Friday, August 31, 2001

Book 'em

I'm generally a sucker for parenting books. But the ones I'm drawn to are the ones for parenting kids with special needs, books with names like "The Challenging Child" or "The Explosive Child" or "The Out-of-Sync Child" or "Raising Your Spirited Child." With one child who is significantly learning and language delayed but very well-behaved, and one child who has FAS/E, I don't have much of a need for the general, run-of-the-mill books on raising your boring, normal child. I need the heavy artillery.

Every so often, though, I like to see how the other half lives, and so I check out the bestsellers of the week in Parenting & Family on . I was going to share the results of that search today, but frankly, the first four books on this week's tally were pregnancy books, and a majority of the rest are about obsessing over your perfect infant, and who needs that? So I decided to go back over to my half, and see what parents who read books about special needs are reading. A nice, familiar chart, that.

Here, then, for your browsing pleasure, are the Top 10 special-needs-parenting bestsellers on this week, with our comments and/or theirs. Note that, if pregnancy and infancy are the current obsessions among the non-special-needs set, ADHD remains the book-topic of choice for challenged parents, occupying half the spots. Read on:

1. The Out-Of-Sync Child : Recognizing and Coping With Sensory Integration Dysfunction by Carol Stock Kranowitz.
The perfect, reader-friendly introduction to sensory integration. I'd tell you to go buy it now, but you probably have it already.

2. Sign With Your Baby Complete Learning Kit (Book, Training Video & Quick Reference Guide combination) by Joseph Garcia.
"Shows how simple gestures can communicate ideas."

3. Maybe You Know My Teen : A Parent's Guide to Helping Your Adolescent With Attention Deficit Hyperactivity Disorder by Mary Fowler.
By the author of "Maybe You Know My Kid."

4. The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children by Ross W. Greene, Ph.D.
Excellent, excellent book! It's one of the ones I keep close at hand. Useful for any kids who have trouble dealing with frustration and change, whether they explode as a result or not.

5. When Love is Not Enough : A Guide to Parenting Children with RAD - Reactive Attachment Disorder by Nancy L. Thomas.
Required reading on RAD.

6. Attention Deficit Disorder : A Different Perception by Thom Hartmann.
"ADDers aren't abnormal, they are uniquely gifted individuals in their own right."

7. Taking Charge of ADHD, Revised Edition by Russell A. Barkley.
I'd probably rather read this than "Taking Charge of Your Fertility," No. 2 on the general parenting best-seller chart. Perhaps ADHD will take orders better.

8. Without Ritalin by Samuel A. Berne.
"Safe and effective holistic treatments proven successful for more than 3,000 patients." (Is that a lot?)

9. Eating an Artichoke : A Mother's Perspective on Asperger Syndrome by Echo R. Fling.
"Author is president of ASPEN of America, Inc. (Asperger Syndrome Education Network.)"

10. Women With Attention Deficit Disorder : Embracing Disorganization at Home and in the Workplace by Sari Solden.
I don't know that I have ADD, but I'll embrace disorganization wherever I can find it.

Thursday, August 30, 2001

Counting down

Six days and counting to the start of school. Can I get a "Whoo-hoo!"

My kids are not as excited about this as I am, which is a good sign, really: There was a time when my daughter would much rather be in school, which was so much like the orphanage she'd spent her first 4.5 years in and therefore so familiar, than have to be home with this unfamiliar thing called a family. I'm delighted that she now sees home as the place to be, and school as the scary, less-than-comfy spot. Delighted. But she still has to go.

She shared her back-to-school worries with me last night, and they are three: 1) she will have to write reports; 2) we will have to pick her up after chorus; and 3) when she gets to middle school, she will have to change her clothes in front of other people at gym, and in only five minutes.

