Wednesday, September 30, 2009

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?

Tuesday, September 29, 2009

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.

Monday, September 28, 2009

Order From Chaos

It’s very hard sometimes in this process to protect my son’s privacy, yet publicly acknowledge his differences and try to help him and others like him. At this stage in his life, as a young man away at college, many of his challenges are similar to those of every other college freshman living away from home; but they are amplified to some degree by the social communication problems and the learning disability. At home this past weekend, the level of anxiety was clearly notched up.

He had applied for and been given an extra-curricular assignment related to his major. A week later he received an email saying he had been replaced. There was no reason given, but let me put the potential explanations out there. The two best reasons are: the job was reassigned to a student who had more experience; or it was shifted to an upper-classman, perhaps one that had not been available when it was initially posted. Another possible explanation came to light as we discussed this situation over the weekend – he had forgotten to go to an introductory meeting on the project. However, I’d have thought any of those three reasons would have been clearly stated so the person losing the position would understand why. As written (although I did not see it), the email sounded like it was insensitive to the recipient's feelings.

Another potential reason that crossed my mind was that the person in charge recognized that my son had a learning difference and came to the conclusion that he would not be capable of managing the responsibility. Of course, that’s the reason that makes me want to scream, “He’s really talented – just give him a chance!” But let me put that aside for the time being and keep this in perspective.

First, the email did state that there were other positions open where the team could use help. Second, he did miss the meeting – he said he just forgot about it. Finally, there were two other very minor slips that would also be very typical of a first year college student. Both involved assignments: one that he did not hand in because he couldn’t access a printer on time. In the the second case, he lost the actual writing assignment and ended up putting an essay together that he thought was close to what was expected. Both of these turned out fine. In the case of the printer problem, the teacher allowed him to email it; for the other assignment, I think he got some credit for leaving her a message asking about it (although he did not get a reply) and showing up with something written, rather than just an excuse.

From my point of view, the lesson learned was axiomatic: Dude, you need to be better organized. The support my son received in elementary and high school really did prepare him for this point in his life. But (Nonverbal Learning Disorder) – no one told him he should be ready. After I caused him to have a crisis of self-confidence, we talked about using those organizational skills that he had acquired. Get a folder (or several) for important class papers, find a calendar that would be easy to use and that he actually would use. He uses a backpack on campus that is well-designed; we talked about keeping things (including his medicine, which didn’t make it home this weekend) in the same pockets so he would not only always know where they are, but he would always have them with him. Take out the calendar each evening and put it back in the pocket when packing up for the next day. In his old school system, there was always someone to check his assignment calendar and make sure he was on top of everything. Now he's on his own.

He can do this.

Friday, September 25, 2009

Jett Travolta

Off topic a bit. I'm sure there are hundreds, possibly thousands of people writing today on the fact that John Travolta only "admitted" yesterday that his son, Jett, was autistic.

Having a chronically ill child is not something you "admit." You deal, you cope, you seek medical (sometimes spiritual) advice, you nurture, you medicate if necessary, you care for, you love and cherish; but "admit"? Whether Jett's parents chose to share his medical issues with anyone else would have been a completely personal and thoughtfully made decision.

My son first started having seizures at age four months. Before he started on his current prescription at about age two, we never knew when he would seize. We were extremely careful about making sure he had his medication regularly. I remember taking my mother out to dinner one night and saying something like, "Oh, it's time for his epilepsy medicine." My usually supportive mother actually shushed me! To avoid friction in the future, I just stopped using the "E" word.

There are similarities between my son's issues and those of Jett Travolta: learning disabilities on the autism spectrum and a seizure disorder. But the disparities between the two are more striking, and give evidence of just how far it is from end-to-end on that continuum. My son is highly-functioning, successful in academics, has always been fully integrated into his classroom; he's able to plays sports; he's loving and often empathetic. His seizures have been fully controlled since the age of two, with only minor breakthroughs as a result of forgotten doses (and one major seizure two years ago that resulted from several consecutive missed ones).

