Slowing Down for the Holidays

I’ll be off until the New Year at this point – although I will continue to nag…rather encourage my son!

Merry Christmas and all the best in 2010!

He Might Not Write It...But He Should!

A few months back, I had forwarded a link to this blog to the Asperger’s Association of New England. The executive director asked if my son might be interested in writing an article for their newsletter on adjusting to college life while dealing with Nonverbal Learning Disorder -- which might be helpful to students with any social communications issues. She suggested focusing on the social scene, roommates, or staying organized while carrying a full course load.

This is my way of reminding my son that he should really take a stab at this while he’s home. I think he would do a great job.

Good Morning, America

The Good Morning, America show reported today on the 1 in 100 statistic for children diagnosed with some form of autism that was just confirmed by the National Institute of Health. The diagnosis is four times as frequent in boys as it is in girls. Astounding. It’s not much, but the GMA guest reported that $60 million has been allocated for research into the cause (unknown) and treatment of disorders on the spectrum.

They reiterated that early intervention is critical for these children. Although my son was not diagnosed with Nonverbal Learning Disorder until he was nine years old, he had been receiving public services for recognized developmental delays since the age of two. Looking back, I don’t think he would have been diagnosed as on the spectrum at that age (and, technically, NLD may not be anyway); but an autism spectrum diagnosis can often be confirmed as early as eighteen months of age. Pediatricians are on the lookout for the toddler’s social interaction, language development and movements (especially repetitive behaviors, movements or tics).

An encouraging statistic is that most states offer preschool services (as did the state we were living in when our son was a toddler). On the minus side, only ten states require insurance companies to cover services for children diagnosed with autism. Outside services, which can cost up to $50,000 a year, are critical in helping the child overcome the challenges that such a diagnosis can present. Preschool and classroom services are great, but the more frequently the child receives the different therapies (speech, social, occupational), the better the outcome later in life.

If you have a diagnosis, or suspect autism or a social communication problem, ask for help.

Does It Work or Not??

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

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

Organizational Skills and Executive Function

This is a very broad topic, but I will file this little sliver under that heading.

I don’t know how many times I thought I confirmed with my son that he was finished with all his coursework with the exception of the two finals on Friday.

Obviously, “thought” being the operative word – I clearly did not get confirmation. I think I probably got silence or a shrug.

In any event, my son called me at work to ask if we had an Ethernet cable at home because he had and assignment on his laptop that had to be emailed to a professor. I told him we did, told him where it was and how to connect it. His next call was that he still could not access the Internet from the laptop.

Mom: “Are you sure it’s connected correctly?”
Son: “Yes.” (This does not sound feasible to Mom because the Ethernet cable, router and modem were all in good working order.)
Mom: “Try one of the other outlets on the router. If that doesn’t work there is a flash drive you can use in the drawer. Then call me and let me know if you were able to get the file mailed one way or the other.”
Son: “Okay.”

Well, I have not heard back from him. No news is good news and all that; it’s not like I could do anything more until I get home anyway.

Had he mentioned to me when I asked that there was an email that had to go out, we could have gone over the “how-to” sometime while I was home, instead of trying to figure it out from work. Anyway, I am assuming that he got it taken care of.

Losing the "Spare" Bedroom

First of all, last Friday’s fundraiser was a huge success and a lot of fun for both my son and me. Although I didn’t feel particularly eloquent (so much I meant to say and didn’t!), some people who heard it thought it went well.

My son is home most of this week, but will return to school Thursday because he still has two finals to take on Friday. Then he’ll be home until mid-January.

It should be interesting. I’ve been writing here thinking he would be reading this and absorbing some of what I’ve been saying. The reality is that he probably has not; and I will be faced with everyday reminders while he’s home that he still needs – will always need – encouragement and reinforcement of some of the basics.

I expect I will be writing less frequently for the next few weeks, but I will post as often as I can. If there are any specific issues or questions out there, let me know and we can chat about them!

A Time To Give

Back in early September, one of my entries was about the pediatric rehabilitation hospital in which my son spent several weeks following hospitalization for meningo-encephalitis. That particular page was forwarded to lawmakers in my state because the hospital had lost some vital funding.

I included the hospital’s development office in on my correspondence with my local representative, so they would know how much we appreciated what they had helped my son accomplish in the period following his illness. The hospital subsequently wrote an article about my son in their monthly newsletter.

Now they have asked my son to help out with their annual fund-raising radio-thon. He is very excited to be doing this, and will take the bus into town for the event tomorrow as soon as he has finished his last class. I hope to be there with him, work schedule permitting!

If any readers would like to hear my son talk about some of his experiences, health issues and rehabilitation therapy please visit the radio station’s web site and click on “Listen Live.” The fund raiser will be going on all day, and my son should be on the air between 5 PM and 6 PM, Eastern Time. If you can give a little to this great cause, that would be great. If not, I hope it will be uplifting to hear my son’s story and some of those of other past and current patients. Thanks! Back Monday.

http://www.937mikefm.com

More Headlines

My husband is a graduate of Indiana University (BA, ’72, MLS, ’74) and we receive the school’s alumni magazine. In the most recent edition (November/December 2009) was yet another article about the prevalence – “The Tidal Wave” – of autism diagnoses today.

Despite the increase, diagnosis is dependent on behaviors and there is no cure. An interesting point in the article is the fact that “everyone on the spectrum has a unique combination of symptoms... ‘If you know one person with autism, you know one person with autism.’”

My son’s struggle in social situations that comes as a result of his Nonverbal Learning Disorder, might strike a familiar chord with some readers. Others might identify to a lesser extent; still others not at all.

But I hope that some of what I’ve been writing is helpful to some parents or some young adults that are following this. As this blog becomes more widely read, I believe we will uncover strategies that will help each other.

