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!

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.