My son's favorable prognosis and the fact that he can be taught skills and strategies that help him interrelate rather than co-exist with others led me to putting these short pieces together. Had his disability been more serious, this blog would likely have taken a very different path, assuming there was a blog at all.

Thursday, September 24, 2009

On the Phone

Because of his dysfluency, my son sometimes has a difficult time on the telephone. He actually does much better with relative strangers than he does with relatives. He seems to make more of an effort when speaking to people outside the immediate family to overcome the initial onset pause.

Since he's been at school, we've talked nearly every day for at least a brief conversation. As a result of this more frequent telephone interaction, I've become much more aware of the pause (sometimes painfully aware). Once or twice, I've taken on the role of speech therapist and reminded him, "Easy onset..." -- but he pretty much ignores me I think!

When he has to make a phone call to someone outside his comfort zone, whether it's to the Tech support desk or to someone in a class to check on an assignment, I believe he's learned to give some thought to what he plans to say before dialing. At home, I used to nonchalantly coach him. For example, he acted as a Junior Mentor to incoming freshmen when he was in high school. He was expected to call up the eight or so freshmen in his group and introduce himself and explain his role as a mentor. In this case, and almost always, I started my "coaching" with "Just say..." I think that prefacing it with that little word made the call seem easier, less weighty -- no big deal. To that point, he had little experience talking with peers; it helped him to have an idea in advance of how the conversation might go.

When he's speaking to me or to his Dad, there are usually a few of these long pauses; when we know that he has something to add, but is having trouble getting started. Although both of us know to give him time, I still think it doesn't hurt to remind him (nag him?) every once in a while of the strategies that he was given to help him get the words out.

Wednesday, September 23, 2009


I am so pleased to be able to write that my son's difficulties in peer communicating do not seem to be holding him back at college. Near the end of grade school, I used to think to myself, "High School will be different." It was, but not as much as I had hoped. In the past year, I've been thinking "College will be different." It qualifier!

My son mentioned that the other afternoon about 20 guys went down to a park on the beach near school (not bad to have a beach within walking distance) to play intramural Ultimate (that's short for ultimate Frisbee, although I still don't get the game -- I think it's like football). Then later that evening, a group of 15 or so kids -- guys and girls -- took a late night walk to a coffee shop.

To top it off, he returned the wrong and picked up the right tool, AND got to the post office where he picked up two books I had ordered for him and a "care package" from his grandmother.

This is all very good news for a worried parent, and it affirms my appreciation of the services he received from our school district in grade school and high school. He was nurtured and encouraged by some of the best teachers and professionals I've met.

A few more days...weeks...years like this and I'll breathe a sigh of relief.

Tuesday, September 22, 2009

Days Like This

My son just called: He couldn't get his assignments printed in time for some classes. He's got mail in his mailbox, but the combination lock is temperamental and he can't get the door open. He went to the hardware store three times (first time it was closed, second time he wasn't sure what he was supposed to get) before buying the wrong tool anyway for a class. The controller for his video game system has gone missing, apparently borrowed and not yet returned.

We talked for some time about how he might handle each issue. Before we hung up, he had a mental list of things to take care of. He was going to ask someone on the desk downstairs to get his mail out for him. He'll bring his syllabus home this weekend so he can get the tool at our neighborhood hardware store. He'll check again with his roommate to see if he left the controller in someone's room. I think he'll need his own printer, but in the meantime he will have to make a concerted effort to get to the library or other office where he can print homework so he isn't handing in late assignments.

On days like this, I wish I could do more for him. It's such a fine line. He did tell me he could use a neck massage, so I texted him: "I am massaging your are relaxing...all stress is floating away..."

Monday, September 21, 2009

One Small Step For A Man...

I read somewhere years ago that those were Neil Armstrong's intended words when he stepped down to the surface of the moon. Whether he neglected to say the "a" or he spoke quickly and elided over the word, I can't say. His famous quote makes more sense though when you add that little article back.

Anyway, my son accomplished a feat of independence at school. He went to the Tech Support office and got his wireless connection straightened out. He will still need an Ethernet cable for easier Internet access from his dorm room, but for now he's got a workable solution. As tempted as I was to take control, I (more or less) stepped back and let him handle it...and handle it he did.