If she were an 11-year-old among 11-year-olds, she would have reason to worry about the horrors of being naked among your middle-school peers; however, she's an 11-year-old among 9-year-olds and, as a fourth-grader, has two elementary years to go before she has to obsess about that. I told her to hold her worrying for a while. Worrying ineffectually about a future that can't be controlled is, of course, a mother's job.

I don't know if she believed me when I said that the chorus director would let us know what time to pick her up and that we would really, truly be there -- just like we're there at the end of school and just like we were there last year when she got out of her after-school remedial sessions -- but she at least appeared to be reassured. Now, if she'd worried about singing off-key or learning the music or performing in front of an audience or getting from her classroom to the rehearsal room, I'd have had a little more trouble jumping quickly to assurance. But pick-ups are a piece of cake.

Worry #1 is not. Reports are a way legitimate concern. I'm worried that she will have to write reports, too, because it means I will have to help her write reports and, hoo-boy, that is not a pleasant thought at all. Helping her write simple paragraphs has added gray hairs to my head and holes to my stomach. She is no more ready to write reports than she is ready to pole vault in the Olympics. But at least with the pole vault, she could probably get off the ground a little faster.

Still, I put a good face on it and explained that she will have a language-arts aide this year, helping her a few hours a day, and that person will certainly have as part of her job helping with reports. (She will, won't she? Won't she?) And the teacher will help. And if necessary, we'll hire a tutor to help. I'll help. Papa will help. Everybody will help! Now, if only my daughter would help, by not being completely and utterly clueless. I know, I know, that observation is not helpful. I couldn't help it.

My son has shared only one school-starting anxiety, and that is: "I hope the teacher doesn't give homework on the first day." He says this exactly the way Buster Baxter says it on his first day of third grade on the "Arthur" cartoons on PBS. So I don't think he's really worrying; I think he's just rehearsing his lines. Besides, the only homework that's likely to come home that first day is homework for me, all those forms and cards to fill out with the exact same addressses and phone numbers and emergency contacts I gave them last year. Couldn't they have this stuff computerized by now?

Six days. Six days and counting. Let the games begin.

Tuesday, August 28, 2001

Back to school with a vengeance

If a new report from the CDC is to be believed, some kids are slipping more into their back-to-school backpacks than notebooks, pens, folders and lunchboxes. Some are slipping guns, knives and weapons of small-scale destruction. The return from summer break is one of the heaviest times of year for both school-related stress and school-related killings. Maybe instead of shopping for cute school clothes for our returning kiddos, we should be shopping for cute bulletproof vests.

Although the report specifies that school violence is extremely rare, it's not so rare that it can't be quantified. On average, there's about one school-related killing in the U.S. for every seven school days, one suicide for every 31 school days. But that's just the average.

Looked at month by month, you can start to see where the trouble spots are. In February, the rate rises to one killing every four days -- is Valentine's Day really that traumatic? September comes in second, with one every six days. Holiday spirit kicks in to keep December relatively trouble-free, with one killing every 15 days. But watch out when those kids come back from winter break.

The CDC is helpfully releasing this information just in time for the start of school, to give parents something else to be paranoid about ... er, that is, to help parents be vigilant to the stresses of school life and to help schools use their anti-violence resources most effectively.

And that's all well and good. But what I'd be curious to know is: How many IEP-related homicides are there? How many parents go postal when they find that the plans that were so meticulously made have not been implemented, the personnel and programs required are not in place, and the new teacher has not even read the IEP? I would guess the fall is second in plotted mayhem only to the spring, when those plans are made, when those IEP meetings where everybody looks at you like perhaps you need some intensive language and learning therapy before you can dare to parry with the professionals take place. Surely there is one parent every seven days who has at least fantasized about bringing small arms to the meeting, along with their tape recorders and advocates and reports that will never be read.

Hopefully there are no statistics, because those thoughts stay just thoughts. But just to be safe, Child Study Teams ought to be vigilant and implement some anti-stress programs for special-needs parents. This would involve just going ahead and giving us everything we want; or, if that's impossible, at least everything you've promised. Come on--try it. It wouldn't kill you.

