Dennis Lehane on Writing

In conjunction with the release of his newest book, I heard Boston iconic writer, Dennis Lehane, speak this past week.  He said if you want to write, you should write; not talk about writing, or read about writing, or study how to write, or join groups of writers for support.

I just want to let my readers know (both of them!), that I am not stopping this blog. However, I need to put it on hiatus for some unquantifiable period for two reasons:

First, I am still in the hunt for a new job. Although I have been finding a lot of appropriate opportunities, this seems to be taking longer than I would have hoped!

Second (to tie the sabbatical to the focus of the blog), my son is more than halfway through his third semester in college, and he is doing exceptionally well. Many things have gone right for him: the Disabilities coordinator and he have found a rhythm of regular meetings and my son appreciates the support. He has successfully changed his major to Communications and also has a faculty adviser who actually is in that department. He celebrated Halloween with about fourteen other guys by going to the downtown area in costume. While my son was (probably) the only one who had not had any alcohol prior to going downtown, he was accepted by this group of students. I think this is due in no small part to his freshman roommate, who continues to make sure my son is included when guys from last year’s dorm floor get together.

So…more to follow when I am once again gainfully employed and back in my own rhythm.

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.

First Impressions

Today as part of my job search efforts, I attended a workshop on interviewing. One of the critical points the facilitator stressed was the importance of first impressions. In fact, he mentioned that it would not be a bad thing to arrive early for an interview, thereby allowing time to run to the restroom and make sure there are no signs of breakfast between your teeth or on your clothing.

If you’ve been following this blog, you can see where this is going – there has always been a good motive to the fact that I hound my son about a clean face and general self-awareness when it comes to manners, cleanliness and hygiene. I am almost ready to concede that he no longer needs my reminders.

Approaching 20 years old (next month), he is very good about using a napkin at meals, carrying tissues, etc. He doesn’t leave the house without washing his face, and I assume the same goes for leaving the dorm.

As has always been his “MO”, he arrived at an understanding of the value of making a good first impression in his own time; but arrive he did.

Little Things Mean a Lot

The day (earlier this month) that we spent several hundred dollars in the College Bookstore was a little hectic. We worked with a salesperson to find my son’s texts, but it turned out they picked up the wrong book for one of his classes. He only realized the mistake on the day after the last day to exchange books for a full refund. The bookstore sales people were not willing to take the book back. He called and let me know and I coached him on how to approach the sales people about the return and he marched back to try again. He texted me later: “No luck @ bookstore.”

I was able to talk to the manager and she very patiently explained their policy; I very patiently explained why this $117 book was an albatross. She compromised by offering a full credit for the price of the book, assuming it was in brand new condition. It was; and today my son called and let me know he had gotten the credit. I am thrilled that someone at the school was assuming their share of responsibility. [Being the parent of a young adult with NLD, I asked him to keep the refund someplace safe so he would not lose it! ]

In the meantime, my letter to the President of the school regarding the lack of professionalism from the Office of Disabilities generated an unexpected and unwanted response. Instead of calling my son, the director called me. I have been a little busy with my job hunt to return her call, but I find it very telling that she chose to call me. After all, I was aggravated by the cancellation, but not impacted by her thoughtlessness. I think it would have been more considerate of her to call my son to apologize for her mistake and offer an explanation to him of what might have happened (details not necessary); and perhaps offered to meet with him sooner than September 30 as a peace offering. Are my expectations too high for this school?

Sometimes You Just Have to Vent

After posting yesterday, I realized how distraught I was over the level of professionalism exhibited by the OSD at my son’s “university.” Before I could stop myself, my fingers had typed a letter to the president! Unfortunately, I do not hold high hopes that she will reply.

The more important thing is that – learning disability aside – my son has gotten off to a fairly smooth start in his second year. His new roommate, he says, is nice but pretty quiet. He likes his classes, especially the communications courses. He believes the Public Speaking course will be the most challenging; but I reminded him that if he has to deliver prepared speeches, he will do fine because of his acting experience. Ex temporaneous speaking is more difficult (partly because of the dysfluency, but I think speaking off the cuff in front of a group is a challenge for most people).

He is in a brand new, sophomore-only dormitory which is truly beautiful; the dorm has its own cafeteria and my son has informed me that the food is much better than it was last year. There are two resident faculty members who are there to organize academic support groups (I think they have other responsibilities but I am not quite sure what they are). He is involved once again with the Ultimate Frisbee Team. However, he has found the practices physically demanding and he is not sure that he will stick with it for the full year. I hope he does – as much for the inherent social connections that it provides him with as for the exercise. He has committed to staying on through the first tournament, which is on Saturday, the 18th.

Same Old, Same Old

My son’s State College was granted University status this past summer. This is something the president of the school has been campaigning hard for – kudos!!

But at this point, I have not seen anything in the demeanor of the professional staff that indicates that they are ready to step up to the challenge of “kicking it up a notch.”

I had asked my son to arrange an interview with the director of the disability office because last year he learned how hard it is to schedule time with her. He did so and she confirmed an appointment for September 2 at 3 PM. On his agenda, my son wanted to discuss finalizing the change in major; getting a departmental faculty advisor from Communications; get accommodations for the semester squared away; inform her of the fact that he has now hooked up with our State’s Rehabilitation Commission office in order for him to get additional support in future employment (more about that another day); and finally, how he might go about finding a job on campus. Although the last item does not fall within her purview, any tips she might have offered him on where to go or who to see would help.