Coming Back to Haunt Him

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

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

Exciting Weekend Life of a Commuter College

More often than not our son comes home on weekends, largely because there is not a lot to do on campus. But this past weekend, he stayed put.

Friday night he called to say how bored he was, although one of the kids had decorated the common area on his floor with some cheerful holiday decorations. He texted a short movie clip showing the new decor. Very festive! It also happened to be the first time I realized that I could take and view moving images on my cell phone; but that’s neither here nor there!

Saturday evening, he went to see a show on campus (he has a paper to do on the show as an assignment for one of his classes). Some time (long) after the curtain fell, my son and another fellow chipped in on a delivered pizza. While parents of high school and college students who are not dealing with social communications issues are used to this sort of thing, it was yet another momentous occasion for me!

While my son and his equally hungry fellow freshman were chowing down on pizza until 2:30 AM, another young man (apparently under the influence) was trashing the newly hung decorations.

Never a dull moment on the college campus. Thank goodness the school has a no-alcohol policy.

One Thing We DON'T Have to Worry About

For the first time is several weeks, my son is staying on campus this weekend.

Even coming home most weekends, it did not take him long to realize that the statistics about underage campus drinking are pretty accurate. When he arrived home with his laundry for the Thanksgiving holiday, there was an empty beer bottle stashed at the bottom, courtesy of his roommate or one of his roommate’s friends.

On a Tuesday evening before a rare midweek holiday (Veteran’s Day), my son called around 9 PM and said he was “wandering aimlessly” because some girls had arrived at his room with alcohol and he didn’t want to get in trouble. I thought he’d be safe to go back by 10 and told him they would probably be gone by then. I found out the next day that when he had arrived back at his floor it was pretty much a free-for-all. He ended up leaving with a few other students until the atmosphere had quieted.

I would like to think it’s the solid values we’ve instilled in him, but I have to admit that part of the reason he’s not yet ready to drink is that he knows it’s illegal. Most college students (present company included) that live in the neuro-typical world don’t really care about the legal aspect as much as they do the “getting caught” aspect – the empty bottle salted away in the hamper.

Either way, he doesn’t drink yet; one less thing to worry about for now.

Obstacles All Over the Place!

Yet another speed-bump on the Theater Major road. My son is taking a class in Movement for the Stage. As part of the final exam, the class will be doing a short presentation open to the public. However, not every student in the class will actually be on the stage and participating; my son is among a handful of students (though I don’t know how many others) who will not.

Question: how will the professor grade those not chosen to be in the show? Presumably, the fact that they are not going to be onstage is not a reflection of their competence or enthusiasm for the class. Are the students who will be on stage the ones who are very well coordinated – talented dancers (or “movers”)? Do these students get “As”, while those who are less talented get less than “As?”

There comes a time, and maybe this is what college is for, when that mantra we’ve given our children all of their lives – “Just try your best” – no longer applies. And learning disabilities and/or physical disabilities have to be considered. College is preparatory for the rest of their lives, and it is time to find out not only what they like to do, but also what they are good at.

My son really loves theater; he is a talented performer. But performance as a career is reserved for a very small number of people. He learned early in his college studies, that backstage work was not as appealing to him as being onstage, regardless of whether or not he was capable of succeeding at it.

For a young adult with Nonverbal Learning disability, my son is very well-rounded. He has a variety of interests and talents. He is currently leaning toward something in the Communications arena and I think he can be happy and successful with this option (even while acknowledging that it might not be his final choice!).

How to (Re) Enforce the Rules

We would really like to see my son keep his dorm room moderately neat. We are considering bribing him; it was my husband’s idea.

We may ask him to send periodic pictures of his room between now and the end of the semester – if it stays reasonably organized, we will reward him…maybe with a car…just kidding...sort of.

But it would be money well spent ($50??) if he could get in the habit of putting things in the same place.

A Long Break

I meant to pick up yesterday, but things got away from me over the long holiday weekend.

My husband and I drove our son back to school yesterday morning and helped him get his stuff upstairs. Walking into his dorm room was like walking into the Tenth Circle of Dante's Inferno. So we spent fifteen or twenty minutes (once again) helping him organize. But a system is only as effective as it is easy to stick to.

He clearly has difficulty in seeing the big picture…how will putting his books, toiletries, dirty laundry, etc. in the same place all the time help him in succeeding. Well, in our efforts yesterday, we came across loose paper in the bottom of the closet that turned out to be something he would need as a study guide for one of his finals. So yes, he needs to master the art of organization.

This is what we ended up with: a box with snacks and the like in the bottom of his closet; the laundry basket (you put dirty clothes in that) on the other side of the closet; a plastic container on the side of his desk with bathroom and shower items (soap, toothbrush, deodorant, etc); a plastic bin under his bed for extra books, DVDs and games; slots in the desk organizer for current class work, often-used games, etc. Finally, I know you might find this hard to believe, but he’s generally been using the floor as a trash and recycling receptacle, even though there is a handy trash bag on the bedpost and a recycling container near the door. We encouraged our son to try and use those; the dorm room definitely looks nicer without stuff all over the floor.

You see how I cleverly reinforced where everything goes by writing it in this blog (and hoping he looks at it)?!

Thanksgiving Break

Back on Monday!

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.

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!

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.

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.

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.

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.

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.

B.G.F.

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.

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.

Chug-A-Lug

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…

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 call...it 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.

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.

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.

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.

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).

http://www.llbean.com/webapp/wcs/stores/servlet/CategoryDisplay?categoryId=51638&storeId=1&catalogId=1&langId=-1&feat=msr

TA 245361, best size.

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.

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??