Wednesday, August 22, 2001

My concert report

Two tickets for lawn seats for Aaron Carter concert: $48.30

Bucket of KFC to eat in the parking lot: $9.99

Bottle of water at the concession stand: $3.50

Aaron Carter T-shirt: $30

Having your normally hug-averse 11-year-old so shook up by the extremely loud music and the crush of people and the endless succession of no-name opening acts that she actually insists on sitting on your lap and putting your arms around her: Priceless

Tuesday, August 21, 2001

Wrongful birth

"Hey, isn't that that boy who played softball with your daughter?"

When my friend pointed out the pictures on the front page of the paper, I was delighted to see this smiling child, who did indeed play on the special-needs softball team my girl was on one year. In fact, he had his Challenger League cap on in that Page One picture. Photos of him filled three pages of the paper, a smiling, happy kid doing the things kids do. The fact that he was doing them in a wheelchair didn't dim his smile one bit.

We've seen this boy and his parents on numerous occasions since that softball season. They go to our church, and they're there at Mass every Saturday night, their son wheeling his way to the back of the church to go to the children's liturgy. I remember seeing them at the church carnival, the parents picking their son up and putting him on the rides, and being impressed by the effort they made to keep him involved in everything. The boy has, at various times, had the same occupational therapist and the same therapeutic riding instructor as my son, and by all accounts he is a terrific kid with a devoted family. So when I saw the pictures spread out through the paper, I assumed this would be an inspirational piece on overcoming disabilities and familial dedication.

It wasn't.

It was a story about a wrongful birth suit.

The text that ran around the photos of that cheerful child had to do with the fact that his mother had brought suit against the OB/GYN who had failed to diagnose his spina bifida in the womb, so that she could have terminated the pregnancy. It discusses her hatred for this man who did her the unspeakable injury of allowing her son to be born, and her willingness to go to court and swear she would have had an abortion. It mentions that the case settled out of court, and that the parents don't plan to tell their son where the money came from; which makes it a bad idea, I'd think, to submit to a page-one newspaper story about it.

I've read stories of wrongful birth suits before, and always found them chilling for the notion that kids with disabilities would be better off dead. I understand that the costs associated with caring for a disabled child can be astronomical, and that parents would want to ensure their financial future; and I understand that the work involved with caring for a disabled child can be heartbreaking, and that parents would want to make somebody pay for that, too. But to go to court and swear under oath that you would not have allowed this child to be born--I don't know how you could do that and then go home and give that child the sort of all-consuming, all-defending, Mama Bear love you need to feel to be a good advocate and a good parent. If you felt so strongly that you had been wronged by the fact of this child's birth, I don't know how you could stop crying long enough to do all the very difficult things that needed to be done.

I've read the stories before, but to read it again, in the context of these people whom I had considered to be such a poster family for special needs, made me heartsick. Now, I certainly don't wish to imply that this family has a responsibility to be an inspiration to me. I don't really know anything about them or what they've been through. My children have significant challenges, but they are not physical, and so I don't at all know what that is like. I try not to judge the decisions that any parent makes, especially parents of children with special needs, who have so very many factors weighing on every difficult choice.

I try not to judge, but it's hard. Isn't it bad enough for society to devalue the disabled, without the people who love them doing the same? As science improves its ability to diagnose disabilities in the womb, do we really want to weed out any children with any chance of coming out imperfect? Is the image of special-needs families as poor souls saddled with a burden because a doctor didn't give them a chance to get out while they could an image we want to embrace? Isn't every child precious, no matter how his or her gifts are wrapped?

Those are eminently unfair questions, but they're the ones that sprung to my heart as I read the story of this family. When I was finished, I went to my own children, hugged them and told them I loved them just the way they are. I'm lucky--I adopted these kids knowing of their special needs. I had a choice. I'm glad their birthmothers didn't.

