This is a revised version of a letter I wrote to a parent who is considering a specific doctor to consult on medications to help her child's problem behaviors.
We had (in hindsight) a negative experience with Dr. X. While he is extremely knowledgeable, genial, and responsive, he did not give us the evaluation we had asked for. We came in for a meds/ADHD evaluation; he gave us an autism evaluation (which we already had from Stanford/GGRC/UC Davis), told us our son was probably mentally retarded, told us that if we didn't potty train him by the time he was six it was unlikely to happen, and that, despite my son's obvious hyperactivity, he didn't recommend medicating him. I spent a long time feeling hopeless after seeing Dr. X.
Thankfully my son's amazing, wonderful home therapy program supervisor had practical rather than clinical experience and helped me regain my optimism -- now my newly seven-year-old son is almost fully potty trained (we flew to Las Vegas and back for Thanksgiving; not one accident during the entire week, even on the plane, even at night), and is learning to read via the Edmark system with a ferocity that is surprising even his veteran therapists.
The one thing I would laud Dr. X for is his caution regarding medications. He recommended that we explore every possible other cause of my son's hyperactivity before medicating him. We thought we had done that and eventually ended up going to see pediatric neurologist Dr. Y. She did think our son might have ADHD, and helped us explore a variety of medications: Adderall, Adderall XR, Focalin, Focalin XR. Each time he tried a new medication, we would have a two- to three-week honeymoon period of wonderful behavior, then he would plunge into a prolonged dark awful period of intense aggression. Our home life was horrible.
Then I talked with his regular pediatrician, Dr. Z. She said that children who present with ADHD symptoms often have undiagnosed seasonal allergies that make them miserable and lead to behaviors that mimic ADHD. We started my son on a daily dose of Claritin, and he has been a completely different child ever since.
What worked for my son won't necessarily work for every child, but I always feel that by sharing our experiences we special needs parents can help each other avoid reinventing the wheel.
Looking for that perfect holiday gift, the one that will both please its recipient and make its giver feel good?
Can I Sit With You? is a book co-edited by special needs parents Shannon Des Roches Rosa and Jennifer Byde Myers. It is a collection of stories about schoolyard social experiences, both good and bad. All proceeds from the sale of Can I Sit With You? go directly to SEPTAR, the fledgling Special Education PTA of Redwood City (www.septar.org).
These beautifully written, heartfelt tales should speak to anyone who has ever struggled to fit in with the other kids at school, wondered about feeling different, or felt like no one could possibly understand what they're going through. We hope they will inspire elementary and middle school students, or at the very least temper their bewilderment as they grapple with issues such as popularity, making friends, puberty, sexual orientation, religion, race, special needs siblings, and bullying.
The stories are told from the point of view of the former students, in their own words. We did not censor the profanities a former eight-year-old screamed at the boys who beat up her special needs brother. There is no preaching or patronizing. As one reviewer wrote, "Perhaps the most important lesson in all of [the stories] is that the writers all survived and grew up to have something to say, and a place to say it."
We think Can I Sit With You? is a wonderful book. And we would be so grateful for your support. You can purchase the book and have it shipped to you or your friends directly at:
We will start doing official promoting (press releases, website relaunch) on Thursday 11/29. We are also starting to plan Bay Area book readings and book release parties, so keep watching this space for more information (and watch the Can I Sit With You? blog for more stories).
Using an hour of free time not to holiday shop or to do good deeds or to spend time with my kids or even drink coffee or get some exercise. No. I am spending my free time declining the two-foot stack of catalogs that piled up during the CISWY crunch period, via catalogchoice.org. Takes time, but ultimately saves everyone time and money and resources.
Re: resources, did you see the sea of roofs in yesterday's Las Vegas photo? Guess how many of those roofs had solar panels on them? Exactly ONE. Sheesh. This disappoints me not just because of the wasted and needlessly rerouted energy, but FUCK, people, where else could so much energy be so free? A/C, it cost money money money. Solar would pay for itself yesterday. Durrrrrrrr.
Vegas, it is not so bad. If you're staying in a house with a dramatic view of Red Rock Canyon on one side and a sparkly view of The Strip on the other, and this is as close as you ever get to said Strip (in background; very nice to look at from afar, at night). If I wanted to lose five hours of my life to traffic, parking, and crowds, I can do that right here during baseball season or at Fisherman's Wharf.