The Last Hardest Year

Maybe I should add “so far” to the title.

My son’s transition to high school was not easy; freshman year posed new problems, but (happily) also brought new skills.

In sixth grade he was friends with twins – newcomers to his school who left after one year. My son was looking forward to reestablishing ties with them at the high school – all of our town elementary schools (which run kindergarten through eighth grade) feed into one high school. He was disappointed when they expressed no interest in picking up where they had left off with my son, having never put the same importance on the friendship as he did.

This was one of the first times when he felt a need to communicate his feelings to peers, and it was a difficult thing for him to do. He was hurt by the fact that they were ignoring him; I think he was also more aware of how hard it was for him to make friends.

For the first two months or so of high school, he was disconsolate. The work load was demanding and the social scene was unfamiliar to him. The therapist (we called him a “talk doctor” when my son was younger) he had been seeing for some time was particularly supportive during this time, and I also let the Learning Center teachers know he was going through a rough patch. (I like to think that this was proactive on my part, and not controlling!) They introduced my son to one of the school’s social workers. He turned out to be the one extra person who was able to get my son out of his funk, by giving my son specific strategies not only to help him talk to the twins but also how to get involved elsewhere in the school.

By Christmas break of his freshman year, he was in a much better place. He let the twins know that he was hurt by the fact that they were ignoring him and they apologized; they had not intended to snub him and really had not been aware of the impact of their behavior. He was still not one to go out on a weekend night with friends, but he continued to play rec league baseball and that helped him cultivate peer connections. Having developed a taste for drama by doing a production in eighth grade, my son auditioned for and won a role in the freshman drama production of "Animal Farm."

Any young teenager goes through a period of finding themselves among their peers in a new situation, and it was not very different for my son. His four years of high school proved to be a true growth period – academically, physically, and in his own self confidence level. Social connections were coming as well, albeit much more slowly than a “proactive” parent would prefer.

These are the Wonder Years, the Formative Years, Ages 1 through 12...12...12...

A reader (apparently I have a couple!) asked about specific strategies for boosting self confidence for children with social communications disabilities in middle school.

In the case of my son, I thought at the time that these years were harder for his Dad and me than they were for him. In school, he really liked all his teachers, especially the specialist he worked with in the Learning Center a couple of days a week. Although he was not an outstanding athlete, he played soccer, basketball and baseball through our town’s recreation league so had a peer group outside of school. By then, he was too old for arranged play dates, so beyond school and team sports he didn’t really have friends over, or go to friends’ houses. Our town sponsored four or five dances a year for 7th and 8th graders, and my son went to many of them.

He’d come home afterward and usually said it was fun, or at least “okay.” And every time, my husband and I wondered/worried who he talked to there, who he stood with for that matter. There were those who would say to us, “that’s great that he goes; I could never do that when I was his age.” And a little voice inside me would be saying, “Well, he doesn’t ‘get’ that kids don’t usually hang out alone at these events.”

It was not until the last year or so that he told me that he was aware, either at the time or in hindsight, that he had few friends in elementary school. The part of his life that I had thought was harder on his parents was not so great for him either. On his way off – stag – to his senior prom, he mentioned that “At least I know I’ll have friends I can talk to – not like those rec dances.”

His Dad and I never pushed him to go to those dances; in fact, no small part of me often wished he would stay home. I think we knew he would be largely on the outside looking in. Yet of the eight or so dances between 7th and 8th grades, I bet he went to more than half. I don’t know why he went; I don’t know if he’s a more confident person because he went or if it might have diminished his self-esteem.

I do know that by that time, he already had a truly exceptional network of adults who encouraged him and engaged him, including teachers, therapists and family members. Moreover, his peers respected him – even if they did not go out of their way to invite my son to do things with them. There was never any of the teasing or bullying that creeps into the lives of some children with social communication disorders.

That’s not the best you can ask for under the circumstances, but caring empathetic adult relationships can compensate to a significant degree for a shortage of peer friends. For the first few years my son had a cell phone, most of his contacts were family members. He’d go “walk-about” and call his grandparents, aunts or uncles. They were actually good friends to him as well.

Step One

They say admitting you have a problem is the first step in dealing with it. Obviously a learning or physical disability is not a problem, but it is definitely something you have to deal with.

My son sent an email last night to his Stage Tech teacher, with words to this effect: I have a nonverbal learning disorder that makes it more difficult than normal to do these types of assignments. Can we meet?

This was after he went to the Internet to search for directions on how to do these particular stitches; he did find illustrations, but they were “too vague” to help him.

These two actions provide me with a good deal of insight into his odds for success in college. First, he took the initiative to try an alternative means to figure out this sewing assignment. Second, he acknowledged his learning disability. And third, he pointed out by saying "more difficult than normal" that this would "normally" be a difficulty assignment anyway!

It isn’t as though we hid the NLD from him for the past ten years; but neither did we ever really discuss the particulars of it during that time. However, last summer as he was preparing to leave, I gave him the write-up with the results of his most recent evaluation, which was really the best written of all the evaluations he has had. It was a clearly written summary of his strengths and weaknesses, the developmental history was right on target, and it ended with four strategies for success in the classroom.

At the time, he just filed it somewhere, and I still don’t know if he read it or even if he still has it. I did verbally stress the four strategies (which included extra wait time for him to formulate an answer, used of a keyboard for tests and assignments, extra time on tests and…hmm; I’ll have to get back with the last one!).

His teacher responded very thoughtfully, thanking him for the heads up, offering some meeting times to discuss it further, and reminding him of the availability of the school’s Learning Center. I assume that the latter will also be confirmed at the meeting he has next week with Disability Services.

