Friday, January 29, 2010

Pushing The Envelope

Last Wednesday my husband attended a presentation by an attorney specializing in rights in education for the disabled. I had mentioned that this event was forthcoming in the blog on January 7.

In any event, the talk was very good and my husband introduced himself to the speaker at the end of the discussion and shared some of our travails at my son’s college, and the grade he received in his State Tech class. Even hearing just the briefest background, the attorney was very clear that we should pursue this. He said that the professor was aware of the learning disability and therefore should have made some kind of adaptation in the sewing assignment and testing.

So readers, is it “His Call” (1/26/10) or is this a point where a parent steps in, regardless of the student’s age?

Thursday, January 28, 2010

Grateful Again

Although this is a blog focusing on social communications difficulties and education, my daughter also has a learning disability. This morning my husband and I met with her elementary school education team and I want to again express my gratitude that we ended up living in this community. We walked out of the meeting agreeing that – after having all good and productive annual Ed Plan meetings since my son began first grade here, this was the best. It was the most constructive, productive and reassuring discussion we’ve had about either child. I think very highly of, and am so grateful to, every person there who contributed to making it so successful. These are the same people who started my son off on his road to success.

Wednesday, January 27, 2010

A New Light

Joining AANE was a smart move that has already paid off; not to mention a step that I wish I had taken a few years ago. In one wonderful article – and there are many others available on the web site or via links to related web sites – I picked up so many useful tips.

Stephanie Loo, AANE’s Director of Teen Services, posted an article entitled “Tips for Parents of Teens with Asperger’s Syndrome.” Again I stress that my son has Nonverbal Learning Disorder (not AS), but missed social cues are hallmarks of both. Many of the things we’ve been doing for our son were confirmed; and there were many other tips in the short article that we had never thought of.

For example, she encourages parents to foster independence. Since his critical attack of meningo-encephalitis in eighth grade and the subsequent rehabilitation, my son has been getting around our city on his own. We’ve encouraged him on his “walkabouts” and also made sure he knew the ropes of our extensive public transportation system.

Ms. Loo points out that many teens with these disabilities like to unwind with an evening walk (as our son has been doing while at school). When I get those evening calls from my son that he is “wandering aimlessly,” I sometimes worry for his safety. It did not occur to me that campus or town police might consider such behavior suspicious. To avoid this, the author advises teens to carry a wallet disclosure card (available on the AANE website). She also suggests that parents might want to contact local police community relations with a heads-up on some of the “quirks” of teens with social communications issues.

I don’t believe that I need to take that action for my son – his behavior is usually fairly conventional. However, every child is different and every parent should probably consider whether initiating contact with local police might be a sound way of avoiding being contacted at some later time.

Tuesday, January 26, 2010

It's His Call

The grade my son ended up receiving in the Stage Technology course was his lowest ever. Given that there were two other segments to the course in addition to the sewing portion, he was genuinely surprised that his grade was that low. The grades he received in lighting and production or set (or whatever the other segment was called – the one where he made the box!), were all relatively strong.

Upon returning to school this semester, he set up a meeting with the professor to go over the grades. She told my son that the segments were each equally weighted, and he had essentially failed the sewing segment. He left her office only partially satisfied. When he returned to his room and gathered up and averaged his grades from the other two segments, they were – individually – very good (B in one and B+ or A in the other).

I suggested he send her an email, thanking her for the meeting and explaining that he still can not square his classroom work and test grades with the final grade he received. She should be able to provide a complete reconciliation of how she arrived at the final mark.

Given that they pretty much dropped him like a hot potato from the department and the professor never made any effort in the sewing segment to accommodate his disability, I feel strongly that my son should pursue this. I pointed out that, should he transfer, he would lose those credits.

While I find the situation both frustrating and infuriating, following up will be his decision.

Monday, January 25, 2010

If a Tree Falls in the Forest...

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

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

Friday, January 22, 2010

More Support

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

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

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

Thursday, January 21, 2010

Short Misstep

The college my son attends is spread over three campuses in a small city. His dormitory and most classrooms are on the school’s North Campus; but this semester he has one class on the South Campus. Getting to this class entails either a 20-25 minute walk, or a short ride on the campus shuttle bus.

