my son (NLD) is currently a freshman at [Anonymous College] and their disabilities office and faculty leave a lot to be desired. At this point, we are hoping he will treat [Anonymous] like a junior college experience and transfer after his sophomore year (despite the difficulty that transitions can mean). I wish I had done a LOT more questioning of disabilities services before he decided on a school. In fact, he chose [Anonymous] only for their theater program and was "encouraged out" midway through his first semester. TERRIBLE

Bottom line is -- keep grilling them and know what support your son will have access to!!!
Good luck!

Was I too harsh?

Monday, April 19, 2010

Birthday Weekend

Our daughter turned 13 last week and for the next six months we will be parents to TWO teenagers. Interesting times.

I bought a book for my son through Michelle Garcia Winner’s website – Socially Curious and Curiously Social. She wrote it (with Pamela Crooke) as a guide to social thinking for adolescents and young adults. When the book arrived, I flipped through it quickly; the reviews were good and it seemed thoughtfully targeted to reach its intended audience.

I remember the day of my son’s graduation last June when a few friends stopped by; He remained on the periphery of the conversation, content to let the adults interact with his peers. When I gave him this book, I told him I was thinking of how hard it seemed for him on that particular day. Not that he struggles with peer interaction ever day; he clearly manages well at school, especially with the other Frisbee teammates.

I asked him to at least read the introduction, and if it rings true and sounds familiar, he might read further. A bit to my surprise, he was very open to doing that and said he’d take the book back to school with him.

Hopefully, when I get home from work tonight I won’t find it on his bed…

Friday, April 16, 2010

Coming Clean

As we approach the four-months-past-Christmas-mark, the guilt is overwhelming me. It’s time to come clean, knowing that at least one of my few faithful readers is going to (hopefully) have a good laugh.

Last fall, I wrote more than once about the issue my son was having with losing his personal toiletries by leaving them in the bathroom in his dorm. Someone suggested an organizer from LL Bean, and someone else bought it for my son for Christmas.

We returned home in January from a holiday visit with family, and I (AM PRETTY SURE I) showed my son how convenient and handy the organizer would be – with pockets for razor and shave cream, shampoo, toothpaste and toothbrush, etc.; it also had a hanger that would fit over the shower rod and over the rod in his closet. I imagined shampoo never to be lost again, used all the way to the bottom of the bottle.

It did not quite work out that way. To this day, we are not quite sure whether the organizer got lost as soon as he got back to school, or even BEFORE he returned to school. How embarrassing is that? We looked everywhere; it is slightly possible that we left it in Indiana, but I really think I showed my son how to use it after we got back home.

Not ready to admit defeat with what I believed was a really good concept, I finally called LL Bean in February or early March and ordered the exact same organizer…which was delivered a week or so later to the wrong mailbox ...and therefore sat there for another week or more. Finally my son retrieved the package.

I’m not sure what he did with it – yesterday afternoon he called to tell me that he was going for a walk downtown to pick up a new bottle of shampoo – the half-full old one was missing.

Mea Culpa!!

Thursday, April 15, 2010

How About That

Following an Internet link for Nonverbal Learning Disability, I came across a case study first published online in November 2004. It’s a really interesting article discussing the differential diagnoses involved when a child presents with symptoms of Asperger’s Syndrome, Nonverbal Learning Disorder as well as Attention Deficit Hyperactivity Disorder. Copy and paste the link below for the full article:

The doctors presenting the study offer a clear discussion of the differences and similarities of AS and NLD. As described by one author and in the DSM-IV, Asperger’s is characterized by “severe…impairment in social interaction, with…repetitive patterns of behavior.” NLD, on the other hand, is a neurological condition, involving dysfunction in the brain’s right hemisphere that causes deficits in “visual-spatial organization…motor functions, social skills and executive function.”

The “how about that” moment came when I realized one of the authors was the mother of one of my daughter’s classmates! I should really get in touch with her.

Wednesday, April 14, 2010

Reason For Hope!