Slicing a Bagel

My son was making himself a bagel for breakfast recently and I noticed that he was slicing it the “New York” way. I have heard (who knows if it’s true) that most of the Emergency Room visits in New York City on a typical Sunday morning are for hand wounds inflicted by bread knives while slicing a bagel.

A knife with a serrated blade works best for slicing bagels and crusty bread. Since you’re using a sharp instrument, do NOT hold the bagel flat on your palm and slice it toward you. I realize many people do this successfully every day, but it really is not the best way, nor is it safe. It’s usually going to be better if you place the bagel vertically on a counter or cutting board, hold the knife handle – blade down – with one hand and place the other hand over the top of the blade. Guide the knife through the middle of the bagel in a gentle sawing motion to the bottom and pull it apart.

Instructions on cutting a bagel might not be very impressive – can’t anyone slice a bagel, and can’t anyone do that any way they want to? As my son would say, “W/E” (text lingo for whatever); but please be careful.

Giving Up?

Today my son called to tell me that he intended to write an email to the Stage Tech teacher to let her know that this sewing assignment seemed beyond his capability. He told me it felt like he was “giving up,” but I think he intended to send the email anyway.

Some suggestions I gave him: Explain why you’re having a hard time; ask for, don’t demand an alternative assignment; copy the Office for Students with Disabilities in on the email, so they will at least be aware of the challenge. I asked if he wanted me to take a look at a draft, but his come-back was, “if I can be respectful asking that guy not to call me, I think I can manage this email.”

Is he giving up? Is it ever giving up if you’ve tried your best? I think it is okay to concede defeat once in a while, especially when not doing so becomes a major distraction from the bigger picture.

Is Anybody There?

This stirring song from the play and film, “1776,” has John Adams talking to an empty room.

Although the title of the blog is Instructions for life, for those who need the book…although the stated goal of the blog is to help adolescents and young adults who have social communications disorders…although my objective is to help my son be even more successful, I have to tell you – he is not the least bit interested in reading this.

For those who think I am too involved in my son’s life, rest assured my involvement is largely “virtual” – through this unread blog! Someone will get something out of it some day…I hope...

Office for Students with Disabilities

A few weeks ago, when my husband was picking up my son for the weekend, my husband stopped in to the college’s Office for Students with Disabilities. He was impressed by the people he met, and suggested to my son that he should stop in and talk to one of the intake advisers.

Unfortunately, my husband had the fellow’s name wrong. When my son asked for him yesterday, they said there was no one by that name working there. Still, he set up an appointment to talk about potential accommodations in two weeks.

In the meantime, stealth Mom dropped a note to find out the person’s name and he responded promptly, and suggested that if my son felt he needed to get in sooner, to just call him. I forwarded his response to my son, so he would have the contact information. I hope he will make the call; but – worst case – he has the appointment.

And that’s a good thing. Because when he met with his faculty adviser today, they talked about next semester’s courses…and that was pretty much it. I asked if he mentioned the sewing assignment; no – he forgot.

After about three days of stressing about tying a knot in thread and sewing a seam, I was surprised that he would forget to bring up the subject; could be that it was not the forum to discuss particular classroom problems. In any event, she had offered help to the class for anyone who needed it. At some point, I know he will figure it out.

Yes He Can

My son is really enjoying this Ultimate Frisbee. What I had assumed was a pick-up game has evolved into an intercollegiate team, and there is a game tonight against another local school. Though the game roster is limited, he intends to go to support the team and he will continue to practice with them.

But it wasn't all good news. In the matter-of-fact way he has of speaking, he announced to me that he was not sure he could handle the workload of his chosen major (Theater). In addition to the class work, he will be required to have 50 hours of practical work on shows, and he didn't see how he could do it. Not for want of trying -- recall that he was replaced as an assistant Stage Manager for a live production early in the semester. I could not tell if he was looking for an excuse to change majors; if so, I would not be the person to give it to him.

I pointed out that any major would be difficult and would require a tremendous amount of work on his part. I reminded him that most days when we talked he assured me that he did not have a lot of homework. So was he fretting about the potential for a heavy workload? I suggested he back-burner this decision, and cross that bridge when he comes to it. Clearly the workload right now is manageable.

I think one of the things that precipitated this crisis of confidence is that he is currently working on a sewing assignment for a Stage Technology class. Because of fine motor delays, my son has used a keyboard for written assignments almost since he learned his letters; it doesn't surprise me that he's having trouble with sewing. But he is also letting this experience cloud his judgment. He seems ready to give up over -- not even one class, but one assignment in one class. Moreover, this was the same class he had come out of only a week or so ago, when he called to tell me it was so good we should be paying more tuition (gee, thanks, Stretch).

I shared with him that he was used to having a real support net that was always under him for the past twelve years -- so unobtrusive that he barely knew it was there -- until now, when it's gone. He just said to me that maybe he was over-confident about being ready for college and "should have taken a gap year."

NO!! I know he is ready for this. But the disability for which he received support services all those years is not going away. The only difference now is that he has to ask for that support. Once it's set up, I think it will be invisible once again, a part of the fabric of his life. The college has a disability services office that has his most recent evaluation (mid-junior year); and my son's academic advisor happens to be the teacher for that Stage Tech class. I told him that either of those would be good places to start when he was ready to ask for help.

He called earlier today to say he was going to the Office for Students with Disabilities and "what do you think I should say?" I offered some openings, which is usually all he needs: Tell them you are feeling so overwhelmed by the workload in general and the sewing assignment in particular, that you are questioning whether you can get through this at all. Tell them you've had great people to work with in the past, including a private therapist and a school counselor in addition to academic support. Ask for direction.