Friday, September 18, 2009


There is a movie currently playing in theaters called "Adam." I haven't seen it yet.

Adam is the story of a young man who has Asperger's Syndrome. When a pretty young woman moves into his building, he finds himself attracted to her on many levels. The movie follows the evolution of their relationship, as Adam struggles with his undeveloped social skills. For now I'll share two brief clips.

In the first, the upstairs neighbor (Beth) is upset. Adam says "I know you're upset, but I don't know what to do." Beth replies, "Could you give me a hug?" And Adam answers, "Yes." but continues to stand there until Beth clarifies, "Adam, I want you to give me a hug."

The second trailer shows Adam and Beth leaving the Cherry Lane Theater in New York's Greenwich Village with Beth parents. When Beth's father remarks that he hadn't known the theater was there, Adam proceeds to give a detailed, rambling history of the theater. He spouts off shows from its earliest days right through the middle of the twentieth century. At that point Beth finally nudges him and he realizes that his running commentary might have been one of his social blunders. Beth's father says, "Gee, Adam, what about the '70s?" Adam is happy to pick up where he left off until Beth quickly chimes in with, "Adam, my father was joking."

I liked both clips, and I plan to see the movie, so more about that later. But the thought that people will see this and maybe understand a little more about Asperger's, NLD and other social communications disorders leaves me amazed and hopeful for my son.

Thursday, September 17, 2009

A Short Note on Teeth

It seems these days that nearly all children wear braces at some point in their young lives. My daughter has them now. My son went from 6th grade retainers, to 7th grade braces, to 8th grade head-gear, before everything came off in 10th grade to display beautiful pearly whites.

The problem for my son is that his pearly whites aren't always so pearly. The medication that he is on to control his movement disorder causes dry mouth. As a result, food often sticks to his teeth, especially in the front. He is who he is: he is usually not aware that there might be food on his teeth. So we tell him.

If any neuro-typical person had that stray piece of spinach caught on their teeth, they'd probably be embarrassed, but probably would want someone to tell them. I don't think my son gets uncomfortable when we tell him to wipe off his teeth; he recognizes, because we've told him many times, that it's not a pleasant sight. Hearing this message so frequently, he's usually pretty careful about this now -- but not always.

The short note on teeth: Brush often, brush thoroughly, if you can't brush, wipe.

Wednesday, September 16, 2009

You're Kidding, Right?

Looking back at some of these posts, I wonder how many people might read them and laugh at the insignificance of some "lessons." Good point about holding up your end of the conversation, Pat, but really -- squeezing out the sponge??

YES! As the boy becomes the man, there's no doubt in my mind that my son will be successful and happy. but why not try and make it easier for him? If, tomorrow, he spills a bottle of water on the floor of his dorm room, life with his roommate becomes a little (or a lot) more difficult if the puddle doesn't get properly cleaned up.

If he moves to an off-campus apartment at some point, how quickly do the people sharing the bathroom get tired of having to remove a soaking wet washcloth from the sink before they can brush their teeth?

For neuro-typical people, these actions are next-to meaningless. But I think the mastery of these two relatively inconsequential deeds takes on substantially greater significance for anyone living with a social communications disorder. Upon mopping up a spill but leaving half the mess, they are less likely to recognize that the mess is still there, much less the disapproving look. So why not ensure that my son is cognizant of how to deal with these little jobs? Then he won't have to worry about interpreting the body language.

Tuesday, September 15, 2009

Clean Up, Clean Up, Everybody Do Your Share

We’ve all had spills. This is a common accident that can occur multiple times in a given day. Grab the paper towels, the dish rag, the sponge, or anything else nearby to soak up the spill and clean up the mess. When the accident is caused by a child, parents usually take charge of the clean-up, at least until the child is old enough to manage this task on her own. What age would that be – 8? Maybe not until 12 or 13? I would guess that most children have this everyday skill for life down pat by high school. Sexist though it might be, I’d also guess that most girls are capable of a fairly thorough clean-up before most boys achieve this competence.

