Because That’s What College Kids DO!

Last weekend my son and his Frisbee team drove to the southern end of the state to participate in a tournament. I went down on Saturday to watch some of the competition and to drive my son home for the night, the alternative being that he would drive all the way back to the school, and return on Sunday for the second day of the tournament.

If I think back to my college days – and I only hung around with “neuro-typical” classmates (in fact, I can think of only one student in the four years I spent at college that may have had a high-functioning form of autism) – what we mostly did was drink. We drank frequently, and occasionally drank a lot. Worth noting is that the legal drinking age in my state at the time was 18.

So I was not surprised, I suppose, to see that several members of the team were sharing a cooler of beer during the tournament. I believe that at least some of them were 21 or older; perhaps not all. It was a beautiful warm fall Saturday and they were playing Frisbee. It could have been my own campus, so many years ago.

But what did surprise me a little was that they were drinking during a competition. I thought they might take it more seriously. I can’t imagine an athlete involved in any other intercollegiate sport having alcohol in the middle of a game. Truth be told, the team played best in the last game of the day!

I watched these goings-on from my chair in the shade, waiting to see how my son reacted, and how the team members that were drinking would interact with those who were not. There was absolutely no pressure put on anyone who was not interested to “just have one.” In fact, my son was laughing along with all of the others when the two teams played “Detonator” to determine first possession instead of flipping. I won’t describe this game – ask your own college-age son or daughter. Suffice it to say that it was funny to them – and I might have been hysterical at another time in my life. Last Saturday...not so much.

My son told me on the way home that the fellow he had driven down with was not drinking. Nonetheless, I was glad that he was driving home with me. I was also glad that he has little interest in "partying;" one less thing for me to worry about.

Learning How to Say "No"

There are a lot of reasons people find it difficult to say no when asked a favor: they are nice and want to accommodate the person making the request if possible (no matter how well they know the person); they are seeking recognition and a higher profile and believe that saying yes is a way to get it; they are too polite to say no when they really want to say no; they want to be liked or at least they don’t want to be disliked; they find it easier to say yes than to open up a potential argument or injured feelings by saying no.

I could go on, I’m sure. This week one of the guys on my son’s floor in the dormitory had a laptop crisis – his was apparently broken (although how you “break” a laptop, short of dropping it, is beyond me). I don’t know if he asked to borrow the computer of any of the other fellows on the floor, but the one who said “yes” was my son. When I spoke to him yesterday afternoon, he told me that someone was using it, and he said he hoped nothing happened to it. I suggested to my son that if he was worried about it (and I was a bit concerned myself), he should go to the kid and “Just say you have two take-home exams that you need to get started on that you hadn’t thought of when you said yes.”

I wasn’t sure whether he was comfortable with this partial truth – he does have two take-home exams, but was not ready to start working on them – and I don’t know what he ended up saying to his neighbor. But not much later he had the laptop back. I was definitely relieved that it was back in his possession; but equally I was proud that he spoke up for himself to get it.

New Resources Firming Up

Last night a local school district hosted a Vendor Fair for special education families. I attended with one goal in mind – that of hooking up with our state commission that serves the disabled community after high school. The fact that my son is doing so well in college despite some setbacks is amazing – but one thing I’ve learned already (and he has as well) is that there will always be some need for some, albeit minimal, support. He is comfortable now, but he is not looking further than next year. My concern is whether he will have the life skills to live independently and get and hold meaningful employment upon graduation.

This agency deals with disabilities that run the gamut from profoundly developmentally disabled, to less significant learning disorders that still interfere with quality of life. There is great demand for these services but the representative of the commission, after hearing the short story of my son’s neurological issues, was fairly confident that he would qualify for support. He told me who to call and suggested that I do so sooner, rather than later to start the clock running on the three month wait time.

I’ve already made the call and we are expecting to hear from them in early August.

BONUS: I happened upon another vendor, the owner of an adaptive driving school; I have been playing phone tag with him for the past week or so. I was able to schedule my son’s first road lesson and the initial evaluation for next Monday morning.

One and Four

At least I think that was the final result – one win and four losses. My son drove down with other members of the team, and my husband met him at the field, watched some of the tournament games and they came home together on Saturday night.

My husband confirms that the biggest problem the team seems to have is a lack of organization: players were running onto the field, substituting themselves; if a player needed a break, anyone on the sideline would just run in. You snooze, you lose and all that!

