18 is Not a Magic Number — CMB Post

This was originally posted on the now defunct Chicago Moms Blog.

My twins turned 18 last November and are seniors in high school. Since last spring break, my daughter has been researching and visiting colleges, completing applications, filing for financial aid and pacing the floors with worry and excitement over where she'll be going to school in the fall.

My son has been going to high school. He gets up every morning, does his routine and goes to class. He hears and sees his sister whirling dervishly around the house, and spouting words like "deadlines", "recommendations" and "essays". It has had no affect on him. When asked what he plans to do after graduation, his eyes kind of glaze over and he launches into a brief nondenial denial that he has pieced together from things he's overheard.

"I'm not quite sure yet, but I'll probably take a few community college classes, do some volunteer work and get some kind of part time job. I'm just not ready to think beyond that right now."

It's a reasonable statement, I suppose, except that he doesn't really understand what any of that would actually entail, and he has done nothing to find out more information.

I have been a nervous wreck about him, but getting one kid ready for college has taken a lot of energy, so mostly I've been working with the girl, fretting about the boy, and feeling guilty all around. And hyperventilating my way through sleepless nights. And yelling gently hinting things like: "You are not living in my house for the rest of your life," and "Playing video games is not a viable career choice."

Then, one day, I listened - really listened - to my son's press conference statement. Especially the last sound bite. "I'm just not ready to think beyond that right now." And I realized that 18 is not a magic number; it's just a number, just the next birthday in what we hope will be a long line of birthdays to come. And that, in and of itself, is a miracle.

Born at 24 weeks and just 1.5 pounds, we didn't really think he would see any birthdays. Both twins were significantly delayed. Just to put things in perspective, he was born November 17 and came home from the hospital on March 27; he walked at 23 months; he talked at 4.5 years old. He weighed just 27 pounds when he started kindergarten, and 47 pounds when he started middle school.

Now, he's 18. He has finally caught up physically. He is intellectually very bright, but has a short-term memory deficit, a sequencing disorder (part of his learning disabilities) and some ADD issues. He will be graduating with his sister and his peers in June. He is among the kindest people I have ever met.

This spring break, we are visiting Beacon College, the only accredited college offering BA and AA degrees for students with learning disabilities, ADHD and gifted LD. My mom heard about the school and sent him the link. I suggested that we could visit, but he went to the college resource center at school and he made the appointment for us to tour the campus. Will this be the right place for him? Who knows. Will he be ready to go in the fall, or even the spring? I doubt it.

Why I ever thought that 18 would be a magic number, that he would suddenly start to reach milestones on someone else's schedule instead of his own, is only proof that I'm the one still suffering from developmental delays. My son is right on schedule. So, what comes next? I know what we're doing for spring break. I'm just not ready to think beyond that right now.

When Susan isn't worried about developmental delays, student loans and sending her kids to college, she can be found writing at Two Kinds of People and on her freelance writing Website, www.bearman.us. This is an original Chicago Moms Blog post.

iPhones — New Help for Special Needs Kids — CMB

This post originally appeared on the now defunct Chicago Moms Blog.

Disclaimer — I do not now nor have I ever worked for Apple, and they haven't paid me in goods or dollars for this post (although I'm open to negotiation).

Last month, my twins turned 18. I'm still in deep denial over what is clearly a blip in the time-space continuum. I know for a fact that it was just a few days ago when we were huddled around their isolettes in the NICU, watching in awe as their tiny 24-week bodies struggled to survive. And now … well, I just can't go there yet.

We have been so blessed, so lucky. Their delays, while significant, were just that — delays. They are both fully-functioning, healthy, happy (adult?) human beings, enjoying their senior year in high school and starting to think about the future. My daughter has taken the wheel on her road to life and is well on her way to independence. Her brother, who has had more physical and learning issues, still has a way to go.

For their 18th birthday, we got them each iPhones. During such difficult economic times, it's reasonable to ask why would we spring for such a hot, trendy, extravagant gift as an iPhone. That, I can tell you in two words — assistive technology.

The lingering issues that continue to affect my son as a result of his extreme prematurity are:

• low tone/graphomotor issues — he explains it like this: "It's really hard for me to think and write at the same time."
• short-term memory deficit — he would explain it to you, if only he could remember. Seriously, one of his teachers once told me: "He seemed to understand. He repeated it back to me exactly." He does understand — he understands everything, he just can't remember once the cue is gone.
• sequencing disorder — trouble breaking down tasks into reasonable chunks and completing them in the right order in a reasonable amount of time.

I have long believed that my son was lucky to be born when he was — that technology would be his friend. I still believe that, but there have been some bumps along the way: an addiction to video games and losing three (count them, three) cell phones his freshman year. During the few days he managed to hold on to his cell phone, he never remembered to turn it on, so I couldn't reach him any way.