Has anyone ever told you how to mop up a spill? Not likely. You just spilled a full cup of coffee all over your desk? Get a sponge, wipe up coffee, squeeze out sponge, repeat. And repeat. And repeat again until all the coffee is magically removed.

What happens if you skip one of those steps?

I cleaned up those little and large spills for my son, probably for more years than was necessary. I rationalized (as many parents do) that it was easier to do it myself. But I didn’t know what was coming. On the occasion of one of those spills when my son was perhaps 15, I said, “No big deal, – just grab the sponge and wipe it up.” Fortunately, it was on the kitchen counter, so the sink was right there.

But as I watched him gamely attempt the cleanup, I realized that the spill wasn’t getting any smaller. Because I hadn’t told him exactly how to accomplish this task, he didn’t know that as the sponge became saturated he had to squeeze it out in the sink. Once I provided him with the needed verbal cue, he was easily able to finish the chore.

My son graduated from high school as a member of the National Honor Society and was admitted to several very competitive colleges. The things he needs to learn are not things that would ever prevent him from succeeding, but it would definitely make his life easier.

Monday, September 14, 2009

Ablutions (Don't You Love That Word?)

For the second weekend that he was home, I've been reminded that things that are intutitive to many people are not at all intuitive for my son.

Since he usually showers at night, he's always been very good about washing his face when he gets up in the morning. While he was living at home, we didn't talk about the right or wrong way to wash one's face. He's always used a washcloth in the shower and at the bathroom sink. Personally, I don't like to wash my face with a washcloth, preferring to use soap on my hands. But again, who's to say if one way is better, more effective, or "right, " compared to the other?

Well actually...It turns out maybe there is a wrong way. For many years, I would go into the bathroom after my son came out and find his washcloth in the bottom of the sink, dripping wet. And many times upon finding that, I would squeeze it out and place it over a rack, and remind him he had to do that in the future. "Leaving all that water in it creates an inviting environment for mold and bacteria." "Reusing the same sopping wet washcloth for even two days would be gross." Etc. This is one lesson he rally did not absorb very well, no matter how many times I repeated it. Could it have been the delivery?

Anyway, when he was getting ready for school this summer, I suggested that he not use a washcloth at all. Without really knowing what the big deal was, and because he didn't care one way or the other, he agreed. I've asked him if not using a washcloth at school was working out okay, and he says it's fine.

Given that I've reverted to squeezing out dripping washcloths and hanging them over a rack in the bathroom for the past two weekends, I'm glad he's managing without one at school. Why is it there are some things that seem so fundamental, yet he is reluctant to do them? I know he is capable. Is it because I did not press him each time to return to the bathroom and do it himself?

Friday, September 11, 2009

He Needs It, He Needs It Not

Tomorrow our family is getting together with a group of friends with whom we traveled to China ten years ago. Twenty-two families came home with Chinese infants and toddlers. My son was eight at the time, but he was an awesome traveler, very sophisticated and very appreciative of all the new experiences (the greatest of which was the welcoming of his sister).

He established personal ties with several people on that trip and has attended every reunion with us. Because he was home last weekend, he considered staying at school this weekend; but, in the end, he's planning on attending.

When he arrived home last Saturday morning, he had remembered his dirty clothes, but forgotten his towels; remembered his books, but forgot his dental retainers; remembered his phone and iPod, but forgot his "brain medicine," Tegretol (fortunately we had a refill). He also brought his toiletries -- toothbrush, toothpaste, deodorant, etc. -- all of which we also keep for him at home.

This weekend, we are being very specific as to what he should bring home and what he doesn't need. Is this guidance a verbal reminder to an adolescent in need of that kind of reinforcement, or is it the nagging of an anxious parent?

I also think we will start keeping a few days' supply of his medication at home.

Thursday, September 10, 2009

Good News/Bad News

I can praise my son for his courage and perseverance, but I'd better put my money where my mouth is. After much back-and forth about his Internet access, he has made it clear that he will deal with it himself and in his own time. Apparently I over-estimated the impact of access to email relative to the real demands of college.