Unfortunately, although the school may now be a “university” the Disabilities Office remains the same unprofessional bureau that it was last year. Not only did she not show up for his appointment, she did not notify him of the cancellation. When my son arrived, the only thing he could accomplish was getting the accommodation letter for his professors. He was told to reschedule and the soonest he would be able get in to meet with her would be September 30. Unbelievable.

Sorry - Major Distraction!

In keeping with the goal of this weblog, let me tell you once again that my son is really doing well this summer. He has renewed his driver’s permit, and I went out last Saturday with his instructor and my son really did well – I was suitably impressed! He played Frisbee a couple of times a week and went out afterward with the group once or twice. He met up with a friend from college who has been living nearby for the summer, and they tossed the disc and hung out for an afternoon.

He has now left with his sister to visit family on the Left Coast, and we well meet in the Midwest in a week and a half to visit with grandparents and other family members before we drive home.

The distraction of the title is the loss of my job, in this difficult employment market. We are moving forward with the planned vacation and I already have several irons in the fire that I will follow up on before my husband and I leave. I will remain tethered to the job search by my cell phone and the laptop we will be traveling with!

My son resumes classes on September 2, at which point I hope to be able to pick up the blog on a daily basis once again.

Rolling Along

Summer has consisted of increasingly successful driving lessons and late nights. Last Friday after Frisbee, my son texted that he was going out for ice cream with some of the players. Little things mean a lot.

He is not without his stress though. He is anxious for school to start in the fall for the (not so) simple reason that he feels that there are so many loose threads in that part of his life. He is overflowing with “What ifs.”

What if I don’t like the communications course?

What if I like them but they won’t let me change majors?

What if I don’t like the major?

What if I don’t make the Ultimate Frisbee team?

What if I don’t get along with my new roommate?

What if I can’t decide what I want to do with my life after college?

All I can do is remind him how well he managed in his first year and how much he has achieved over the past twelve months. I am hesitant to hang too much emphasis on his social activities this summer – which is apparently no big deal to my son!

There is more to the final question than would appear at first blush. The fact that he was not able to get a paying job weighs heavily on him. He was very disappointed that the connection to the Best Buddies organization proved to be fruitless when they were overwhelmed with requests from clients with more debilitating problems. On the one hand, it’s encouraging that my son is much better equipped to succeed on his own; on the other, his Nonverbal Learning Disability is a real impediment to learning those basic “how do I apply for a job’ skills, even before the “how do I get and hold a job” skills.

At the end of the summer, he will meet with a social services provider and we hope that this connection will address some of those concerns.

In the meantime, he drives…he goes out…he conquers!

Shedding Light on Why I Write (I'm a Poet!)

I began, and continue this blog as a means for my son and others with similar social communications problems to better understand some of the nuances of life in a social context.

The “why” of creating the goal is much more difficult to put in a public forum. This little blog is not only open to my son for reading, but I want him to read it; I want him to learn all the little things that are second nature to everyone else; I want him to know that he is smart and strong and loved and that there is no doubt in my mind that he will be happy and successful in life. Knowing he might (will?!) read this, how open and honest can I be in revealing my fears?

I fear, for example, that he will continue to struggle to make friends and cultivate relationships with peers, that he might not understand the unspoken guidelines regarding how to get and hold a job upon graduation from college, that this learning difference will hinder him from a having a fulfilling life.

I have written here about the email threads I receive through my membership in AANE, a local non-profit organization dedicated to providing resources for children and adults with Asperger’s syndrome or similar disabilities. Some I read and breathe a sigh of relief that my son does not have those particular problems, but many – especially those that touch on peer interaction – touch my heart as I see him struggling in a similar plight. Following are short edited excerpts from parents and AS/NLD young adults to illustrate these struggles.

Question: Just wondering if anyone's son has found a long term girlfriend?

Discouraging Responses:

My son… has not had a girlfriend. Not even a date. We tried E-Harmony but it didn’t work out so after the 3 months I discontinued. He is really depressed about not having a girlfriend.

My son is 20, and to date he has never had even a short-term girlfriend, to my knowledge.

… kind of depressing not having a girlfriend on Valentine’s Day.

[I worry that] life is passing by.… it is especially frustrating because there is so much [to] enjoy…. afraid of becoming the weird middle-aged guy who lives alone and everyone avoids.

And Encouraging Responses:

Even my NT son is finding the same problem out there in the dating world. He's 6'3", blond, slim - doesn't smoke, doesn't drink and has many interests….He's such a nice guy and so nice looking.

Even "typical" people have trouble finding a boyfriend/girlfriend. I have lovely friends who didn't meet their "true love" until later in life

Our kids…need to build up their self confidence and competence in life. When they feel good about themselves, it will show and they will become more attractive to the opposite sex. We know it's a journey and probably a longer process for our kids. Self confidence is a big issue [as is] willingness to get out there and try something new. …encourage our kids to find things they like (or are willing) to do that involve other people. It doesn't matter if there's an attractive potential mate that the activity. Getting to know people can bring about introductions, and also build self confidence.

…have a friend who is about 55 of 56 who is NT and is just getting married for the first time this July. He is a very nice person, funny, loyal, good job, just an all around nice person but it took this long till he found "miss right" so I use that as my guide for my son when the right one comes it will happen.