Cool house, though. Leelo loved his grandparents' pool.
I am thankful for many things and people today, but the thing that brought me out of an extreme grouch slump after Leelo got up at 4:30 AM and we spent the earliest hours of the morning cruising and gawking at The Strip was a wonderful, thoughtful, and I swear to God unsolicited review of Can I Sit With You? on lulu.com:
...For any adult who wants to be allied with a child (and even normal kids get the blues), this kind of book may be just the thing to open up discussion of what's happening to that child. It may comfort just because of its honesty and its assurance that other children have felt and survived these things, or it could be used to foster problem-solving to help a child cope with the pitfalls and hazards of even the most normal school experience. It could also help kids who don't have problems (or who are the problems) to see the situation from the point of view of those who are struggling, and open up the way for conversations about compassion and the different experiences of other people.
However, the incredibly talented Jennyalice (and I) are new at this whole "publishing our own book" thing, and need a week to review a hard copy before unleashing our triumph upon the world and forcing everyone we've ever met to buy one as a holiday gift.
If you just can't wait and would like to buy a review copy, please do! We're fairly certain that it looks the way we think it does. But we'll be absolutely certain in a few days.
In the mean time, I'm off to Vegas in couple of hours. Seymour is itching to check out the mountain bike trails in Red Rock Canyon. Mali is much better, so all three kids are itching to hop in their grandparents' new pool. I am itching to sleep, but will instead settle for accepting every single glass of wine offered to me by my generous in-laws.
If you haven't already, go tell Jennyalice congratulations.
One CD has been in our car's six-disc changer since the van first joined our family four years ago: Leelo's Fourth Birthday Mix. Never once in three years has our boy tired of hearing his favorite songs from The Nightmare Before Christmas, Laurie Berkner, etc.
Tonight, however, for the first time I've ever witnessed, he did all the movements to "Nod Your Head" and "Ram Sam Sam." In the recorded songs' tempos, not at the slightly slower Mommy-sung clip. Impressive!
Funny thing is, he can't sing the songs and do the movements. Even when he sings with me, he is watching my mouth so intensely to ensure that I sing the right words that it is hard for him to focus on the movements. But when the pressure is off, he flies. SMRT boy. Now if we could get him to keep up the running for the potty when he needs to go, and stop with the shitting his pants to get Mommy's attention, we'd really be set.
In other news:
Iz and Mali are off school this week.
Mali has a really horrible respiratory infection. My "Hmmm, this cough sounds really bad" was greeted by the pediatrician with a "Yes, DUH," an in-office breathing treatment, Prednisone, and more Albuterol for her inhaler. If she has another bad night, she and I might not join the rest of our crew on tomorrow's Thanksgiving flight to Las Vegas.
Even when sick, Mali is hilarious. She woke up about every twenty minutes last night (clever Seymour opted to sleep in the guest room downstairs so as to avoid all the girl-children who had colonized our bed) to make elaborate requests with absolutely crisp diction: "Mommy, could you please go downstairs and get me some cold water from the refrigerator?" "I would like to put my hand right here on your neck, please."
Iz's language precision continues to amuse as well: "Converse high tops aren't made in the United States anymore? I guess everything is outsourced to China, these days." "Mommy, I mean which Webkins smelly stick would you choose if you absolutely had to! It's a *theoretical* question!"
I dyed my hair fuchsia on Saturday. Forgot to buy more orange dye, had fuchsia on hand. But unlike the orange, the fuchsia doesn't glow under black lights. No more after-hours go go dancing dollars for me.
It is really funny that Jennyalice and I think we have time to work on projects when our lives are already so fucking crazy that they drive us to drink distraction almost daily. But, somehow, we succeed. Even though I could go on editing indefinitely. (I am burying those statements here because I will crow when the succeeding becomes formally tangible.)
It is amazing to hang out with someone like Jenijen and witness how people can be even busier than me and yet find time for life-balancing activities such as exercise and creative endeavors. Plus her family is amazing. You, go away. They are our friends. OURS! Plus our partners geek out so well together.