Unfortunately he just called again to tell me that he could not set up an appointment with anyone until November 3; sarcastic remark: "that was helpful." He does have a card and phone number for one of the people who works in that office that his Dad got a couple of weeks ago and I told him he might want to call that person and ask if there's any hope of getting to talk to him sooner. Again, in his matter-of-fact manner, my son let me know that he had set up an appointment with his faculty advisor for tomorrow at one. Perfect! He seems to have everything pretty well under control; but he either doesn't realize it or he doesn't believe it.

How to Say Leave Me Alone, Nicely

The man my son met at the bus station a week or so ago has called him several times a day since then. He has sometimes left a message, but mostly he has not. My son stopped answering the calls after the first two.

This is an unusual situation for neuro-typical people, but – I suspect – much more common for our trusting children and young adults with social communications problems. My son was torn between wanting to be nice to someone who needed a friend, and wanting to ignore a man who was pretty much stalking him. My son never felt threatened, but he did start to get the sense that this friendship was destined to go nowhere. He did not want to hurt the man’s feelings, but the constant calls were getting to be a distraction.

I suggested to my son that he let the man know that classes were demanding and he was very busy – too busy to meet, and even to busy to chat on the phone. I suggested that he close the conversation with “Maybe we’ll run into each other downtown some time.”

My son made that difficult phone call last night. He waited until after 11, thinking the fellow would be sleeping and he could just leave a message, but he answered and they talked for a few minutes. I think my son handled it perfectly. He felt badly, but he also felt relief. I did too.

Editorial Comment

In our local paper this past Saturday, Doug Flutie wrote an editorial regarding the lack of health care coverage for services that autistic children need (Boston Globe, 10/17/2009). Doug Flutie’s son, Doug Junior, is autistic; and the former star quarterback has been a staunch advocate and fundraiser for autism research. He pointed out that, while it has been well-documented that one-on-one speech, occupational and physical therapy are some of the services that improve the lives of children with autism spectrum disorders, the only subsidized services that they receive are through their schools. Most Health Care insurance plans will not cover additional services outside of school.

My family is fortunate. My son’s learning disability does not leave him deep in the autism tunnel. The services he received through our school system were excellent. The services outside of school had mixed results. He has a psychologist who has been helping my son deal with his learning and social issues with phenomenal results. But – as I have written before – the group social skills classes were less successful.

In the forefront today is the teacher who worked at our elementary school’s extended day program who taught my son how to play Ultimate Frisbee, which continues to be his most solid connection to college peers so far.

Why?

My son was hospitalized for the third time in four years in the spring of 2008. In the middle of pre-season “captain’s workouts” in his second attempt to make the high school baseball team, he had to call it quits because he suddenly became unsteady. He made it home and off to the ER he went. They sent him home that night after increasing his Tegretol dosage, thinking it might be break-through movements. His Dad and I knew better and the next day with no improvement we brought him back and he was admitted. It turned out to be a brief stay, as the symptoms subsided. His neurologist identified the way my son was walking as “Parkinson’s gait” and added a low dosage of a Parkinson’s medication.

While he was hospitalized, they ran tests to see if they could get at any kind of root cause to my son’s physiological issues. One result was the discovery of a genetic mutation (a chromosome 16p deletion, which actually has a longer identifier) that was believed to correlate with incidences of autism. While this explains only a small percentage of autism cases, it gives hope for further advances in genetic evaluation for autism.

We were asked to take part in an ongoing study, and I received a letter yesterday that the results of the study were to be presented on October 28th at a Harvard Medical School building in Boston.

For more information, please visit www.autismconsortium.org. The site has links to many additional resources.

Vulnerability

I think parents whose children have learning differences tend to worry more than parents whose children have no learning issues. In my opinion, as a parent of the former, this extra worry factor is both normal and justified.

My son is much more trustful than other adolescents, and in some ways more naive. Because it is sometimes hard for him to make friends, he finds it easier to talk to people who take the first step.

When he was doing out-patient therapy five years ago, he got in the habit of stopping at Starbucks. The baristas knew him and what he ordered, and one (Steve) was particularly nice to my son. One day my son called me at work to tell me he met a really nice guy at Starbucks. The guy was “in his 30s I think” and they talked about school and “stuff.” My internal alarms started going off, but I was able to get enough details to get the sense that the meeting was benign. Nonetheless, I called the Starbucks, and spoke to Steve, explained who I was (“grande caramel frappacino’s Mom”) and told him about the conversation I had just had with my son. Steve recalled seeing the guy and, while he was not a regular, Steve told me that he seemed okay. I asked him to just keep an eye on my son whenever he came in and Steve said no worries. And then I had no worries (fewer worries, anyway).

Yesterday my son took a bus to a nearby mall. Since he was not sure of the schedule, he ended up waiting about forty-five minutes at the depot downtown. He called last night to let me know that he was able to get a charger and he was all set. And, by the way, “I started talking to this guy who was also waiting for the bus.” The man, apparently in his fifties, told my son that he was learning disabled; I don’t know what else they talked about in that time. But they exchanged phone numbers and last night my son told me the fellow had called him and left a message. My son was not sure if he should call back or not. My gut was screaming “NO!” My mouth said, Gee, that’s a tough call. You’re trusting like Dad and I am very distrustful most of the time. But IF you decide to call him back, please don’t make plans to meet him anywhere alone, please make sure you’re in a public place, and please only in the daytime. You need to be careful.

So today he called me about lost keys (another entry) and told me that the man had called him twice last night when my son answered and called him again this morning and left a message. All of this contact was setting off my son’s own internal alarms. Plus he said the message the man left (“I have something to tell you”) felt "off" to my son. Time for me to put my foot down: "Okay, please don’t call him back and don’t answer if he calls you. I’m sure he will eventually give up, but if he continues to call and you’re concerned, go to the campus police and let them hear the messages."

