Wednesday, November 25, 2009

Thanksgiving Break

Back on Monday!

Tuesday, November 24, 2009

Front Page News

There is a story on the front page of today’s paper about a 13-year-old boy from New York City who was missing for eleven days. The boy was described as having “difficulty with social interaction…seemingly eccentric behavior and isolation.” Sound familiar? He has Asperger’s syndrome. After getting in trouble at school for an incomplete assignment he was afraid to go home, thinking he would be in more trouble. He spent the next week and a half riding – unseen, unnoticed – on the New York subway system. He subsisted on carefully rationed food and bottled water, and used a public restroom at a Brooklyn subway station near Coney Island.

His parents printed and distributed about 2,000 flyers with his picture; the NYC police department and Missing Persons Squad were on constant vigil; eventually the Mexican Consulate got involved in the search as well. Still, this youngster spent eleven days in the subways – unseen, unnoticed – before someone became aware of him and asked his name.

Fortunately, a happy ending: Apart from being hungry, dirty and having leg cramps, the boy was all right physically and returned to school the next week. You want to stand up and cheer that the boy with Asperger’s was clever enough to manage through what must have been a grueling and frightening ordeal. But those who have children with similar disorders know that, to some degree, he was able to manage because he was less aware of the potential things that could go wrong than you or I might be.

My family has received a lot of guidance around my son’s Nonverbal Learning Disability. He’s had specialists working with him, who have also helped us. The relationships with peers that were so difficult to foster were augmented by strong ties to adult family members, friends and mentors. We do our best to try and support and teach him, and still foster his independence. Yet I wonder how long it might have taken someone to notice him.

Children with social communications issues or autism spectrum disorders have a way of staying on the periphery, with an “invisibility cloak” wrapped around them. The more profound the disability, the harder it is to remove the cloak. This boy’s mother said, “I don’t know, as a mother, how to get to his heart.”

She'll need some help.

Monday, November 23, 2009

Open Your Eyes!

With my son (mostly) away at school, there is a different dynamic in our house. Although I have written here about the clear-cut instructions for picking up after himself, the truth is my son has really not gotten the hang of that yet. So one of those changed dynamics is the fact that our house has been…cleaner.

Not long after he arrived home this weekend, the previously clutter-free floor of his room was littered with socks, tissues, remotes, books and battery chargers. I was the first one in bed last Friday evening and the first one up on Saturday morning. I walked into the kitchen that I had left fairly tidy – dishwasher filled, counters clean – and found every cabinet door and drawer open, dishes, silverware and glasses on the counter or in the sink. You get the picture.

I get that teenage boys/young men are not known for their neatness; but there comes a time to tweak that behavior. I am not asking for a sea change, just a sign that my son is capable of seeing a mess and cleaning it.

The things that I really wish he would grasp though have less to do with his environment and more to do with him. I still find myself telling him to wipe his mouth (although much less frequently than when he was younger), and that’s a worry to me. I attribute the fact that he is unaware of whether his mouth is clean and the impact on others if it is not, to his learning disability. I don't think I am overstating the case when I say that is one obstacle that he must overcome in order to be successful.

I have given my son a heads up that while he is home for the Thanksgiving break, I will be in “nag” mode. I don’t know how else to get him over these supposedly simple hurdles. I would gladly take suggestions!

Friday, November 20, 2009

Take Two

The situation with the Tech class was resolved effectively by my son’s decision to change majors. The school has agreed that he can finish the final assignment for this class using pre-cut wood, which would eliminate the saw. My son is happy to be completing the course as it was designed, without having to do a less relevant assignment.

It is truly unfortunate that it came to this. I would have thought that a Stage Manager would have to know a little bit about everything in front of and behind stage, but that person’s main concern would be managing others. If that is true, there is no doubt in my mind that my son could have done this major and succeeded in a career in the field.

But I’m confident he will be equally or more successful in any other field he chooses.

Thursday, November 19, 2009

When/Whom to Ask for Help

Part of becoming independent, learning disability aside, is knowing when to ask for help, and knowing whom to ask.

For those readers out there in college, or those with children in college, computer problems should be directed to the school’s Tech support desk. They are extremely hard to diagnose, and even harder to address by your parent via telephone.

I have just so directed my son, who called to tell me his printer was not working. BUT, happily he just called me back to tell me he figured it out.