Then, last year, he used his birthday money to buy himself an iPod Nano. Miracle of miracles, he did not lose it. He kept it turned off during school, but remembered to turn it on after school so he could listen on his way home. About a month ago, we had a meeting with his assistive technology specialist at school. A long-time PC person, she recently got an iPhone and is tremendously excited about the potential it holds for many of her students.

Assistive technology runs the gamut from wheelchairs to customized computers that allow quadriplegics to communicate with eye blinks. The field is exploding, but much of it is hugely expensive. While the initial outlay for the iPhone (about $200 for the middle-range iPhone) isn't too bad, the $30 monthly bite per phone for the data package adds up fast. We learned, however, that unlike computer programs, iPhone apps are pretty inexpensive (often free), and there are new ones every day. While there are many PDAs out there, the iPhone offered some distinct advantages, first and foremost the fact that it would be my son's new iPod, so we were pretty sure he would hold on to it.

It's fairly obvious how the calendar and organizational apps could help someone with short-term memory problems, but the iPhone apps offer much more than simple datebook functionality. For example, there's an app called VoCal that allows my son to record a voice message on his phone, which then translates into a written calendar reminder.

And it works! Our first iPhone success came after a missed orthodontist appointment one Friday. That night, he added the orthodontist's phone number to his contacts and entered a voice reminder into his phone. That entry sent him an alert after school on Monday to call the orthodontist for a new appointment. My son gets out of school at 3:35. By the time I called him at 3:45, he had already made the new appointment and entered it onto the calendar, which automatically sent an email to me so I could put it on the family calendar. That may sound like a small thing, but it was one giant leap toward independence for him and peace of mind for me.

That ability to recognize voice commands is a huge advantage for a kid with graphomotor issues. The sensitive microphone allows him to use his voice in a variety of ways, bypassing the need to write (and even draw). For example, there is an app called Omni Note. Say his horticulture teacher draws a picture of a plant cell on the board and tells the class to copy it for a quiz on Monday. This would be extremely difficult for my son to do, and the end result would not look anything like the original.

With the Omni Note app on the iPhone, my son could take a picture of the diagram, draw directly on that picture, add a typed and/or voice message to the picture and send it immediately to his computer at home so he could study it over the weekend. How cool is that?

His teachers are also on board, allowing him to keep his iPhone out and on throughout the day. He doesn't text and we haven't given out his phone number, so there is no risk of interruption during class. As part of his sequencing disorder, he has trouble organizing his thoughts into a coherent structure in school papers. One of his English teachers had the brilliant idea of having him research new apps and, as an assignment for class, write out the directions on how to use it (a great sequencing and organizational exercise), and include a paragraph or two about how he, personally, is using the app (a good way to practice his analytical skills).

Right now, our district would have provided him with an iPod Touch, which has some, but not nearly all the functions of the iPhone. The integrated microphone of the iPhone is a big part of the functionality my son needs to make this tool work for him, so we opted to make a family investment.

I understand that this is new technology, which is often scary and expensive for schools to contemplate, but I urge educators to jump on this bandwagon early. The potential of the iPhone for special needs students is vast and untapped, and this generation of students is already immersed in technology. This seems to me to represent the best that technology has to offer — a chance for students to overcome (even bypass) their disabilities and get right to the good stuff — the learning.

How did we justify making the same investment for our daughter? We told her it was because it would be a good tool for her at college next year, and it will be, but really, this is just one of those times when she should be darn grateful for her twin brother.

This is an original Chicago Moms Blog post. When Susan isn't busy trying to figure out how such a young mom can have such old children, she can be found writing at Two Kinds of People and The Animal Store Blog.

Help, My Son is Morphing into an Avatar — CMB Post

This was originally posted on the now defunct Chicago Moms Blog.

There is something familiar about the figure slouched in the office chair, face aglow in the eerie light of the monitor. I can still see traces of that sweet little boy who used to talk my ear off, but it's hard to recognize him, since I only ever see him in profile anymore, and his earphones tether him to his computer. There is an occasional deep-voiced giggle over the latest Dane Cook video, but otherwise just the quiet, rhythmic tap dance of keyboard and mouse clicks.

I know I'm not the only mother who fears losing her teenage son to screens, but I'm kept awake at night with visions of him actually falling into his monitor and becoming an avatar. If I look closely, I swear I can see the edges of his face turning into thick dark lines, while his visage flattens into two dimensions in Web-ready colors. The sad thing is, I think this is a fate he would welcome.