You want your child to make friends; you want her to be more outgoing with peers; you want him to be part of a group. But not like this. Am I paranoid? Cynical? Or just careful?

How to Keep Track of Everything

I suppose if anyone knew the answer to that, they’d be wealthy. The short answer is probably -- impossible! I’ve written about my son’s difficulty in staying organized before. First it was what he forgot to bring home and what he left at school; this week it’s what he forgot to bring back to school and left at home.

He called Monday to let me know that he was pretty sure his iPod was still sitting on his desk at home. Sure enough, there it was. And by the way Mom, could you look around for the new video game I bought over the weekend? I was sure I put it in my backpack, but it’s not there now. Good old Mom found it on the floor of his room, tucked behind the TV stand. Lastly, I got a text from him yesterday saying that he seems to have left his phone charger home – that was right before his phone went dead. And yes, the charger is right on the floor partly under the bookcase, where he left it.

We all do this, and some of us do it more than others. Moreover, in my son’s defense, he has gotten infinitely more careful about keeping track of his belongings. He has not lost or damaged a cell phone in more than two years. I think the problem is rearing its ugly head at this particular time because this is such a major transition for him. It’s one thing to go from your room, to the dining room, to school, back to the house and to the kitchen, for a walk downtown, etc. All of that represents the small world he was in only two months ago. Now he’s pretty much got two worlds to keep track of, and it’s clearly hard.

I’m not sure what the solution is; maybe an oral checklist would work until he gets used to the bi-locating. I should call him on the day he’s coming home and make sure he’s got all his laundry, books, medicine, phone, and any other necessity. Oh, that’s right; I can’t call him and remind him of that because his phone is dead because he left his charger home. Plan B: get duplicates of some necessities. He is on an adventure today taking a bus to a mall, in search of a phone charger that he can leave in his room.

Academics First

While my son was home this past weekend, we celebrated his birthday a week early – cake, ice cream, singing, blowing out the candles and presents. We went to a pro soccer game and finished the weekend with a lobster dinner (much to my daughter’s dismay!).

At some point over the weekend…okay, maybe more than once…I asked him if he had any homework he should be doing. The short answer was, at various times, a shrug, a grunt, a “maybe,” or ignoring me. I (half) jokingly told him he better not flunk out, and he replied that he was thinking about flunking out on purpose; which was his idea of a joke.

He just sent me a message regarding a grade on a paper that confirms that he really is serious about his academic performance. I think he’s doing the right thing concentrating on his studies. This grade shows me he’s got the big picture in perspective.

But the devil is in the details. After a virus infected his laptop last week, the Tech Support office was able to restore it, but my son neglected to tell them what files he needed to keep. I followed up with the Tech office to see what they could have done better, in terms of checking for documents; I also let my son know what he should have done. Most PCs have a user folder called “My Documents” where text files and spreadsheets get saved by default. My son should have been aware of that; and obviously the Tech people should have been. Fortunately, there was not a lot to lose at this point in the year, but it could have been a disaster.

Since he had lost not only his recent homework, but also his music and pictures, we had to recreate those libraries as best we could. We also talked about copying files periodically to external storage; and I sent him back to school with one back-up and a box of empty disks.

As he had done in elementary and high school, he had created a folder for the year called “Freshman Year.” Because his schedule is a little more complex than it was last year, I suggested he might better organize his work by creating a folder for each class and keeping all the work associated with a particular class in a separate directory.

He’s been working hard; the rest will come in good time.

Cell Phone Etiquette For All

Every weekday morning and evening I commute to and from my office on public transportation. And every morning and evening I am subjected to telephone conversations that I really don't want to hear.

This is not a lesson only for people with social communication disorders (who, in fact, are probably less likely to be offenders). This applies to the general population.

How can you talk to a friend or family member on public transportation and know that everyone can hear (at least) one side of the conversation? On occasion, the volume has been up high enough and the person was sitting close enough that I could actually hear both sides of the dialog: "OMG! She was so wasted!" "Really? What happened?" "She passed out in the doorway of the apartment and her roommates had to drag her in."

Or how about: "Hi, Dad. How was your weekend?" ... "Yes, I'm on my way to work but I thought you'd be awake." ... "Oh, was Mom there too?"

Are you kidding?? Just a few years ago these conversations would never have been taking place within earshot of anyone else. No emergency, no pressing news to share; just gossip or chit-chat.

By a wide margin, the most frequent offenders are young adults in their 20s or 30s; but this indiscretion is by no means limited to that age group.

For anyone reading this and seeing themselves (or feeling kinship) the first thing that goes though my mind is -- If someone is so bored, inconsiderate (or whatever else might cause this) that they feel the need to take out the cell phone just for the sake of shooting the breeze, I would never hire that person for a job that requires customer contact, colleague contact or just tact. Before you dial or answer, think about who is sitting in the next seat, and hope that it isn't the person you are about to meet for an interview.

The second thing I think is -- Hang up! No one cares!!

A (Not So) Small Victory

I asked my son if he intended to go down to the lounge to watch the Red Sox-Angels ball game with a group last night and he said no. He then added, “A friend is coming here and we’ll watch it in my room.”

I would love to know how that came about. If I find out this weekend, I’ll post about it!