Wednesday, November 18, 2009

The Lay of the Land

I will definitely write about the outcome of what’s been going on with classes, but I need to step away for now.

My son’s school is located less than 25 miles from our house, though it takes about an hour to drive there. We have managed to pick him up and bring him back for most of the weekends he has come home. While not as handy as having Dad pick up and Mom drop off, public transportation is relatively convenient in both directions, and he has taken a bus home.

Last weekend, on the spur of the moment, he decided to come home to watch some soccer that would not be shown on channels available at school. While on the phone with him around dinner-time, we checked the bus schedule and found that he would be able to make the next bus if he hurried. The bus would take him to the subway, which would bring him the rest of the way home.

I will cut to the chase by confirming that he made it both ways safely, though not without a lot of anxiety on my part and a couple of check-in phone calls. On the way home, he got on a bus that was going in the right general direction, but he had to transfer half-way. He managed. On the way back, the Sunday train did not go to the station he thought it would, so he had to pick up the bus the rest of the way in an unfamiliar area. Again, he managed. I don’t know if I was more worried than I would have been had he not had social communications trouble. His trust of people and the fact that he is sometimes unmindful of his surroundings can be a little nerve-wracking, although he’s made huge strides in both of those.

Having navigated these routes for the first time alone, we all have confidence that he won’t have any problems going forward. He has now learned that there are several bus and train combinations that will get him home; he has map-quested the (walking) route to Target from school; he has taken a bus to a mall a few towns away; and he has also gotten on the school shuttle just to explore the other campuses. The seeds of independence continue to grow.

Tuesday, November 17, 2009

The Bottom Line

Concerned only for his safety, the school is requiring us to schedule and provide the results of an occupational therapy evaluation in order for my son to complete the three weeks or so that remain in this class.

Monday, November 16, 2009

In a Perfect World

Autism spectrum disabilities frequently are concurrent with other issues, such as my son’s seizure disorder. However, this particular malady is very well controlled by daily medication. As a result, his only problems in school are related to the core problem, Nonverbal Learning Disorder.

NLD affects my son’s handwriting, because it is difficult for him to judge the spacing and size of written letters. He has used a computer to type assignments since early elementary school – although math and science teachers have always been able to decipher his handwriting when typing was not practical. Relatives can usually understand his thank-you notes; his handwriting probably is not that much worse than my own.

Along the same principle, when the Tech class moved from hand-stitching to sewing machines, my son was able to complete the task. The problem with the hand sewing was less of being uncoordinated, and more of a fundamental inability to visualize how to do the stitches and then follow through in practice. He actually searched the Internet for clearer instructions, but what he found did not really shed any additional light on this job. Additional verbal clarification and a step-by-step demonstration would have helped, although he probably still would have had trouble.

The OSD has asked for written documentation that my son will be able to safely operate the machines for the next element of the class. We’re not sure why; there is actually no reason for them to believe that he will have any more trouble than anyone else. The school has everything we have that documents my son’s learning disability, including testing results and recommended accommodations. His admission file included a letter from his guidance counselor that would have addressed his learning issues. I have suggested they contact one of the specialists at his high school if they need anything else.

My son has indicated that he wants to continue in the class, whether or not he continues in the major. Ideally, that’s what will happen. If the professor is concerned for his safety, she might offer one-on-one instruction, or have an upperclassman or graduate assistant work with my son. But I can not give them the written assurance that they would like; they are asking us to document something that doesn’t exist to any greater degree for my son than it does for other students.

Friday, November 13, 2009


This is the “major” that the two professors told my son might possibly being an alternative concentration. The director of the Office for Students with Disabilities told me she did not know what it stood for. Go figure. If any readers know what it might stand for (Bachelor of…Good Feelings??) please let me know.

Apart from that, we (the director and I) had a pretty lengthy discussion following her meeting yesterday with these two teachers. She assured me that they were not trying to dissuade my son from pursuing his chosen major (which they unfortunately did). They only wanted to express their concern over his ability to meet the requirements of several courses. She then listed nine or ten specific courses that they were afraid he could not do. These courses had names like Workshop for Theater (I & II), Production and Stagecraft. I asked the director what specific requirements for these classes were causing concern for the professors. She did not know. I told her that we (she, my son, the teachers or I) really could not discuss these classes relative to his learning disability until we had a clear picture of exactly how the requirements would challenge him. I asked that she have my son’s advisor send me the course outlines with particular sections highlighted that she felt would be too hard, with or without accommodations.