This morning he arrived at South Campus in plenty of time for class. He got off the bus and entered the classroom building – only to find he was in the wrong place. Apparently (as he found out), there are two academic buildings on this campus and his class was in the other building.

Happily, he was not alone at the wrong place – another student was looking for the same class. Together they managed to get to the right room, and only about 15 minutes late!

So my son conquers another obstacle, and makes another (maybe brief, maybe lasting) social connection.

Wednesday, January 20, 2010

A Better Start

My son seems to have more of the little things under his own control as he begins his second semester. He called yesterday to tell me that (again) he was having trouble with his Internet connection; by this morning he had figured out on his own how to adjust the settings. When I spoke to him earlier today, he was on his way to drop off his Change of Major form – something he was anxious to get squared away. Finally, he has already determined that he is going to struggle getting up for the early classes that he is taking. This will likely be a significant factor in his decision to reconnect with the Office for Students with Disabilities – because, by doing so, he will be entitled to early registration and will be able to avoid the 8 AM classes next year!

Tuesday, January 19, 2010

Back to School

My son is on his way back to campus today. I am not 100% sure that he came to any decision regarding the Stage Tech grade, although he seems to be leaning toward approaching the professor to get clarification on how she arrived at it. We told him it couldn’t hurt and there are two possible outcomes, both of which would at least provide him with some closure. First, she might be able to show him that the grade he got was indeed the grade he earned based on work completed and exam scores. Or second, she might have actually made a mistake.

I said goodbye to him this morning before I left for work and left him with a promise of frequent text messages regarding the state of his dorm room. I feel as though I did not even come close to getting him to understand the importance of keeping his room at least moderately organized.

For those readers who know my son, feel free to ask him in a week if he’s managing to keep his important papers in a folder or folders, his toiletries in the nifty organizer that he got, and his floor free of trash. And feel free to ask him that more than once.

Friday, January 15, 2010

Sorting It Out

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

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

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

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

Thursday, January 14, 2010

From Childhood to Adulthood

When my son was in seventh grade, when the number of children being diagnosed with some form of autism was 1 in 165 instead of 1 in 100, I came across an article from the New York Times on Asperger’s Syndrome (“Answer, but No Cure, for a Social Disorder That Isolates Many,” 4/29/2004; contact me if you would like a copy).

I’ve always characterized his Nonverbal Learning Disorder as a social communications disability that is comparable to Asperger’s Syndrome, but less severe. My son was diagnosed relatively early (age 9), and has gotten tremendous support from the local public schools. He has developed some compensatory strategies to help him in certain social situations – one of which is keeping quiet. As one gentleman in the article points out: being quiet can “make [people] think you’re a good listener.”

There are points made in the article that are disconcerting, but also some helpful tips. For example, there may be groups on Facebook for students with NLD, Asperger’s or other learning disability. It would be great if there were others like my son -- an avid Facebook user -- with whom he could share experiences. There are anecdotes related in the article that I would like him to read; others that I think are less pertinent. Some of the things written in the article I found just plain daunting to ponder – searching for a job for one.

I wish this were an article that would paint a more optimistic picture; unfortunately, it made me painfully aware of some situations that would arise in my son’s life I had not yet considered. But it also made me more sensitive to the fact that there are a lot of people in the same boat, dealing with one form or another of social communications problems. Moreover, there is a growing breadth of services becoming available to adults to teach them how to cope in different social situations.

Last night at the theater, my son and I ran into a classmate of his from the high school. Besides saying hello he lobbed the conversation ball back with a bit of small talk: “It’s funny running into you here!” Ninety-nine people out of 100 would read that and say “big deal;” but for the one in 100 with some form of autism spectrum disorder, that is a pretty big deal!

Wednesday, January 13, 2010

In The Heights

Tonight my son and I are going to see the touring show of the Broadway hit musical "In the Heights." He saw it last summer in New York and loved it; plus there’s an added attraction because he was born “in the heights” – the Washington Heights neighborhood of Manhattan, and has been back to visit several times since we moved away from the area.