But my son got some playing time in and it was a beautiful, though warm, day. Their team won one game and played hard against the other teams. You couldn’t ask for much more (well, you could ask…but you probably wouldn’t get it!).

Something to Look Forward To?

My intention today was to summarize an article I found on the website NLD Online (http://www.nldline.com/) 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.

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!

Ultimate Weekend

My son called fairly late on Friday evening to let us know that his Ultimate Frisbee team had been invited to play in a tournament at another school on both Saturday and Sunday of this past weekend. This would mean driving an hour or so each way and each day to the other campus, and the drivers would be other members of the team with cars.

I was very excited for my son to be playing, but hadn’t he told me that a Saturday practice was canceled a few weeks ago because some of the kids on the team had been partying on Friday night?

Well, they played four games on Saturday (winning one); they played four games (I think) again on Sunday (winning two). Both days the team made it safely to and from campus. My son had a great time and was exhausted by last night. I never heard once how boring it was on campus on the weekends.

I do admit that I was worried – I think I covered it pretty well.

Positive Meeting With Faculty Advisor

I am happy to say that my son requested a meeting with his advisor by email yesterday and she got back to him promptly. They met this morning and went through fall course selections (including two communications courses) and also discussed a potential minor in theater. She suggested that he meet with the head of the Theater Department to get further details on requirements.

Senior registration is scheduled for April 5th, which is also when students with disabilities should be able to access the online registration system. I am keeping my fingers crossed that everything transpires as it should!

Mom and the Kids

Each year at this time, I take our two kids to a nearby hotel to swim in an indoor pool, see a movie, shop and eat. Dad stays home and watches NCAA basketball games and (supposedly) cleans the house.

That’s where we are off to this afternoon – although this year my son has a paper to complete for a college class. There’s a different spin on the weekend since he will be bringing his laptop for work, as well as for watching movies – “real life” seems to be getting in the way!

Another Source of Support

Each morning when I get up, I turn on the radio in the bathroom to the all news station and get my fix of what’s going on in the world, what the weather will be, which of my teams won and which lost. For the past couple of weeks, I have also been hearing an ad for the “Best Buddies Challenge.”

The Best Buddies Challenge is a fund-raising race that benefits the Best Buddies organization, a not-for-profit “dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment and leadership development for people with intellectual and developmental disabilities.” Or, as the sign in their office says, “different abilities.” (Please visit www.bestbuddies.org.)

Fortunately for me, Best Buddies has an office close to where I work, and I just stopped by to get further information about their services and the participants. My goal was to see if they had a program that might help my son land a summer job. Even though I walked in without an appointment, the local director spent a good twenty minutes explaining the ins and outs of Best Buddies, how they operate and who they serve. The bottom line is they serve children and adults who are “differently- abled,” providing them with academic support, social connections and employment coaching. And (back to that continuum I wrote about yesterday) there are people served who, like my son, need less support than others.

I had suggested to my son that he look for a summer job while he is home on break next week, and that is the specific help I was looking for when I walked into the Best Buddies office. Since the process of applying for a job can be intimidating and daunting for anyone (neuro-typical or not), Best Buddies might provide a good starting point for his first summer employment as well as a good foundation for job hunting for the rest of his life.

Eye Opening Look in the Eye

John Elder Robison’s book, Look Me in the Eye, my life with Asperger’s has a chapter entitled “Logic vs. Small Talk.”

It’s an amusing and enlightening discussion of some of the problems that arise from the inability to read non-verbal cues, body language and tone of voice. Mr. Robison says that his conversational skills were learned over his lifetime, and he admits that his “inventory… is limited.” He closes the chapter with the fervent wish that people would recognize his difficulty with social language as a disability because, he says, he has been labeled an “arrogant jerk” for saying something incongruous. He “looks forward to the day when [his] handicap will afford [him] the same respect accorded to a guy in a wheelchair.” And he wouldn’t mind the “preferred parking” that could go with it!

Read the book.

More on Leading the Horse

One of the parents in the AANE email threads has written that her young adult son had attended an AANE group meeting, but did not really “like to be around people with AS, who are obviously different.” This is really one of my concerns with getting my son to attend an activity or support group. Nonverbal Learning Disorder is not technically on the autism spectrum, and – without that label – NLD seems less threatening, less of a “disorder.”

Yet some of the behaviors and quirks are very similar. Given that one of my main concerns is my son’s struggle with social relationships, I believe there would be some value to meeting other young adults facing the same difficulties, even though he doesn’t recognize any such difficulties in himself. Moreover, he usually seems comfortable with the social connections he does have – whether through peers (virtual through Facebook, the Ultimate team, etc.) or through relatives and other adults.