In the meantime, the immediate issue is the use of power tools for the Stage Tech course he is currently taking. Recall that this was the class that caused my son to tell me that we ‘weren’t paying enough for this school,’ because it was so good. This is also the class, with one assignment, that unleashed his insecurities (‘I should have taken a gap year; I can’t do this’). Starting next week, the students will be using drill presses, band saws and table saws. In yesterday’s class they were introduced to these machines.

Am I concerned that he will be using power tools like these? Yes. Can he use power tools? Yes. He did a Habitat for Humanity build after tenth grade; he can drive a car (though he doesn’t have a license), which is a pretty big machine. My son is a champion multi-tasker and can maintain focus on whichever is the most important undertaking. Since most college students probably took college prep courses in high school and not mechanical or building classes, I assume very few in his Stage Tech class have had extensive experience working with these tools. ALL of them will have to be extremely careful. He is nervous, and rightly so – although I think he is more nervous given what he perceived as a no-confidence vote.

I talked to him yesterday afternoon and it is becoming clearer to me that his concerns over his choice of major have very little to do with his NLD (so this battle may be one not worth fighting). He is not feeling much of a connection with the teachers or theater classmates; he doesn’t much like the Tech class at this point. But he agreed to do his best and finish out this semester before making any decision. And then he mentioned that “by the way” – he is in all general study courses next semester. Whoa! It sounds like his decision has already been made (for him?). He did explain that the only course from his BFA major flow chart that was offered was “Voice for Performance;” but, for whatever reason he is not even taking that. Incidentally, it was not on the list of “difficult” courses.

If the professors were not trying to discourage my son from majoring in Stage Management, why is he not enrolled in the one required course for the degree that is offered next semester? Presumably, his Faculty Advisor guided his choices last week during registration. It is probably fortunate that he is leaning toward changing majors anyway, given how the faculty and administrators are handling this particular disability. It’s been a major disappointment for me; less so for my son though, and it’s his life.

Thursday, November 12, 2009

A Fly on the Wall

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

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

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

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

Potential outcomes of the meeting today:

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

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

Wednesday, November 11, 2009


During my son’s senior year in high school, I attended several PTO-sponsored meetings on the subject of preparing for the next step. One meeting was about health care concerns when your child leaves home.

Inevitably, the subject of alcohol came up and it stunned me to hear that approximately 50% of college freshmen have reported “binge drinking” more than once a week. And I was further surprised that “binge drinking” was described as five or more drinks for men, and only three or more for women. I’m glad I was not aware of that when I was in college and the legal drinking age in my state was eighteen. Or maybe I should have been aware of that.

Last night my son called me around 9 PM to tell me he was walking around campus to get some fresh air. With no classes today, apparently a lot of kids on campus found a way to get alcohol, and his dorm was a little rowdy. Although the school has a no alcohol policy, it’s apparently not easy to enforce. A couple of weekends ago when my son returned to school after being home for the weekend, he heard about a fight (alcohol-related) that got out of hand; last night he told me someone was “hitting people” and I think that’s when he decided to take a walk.

I don’t know if my son will drink alcohol before he turns 21. He says he will not, but I would guess that he might, under the right circumstances. It’s far outside my purview at this point to have an influence on that. He understands that alcoholism is a disease that he might be susceptible to, and he knows the difference between social drinking and irresponsible drinking. Moreover, he understands that “irresponsible” drinking likely has as much to do with the choices made under the influence of alcohol as the amount of alcohol consumed.

But is it within my ability at this point to keep him safe? I’m not entirely sure. It isn’t as though I could call the school and complain about the illicit use of alcohol. If the presenter at the PTO meeting last year was able to cite such a statistic, I imagine that most college administrators must also be aware that 50% of their populations sometimes indulge in underage binge drinking. According to the school’s policy, alcohol is prohibited in the dormitories, and almost anywhere else on campus. Is it up to the Resident Advisor – a peer – to enforce this? I can’t imagine they would be expected to step in to a room of kids that are drinking and demand that they stop. There is always a potential for a volatile reaction when alcohol is clouding judgment. Who, then, will be the enforcer?

And I stand corrected!! I misquoted yesterday: A parent is only as happy as their unhappiest child. But you get the point…

Tuesday, November 10, 2009

Only As Happy As your Happiest Child

A friend of mine frequently reminds me of that: that a parent is only as happy as their happiest child. When your child hurts, you hurt more.