On College and Peer Relationships:

He is desperate for social interaction…his train of thought is that his roommate at school would be his best friend...

…thinking of closing his Facebook account because ”what’s the point? No one ever writes on my wall or asks me to be friends.”

[The] opportunity for down time [living at] at home has been a really important contributing factor to [my] confidence and success at college.

[I’m] looking forward to finishing [community college]… so [I] can transfer to a live-in school. …loved college.

If you are reading this and you are neuro-typical, and your children are NT, I hope these short sentiments give you an idea of life on the other side of typical. This is why I write. My son told me fairly recently that there were times during high school that he felt “alone.” Given that he mentioned this while sharing that some of the fellows he had met in a group setting had been pretty horribly bullied, I am glad he did not go through that ordeal. But how much better is it to be ignored?

This summer my son has been out until relatively late several times and I am rejoicing. He has always hit developmental milestones at his own pace, and I hope that this is just another such instance.

Reality Check

Things continue to go well this summer. My son’s driving skills are improving; he joins a pick-up Ultimate Frisbee game two or three days (or nights) each week; he and his father go to the local YMCA to work out once or twice each week; he is involved with the small group of college guys with similar issues (although my son’s sense is that the other two men have different, and perhaps more debilitating, issues than he does); he sees his long-time therapist/friend once every week or so; he does his “walkabouts” daily.

But under all this progress is a learning disability that doesn’t go away. It shows itself subtly, though in a manner that impacts my son’s life in an anything-but subtle way.

In his efforts to find a job this summer, he filled out several applications online. The most recent one was for a drug-store chain where we had seen a “help wanted” sign posted at the outlet in our neighborhood. After he completed the standard identification and background sections, there was a series of multiple choice questions to be completed. Once during this part of the process, he said to me “I hate these questions when they don’t have a ‘middle-of-the-road’ answer.” There were four response choices, so – whatever the question – the answer was pretty much a definite or weak ‘yes’, or a definite or weak ‘no.’ I didn’t look at the questions, just told him to answer as best he could and not to worry about it.

WRONG! Live and learn.

He decided to go into the store last night and find out about the status of his application. After checking, the manager told him that the questions at the end of the application are designed to measure how a candidate would deal with stress in customer service situations. There was a certain minimum score that had to be achieved to merit bringing in the applicant for an interview, and my son’s score was below that minimum. He could reapply after ninety days.

Now here is the dilemma: was it better that my son answered the questions honestly and effectively avoided a job that might have exposed him to a stress level that he could not handle? Or would he have been better off if I had looked over his shoulder and coached him on some of the answers, giving him the reassurance that – at least on paper – he’d react differently than perhaps his gut was telling him?

As we walked home from the store, he seemed to be okay with what the manager had told him (but I’m really not sure he was, and I’m glad he is seeing his “talk doctor” today). I asked him if he felt better knowing why he didn’t get called, or would it have been better just not to have heard from the store; he said he thought it was better to know one way or the other. Then I told him that, knowing in hindsight that the questions were designed to figure out how he might cope in a stressful situation, it might have been better to take a more confident position on some of the answers, even if he wasn’t being completely true to himself. However, I had to add that maybe it was for the best that he was honest. He knows what he is capable of. In the event of a misstep on the job, it is frequently difficult for anyone to tolerate criticism or correction by a manager. He will eventually experience on-the-job criticism, but perhaps today that's something he's not ready to manage.

In his first year at college, it seems to me that he was certainly criticized more than complimented (he might not agree), and I’m not sure what that has done to his self-confidence. I do think further coaching and development might be warranted to ensure a successful first job experience.

Summer Routine

Our family is settling into a reasonably stable routine for the summer, and I am getting accustomed to the late nights of Ultimate Frisbee on the Common. The group meets on Wednesday and Friday evenings, and there is also a game on Sunday afternoons at another location. My husband and son try to get to the local Y to work out once or twice a week in between Frisbee (for my son) and tennis (for my husband). And my daughter is finishing up the school year, and doing a lot more “hanging out,” as she asserts her 13-year-old independence – to a point. All in all, not a bad life!

My son continues to improve his driving skills. Whereas the instructor has been picking him up and taking him to and from a quiet neighborhood for practice, this past Saturday my son drove the car back to our house.

He is also involved with a small group of fellows in college with similar disabilities. The group meets once a week, and after the first meeting they went out to lunch together. He seems to like it, but I’m not sure how committed my son is to sticking with this group. This week it conflicts with a driving lesson, so he won’t make the meeting.

Over the weekend, the four of us participated in a 5K fundraising run/walk for the benefit of Franciscans Hospital for Children, where my son spent several weeks in rehabilitation after his eighth grade illness. We exceeded our fundraising goal by a considerable amount; my daughter beat me by four minutes without even training; and my husband and son spent the time walking and talking – World Cup, basketball, school, books, movies…who knows what!

Harder Than We Thought

Driving will be much more of a challenge for my son than I had thought; and we’ve come to a point where he will have to decide how committed he is to getting his driver’s license. His permit expires in mid-July, and we’ve been able to schedule two lessons a week. At this point, he has about six hours behind the wheel on the road. Given that learning to drive is all about practice, he won’t be able to get enough practice in with this particular teacher prior to the permit expiration date.