I’m hoping that the horse will take a drink some time this summer; he really might like it.

NLD Strengths

In my recent browsing and link-following, I came across an article that itemized some of the strengths of a child (or adolescent or adult) that has been diagnosed with Nonverbal Learning Disorder. They include:

• Early speech, language, and vocabulary development – my son was a relatively late talker, but his speech was clear and his vocabulary has been excellent from an early age. As a result, he can make a strong first impression even though he might come across as shy and an “initial onset dysfluency” sometimes gets in the way.

• Strong memory – when he is focused (which is most of the time), he can remember details, facts and other bits of miscellaneous information that would be way beyond me. I think this is a strength that could actually compensate for some of the social difficulties. He would be the person to solve the argument over who pitched the third game of the ALCS in 2004. (Now you also have to realize that – if he were to read this – he would say “I don’t know who pitched that game.” He might miss the point by getting mired in the way I stated it!)

• Attention to detail – in kindergarten he was very clear that R2D2’s light did not blink in the first Star Wars episode and only started that in the second

• Strong reading and spelling skills, excellent verbal expression and good auditory retention – I believe these are the skills that he will eventually be able to capitalize on and forge a career on.

Dr. Temple Grandin

She is probably the most visible autistic person globally, and she is in the news again today as HBO is set to premiere her story, “Temple Grandin” (HBO, premieres Saturday, February 6). If you have a child on the autism spectrum or afflicted with a social communications disability, you probably have come across her name, even if you don’t know a lot about her. I am one of those parents. However, some quick research in the past few weeks as the movie’s buzz accelerated taught me enough about this woman to make me want to learn more.

The movie appears to have been well received in a critics’ preview: the NY Times critic, Alessandra Stanley, remarks that the film “honors its heroine’s priorities, stressing deeds over tearful setbacks and joyous breakthroughs.” In other words, look at what I did – but don’t look at it as a “breakthrough.”

On Dr. Grandin’s website (templegrandin.com), she notes "I have read enough to know that there are still many parents, and yes, professionals too, who believe that 'once autistic, always autistic.' This dictum has meant sad and sorry lives for many children diagnosed, as I was in early life, as autistic. To these people, it is incomprehensible that the characteristics of autism can be modified and controlled. However, I feel strongly that I am living proof that they can" (from Emergence: Labeled Autistic).

She has co-authored a book (with Sean Barron, also diagnosed as autistic) called Unwritten Rules of Social Relationships. The summary on the website testifies: “This enlightening and thought-provoking book by two of the leading minds in the field, who themselves have been diagnosed with autism, educates both those on the spectrum and their caregivers. Certain to become a classic, Temple and Sean lead you through their mistakes socially and ways they found to improve their lives.” Had I read this book sooner, I might not be writing here today! On the other hand, had I not started this blog, I might not have come across the book, which is now on my must-read list. My hope is that my son will also want to read it.

Temple Grandin is a tremendously inspiring figure for those affected by these disabilities – children and their parents, adolescents, adults… a paradigm for us all. Now would be a good time to learn more about her, to use her books to show us the road to what is possible.

If a Tree Falls in the Forest...

Now what? My son told me over the weekend that he was not comfortable with the blog. He said he felt like he was on display. I pointed out that I never use his name and there are only a few followers. We talked about why he was uneasy with it and he could not really pinpoint it. He did seem to feel better once he realized that there was no specific mention of his identity. I guess because he is so close to it, it screamed his name to him. I told him I would back off trying to get him to read it, and he agreed to let me do my thing here.

It’s cathartic for me, but I’m disappointed that I am not achieving the intended goal – to help HIM succeed. I guess I will keep plugging away for now. What do you think, readers??

More Support

Having looked into many online resources over the past several years, I’ve been on the mailing list of the Asperger’s Association of New England for some time. I mentioned this organization last month in connection with their invitation to my son to write an article for their newsletter (which he has not done). I’ve also bookmarked their web address on my computer, just so I have it handy.

I finally spent some time surfing around the site, which I discovered has a tremendous amount of resources available for children, teens, adults and parents dealing AS (or other related disabilities). Although the site is dedicated in name to Asperger’s Syndrome, many of the links, support groups available and other references provided include Nonverbal Learning Disorder.