From the blog I sometimes follow by a mother whose son also has NLD:

“ I'm so proud of [my son, who has just gotten his driver’s license]. Having Nonverbal Learning Disorder means that he has visual-spatial problems. That, combined with anxiety, doesn't bode well for driving a car. Throughout his Driver's Ed programme he was rather anxious while driving and a little timid. As he went along he started gaining more confidence and getting more and more comfortable. He still is very cautious, but I'm not going to complain about that.

"It's very interesting watching him drive as he will still verbalize the "rules" and procedures. As he parks, he talks the procedure to himself as he does it. It's very fascinating to me.”

My son’s learner’s permit expires this summer so we (he) will be focusing a lot of attention of driving lessons!

Tuesday, April 13, 2010


How does someone with an autism spectrum disorder or similar disability get and hold down a job when this is such a difficult thing for neuro-typical people to do?

I don’t know the answer to that. In the past few days I have been on the receiving end of a thread of emails from parents of adults (most with AS) who are living at home without any means of self support. Most are fortunate to have loving families who will do their best to continue to be there for their children as long as they can. But this can’t last forever; parents don’t typically outlive their children. If there is an understanding, patient sibling to step in when the parents are no longer able, then there is reason for optimism that things will work out.

Fortunate are the children with relatively minor disabilities, and who grow up with a measure of self confidence that enables them to function independently. That is where I want my son to be; that is where I believe he is heading.

Monday, April 12, 2010

Social Thinking

In my recent Internet travels, I came across a link to Michelle Garcia Winner’s Social Thinking website ( Dr. Garcia Winner has long worked with children, adolescents and adults with social communication issues and is the author of several books and other published resources. Her website and the information it provides stress the idea that “Social thinking is required prior to the development of social skills.” Social thinking refers to the ability to take an active part in a dialog, after a quick, nearly instantaneous consideration of “the points of view, emotions, thoughts, beliefs, prior knowledge and intentions of others.”

While this is ingrained for neuro-typical people, it is far from intuitive for people with social communication disorders. My son is not great at contributing to a conversation with peers, but he has gotten better at listening and determining an appropriate comment. However, I believe that he would still need coaching in order to walk into an establishment, ask if they might be hiring and fill out a job application.

I was hoping that coaching might come from the Best Buddies organization. Not surprisingly, they are swamped with requests. However, his contact there sent my son information about a summer camp that might be hiring. The camp is aimed toward helping children with learning and/or intellectual disabilities become more self confident, through drama and play. I suggested that he had nothing to lose by completing and mailing the application. He has the advantage of being a young adult who has coped with similar challenges, and he has a lot of experience working on theater productions, both onstage and backstage.

Short of this camp, there are a lot of establishments in our community that might be taking applications for summer employment. I think with a little direction, he can land something. And Plan B – if he does not get a job, he’ll have more time to concentrate on getting his drivers license!

Friday, April 9, 2010

Two out of Three

Last night my son took a train to North Station and picked up the two tickets at the will-call window. He and Dad had a great time – the home team won and he spent the night at home before returning to school this morning. Unfortunately his roommate was not feeling well and backed out.

Thursday, April 8, 2010

Benefits of Hospitalization

I have written here before of the serious illness my son fought when he was in 8th grade, and how the rehabilitation hospital that he was subsequently admitted to helped him immeasurably ( He and I participated in a fund-raiser radiothon for Franciscan Hospital last year.

When he was asked what the best thing about being in the hospital was, he truthfully answered “Meeting Tim Wakefield.” I had posted right here that the best thing (for me) was the fact that they sent him home stronger and more socially in tune then he was before he got sick. However, let’s face it: is there really any good thing (much less “best thing”) about being in a hospital in the eyes of the person who went through it?

This hospital treats its patients and former patients like an extended family. Over the years, administrators have called to offer my son tickets to various sporting events. Once when my son was out of town, I replied that I would be happy to use the baseball tickets they were offering – but such offers are for the “alumni” only.