I spoke to his instructor, and he told me my son is still a little nervous in any traffic and he thought it best not to push him too quickly. This particular instructor has a fairly busy schedule with several other clients this summer. We are considering picking up some additional instructional time with another school; however, it might be difficult to find another instructor so keyed into my son’s learning style.

In the meantime, my son, husband and I discussed the extent of my son’s determination to get his license. If he wants it, he will have to re-take the permit test in July. That will give him an additional two years to get as much practice as he needs to achieve competence and confidence. I would not have been surprised if he backed down, since we live in an area with easy access to reliable public transportation. However, he came to the same conclusion that my husband and I came to: he needs a driver’s license. It’s not only a convenience, but – depending on where one lives – could be a necessity.

So out comes the manual once more; the written test should not pose a problem. Armed with an additional two years to learn, he will be able to proceed and succeed at his own pace. No rush.

A New Experience (for ME!)

I have often used this space to lament the fact that my son has never really had anyone to just hang out with, especially at night.

Last Friday the whole family went to dinner in Chinatown, so that we could check out one of the Ultimate Frisbee pick-up games that my son found listed on the Web. We walked to the Common, and arrived about 15 minutes before the posted 8:30 start time. I took the bull by the horns, and asked a couple of Frisbee players if they were playing an organized game or a pick-up. Both people I asked said they were organized; but the leader of the second group invited my son to join them. The players comprised a youth group from a nearby church, and ranged in age from late middle school through high school. Once he joined in, my daughter and I wandered around and eventually came upon the pick-up group. They were getting ready to play under the lights of the softball field.

I walked back to where my son was now fully engaged in this friendly match, and let him know that the other group was just forming on the softball field. Since the youth group didn’t have the benefit of lights, I suspected they would be calling it quits soon.

Then, like a good mother of a young adult, I left him; and my daughter and I took the train home. By the time we got there, it was after 9. I explained to my husband (who had gone home a little earlier) that I left him playing with a group, and had given him the info about the pick-up game. But I wasn’t sure what he intended to do. He might have either stayed with the youth group, or come home after they stopped playing, or headed across the Common to the other game.

For the first time that I can remember, I was worried about my son – out alone at night. I reminded myself he was NOT alone but with peers, playing Ultimate Frisbee. Nonetheless, by 10 PM, I asked my husband if he thought I should call and see where he was. His answer was an unequivocal “no.” I managed to wait until 10:15 and then I sent him a text: “Pls check in when leaving.” I tried a few minutes later to entice him into responding by telling him the score of the Celtics game. He did not answer that either.

It was nearly 11 and I was just about to call him, when the phone rang. It was my son, letting us know that they just finished playing and he was on his way home. He walked in the door about forty minutes later with a scraped knee and a tired smile. As is often the case with my son, he saw the evening activities as nothing remarkable. I saw the night as another giant leap in his development.

I believe he’ll go back and play again. I hope they are nice kids. I hope if they go out after a game they will include him…but I hope they don't go to a bar. I hope he doesn’t get hurt, or lose his phone...or his wallet. Wow – is that what it feels like to be a parent of an adolescent growing up?

Moving Right Along

Things work out a certain way for a reason. He did not land any of the local retail positions for which he applied. However, my son was contacted last week by the person who schedules umpires, and he picked up two games already (one got rained out, but still…!). Even if he gets assigned to five or six more between now and when the youth baseball season ends, that would be enough spending money to get through the summer.

He has also reestablished his account at the local Y, and has gone to work out there a few times. Driving lessons continue as well. He has enough going on to keep him from getting bored.

All of his spring grades have been posted and once again, his grade point average was over the minimum requirement for the school’s Dean’s List.

As Robert Browning wrote, “God’s in His Heaven, All’s right with the World.”

How to Apply For a Job

This past weekend my son and I went for a walk toward our local downtown area, and stopped at several places along the way to inquire about summer jobs. We discovered that most were not hiring, but he left applications anyway; three took online applications; and one suggested that he come back during the week. Later I went grocery shopping and put in an online application on his behalf at that store, where I was told they might still be hiring for the summer. In addition, he left a voicemail message for the person in charge of hiring umpires for our town’s youth baseball program. My son had worked in that capacity for six years and it was great experience for young people.

Here is the script we were following:

First, know that you can ask just about anyone about jobs, and they will always be happy to say: Let me find out; or let me get the manager.

Walk in and say “Hi – I was wondering of you are hiring either full or part time.” Whoever you ask might say, “I’m not sure; let me check with the manager.” Another possible response is, “Yes, let me get you an application; [or] “Yes, you can apply on line at www…” Finally, they might give the dreaded answer “No, I’m sorry. We’re fully staffed right now.” We also got one response of “I’m not sure, please stop back during the week.”

Having done that, the hardest part is over (for a while). Once you have the applications in front of you, either print copy (WRITE NEATLY!) or online, you can just fill it out and send it – electronically, in the mail, or go back and drop it off. Although it might be disappointing to get “No” for an answer, there should be no more anxiety-producing requirements until you hear back from a company that would like to interview you; a bridge we will cross when we get to it!

I don’t know whether my son will get any of these open pursuits, but I am very proud of the way he handled it. It is very difficult for neuro-typical people to cold-call for a job. He discussed it with his Dad and they came up with the idea of a little extra help. My son asked if I wouldn’t mind going with him to these establishments. Neuro-typical people might be nervous about walking in and asking about employment; but it is likely that they would know more-or-less what to say and how to say it. For my son, our one hour walk was just another coaching session, and I think he got a lot out of it in terms of how to approach this demanding undertaking.