He’ll meet me downtown and we’re having dinner first. I’m looking forward to this time together; I hope he is too.

Tuesday, January 12, 2010


Yet another disappointment at the chosen college: My son’s aunt and uncle established a 529 savings account for him when he was about nine years old. It’s grown nicely since then, and I thought the coming semester would be a good time to take some gains off the table and put the funds to use.

One would think that making a tuition payment to a state college from a 529 account managed by a major investment company would be fairly straight-forward. These accounts have been around for some time now.

Wrong! It was pretty much impossible to speak to anyone in the bursar’s office that was capable of providing the necessary information to make the transfer. Voice mail messages apparently got forwarded to a dark hole, since they were not returned.

The payment eventually got to them (presumably – I suppose I won’t know for sure until I get the next bill and it shows a zero carry-forward balance). It was not easy, it was not pleasant. But my husband believes I should not judge the school by a few incompetent administrators…or by the incompetent tech support desk…or by the less-than-accommodating office for students with disabilities…

The other day I casually mentioned a potential transfer after his sophomore year (and I really have to stop doing that – will I never learn?), my son mentioned that one school he was still interested in was a state university in a neighboring state. It could happen.

Monday, January 11, 2010

A Long Vacation

As promised, I have been cuing (not nagging) my son on keeping his room neat (organized) since he’s been home. Not surprisingly, he is ready to get back to school.

The break between first and second semester of freshman year is often spent comparing notes with high school buddies. My son got together with some of the kids from last year’s senior theater class and went to the high school one day before Christmas to visit with former teachers. It was one of the highlights of his vacation, and I wish (for him) that there had been other days like it.

When I was in high school I had small groups of friends; these cliques changed over the years depending on what my interests were. But through elementary and high school, I was fortunate to have one very special “BFF;” the other friends came and went, but she was always there and still is.

Because there were few people that I missed from high school, my first break in college was spent not reconnecting with high school friends, but further connecting with the people I had started to become close to in college – especially those that lived relatively close by.

I’m hoping that one of the reasons my son is getting anxious to get back to school is because he, too, feels more comfortable with the new relationships in his life. I think (I hope?) the fresh slate at college has made it a little easier for him to forge peer connections. The friends with whom he plays Frisbee, some of the kids in his dorm – I think these are becoming some of my son’s first real friends.

Thursday, January 7, 2010

Out of the Local Schools, But Still on the Mailing Lists

Both of our children have Individualized Education Plans (IEPs). As a result we are on the mailing list for our local special education action committee, although I have not attended many of their meetings over the years. This morning I received the January newsletter in my inbox, and one of the items caught my attention: There will be a talk by a senior attorney at Landmark School Outreach, who practices disability, special education, education, and children’s law. Landmark School serves children in grades 2 through 12 who learn differently. Landmark College in Vermont, which serves college age students with learning disabilities, has its roots in this Massachusetts-based program.

We briefly looked into Landmark College for our son, but did not pursue it for two reasons: first, the college is really known for its programs focused on ADHD issues and does not boast of particular strengths in autism spectrum disorders; second, as is the case for most private schools, costs were a concern.

However, given what he’s been through this past semester, I think the talk will be well worth attending. My husband and I were resistant when one of my son’s Learning Center teachers was steadfastly advocating a nearby university because, in her words, “they are ideally equipped to educate and take care of students like him.” We looked into the school and they did not have the theater program that my son wanted, and we really did not think that the Nonverbal Learning Disorder should have been the priority in choosing a college. After all the recent issues, I wonder what the outcome might have been in a different school, and I wonder what the outcome might have been at his current school, had we been better informed of our rights.

All three of us are committed to the current school through sophomore year (albeit for different reasons). Now that he is out of the theater major, my husband and I would very much like to see him graduate from a school that is stronger academically in a wide variety of disciplines. He was accepted to several such schools. We would also like to visit the university that the Special Ed teacher had promoted.