So it happened that today my son got an email from Franciscan with an offer of two tickets for tonight’s hockey game. Now the rubber meets the road. He has accepted the tickets, and offered the second to his roommate. So let’s see how well he will manage getting the train or bus schedule to and from the game, socializing through three periods with his roommate (although I would guess there would not be too much of that during the game), and arranging how or where to pick up the tickets!

Wednesday, April 7, 2010

One Way to Deal with Stress

While home last weekend, my son shared that he was feeling extremely stressed and under pressure. There was not one particular thing that he could put his finger on that might have been the underlying cause. It was more a series of smaller things that – as those smaller things can easily do – snowballed into a larger crisis.

As I have written before, he has a long-term relationship with a therapist who is really more of a friend; moreover, he had good people to talk to for four years at his high school, including his guidance counselor, a social worker and some of his teachers. Now that he’s living on campus, he does not have easy access to those familiar contacts.

My husband and I suggested (not for the first time) that he set up an appointment with someone in the college’s counseling office; even if he can power through this right now, there may be a time when he will appreciate already knowing someone there.

We are both confident that our son will make use of that office if he needs it. However, this time he went to the fitness center, where a good workout cleared his head and improved his mood.

Tuesday, April 6, 2010

April is Autism Awareness Month

Just a few titles in the news today:

Not My Boy!: A Father, a Son, and One Family’s Journey with Autism
(former NFL player Rodney Peete)

My Brother Charlie (actress Holly Robinson Peete with Ryan Elizabeth Peete)

The Best Kind of Different: Our Family’s Journey with Asperger’s Syndrome
(former MLB pitcher Curt Shilling and Shonda Shilling)

The Autism Mom’s Survival Guide

(Susan Senator)

"Temple Grandin"

(documentary currently airing on HBO)

"Sing SOS: Song of the Spectrum"

(CD benefit compilation, various artists; expected release date 4/6/2010. See website-

Monday, April 5, 2010

A New Schedule

My son really does not like his current courses very much. I think he said his History professor is "okay", but he finds the other classes a bit tedious and I think he finds the teachers lacking when compared to his high school teachers. He believes they could show a little more enthusiasm and work a little harder to make the classes interesting.

While he may well be right on target, I told him that teachers are less concerned with conducting an interesting class at the college level, and more concerned with covering the required material. There is a degree of seriousness in post-secondary education that he is encountering for the first time. Another step in the growth process I suppose – although I am not sure who decided that serious must be equal or equivalent to boring. In the pursuit of a well rounded college education, there are certain required courses that some students will like (therefore it is an “interesting class”) and others will dislike (to whom the same class is “boring”).

My son registered for the fall semester and seems happy with his schedule – both the particular courses and the time slots he has. I would bet that kind of satisfaction is half the battle of successfully completing a semester; but time will tell.

Thursday, April 1, 2010

Why Do I Struggle With This?

My stated goal in writing this blog was and remains to help my son (and others like him) succeed as best he can. I know there is little he cannot accomplish – I have seen him overcome obstacle after obstacle for 19 years.

But I am still not sure how much of this he wants to hear or how much he might choose to use as a strategy or even how much using any of these suggestions would benefit him.

Case in point: I received an email invitation to a workshop on “Using Social Skills in the Workplace.” With summer approaching and my son hoping to land a paying job, he might appreciate some strategies on navigating a work environment. In fact, I was recently lamenting over how frequently I (neuro-typical!) manage to put my foot in my mouth with a communication blunder at work.

I forwarded this invitation to my son, with a note saying, “Do you think you might be interested in this?” The workshop is geared toward people with Asperger's Syndrome or other nonverbal learning disability. The more I learn about AS, the more I see that my son's NLD leaves him much less prone to anxiety than people with AS or other autism spectrum disorders (if you've met've met one..."). So I half expect him to take offense at some of the suggestions I make.

It’s such a fine line between telling a 19-year-old that they need this type of help – especially when the 19-year-old might not agree – and suggesting that they might benefit.