Start of the Summer

Thus far, it’s been an uneventful week. My son and I have talked about whether he will apply for jobs. The conclusion was it would be nice to have some spending money, but we also talked about how hard it can be just to walk into an establishment and ask if they are hiring. He went into a local video store on Tuesday with that intent and told me at dinner that evening that he “chickened out.” I can completely empathize with that feeling – one that I remember well not just from my own teen days, but at every job turning point in my life. I think the job search was most difficult after I completed my MBA, because the process was so different for me than it had been eight years earlier after undergraduate school.

I’m finding the thought of him not earning any spending money more than a little stressful and I let him know. I was also honest in telling him that Dad and I are not on the same page about this.

In the meantime, my son has had two driving lessons and seems to be doing well. He is definitely committed to getting his license, so we will get him as much road time as we can with this teacher between now and mid-July when his permit expires. So there will constructive activities going on over the summer; the only difference is they will be expenses instead of revenues!

The Final of the Semster

By the time I post this, my son will be done with his last final exam. He has also nearly completed the two take-home exam papers that are due next week. He hopes to wrap them up by tomorrow and has, in the end, decided to come home on Saturday. I think part of the rationale is that those who are staying around and finished are going to be partying up a storm, and my son would rather not.

I am a little concerned that in his rush to complete everything, he won’t do his best work. During high school, he was always allotted additional time for tests, yet rarely used it. As one of his specialists said, “He should.” So I hope he has enough persistence left to read through the two papers and make final edits before he sends them off by email to his professors.

I don’t really know what else to say at this point, now that my son has all but completed a year of college, and extremely successfully. I expect the summer – learning to drive, living back at home and figuring out how to spend down time – will bring new challenges. And no doubt he will rise to them.

So my son’s final is today and this is also my final daily blog entry for a while. I know I will not be as diligent about writing over the next three months; I will try and enter something at least weekly. To my daily readers: thank you for your encouragement. If you think of anything you think I might address, feel free to let me know – other than that, I expect a quiet, fun (!) summer.

Reading Day

That makes is sound so…collegiate. Reading days are those days between the last day of class and the first day of taking finals (“writing finals”) when you’re supposed to be preparing. Or maybe it makes it sound British!

My son has two final exams on Friday, which he’s already been studying for and has two take-home exams that are due next week. He’s fairly confident that he will be able to finish the writing by Saturday afternoon. He is now trying to decide whether to rush home then, or relax and stay over until Sunday as his roommate and some others are doing. Finals continue into next week, but it does not appear that there are too many students who will still be there by Tuesday or Wednesday.

Last night the Frisbee team got together for a last pick-up game. There will be opportunities for him to play locally during the summer as there is a metro league.

Speaking to my son last night, he had mixed feelings about winding down – although I thought he’d be eager to come home, he seems to be wavering now and may well stay until Sunday. Despite the complications of the first semester, and the fact that he was less than impressed by his courses and professors in his second semester, the fact that he’s in no rush to get home would seem to indicate that he’s made some social connections. I’d call that a good start.

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!).

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!

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.

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?

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 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.

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!

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.

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.

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?

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…

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!!

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:

http://pediatrics.aappublications.org/cgi/content/full/114/5/S2/1458#FN1

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.

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!

Question:

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.

Social Thinking

In my recent Internet travels, I came across a link to Michelle Garcia Winner’s Social Thinking website (https://www.socialthinking.com). 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!

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.

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 (www.franciscanhospital.org). 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!

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.

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- www.singsos.org)

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.

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 one...you'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.

A Missed Opportunity

Read the alcohol policy at my son’s school (and it is probably similar to most other colleges), and you will get the impression that there is no alcohol permitted pretty much anywhere on campus. Needless to say, that is not the reality. Because of damages to the dorm that were perpetrated (rumor has it) by a handful of intoxicated students last fall, every student in my son’s dormitory was assessed a damage fee of $25.

As we’ve looked into other schools, we’ve learned that many of them have “substance-free” dormitories (or at least specific floors within dorms) that are substance free based on a signed contract by the residents. If a student chooses not to drink or use drugs, they can sign a pledge so stating, and live among other students that have made the same life-style choice.

My son’s college is opening a brand new dormitory in September, which will be assigned as a sophomore-only dorm. It is an ideal time to establish such a policy. I believe they would find an overwhelmingly positive acceptance of the idea among a good portion of their current freshmen. Certainly enough of them would be interested for the school to populate one floor of the new residence.

I just spoke with Residence Life. The school’s alcohol and drug policy would be the same in the new dorm as it is anywhere else on campus. In other words, get ready for more of the same.

A Challenge for Anyone

I have always found that one of the hardest things for me to do (and probably for most people) is to look for a job when you are not currently working. In an era of 10% unemployment, I am sure many people are struggling with this. The standard advice is “You have to network.” But even then, it is difficult to call a friend of a friend and ask if they might know of any job opportunities that would be suitable.

My son has a connection established at Best Buddies – a young woman who is willing and able to help him craft a resume and find summer employment. In this nearly impossible environment, I see this as a golden ticket. Yet my son is hesitant to schedule a follow-up to get started.