Over the next three semesters, a lot might happen to reinforce my son’s commitment to his current college. On the other hand, he might be ready to take on new academic – not to mention social – challenges.

Wednesday, January 6, 2010

The Verdict

He will stay on the current medications and a little Occupational Therapy would not be a bad thing. We’ll look into that, either locally or near campus.

For the next two weeks, before he returns to school, my son will be focusing on losing the “freshman fifteen” that was so easy to put on. Today he and Dad are at the YMCA; Dad’s a member and our son is taking advantage of a free two-week “bring a friend” membership. All three of us have set weight loss goals in a friendly competition, though we have not identified the stakes yet!

Tuesday, January 5, 2010

Neurology Appointment

My son has an appointment with his neurologist today; he generally is seen twice a year or so. My son and husband went with a list of questions in hand:

My husband was going to ask if the doctor sees any need for occupational therapy, given all the issues that arose at school. My own thought is that OT might be helpful for specific life-skill goals, but he would not need OT just to succeed in his classes. One accommodation I think my son will follow up on with the Office for Students with Disabilities is the use of a PC or other keyboard for any written tests. He does not want to fail because the teachers could not read his handwriting.

My son would like to discontinue the medication that was added to his daily regimen about a year-and-a-half ago after he experienced significant “unsteadiness.” The dosage was cut in half after only a few months because of some unsettling side effects. He actually left it at school (more help with organizational skills is clearly still needed!), and he has felt fine without it.

I also suggested they ask how long he can continue seeing this doctor, a pediatric neurologist. Forever would be my hope – he’s been great through many crises. When my son first needed neurological testing at the age of four months, I never dreamed that as a young adult he would still need a neurologist. My son is basically healthy, smart and just a good person; regular visits to a neurologist can be tolerated – see you in six months, doctor!

Monday, January 4, 2010

A Ripple Effect

When my son started college last fall, he had a brief “Eureka!” moment with his Stage Tech class where he was really confident that he had chosen the right school and the right major. As the assignments became more challenging, he began to question both choices. Apart from the difficulty he was having with the class, he felt from the beginning that he was not clicking with either his fellow theater majors or the teachers.

While their role should have been one of guidance and accommodation, what I was most aware of was the fact that the teacher, the director of the Office for Students with Disabilities, and the dean that got involved were intent on “guiding” him right out of the Theater department. There was no mention of possible accommodations that could be made, and there was not even a suggestion of a less demanding major within Theater. His Tech professor (who also happened to be his faculty advisor) had my son register for general education courses for the spring semester, no theater courses. One of his fall courses was a half-credit course in “Theater Production” for which he was required to complete a certain number of hours helping out with different shows. This was to have been continued in the spring semester, for another half credit and more production hours. Since my son was “distracted” by the problems with the Tech class, he did not complete the required number of hours and failed the course.

What was more surprising was the poor grade he got in Stage Tech. He had called me after he got out of the final, and thought he had done okay on most of the test (there was a sewing practical on the exam that he gave up on, but he did not think it was a big proportion of the points). Given his other work during the semester (lighting, the building project and one or two quizzes), he was expecting a decent grade and was taken by surprise. I suggested that he drop the professor a note asking for the breakdown of his final exam and other grades and how each was weighted for the class. Frankly, I don’t think he cares enough to pursue it; he is ready to move on and leave the theater department in the rear view mirror.

One thing he will not be able to shed quickly is the blow to his self-esteem – which was the result of not only the bad grades, but also the no-confidence vote by the teacher. This is not the outcome you want for a child with a learning disability. Visiting with family over the holiday, my son twice threw in the towel on simple tasks (“I’m just not good at that”).

In a perfect world, it would have been nice to see the school offer my son an Incomplete on the half credit course, with an opportunity to complete the hours in the spring semester. And it should not be too much to ask how the Tech teacher came up with his semester grade. In an imperfect world, my son’s controlling mother would storm the school (just kidding).

I have lost a substantial portion of the esteem I had for this college; but what matters more is that my son has not.