But I still see a need...I just got a call to go online for him and freeze his student ID account, because he's misplaced the card. At his school, resident student ID cards carry a cash balance because the cafeteria doesn't serve lunch. Students can use their ID as a debit card at several on- and off- campus eateries and the bookstore. I did go to his account and report the card as lost, but I'm fairly sure it will turn up. Another day's entry will include directions on how to keep your room clean.NO doubt he'll keep better track of the replacement by practicing those organizational skills he's been working on for the past ten years or more.

Wednesday, September 9, 2009

Getting Harder (for Him or Me?)

I think as the novelty of being away from home wears off, my son is getting increasingly anxious. His anxiety, I believe, stems less from the amount of work that will be required and more from the little things he finds himself struggling to deal with.

Some might think I am exaggerating the significance of his inability to access the Web. But my son has a broad network of friends/virtual friends through the social networking site, Facebook. Apart from the impact it might have on his studies, the ongoing lack of Internet access is cutting him off from his old contacts. I asked him last night if he thought it might help if I called IT and he said it might. So I called and left a message on his behalf; I wanted to intercede, but wanted him to continue to control the reins. The Help Desk did call him back this morning. It sounds like the problem has been partially, but not yet fully, resolved.

My own anxiety rises proportionately (or maybe disproportionately!) when I hear my son sounding despondent. Given the circumstances, I have to keep reminding myself that right now he is feeling the same emotions as hundreds of thousands of other college freshmen. I know his currently low spirits are probably intensified by frustration that arises from communication problems. I also know he'll get through this period as he has so successfully weathered challenges of equal magnitude in the past.

Tuesday, September 8, 2009

Home for the Weekend - Lessons from Week One

My son came home this past Saturday because it was a long holiday weekend. His comment as he walked in the front door and down the hall to his room did not fall on deaf ears: "It's weird." It was more than a little weird for us as well.

For the most part, I'd say his transition is going well. The fact that he's been playing Ultimate Frisbee, clearly a team sport, addresses one of my biggest concerns. But needless to say, the first week was not without challenges.

There are a handful of things that he'll need to see to, and we're encouraging him do as much as he can on his own. He has not been able to track down anyone from IT services to help him out with his Internet connection. When I brought him back to campus yesterday, I had an Ethernet cable that I thought would solve the problem, but it didn't. Since he needs Internet access for class, I tried to impress on my son that he has to keep contacting IT services until it gets fixed. We bought his laptop through the school because it included a service contract with the Help Desk. My son has a really hard time being forceful in situations like this, so I will make a call myself if he hasn't resolved the issue in the next day or so.

He realized that he had neglected to enroll in one of the required courses for his intended major. The plus side of this is that he is comfortable using the school's online course registration systems (though not from his room -- see paragraph above), and was able to add the course to his schedule. What he didn't realize was the impact of adding a course to an already full schedule, bringing his total credit hours to 18.5. I think we've impressed on him the importance of dropping an elective and how to decide which one to drop. I'll check on that later this week.

Like most schools, my son's college assigns a faculty advisor to help with scheduling conflicts and academic concerns. When I recommended that he make an appointment with his advisor to discuss his schedule, he told me he had no idea who it was or how to find out who it was. I suggested he might ask his R.A. how to find out, or he could send an email to the secretary for the department of his major.

Finally, he mentioned that there were three plays that he needed to pick up for one of his classes that weren't available in the bookstore. We called a few places (including the local libraries) with no luck. It was Sunday night when he added that he had to have one of the plays read by Wednesday. After checking online, it looked like the book was on the shelf at the school's library, except...he had not yet found the library.

So I dropped him off yesterday, with three or four things that he had to do: get help from Tech services, find out who his faculty advisor is, drop one class from his schedule, find the library. How many of these little issues are common to most young adults navigating the world (more or less) on their own for the first time; and how many are unique to my son and attributable in whole or in part to his social communications learning disability? It might not matter.

Friday, September 4, 2009

More From Rehab - Crossing the Street

As physical, occupational and speech therapists worked to get our son back to pre-illness form, they took the time to get to know and understand him. We gave them a pretty detailed developmental history to help them establish a baseline skill level. Our expectations were for our son to return home as strong and fit as he was before he got sick. Those expectations proved to be unrealistically low!