While I would like to foster a sense of independence, I KNOW how hard those calls can be; so I offered to call the woman for him, to see when she was available. And I’m actually happy to report that he said no, that he would call her.

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.

Advice From What is Quickly Becoming My Most Important Source

I have looked back with regret more than a few times since my son started college, and voiced that regret in this space. In particular, I wish we had done more research on disability services for each of the colleges to which my son had applied.

Today on the AANE website, I found a summary of a college survey that the organization conducted in 2008. Here are a few of the tidbits from the survey summary:

1. “If there is any single fundamental factor that determines whether a student’s experience will be negative or positive, it is the willingness of the college’s disability office to take proactive action.”

2. “If possible, get someone on campus to interact with your child regularly: it is essential that someone (advisors, disability office, academic support services, etc) take a proactive approach towards the student.”

On the first point, I would advise young adults with social communications issues (and their parents) to try and meet – or at least speak with – someone in Disability Services in advance. It would have been much easier (in my 20/20 hindsight) to keep my son on track with his academic choices had we done more research prior to enrolling, and explained his nonverbal learning disability and potential problems that might arise because of it (even though there is no anticipating exactly what those problems might be).

On the second point, even now I feel that my son does not have such a person at the college that he can turn to. His current academic advisor is from the Theater department, and he has yet to connect with anyone in Communications. Each time he went to the Director of Disabilities, there was a two week wait for an appointment – not exactly conducive to “interact[ing] with your child regularly.”

I believe my son will successfully complete his first year; and I hope that he can establish a “lifeline” contact, academic advisor or other staff member, early in his second year. Nonetheless, there are so many things that could make the transition easier; and these are just two.

Lessons from Middlesex Community College

Korinne Hertz, a Disability Support Specialist at Middlesex Community College, wrote an article for the AANE website (and newsletter?) describing a program she designed for “Orienting Incoming College Students with Asperger Syndrome.”

Having noted that students with AS entering MCC seem to struggle, particularly during the huge transition of first semester, she researched their specific needs. Based on her findings, Ms. Hertz designed a freshman orientation program that would serve that population. Below (quoted directly from the article) are a few of the issues addressed during the sessions.

• Explicit teaching of the vocabulary of college, e.g., what does “three credits” vs. “four credits” mean? What are the differences between lecture, hybrid, and online courses? What does it mean to add/drop a course vs. withdrawing from a course?
• Initial explanation of some common unwritten rules of the MCC campus, e.g.: how to access adjunct faculty vs. how to access full time faculty; where do students go when they have down-time between classes; room numbers that start with a “2” are generally on the second floor, etc.
• A campus tour including looking inside a classroom in each academic building.
• Several guest speakers, e.g., someone from the student activities office discussing how to get involved.

Ms. Hertz’s goal was to see the program adopted by other colleges. I would add students with other mild forms of autism or social communications issues and students with nonverbal learning disorder to the intended audience. Although I am not familiar with how such a program could be introduced to a broader college base, I believe strongly that there is a critical need for such a targeted program at every college.

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!

Mea Culpa

Leave it to me to make the wrong assumption. After posting about the obvious need for an organized room (which my son has not yet read), I spoke to him on the phone and tried to joke: “That will teach you to make your bed.”

Wow, Mom – HARSH! He told me he pulls the comforter up almost every day and would have found the iPod sooner if it had been there the whole three weeks or so. His best guess is that someone had it and left it in his room to be conveniently found. Whatever – I’m sure he’ll keep a closer eye on it going forward.

More importantly, my son met with the Disabilities director this morning to get set up for fall registration. He still needs to meet with his faculty advisor (the theater professor who “suggested” that he switch majors) before registering. It sounds like he now has an idea of what is expected of him to ensure priority registration.

And THIS is Why You Need to Keep Your Room Organized!

Notice I did not use the word “neat;” although neat would be nice!

My son, daughter and I spent a wonderful weekend of gorgeous spring-like weather at a nearby vacation destination. We enjoyed time with friends, lots of good food, movies, as well as swimming, walking and other exercise.

Upon our return home, my son gathered his (clean) laundry and backpack and we headed back to campus. I helped him carry his things upstairs to his room and – although I wish I could say I was – I was not surprised to see papers and stuff on the floor, his blanket thrown in a heap, and a room in general disarray. I did not say anything in front of his roommate, but as soon as I got in the car I sent a text: “Pick up that trash!”

Not long after walking in the door when I returned home, my phone rang and it was my son. He was calling to tell me that when he made his bed and straightened the comforter out, his iPod fell out. In hindsight, I don’t know why I didn’t tell him to pull his bed apart and check under it. That’s what I would have done if it had gone missing at home.

Anyway, he was thrilled; I am thrilled for him. I reminded him to let Campus Security know that it turned up. And yet another teachable moment – keep your room neater (and it does not have to be spotless!) and things would be easier to keep track of.

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!

Identity Theft

I’ve seen two articles in the last two days on the prevalence of identity theft. Apparently, the rate of this fraud is highest among people 18-24 years of age (the millennial generation?).

This demographic is the most liberal in giving out personal information about themselves, which makes identity theft all the easier. They are frequently not even aware they are doing so. But each time they post a photo on Facebook, update their status as to what they are doing, where they are going, what movies they have seen, it gives more of a profile to a potential thief. They are also more likely to give out cell phone numbers, and buy online using a debit card since many of these young adults do not have a credit card yet. Any and all of these can make it easier for someone to appropriate an identity.