Honesty is the Only Policy

A curious trait that my son shares with most of those who have social communications disorders is an innate inability to lie. He is usually incapable of even the harmless white lies people tell in order to spare feelings, avoid arguments, or for whatever reason. Once when he was about twelve or thirteen years old, my husband and I were joking about our looks and I commented something like, “I know I’m not a ten – probably an eight!” My son chimed in with, “I think you’re more like a six.” OUCH! Imagine when he meets that special someone and she says to him, “Does this dress make me look fat?” Oh, we got trouble…right here in River City…

The first time my son lied to me he was in sixth grade. (In stark contrast, I think my daughter was in second grade the first time she told me that of course she had brushed her teeth, when she really hadn't). He was sitting on the couch as I was going to get the mail and I asked if he was wearing his retainers. “Yes.” Then as I continued to the mailbox I heard him running to his room to get the retainers. By the time I got back, he was sitting on the couch again. Some parents would be annoyed; I was delighted – and laughing out loud!

Because it is hard for people with social issues to feel empathy, they frequently don’t think about how someone would feel when they hear a truth that casts a negative light on the receiver. My son did not intend to hurt my feelings (and fortunately I have thick skin!) – If you’re a six, you’re a six. It was as though he saw it as a label, not as a description, so why would it hurt your feelings? On the other hand, he himself is very sensitive to criticism. I think this inner sensitivity that he has should eventually help him to understand better the impact his words might have on other people.

The social acceptability of white lies that serve the greater good is an important lesson to learn and practice. Don’t tell your Mother she’s a “six;” don’t tell your significant other that, yes – that dress does make you look a little fat. Before you tell anyone a truth that has a negative perspective, try and categorize it and decide if the person might think it’s nice or not so nice. Putting it into either of those slots might be easier to do than trying to determine if it will result in hurt feelings. It is really an art to be able to lie a little, just enough to avoid a misunderstanding, without sounding insincere. For better or for worse, most neuro-typical people are quite adept at this.

For my son, telling the truth is usually the right thing to do; why would you lie? However, in sixth grade, he discovered that lying could come in handy!

Emily Post - Table Manners

Manners can be learned in many different ways, or sometimes never learned at all. At this point in my life, I am still acquiring new behaviors that are the “norm” in “polite company.” Still, such behaviors are not practiced by everyone, and they are not even practiced by all adult “neuro-typicals.”

Between my mother and her sister, I acquired the rudiments of dinner and table manners (and would remember to use them) by my early twenties:

- Put your napkin on your lap when you sit down

- Fork goes on the left, knife on the right

- Eat to left (your bread plate is to the left of your dinner plate), drink to the right (your water glass is to the right)

- Use silverware beginning on the outside and moving inward toward your plate

- Small fork is for salad, larger one is for dinner

- Do not start eating until everyone at the table has been served

- Keep your left hand on your lap and eat with your right (although Europeans eat differently)... and try and chew with your mouth closed

I remind both my children of these conventions frequently, and my son’s most recent refresher was as he was getting ready for his prom. After the basic reminders listed above, I finished with the instruction that not many people need to get, “Use your napkin -- keep the food off your face.” I have to assume that table manners are less important in the college cafeteria (except for that last bit of advice).

Increasing Numbers

The print, radio, television and Internet news services have all carried stories yesterday and today about the increased prevalence of autism spectrum disorders. The latest figures put the number of American children with any form of the disability at about 1 in 100; and for boys only, the incidence is much higher – 1 in 58. It is not clear what has caused the dramatic increase, and some have said it is a question of better diagnostic tools and tests, as well as a broader definition of ASD.

Concurrent with these news releases have been anecdotal stories of children, teens and young adults coping with the milder forms of autism, such as Aspergers. There is a cottage industry of “social coaching” for high-functioning autistic teens. They learn how to enter, hold and maintain a conversation; how to make phone calls, how to be a good host for company.

As I read, I made a mental inventory of which skills my son was good at, which he was improving at, and which he was not yet so good at. I think he has learned pretty well how participate in conversations. Although if there are adults around (parents, teachers) he is still occasionally likely to let them take his role, asking the appropriate questions and sharing information.

There were a few things that struck me in one of the articles I’ve read over the past two days. The first was that, try as they might to do and say the right thing, there is about a 50-50 chance that a teenager with a social communications disorder will be “rejected” by a teen peer (although I prefer to think of it in a less harsh phrasing – maybe that the peer would not be fully inclusive). My son was really never rejected in grade or high school; but neither was he included in any particular group when it came to activities outside of school. This actually had an upside, in that my son always worked hard on his homework and graduated from high school as a member of the National Honor Society. Still, I would not have minded seeing an occasional “C” in exchange for a couple of friends he could go to a movie with.

The second thing that I was happy to see was the mention of the social networking site, Facebook. This has become an extraordinary part of my son’s social life. He can connect with friends without the pressure of reading faces or tones. Every child with a social communication issue should create a page on Facebook as they transition to high school.

Finally, I was surprised to see one of the girls in the coaching class say that she’s “always known [she’s] not normal.” What courage! But it makes me wonder how she came to that conclusion, and how her parents react to her saying something like that. I know that children, adolescents and adults living with some mild form of autism spectrum disorder are as normal as they can be. Still, how many times has my son done something as innocuous as stepping away from me when I try to hug him, that made me think, “I just wish he were normal.”

Whose Life Is It, Anyway?

Over the weekend we attended “family days” at my son’s school. Friday night there was a performance by the 57 first year theater students; Saturday there was a reception, barbecue and family carnival.

The presentation and skits that were performed on Friday pointed to just how strong the school’s theater department is. The signature piece was the story of Snow White, during which the students not only rotated in and out of the principle parts, but also played different parts of the actual set – picture 45 or so students playing the queen’s throne room, the castle décor, and the table and beds in the dwarfs’ cottage.

It also opened the window (albeit narrowly) on how my son was relating to the other theater majors. I can’t say if he is friendly with them beyond the classroom, but he did look comfortable.