Friday, August 17, 2001

Specialist roulette

One of the side effects of reading too much about your children's neurological problems is that you start diagnosing everyone else's children as well.

It's hard to resist, filled as you are with knowledge and perception. I remember working at the school library a couple of years ago and picking out the kids with sensory integration disorder. They were usually the ones who were in trouble for not keeping their seats, or for jostling other kids. One little girl kept slipping out of her shoes, and that seemed to me such incontravertable evidence of tactile hypersensitivity that I bristled when the librarian yelled at her, which she did a lot. Nothing I could do about any of this, of course. As a library parent, I was supposed to notice nothing. But boy, I felt smart.

Of course, what I see in other kids are the things I know best. Other parents see other things entirely. I've notice this numerous times on e-mail lists for adoptive parents, when somebody will describe their child's behavior problems, and everybody will chip in with a theory. Invariably, the parents of RAD children will see RAD, the parents of kids with ADHD will see ADHD, and all the while I'll be clucking that it is so obviously FAS/E or SI. We see what we're trained to see.

Which is why I suppose I have to give doctors a pass when they do the same thing. I was a little irate recently when somebody shared the story of taking her child to a doctor who had diagnosed thousands of cases of a certain disorder and, what a surprise!, he diagnosed her child with it, too. And I thought, what I want to know is, not how many cases he's diagnosed, but how many patients he has not diagnosed that in. It seems the problem with specialists is by the time you get to them, you're pretty much guaranteed that they're going to find the thing they find. RAD specialists will find RAD. International adoption specialists will find problems related to international adoption. ADHD experts will see ADHD.

Part of that is probably statistical; you don’t go to those specialists unless there’s already a good suspicion that something in their area of expertise is wrong. And part of that is probably due to the extreme nebulousness of some of these disorders, in which so many symptoms and behaviors overlap. There will always be interpretation involved. And to interpret things in a way you understand is only human nature.

But none of that is much comfort to people seeking definitive answers, or to the people second-guessing them. Perhaps we should consider specialist doctors, and specialist parents, as a sort of diagnostic salad bar. Check each one out, try out a little of each, and put something together that looks right to you.

Then write me, and tell me what you figured out. And I’ll explain why it’s really sensory integration disorder or fetal alcohol effects. I see it all the time.

Tuesday, August 07, 2001

Get back!

There's a commercial for a restaurant chain that's been running constantly on the radio station I listen to lately, and it involves children squabbling to see who gets to sit in the front seat. And I have to tell those advertisers, this never makes me want to run to that restaurant. What it makes me do is think: Are they nuts? Who lets children sit in the front seat anymore?

Apparently, a lot of people. I was shocked to read of a recent study that found a third of kids in cars riding shotgun. I thought the advent of airbags had put an end to that sort of thing. I thought everybody stowed their rugrats in the backseat, further away from a front-end collision. I thought wrong.

Now, of course, I certainly did sit in the front seat when I was a kid. This was way, way, waaaaaaaaaay before airbags, and before cars that were built like soup cans. And even much more recently, when we first adopted our kids, I remember having my littlest one's carseat in front, because how would I get to him if he started crying and he was behind me? I'm not sure when we made the switch, but I certainly do remember him being behind me, and how I would hand french fries over my shoulder one by one to give him a snack on the way home from his Early Intervention sessions. Seemed like a pretty good way to have an accident right there, but at least my guy would be properly seated for it.

I guess I'm just a conformist, doing what the Powers that Be tell me, ignoring my children's pleas for front-seatage. I thought those labels on the visors of front seats, with the warnings to seat kids in back and the drawing of a car-seated baby being knocked about by an airbag, were convincing enough for anyone. I didn't believe my daughter when she swore that every other kid her age gets to sit in the front, and only mean moms make them ride with their little brothers. Who knew?