I have coached my son (and my husband, for that matter) to be careful when using his credit card and especially his debit card. I’ve given him articles about how to recognize secured web sites, and verbally summarized the article in a nutshell. I’ve reminded him to be careful of posting information that is too specific. I have also asked him to regularly monitor his bank balance. No doubt, as he monitors his balance, he’ll let us know if it’s getting too low!

Luck O' the Irish

Today my son met with the jobs counselor at the Best Buddies organization. I have not gotten all the details, but he seemed to come away with a very positive outlook regarding potential summer employment. Moreover, they apparently discussed other services that Best Buddies might be able to help him with.

It’s nice to have a new lifeline to replace the special education services we left behind when he graduated from high school. I’ve been reading about transition services that are normally required, but that never came up in my son’s last IEP team meeting. It’s reassuring to believe that the reason transition services did not come into play is because my son had mastered the use of the skills they helped him develop to succeed – academically, socially, professionally; but a little boost is always welcome.

Let Sleeping dogs Lie

Some parents of young adults with NLD, AS or other social communications issues have expressed concern regarding their child’s sleep habits. Many stay up very late – playing video games, chatting on Facebook, watching TV – and sleep away the daylight hours. I was surprised by threads of emails discussing what medications, or alternative therapies, everyone found helpful.

One day earlier this week, my son slept until past noon, having been up fairly late (doing I have no clue what) the night before. I’m not sure he’s ever done that before. Now I find myself wondering if this is my son hitting a normal adolescent milestone, or is it a problem in the making.

When I was his age and slept in on a non-school day, my mother would simply say “you must have needed the sleep.” She was a great one for cutting me slack when all my friends’ mothers were harassing them out of bed. So, for the time being, I’ll let him sleep!

Miscellaneous Good Things...and Laundry Lessons

Apart from the awful weather – it was a nice weekend. My son – home for a week on spring break – and I attended a small concert of Irish music on Saturday night onsite at the AANE offices. It was a pretty laid back introduction to the association. On the way home, I mentioned to my son that the AANE had regular meetings and activities for young adults. I don’t know if he’d be interested in attending this summer, but I hope he might consider it. Just planting the seed.

Before we went to the concert, we stopped at a local Best Buy because the camera he had bought there last summer was broken – again. He had purchased the two year warranty (fortunately) and had already had it repaired once. I left him to handle the camera and customer service and went off to run an errand. When we met up, he had a brand new camera.

He also downloaded and established a Skype account, which will be a fun way to communicate when he’s back at school.

Finally, in a move toward greater independence, I gave him his first lesson in doing laundry, which he managed very well! For anyone reading this just for the “Instructions,” below are the tips I gave him for doing laundry. Please, mothers and other neuro-typical laundry people – remember that these instructions are aimed at my son – who has nonverbal learning disorder; it’s a condensed lesson. I don’t necessarily wash clothes according to these instructions (oh, that’s right, I don’t wash usually clothes at all; that’s Dad’s job).

1) Assuming you are using a pay-washer, READ THE DIRECTIONS! They will tell you where to put the money, how to select the temperature/cycle.

2) Don’t try and squeeze too many clothes into one load of wash. If you have enough for two loads, divide the pile into light colors/light weight (underwear, socks, t-shirts); and darker colors/heavier weight (pants, sweatshirts).

3) If you can fit it all into one load, don’t worry about sorting at all.

4) Since we’re pretty much skipping sorting, never use hot water. So the “default” cycle will be “warm wash, cool rinse” or permanent press. Almost anything will come reasonably clean when washed in warm water and rinsed in cold. Rinsing in cold also saves energy and keeps fabrics from getting too wrinkled.

5) Bring a book – if you can’t leave your laundry unattended, you can read or study while you’re waiting.

6) Everything can go in the dryer; it usually takes about 45 minutes or so to dry a full load on high heat. Guys’ clothes are not usually subject to shrinkage and guys are unlikely to care about a few wrinkles caused by the high heat. BUT – if you’re a young woman, this does not apply; your clothes might shrink and you would care!

He Comes Through Again

Today is my son’s history mid-term exam – a blue-book essay. He picked up the letter needed from the Office for Students with Disabilities and talked to his history professor about his handwriting difficulties.

He will be allowed to type his exam answers on his laptop. Well done, eh?

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.

Counting Blessings

My son did not stop attending school by age 15 because he could not cope with bullying, class-work or unsympathetic teachers.

He is not on medication for anxiety, depression or a sleep disorder.

Although he never excelled at sports, he played soccer, basketball and baseball competently and very much enjoys all sports. He also seems to be enjoying his latest venture into athletics, Ultimate Frisbee.

He may not have a lot of friends, but he is getting more comfortable socializing with peers – his most recent outing was a long hike with eight or nine other students on a spring-like Sunday afternoon.

He does not require a single dorm room.

These are a few of the issues about which other families have been emailing; seeking support from anyone is similar situations. There is almost always someone who can empathize, having dealt with the same things.

I am very grateful that, on this continuum of disabilities, my son has been able to find strength in his abilities.

A Word on Self-Advocating

There is a great reference web site maintained by Dan Coulter and his wife, Julie (www.coultervideo.com). The couple began producing educational videos after their son was diagnosed with Asperger’s Syndrome. Their son recently graduated from college, but the Coulters’ work creating videos and other helpful materials continues.