My son, now 17, was born 16 weeks prematurely. While he is doing great given his desperate prognosis at birth, he struggles with ADD, a short-term memory deficit, delayed social skills and a few other learning disabilities. It's ironic to me that a child who has difficulty concentrating can become utterly engrossed in the artificial world of video games, but this is a common scenario. According to Larry Silver, MD, video games hold particular appeal to kids and teens with ADD: "A child who's bothered by distractibilty in the real world may be capable of intense focus, or hyperfocus, while playing," says Silver. "For children who struggle with social skills, or lack the skills to play team sports, these games entertain and level the playing field. Computer games are emotionally safe."

That's my son in a nutshell. So, what's a mom to do? We recognized early on that technology was this particular child's friend. With poor graphomotor skills, he needs the computer to communicate his thoughts. His handwriting is large and difficult to read and we have discovered over the years that he actually produces more writing, both in terms of quantity and quality, when he types. With poor organizational skills, the capacity to email work back and forth between home and school has greatly improved his ability to complete assignments and turn work in on time.

But it is his poor executive functioning abilities, those areas of the brain that allow you to monitor yourself in goal-directed behavior, that stymie our efforts to help him use the computer to its greatest advantage while setting reasonable limits on screen time. We've tried everything:

We moved his computer into a public space in our house. It used to be in his bedroom and we never saw him. He'd hole up there, with the door closed and lights out, clicking away all hours of the day and night. Moving his computer into the dining room has allowed us to monitor the time he spends online, see exactly what he is doing and get his attention when we need him to do something else.

We have tried timers over the years for a variety of purposes, with little or no success. The best timers are programmable ones, where we set his computer with a password that only allows him access for certain times during the day. This works fairly well, since there is no arguing about "five more minutes" or "wait until I get to the next level," but with a high schooler who has legitimate school-related computer needs, the passwords can get in the way in a busy household. We are working on a system that will allow him access to some Websites all the time, while limiting access to other sites except during proscribed hours.

• We have tried to use screens as a carrot, rather than always chasing them with a stick. This, too, has had limited success with a child who has no sense of time and no goal-setting abilities. The first consequence is always loss of screen time; the first reward is always extra screen time. This is the only reward or punishment that has any meaning for him.
• Screen time is measured in aggregate: computer plus video games plus television equals your total allotment of screen time. It used to be that we would shut him down on one screen and he would simply move on to another.
• No handhelds allowed. It has been nearly impossible to monitor and limit this child's screen time when he is plugged in to a wall socket. I cannot even imagine how difficult it would be to get his attention if he was allowed to carry a mini-screen around with him all the time.
• We have provided plenty of opportunities for him to interact with other human beings, including an agonizing year of Cub Scouts, several successful years of sleep-away summer camp, day camps, swimming lessons, music lessons and lots of family activities. It is almost always a struggle to get him to participate, but he almost always has a good time when he does. We've learned not to ask him if he wants to do something — we just tell him what he is going to do.

After all the stress, tears, punishments and rewards, my question is this: should we be limiting his screen time at all? What is the benefit of setting screen limits at this stage in his life? As long as he gets his homework done and helps out when asked, is it important to continue to restrict the time he spends at the computer? True, if left to his own devices he would probably always choose "virtual" over "reality", but when we insist, he does participate in other activities.

Chances are that any work he pursues in life will involve computers. While it's true that he does play a lot of video games, he also uses his computer for a wide variety of purposes. For example, he recently joined a graphic arts chat forum. This is the kind of social networking he never would have done in the "real" world, even though there is probably a graphic arts club at his high school. To join would require finding out where and when the meetings were held, signing up, remembering to go, and putting himself into a difficult social situation. It just wouldn't happen.

He also subscribes to several news feeds and, consequently, is pretty up on current events. He reads (and I believe sometimes even writes) fan fiction. Why is it any more valid for him to read newspapers or books than online news sources and fiction Websites?

Here are my moral dilemmas: Why should I limit his computer time to, say, an hour a day when I certainly spend more time than that on my computer? If I am constantly forcing him to do something else — anything else — besides computers, will he ever really enjoy those things? Can you, or should you, force someone into social situations that do not appeal to him?

Why should I limit his computer time when I don't limit his twin sister? This is a particularly difficult question for me, as she, too, spends a lot of time online, multitasking away at a lighting pace — IM-ing with six or eight of her closest friends, downloading music, researching her history paper, creating graphic collages and shopping for new boots — all at the same time. But, and this is a big but, she has a big life away from her computer, and he does not. There is also the fact that she spends little or no time playing video games, and that somehow seems to make her time online better or more productive. When I look at that in the clear light of day, I can see the double standard.

Finally, this teenage boy has two younger brothers who have just as much interest in gaming as he does. I have to be careful with any precedent I set, for I will have to live with the consequences of that decision for many years to come.

This is an original Chicago Moms Blog post. When Susan isn't busy being a computer cop, she also writes about Two Kinds of People, as well as about pets on The Animal Store Blog.

Photo credit: "Slaves" by Cleopapu via flickr.com.