Right now, my son is not feeling particularly good about himself (depressed is the word he used). He was taken by surprise, I think, to hear a teacher tell him he could not manage a particular task. All I could do is remind him of the encouragement he has gotten in the past. I had contacted his high school guidance counselor to vent about this. She replied immediately with a reminder of exactly how much my son has proven capable of. I forwarded the email to him and told him last night to read it over and over, until he remembers that it is true.

Her words:

(He) CAN do what ever he sets his mind to, including a BFA in
stage management! He has to do what he always has done...advocate for himself as well as take advantage of the resources made available to him. When is the team meeting? Would it be helpful for me to speak with anyone? I would be happy to! Just let me know and I can give a might be helpful for (the school) to speak with someone who has worked closely with (him) and can testify to what he can do...rather than just look at his testing. This is something I can definitely do!

These teachers will get to know him, and realize that they underestimated my son. Whatever he decides about his major field of study in college, I have confidence in him.

Monday, November 9, 2009

The Rest of the Story (so far)

When my son was having so much difficulty with the sewing assignment, we encouraged him to make contact with the Office for Students with Disabilities, which he did. Before he had that meeting, he sent an email to the Tech teacher, explaining that he had a learning disability that made the task more difficult for him. She responded promptly and suggested a meeting, and included the head of the department. At that meeting last Thursday, my son was told that he could not meet the requirements for a BFA in Stage Management. He was told that there were about twelve of the twenty-two required courses that would pose obstacles for him. Moreover, they suggested that he try a “self-designed” major. He was getting expelled from pre-school yet again.

Now my son has spent the past fourteen years, from the pre-school that I wrote about last week through his senior year in high school getting nothing but encouragement and support – only to have the rug pulled out from underneath him with one brief meeting. When he told me about the meeting, he added, “They have a point.”

I am going to add here that he was not completely convinced that he wanted this major even before this meeting. I am going to concede the fact that some astronomically high proportion of college students changes majors, and I was in that majority.

But these two teachers gain no credibility as educators by telling my son that this major was beyond his capabilities. His college is sponsoring a seminar early in 2010 on inclusion practices for Aspberger’s students in the college environment. Guess who should go.

Let’s assume for a moment that my son is fully committed to his chosen major. Or, if he is not, let’s go on the premise that he is willing to complete one year of courses in this major before he makes a decision about whether or not to continue. If his disability were an obvious physical handicap, the school would recognize immediately that they might have to make some adjustments. If he were in a wheelchair, he could not be expected to climb a ladder to check lights.

My son’s disability is more subtle. We were told when he was three years old that he should learn keyboarding and do as much of his work on the computer as he can. While there are required courses in costume design and set design, I would guess that there is computer-assisted design software that he would be able to utilize. When my husband and I went through the course flow chart, these were the only courses (apart from his current Stage Tech course) that we could find that could be really tough. Do you mean to tell me that a school noted for its theater department can not find a way to work with a handicapped student to succeed in a theater major?

For a person with a disability, success in the classroom and eventually the workplace is all about accommodations – not accommodations that would result in “less” of a major or job description – but accommodations that adapt the requirements so that it becomes accessible to someone who wants to pursue it.

My son is meeting with the two teachers and the director of the disability office later this week, and he has agreed to let my husband be there. Our concern is that he will let this be a catalyst to stop trying, and take the easy way out. Sometimes in his eagerness to please, he overlooks what’s best for him. But we are all keeping our minds open.

Friday, November 6, 2009

The Dark Side

Two readers whom I have not met both commented that some of these entries were like a window to the future. One has a four-year-old daughter and the other a son in seventh grade. Their children have been diagnosed with social communications issues, or other similar learning disabilities.

To date, I have written mostly positive entries that try to demonstrate how easy it can be to help these kids. Yesterday I was reminded forcefully how hard it is to get that message out there.

When my son was a toddler, he was twice “expelled” from day care. The first time, he was about 16 months old and attending a day care center connected with a major New York City hospital. At that time, he had been hospitalized twice for seizure activity, which was still not fully controlled; he was also exhibiting signs of relatively minor developmental delays. On a spring day, he had a seizure while at day care. The director called me at work to let me know they were sending him – by ambulance – to the emergency room. Because the emergency room was particularly busy that day, he was rerouted to another hospital (but that’s another story). I eventually found him; he was sleeping off a minor seizure and released to go home.