I'll keep my kids in the back anyway, of course, because then, if I roll down the windows and turn the stereo up real loud, I can't hear them fight. But when I really think about it, it does strike me that since my daughter, at age 11, is now a good three inches taller than me, she can probably sit in front of an airbag more safely than I can. Perhaps she should be sitting in front, and I should be sitting in back. She'd love that, alright.

But no matter how many studies she shows me, I'm not letting her drive.

Friday, August 03, 2001

Look back and say ouch

My kids have been in their respective camp situations for four weeks now, and the minor injuries are starting to show. My daughter has various new scratches and scrapes appearing on her legs on a daily basis, and dodgeball-related bruises as well. My son took a Frisbee to the face, giving him a nice big scab beside his right eye, and has at least one bruise on his leg from where boys allegedly pinched him. Childhood is a full-contact sport, and injury is inevitable.

Still, I suppose we're ahead of past summers in the injury-and-trauma department. There was the year my daughter dropped a bowling ball on her toe during a camp outing. The camp nurse swore there was no relation between the fact that my daughter's toe was bruised and swollen and the fact that she had dropped a bowling ball on it; mere coincidence, declared the nurse. Our pediatrician, on the other hand, looked at the toe and said it looked like someone had dropped a bowling ball on it.

Then there was the summer my son started with a seizure, after one overheated morning watching his sister cavort at soccer camp. That necessitated an emergency trip to the hospital, another visit for an EEG, much panic and anguish for Mom and Dad, and a delayed start to his own camp that year. When all was said and done, he was perfectly fine. Two years later, I'm still a little shaky.

My daughter's sprouting a fair amount of pimples on her sunburned little face this year, but nothing like the bizarre growth she had on her thumb one summer. It was big and puffy and green and filled with something that, if we were in a science fiction movie, would burst open and pour forth with little alien spawn. I think even the pediatrician was a little taken aback by it. Blecccch.

Thankfully, we've never had any broken bones. We have had head lice, a near drowning, various stitches, a small boy being kicked in the face by his swinging sister, and a scabbed knee picked at so relentlessly that there is now a scar to remember the injury by. We've been lucky, all in all.

Let's hope the luck holds for four more weeks until they're safely back in school.

Thursday, August 02, 2001

Internet ready

What did we do before the Internet?

I don't mean for getting information, although certainly, it's unimaginable to me what I would have done to help my adopted special-needs children without this limitless resource on my desk. Everything I've learned about them and found to do for them has come in one way or another from an e-mail group or a Web site. I don't believe I'd have made it with just trips to the library or a single support group.

What I'm thinking of this morning, though, as I check my e-mail for the fourteenth time this hour and look up the latest headlines on Yahoo! and read new posts on the Mighty Big TV forums and scan the site traffic statistics for Mothers with Attitude and monitor my site's status on Sites for Parents and see what's new in Salon and check my e-mail again, is: What did we do to waste time?

I'm a procrastinator from way back, and it's hard to believe I once had to make time pass --with the illusion but not the fact of productivity -- without this interactive screen. Whatever did I do? I watched TV, maybe, or did crossword puzzles, or sang along to the stereo, or typed nonsense words on my typewriter. (Typewriters! Do you remember typewriters?) It was such work, not working. And all the more so at the office, where you had to look like you were doing something even when there was nothing you wanted to do. I remember jobs where my chief occupations some afternoons was watching my hair grow. Oh, for a computer screen and unlimited Web access!

Those didn't exist then, but they do now, and I am grateful. I've mastered the have-real-work-open-in-the-background-and-click-to-it-in-a-flash-when-boss-or-husband-appears maneuver, and I spend way more time aimlessly surfing than I have any right to. Isn't it wonderful? If not for the Internet, I'd have to clean my house, parent my children, do my work, stay in touch with my friends, pay attention to life as it passes. But who has time for that, when there's so much time to waste?

Sure hope they keep that "Code Red" worm at bay. I'd hate to be cut off for even a wasted minute.