There is a long list of articles on the website, most (or all?) written by Dan. Just having perused the list of titles, I can imagine many would be very helpful and supportive for parents of children with social communications issues, or for young (or not so young) adults struggling with such issues.

Dan’s article entitled “Learning Self-Advocacy Skills” hit home today. He asserts that this skill is (or should be) one of the most important skills a high school student with AS (or NLD) can learn before graduation. My son continues to wrestle with the concept. This week he has mid-term exams. Having recently met with the Disabilities Director, he knows that he should be presenting a letter from that office to his professors so they know his handwriting problems. As of last night, he didn’t have the letter. One teacher he spoke to told him no one could use a laptop for a blue book exam. But I wonder if my son actually said “I have grapho-motor deficiencies and you won’t be able to read my handwriting.”

He was stressed about it; worried that he would not do well because of his handwriting. I suggested that he go to the office this morning to see if he could get the letter on short notice. Even if it was too late to make arrangements for a computer to use for his exams, at least the professors would understand that there is a real disability underpinning the bad handwriting.

Knowing, as Mr. Coulter writes in his article, that it can be really hard for people like my son to ask for help or explain what they might need, I emailed the director this morning letting her know my son should be dropping by, and I copied him to give him an opening. I don’t think he got there before his 12:30 exam. But she has the letter for him and I hope he will present it to his history professor before that exam. It’s probably too late for this Friday’s test, but he should try. Poor handwriting should not be a factor in his grades. In any event, I think when final exams roll around in May, the process should be easier to manage.

On the plus side, he did report his missing iPod to Campus Security; I guess when something is important enough he can self-advocate!

Things Happen

My son’s iPod has “gone missing.” It is possible that he lost it; but because he has the earphones (which he almost always leaves with the iPod), it is also possible that it was taken from his room. As I have already found out, this is something that can happen to anyone, neuro-typical or not. A friend of my son’s, a freshman at Duke, also lost her iPod, after only a few months on campus. Yes, people with NLD or AS are far too trusting – but I think the same holds true for any young adult who has been brought up with a strong set of fundamental values. I offered my son no more or less support than his friend’s mother offered her child: sympathy, suggestions on reporting the loss, etc. It is a difficult lesson for both of them, no doubt. But maybe it will turn up…

Expect a Boring Weekend

My son comes home most weekends because, in his words, he’d rather be bored at home than at school. Because spring break starts next week, he has decided to stay at school this weekend. There is a show at the theater that he intends to see. He’ll probably have Frisbee practice tomorrow (assuming all the players are feeling well enough to play after an exciting Friday night). He must have some homework or studying he can do. And that’s about it for weekend excitement.

I’m thinking we will be more bored at home!

Mid-Terms Are Coming! Mid Terms Are Coming!

Do they still use blue books for college exams?

I’m asking because, now that my son has finally made a definitive connection with the OSD, one crucial accommodation is typing rather than hand-writing long essays, exams, etc. With mid term exams around the corner, I’m hoping he will be proactive enough to make sure that he will be allowed to type his exam answers. How well I remember the cramped hand from writing exams in college and beyond!

For Those Who Might be Wondering...

Here are the upshots from yesterday’s meeting: there will be no grade change because, apparently, the professor was under no obligation to accommodate a student in a manner that might change the requirements of the course. Moreover, she will remain his faculty advisor until the major change becomes official. What? The teacher who advised him to quit the major he had chosen barely halfway into the first semester will still advise him? Wow.

All of you who have children younger than college age, do your homework on this before they go off. When one of my son’s learning center teachers recommended a certain college that was really positioned to promote success for kids with learning disabilities like my son’s, I “poo-poo’d” the idea. I did not want him to choose a college based solely on the fact that he has a disability.

Well there must be a happy medium.

Anyway, the rest of the meeting was marginally better, and he will definitely be able to take advantage of priority registration. Of course, that will happen after he meets with his faculty advisor.

It's Like Starting Over

Later today my son and husband are meeting with the director of the Office for Students with Disabilities. The purpose of the meeting is two-fold: The first is to discuss the grade that my son received from the professor who could not figure out how to accommodate his disability for the sewing assignment (although she came up with a solution for the building segment of the class). The second and probably more important goal is to develop a plan going forward.

After his most recent evaluation, the recommendations included academic support, extended testing time, use of a computer for as much work as possible, and wait time, to allow him to formulate his answers before an oral response. I believe that just letting his professors know that there is a disability takes some of the pressure off my son. One of the hallmarks of NLD (and AS) is difficulty with pragmatic language; and there is little more pragmatic that informing your teachers of a learning disability. So it’s really a catch-22: you need to communicate your disability to your professors, but your disability is difficulty communicating.

I’m not sure exactly how all this will play out, but I see it as a fresh start for my son. If the director gives him some kind of letter for his teachers, my son can decide when and whether he needs it as an explanation and appeal for help. I can imagine certain circumstances where he might need some support, possibly in initiating group work or some kind of presentation that might requires artistic work (a poster or graph).

The OSD has a “carrot” for encouraging students who might need support to actually seek it. They can register for classes before the broad student body. Having gotten shut out of the Composition course he wanted and shunted into an 8 AM section, I’m pretty sure my son would love never having to take an early class again!