Under the care and coaching of his therapists, he strengthened his core muscles and limbs and improved his posture. His endurance was dramatically better as well. But the biggest change was in his attitude. They fostered a confidence in him that had been lacking prior to his illness. As part of his rehab, they took him for walks and helped increase his awareness of people and, more importantly, traffic around him. In the past, he had always put his trust in whoever he was with when it came to crossing the street. The occupational therapist pointed out that he had to look all ways, and sometimes over his shoulder to see if cars might be turning; she reminded him at each corner of things to watch for. Although we had tried to explain that to him as well, it was clearly more effective coming from someone outside his immediate family.

When he was released from the rehabilitation hospital, he had a few more months of therapy on an outpatient basis. Since my husband was coaching at the time and not always available to get our son to and from his appointments, we put our faith in him (and his therapists) and gave him directions for taking public transportation or getting there (about a mile and a half) on foot.

Because of his issues with communication with peers, he did not have many close friends. While he was a typical teenager in may ways, he had never just "hung out, " gone to a movie, or grabbed a bite to eat with friends. It was off his radar. So walking through the streets without an adult was a giant leap in his development and he rose to the occasion. We gave him a cell phone in case he needed to get in touch and let him go. Getting to and from those appointments became as big a part of his therapy as the sessions themselves. Ever since that time, he has set aside time on weekends and days off to "go walkabout, " with destinations that include the local Starbucks, the bookstore, sometimes even the library! For the first year or so, I would watch from the window for his return. Now I pretend not to.

Thursday, September 3, 2009

DIY - Lesson One

Self-sufficiency is an issue that is common to all adolescents, not just those with a learning disability.

As parents, we try to foster independence in our children from an early age -- expanding the boundaries and raising the bar of expectations as they mature and there is evidence that they are ready for the next level. One of my son's first forays in this direction involved two pairs of sneakers that we had bought for him when he was about three years old. The sneakers were the same style, in different colors. One morning I asked him which shoes he wanted to wear, and he replied without hesitation, "One of each!" Fine by me -- he had made his own choice!

Sometimes lessons on independence come from unforeseen (not to mention occasionally unwanted) circumstances. One evening in early December when he was in eighth grade, my son suddenly became very dizzy and nauseous. After spending the night in the Emergency Room, he was admitted and later diagnosed with meningo-encephalitis -- both meningitis and encephalitis. (I need to add from which he fully recovered.) He spent nearly three weeks in acute care before being transferred to a rehab hospital for four more weeks. The therapists that he worked with there were exceptional, and they really understood my son. Much of what they worked on -- physical therapy, agility -- was related to his recent illness. But the therapists recognized that there was a need to bolster some more fundamental skills, beyond any damage to his speech and coordination that resulted from the virus.

One thing they worked on during that time was taking a shower. Again, this is not something most parents would think of teaching their children. But to a child with a learning disability that affects organizational skills, the "how" part of taking a shower is far less obvious. My son's occupational therapist created a list of steps, laminated the list in plastic so it could hang in the shower, and verbally went over the steps with him at each shower: from turning on the water and adjusting the temperature before stepping in, to a logical order for washing. The therapist suggested top-down, basically starting with shampooing the hair, and this worked well for our son. We brought the card home and put it in the bathroom, where it stayed for several more weeks until he was confidently following the same routine each day. The sequence of steps was not the critical factor in helping our son master this skill of daily living. What mattered for him was the list, the verbal instructions and the routine order.

For neuro-typical children and adults, taking a shower is almost an instinctive skill. But for those challenged by Nonverbal Learning or a similar social communications disorder, instinct plays a very minor role in grasping either the importance or the fundamentals of some basic life skills.

Wednesday, September 2, 2009

Be Still

Just a quick aside: evidently, all is going well on campus. I just got a call from the newly-minted college freshman. He's not homesick; his first class went okay (and by the way, Mom, the book cost $130, so can you replenish my bank account please?); and he's been playing Frisbee -- I didn't even know he played Frisbee, but apparently he's pretty good! It sounds as though he has made a connection with his roommate, so I've got to believe that all the coaching he's had in and out of the classroom will pay off!