When I next arrived at the day care center to drop him off, the director pulled me aside and told me that my son “really needs one-on-one care.” She pointed out the things that he could not do, that most other children his age were adept at – eating and drinking independently, for example. She suggested that he could stay one more month to give us time to find alternative arrangements. Generous, eh?

The alternative arrangements turned out to be a new job for me, in a new state, with a new day care. The teachers were aware of his health and developmental issues, and for the first few months everything was fine. However, my son was 22 months old when he, out of the blue, started falling down. Within a day or two, he could no longer walk or even stand. He was admitted to the hospital (for the third time in his young life) and the diagnosis was acute ataxia, possible from an ear infection. They ran a substantial number of tests, looking for something metabolic, but found nothing (although those results were not known for a few months afterwards).

He was discharged with physical therapy recommended, and my mother came and spent a week with us taking care of him. Four days after he was released from the hospital, my mother called me at work to say “He stood up all by himself!” And a week after that he was back to walking and we brought him back to the day care center. The director called my husband and me in to a meeting and told us our son, “really needs one-on-one care.” BUT, she also gave us the name of a social worker for the city who would do further evaluations.

After further evaluations – testing and a detailed health and developmental history – the social worker said he didn’t need one-on-one care; he just needed the right care. We enrolled him in a preschool that turned out to be truly spectacular. He began getting speech, occupational and physical therapy. When we moved away three years later it was with an evaluation in hand that would become the basis for the next twelve years at public school. And things got better and better each year.

And this brings me to what happened yesterday at his college. We got a reminder that not everyone is as tuned in to learning disabilities as they perhaps should be – especially if they are in education. But since this is so long, and the rest of the story will also take some space, I will leave that for next entry.

Thursday, November 5, 2009

Lots of Resources

Now that I’m writing this, I have found out about a lot of resources on autism spectrum disorders, Aspberger’s Syndrome, Nonverbal learning disability, etc.

I have not come across another blog, web site or other electronic resource that attempts to teach a person with a social communications related learning disability the basic behaviors they need to know in order to cultivate friendships and fit in with peers.

If anyone knows of any, please provide the link. I could use some advice myself about now! More tomorrow.

Wednesday, November 4, 2009

Spoiler Alert!

One of my (four) official followers had a great suggestion for the toiletries problem. If there are any family members reading this on a regular basis, use the URL below for a Christmas suggestion! If my son is reading this, don't look at the URL below...

I think this will work really well and be convenient to use (convenience is a major selling point with college freshmen).

TA 245361, best size.

Tuesday, November 3, 2009

A Rose, By Any Other Name

In today’s New York Times, there is an article about removing the diagnosis of Asperger’s syndrome from the next edition (due out in 2012) of the Diagnostic and Statistical Manual for Mental Disorders. Asperger’s, pervasive developmental disorder, nonverbal learning disorder (itself a new entry) would be folded into one broad diagnosis of “autism spectrum disorder,” with varying degrees of gravity, from “high-functioning to profoundly disabling.” Such a move would have far-reaching implications, not the least of which is from the perspectives of insurance coverage and school services.

I bring this up only because it was topical today. Whether a child has Asperger’s, NLD, PDD, or has a “mild autistic disorder" does not change the fact that these children will be better able to achieve if they are given certain specific strategies to overcome the difficulties of a learning disability, and especially a learning disability that impinges on social interactions.

At some point, I’d like to be able to incorporate comments from readers, including parents and young adults with an autism spectrum disability. This is a forum that does not require pre-approvals or co-pays.

Monday, November 2, 2009

Any Suggestions Out There??

One of my son’s biggest challenges, and it has an impact on so many parts of his life, is getting and staying organized. I suggest, cajole, advise, counsel, recommend… and still there is a new problem (it seems) every time I see him.

Edit…edit. I was going to list things that had fallen through the cracks since he left, but why beat a dead horse. Just go back and look at some of the entries.

This weekend he told me he had basically lost (forgotten in the bathroom) three bottles of shampoo/body wash, pretty much all in the past week or so.

He’s got a shaving kit, but apparently not everything fits, so it’s pretty easy to leave something behind (apparently). He took a plastic shoe-box back to school yesterday that might work better in terms of fit. But it will only help if he uses it.

Anyone have any suggestions??