The organization offers services for children, teens, young adults and adults, including social activities. The site has links and references to myriad related resources and I highly recommend anyone with an autism spectrum disorder, or anyone who knows someone so afflicted to check this site out. Additional services are available for members, and an annual membership is only $35. Well worth it.

http://www.aane.org/

Sorting It Out

I came across another article that I had saved at about the same time as the NYT article was written, about five or so years ago. This one (“Autism Spectrum Disorders: Sorting It Out”) was published Dr. Martin Kutscher and I found it on a pediatric neurology website (again, contact me if you would like a copy of the entire article).

I’m glad I discovered this one, because it gives a clear differentiation between NLD and other spectrum disorders. Some of the characteristics of Nonverbal Learning Disability that Dr. Kutscher describes are right on target when it comes to my son. Others do not fit him at all. The take-away, I think, goes back to that saying I’ve quoted here before: If you know one person with autism, you know one person with autism.

One distinction between the two articles I’ve cited in the past two days is the age group under assessment. The Times write-up discussed the challenges faced by adults with social communication problems. Dr. Kutscher consistently refers to “children” and – in fact – closes his article with a cheer, “Good luck with the children!”

I just have to look at my nearly-six-foot nineteen-year-old to recall that these children grow up and still face the same challenges, but on a whole new level. It is not the challenge of dealing with a debilitating or possibly life-threatening disease (my sister is currently battling cancer). It is, rather, the challenge of fitting in socially, academically, professionally; the challenge of forming emotional bonds with friends; the challenge of succeeding in life without having been given the instruction booklet.

Does It Work or Not??

Last night I got home and plugged the Ethernet into the laptop and was able to open the Internet. Today, my son left me a voice mail that – again – he was not able to establish a connection with the cable.

Is it my son or is it the laptop? Given the problems he has had with it since the beginning of the school year, it might be the laptop. I’ll try and figure that out tonight.

Coming Back to Haunt Him

Late yesterday, my son called in a bit of a panic. The Stage Tech teacher had sent him an email asking when he would have the sewing project completed. She had not mentioned this in any of the previous meetings with the Office for Students with Disabilities, or with the Provost and Dean of Students. I’m not sure what my son’s expectation was; maybe that she would have already graded him on the progress he had made on the assignment before moving on to the building task.

In any event, I suggested that the fact that she contacted him was a good sign that she would be willing to help him. I think he will be glad to be able to say he got through this particular course successfully, except for the fact that he was brow-beaten into changing his major because of it. Just kidding.

A Fly on the Wall

I know I got a little off-track (again) yesterday; it’s an important issue though, right?

Earlier this week, I called the director of the Office for Students with Disabilities because I wanted to make her aware that our son had agreed to let his dad attend the meeting, scheduled for this afternoon.

After speaking to her about the situation and the concerns that were raised, the director thought today’s meeting more appropriately should be between her and the faculty member, before including our son in the discussion. I mentioned that my son was told that there were about twelve of the twenty-two required courses that would be too difficult for him to pass. And I added that my husband and I were hard-pressed to identify three in the course catalog that had the flow chart for this major.

She (the director) felt there was a need on her part to educate the faculty member on my son’s disability, and also get further information about the course requirements that he would be expected to fulfill. I hope (and this is where the fly-on-the-wall comes in) she will be stressing the importance of reasonable accommodations. She will then meet with my son early next week for further one-on-one discussions. I don’t know if my husband will attend that meeting; right now, he is leaning toward not going, unless our son wants him there.

Potential outcomes of the meeting today:

The director might buy into the teacher’s case that the courses will be too difficult; or she will thoughtfully listen to the professor, equally thoughtfully explain the difficulties to my son, and let him make the decision himself; or she will validate the fact that my son’s learning disability should not impede his capability to pass the requirements of the major. Here is the dilemma: in the first two of the three cases, my son would leave her office next week with a new major, or with no major.

Largely because of his Nonverbal Learning Disability, my son is eager to please and therefore fairly easily influenced. Moreover, his confidence right now is about as low as it has ever been in his life. Finally, although he really loves theater and theater courses, he was wavering on his choice of concentration to begin with. When he expressed a desire to major in theater, I suggested something behind the scenes because I know he’d be great at an actual career backstage. He agreed (see the first sentence of this paragraph). Unlike communications, journalism or Internet writing (other considerations for his field of study), theater keeps him better involved with social interaction with peers – and for a young adult with a social communications problem, that ranks pretty high on the plus side when weighing the issues.