That's very good news to me, given that the "extraordinarily effective I.E.P." that I mentioned yesterday is no longer guiding his education. There's no Special Ed professional to keep him on track or facilitate peer interaction. There's no one to remind him to "quiet his body" as his speech therapists used to do.

Throughout my son's youth and adolescence, he displayed repetitive behaviors, a common trait of children with social communication or autism spectrum disorders. He would stop one, only to replace it with another; but each unconscious behavior would last several months or even years. In grammar school, there was a time when my son was constantly licking his lips, to the point where the skin was red and chapped under his bottom lip. This particular tic was one that was odd enough to call unwanted attention. So often we (family, teachers, therapists) would try and redirect his need to move or fiddle or rock, and channel it into something less obtrusive -- playing with a macrame or leather wrist band, for example.

In high school, he constantly fingered a religious medal he wears around his neck; or he would pull on his sock, rolling it up and down his ankle. The sock pulling continues today and we invested in a new leather bracelet before he left for school. As repetitive behaviors go, pulling on his sock is relatively harmless and less likely than some of his past quirks to attract unwelcome attention. Still, it would be better if he could find a more subtle means of grounding himself. He agrees, but it's easier said than done. Once ingrained, these habits are hard to break.

Tuesday, September 1, 2009

In the Beginning

When my husband and I got married, we attended a Pre-Cana conference in the tradition of the Catholic Church. I remember that the odometer of our 1978 V-6 Mustang turned 100,000 miles on the way there. I remember that the facilitators were actually pretty good and they suggested that each couple save their answers and discuss them again one year after their weddings. And I remember that one of the issues we were asked to talk about that day was how many children we wanted. My answer was one; my then-fiance's response was zero to two.

We were married for about three years before the subject came up again. At that time, we were living in New York City, but we frequently spent weekends in the Berkshires, staying in a small apartment we owned in Lenox, Massachusetts. We used to say we could feel the stress of the City melt off our shoulders with each mile we put behind us on any Friday night. It was there, sometime in the summer or early fall of 1989, that we opened the discussion of children. At the onset, my husband asked how sure I was that I wanted children and I replied, "About 90-95%. How about you?" He said, "I don't really know; maybe 80%."

We talked about it for some time, and then he said, "You know, I think I'm about 95% sure we should do this." I responded, "I'm about 85% sure." Nevertheless, the journey began and the home pregnancy test I took on the following Valentine's Day was positive. We learned a lot about high-risk pregnancies (I would turn 37 that fall), amniocentesis (my age led to a considerably higher risk of Down's Syndrome) and genetic counseling (belatedly, we learned that my husband was a carrier of the Cystic Fibrosis gene and my genetic sample was inconclusive for CF). But our son was born with minimal trouble, an easy delivery. Our chosen pediatrician, an expert in the field of cystic fibrosis, looked at him on his first exam and was 99% sure he was fine. Six weeks later her hunch was confirmed by a negative test for CF.

Life was good for four perfect months... until he had his first seizure. With a diagnosis of "seizures of unknown origin," he returned from a four-day hospital stay on Phenobarbital. Over the next sixteen months, the dosage was raised and other anti-seizure medications were added; nothing fully controlled our toddler's "wiggling" as my husband and I had come to describe it -- as opposed to the all-out, eye-rolling, losing-consciousness seizures he had as an infant. We left New York when he was about 19 months old and moved to Portland, Maine. We achieved two triumphs during our four years in Portland. First, our son's new neurologist was able to more specifically diagnose his brain wave irregularity and switched him to a new medication, Tegretol. To this day, he remains on that, at about the same dosage, with very few breakthroughs. The second success story was our decision to have our son evaluated for speech and other relatively minor developmental delays. Through this initial assessment, we found the best possible day care center for him and all the services he might need. This proved to be the foundation for the extraordinarily effective Individualized Education Plan that was implemented and executed by his phenomenal grade school and high school teachers. Of course, at 18 and in college, he's pretty much got to fly solo now.