On Saturday, I let him know that I was writing this blog. He seemed neither put off nor particularly thrilled, although I think he will eventually check it out. This was not an easy decision for me, but the intended purpose of this is to help him; it won’t help him if he doesn’t look at it; he can’t look at it if I don’t tell him it’s there…

I hope I can stay true to my goal going forward, but it will be a little different, if not harder.

Short Takes

One of my son’s elementary school specialists was telling me (during a recent meeting about my daughter) how determined my son always was when she worked with him. She not only liked him as a student, but she admired him as a person.

The rehab hospital (Franciscan Hospital for Children in Brighton, Massachusetts) that took such great care of him five years ago would like to publish his (success!) story.

The high school speech therapist who -- among other things -- was instrumental in getting my son to stop wearing sweat pants and start wearing jeans (!) called today to see how he was doing in college. She was so happy when I was able to say "Really well!" and could not wait to pass the word on to other staff members who taught him.

My husband stopped by the Office for Students with Disabilities at our son’s college and they are hoping to get to meet our remarkable young man. But he will have to initiate the contact himself. I am hoping this will be the start of another symbiotic relationship – my son has benefited for many years from his work with specialists, but their lives have been enriched by my son as well.

Shirts

Shirts have never been a problem – like most kids, boys anyway, my son has a few hundred T-shirts (or so it seems). Thankfully, there are not many occasions when a young man has to wear a shirt and tie. Those times when such attire is de rigueur are daunting. Never mind that my son can not tie a Windsor knot; how many kids his age can?

The buttons themselves of a dress shirt are problematic. I’m not sure he has yet gotten out of the house on any of those more formal occasions with the top button buttoned – not even for the prom last spring. We (Dad) would tighten the tie as best we could to hide the open collar, and send him on his way.

The other problem with buttons for my son, has been lining up the button with the correct button hole. In itself, this would not be a big deal. Who has never mis-buttoned a shirt or coat? However, sometimes people with social communications issues don’t notice that they are buttoned wrong; my son would have left the house more than once not realizing it, or at least believing that it was not a big deal. There were many times that we would help him re-button, or (as he got older) tell him to re-button. A more-or-less harmless statement like, “Hon, your shirt is buttoned wrong; fix it, okay?” would bring out the worst in my son. As I have written before, he often is not receptive to criticism, tending to internalize well-meant remarks as an almost personal affront. My son would sometimes respond non-verbally with a whine or a groan. That was two strikes against us (or the shirt, I’m not sure which): the criticism, and the fact that he had to undo and redo a task that taxed his fine motor skills. Over the years, he’s learned to be more careful the first time; he also is both more aware now if it happens and quicker to correct it.

One more note on pants and T-Shirts: the tag almost always goes in the back! After several painful lessons (perhaps more for me than for him), sweat pants, gym shorts, T-shirts, etc. generally get put on correctly the first time.

What to Wear; How to Wear It

Let’s start with pants. Without going into too much detail, my son was always most comfortable in clothes that were easy to wear. For nearly all children, new-found independence comes with successful potty training, but my son really took very little interest in his wardrobe. So throughout grade school and into high school, we let him wear sweat pants or warm-up pants to school – no zippers, no buttons or snaps to struggle with. It never occurred to us that part of being accepted by peers was dependent on looking like peers, fitting in.

So, on the advice of one if his teachers, we went shopping for jeans. While some kids would be looking for the cool pair, my son didn’t care; as long as they weren’t hard to button. The first few pairs I bought for him had a snap closure, rather than a button. It was very hard for him to get a button through a jeans buttonhole because there is not a lot of give in the buttonhole stitching. Although my son has passable athletic skills, his fine motor skills were not as good, so buttons, scissors-work and handwriting were some of the more difficult tasks he’s had to master.

In addition to getting the buttons to close, there’s also the zipper to worry about. Oh, that’s right – most people (neuro-typicals) don’t worry about zippers. But a lot of zippers won’t stay closed unless you lock them by making sure the zipper pull is flat against the zipper. Failure to do so can lead to embarrassment. Who taught you that?

More on Cleaning Up

Once again when I dropped my son off back at his dorm, I could not help but notice that his room was in a state. Cleaning his room at home was something for which I finally learned he needed instructions and I posted a list on his closet. In fairness, I posted the same list on his sister’s wall, so maybe it’s not so much a result of his learning disability. The list ended with “If it’s open, close it” which, I think, is one of the easiest ways to make a room look neater. However, in the five or six years that the list has been hanging there, I was never sure if he read it.

At home last weekend, he made himself a bowl of oatmeal and a cup of tea for breakfast. This entailed taking the oatmeal out of the pantry, taking the bowl out of one cupboard, taking a measuring cup from another, taking a spoon from the silverware drawer. He then put it in and took it out of the microwave. He took a mug from another cupboard and made himself a cup of tea. At the end of this process, every single door and drawer in the kitchen was open. I called him back to the kitchen, and said, “What do you see?” He immediately caught on and closed every one, even without anything more specific being said. Maybe he did read the “how to clean your room” list.

So last Sunday, I looked at his dorm room and saw a mess; but he often does not have the same reaction. If he picks up most of his dirty laundry and leaves a few socks on the floor, his room is clean. If he moves half of the books and papers that are scattered on his desk, the desk is cleared off. At this point, I really can’t put a checklist on his dorm wall with reminders to clean up. And it’s not like his roommate is a clean freak (thankfully). But there is a discernible difference in the two sides of the room, of which my son is utterly unaware. I tried to clean up and discretely point out that there were wrappers and bottles on the floor and he carted things off to the trash can.

Is being prone to clutter part of my son’s learning difference? No, not really; though NLD does have an impact on his general organizational skills. But the fact that he’s often unaware of what is in disarray and what is well-ordered probably is. So I’ll keep reminding him and, in good time, it will stick.