It is so wonderfully sweet of Seymour to have pulled down kid- and kitchen duty for the last gnarly stretch of Can I Sit With You fine tuning and eating up every last second of my free time. Especially since he did so proactively and without one single complaint.
My current personal feelings are bouncing between how I felt when I almost dropped my Intro to Copyediting extension class because of life overload, but instead stayed up all night cramming and got an A on the final and in the class, and the gut-kick feeling of being the primary producer on a software product that shipped with a significant error despite my and my assistants' whipping the software testers until foam dripped from their mouths.
Of course, at the time I did not have children who kept me and Seymour up until 5 AM with their feverish coughing. Poor Mali.
Glad I am not in this alone. Thank you, Seymour, Jennyalice, Lea H., Minnie, Jabberwocky, and you wonderful, fabulous proofreaders.
Mali has been a dog for about a week. She will only answer to the name "Charles" (her grandmother's dog's name), insists on shaking paws and eating dog biscuits (granola bars), and barks a lot. "I'm not a girl, I'm a Dog!"
Seymour and I are amazed. We'd heard about kids doing this sort of pretend play, but have never experienced it firsthand. It's pretty cool.
I've been sideswiped by a bad cold. Of the "someone is trying to explode my sinuses, I need two wee corks for my nostrils, and the only way to get warm is to boil myself in the bathtub" variety. It wouldn't be so bad if I could curl up in my bed and die, but parents don't get to do that. Sigh.
As long as I'm grouching: apparently I will always approach music as though I am fifteen years old, because my first reaction to watching Grey's Anatomy was, "Is that Psapp? That theme song? But *I* found Psapp on my own! I have to tell everyone that I liked them before I saw this very silly 'It's a medical drama! For chicks*!' TV show." And I am still putting them on our holiday mix CD, so there.
*I have only seen some early episodes, so I don't know if the opening sequence has since been changed -- but I think its juxtaposition of chick lit and hospital imagery is the stupidest fucking thing I have ever seen.
The nicest part of my day was walking Leelo to his classroom (after dropping off my Auntie at JP's house, Iz at her school, Mali at her school, and my mom at the airport) and having every person in the halls stop and say, "Hey, Leelo!" and engage with him, whether they worked in his classroom or not.
A positive attitude in a Special Ed environment, it is almost magical.
Asked to go to the potty. Repeatedly. Even while on the trampoline! No accidents all day, not even spilled water (a frequent cause of clothing changes at school).
Invited me to sing songs with him. Asked me to sing songs with him. Many different songs. Many times today. Some songs he hadn't asked for in months, such as "My Darling Clementine" (which he calls "In a Cabin in a Canyon!").
One of the main songs was Ram-Sam-Sam. He tried to do the movements! Many of them are a very big deal for a boy with his motor issues, and sometimes he just couldn't get it, but a couple of times when he focused really intensely, he could do the two-fisted barrel roll with his arms! He certainly did a lot more (successful) clapping than I've ever seen him do.
Demonstrated a really beautiful understanding of rhythm. He started tapping out a beat on the counter. I started singing an improv song to the beat (some variation on the usual theme of "I love Leelo, yes I do, he's yummy and he's clever and he's squishy too"). He sped up his beat to double-time, right along with the song. Then he switched back to each beat. Then he did every other beat. He kept perfect time throughout.
Went back to the (clean) trash can to retrieve discarded straws after being told that no, he couldn't have a new one since the one he just threw away was only five minutes old. Without a tantrum.
Demonstrated really really great beginning sight reading with his Edmark program. He does this not just at home, but at school, because he is in a wonderful school in which they understand and accommodate him so well that he not only loves going there but is actually learning.
Lots of unprecedents here. And the happiest part for me is that there was so much interaction and fun and laughing and playing. Not all the time, but enough. I try very hard to let Leelo be Leelo, to try to help him be happy according to the way things are done in Leeloland, but it really is sweet to be able to play with him in ways that come so naturally and easily to me.
Contact me at ciswysubmissions at gmail dot com or leave a comment here if you'd to like to both proofread a 100 page+ manuscript (boomerang cycle: out Tuesday AM, back by Thursday PM) and get a very heartfelt thank you on the dedications page of the Can I Sit With You? book.
Can I Sit With You: Can You Believe Our Cover Art?
The explosively talented Lea Hernandez just finished the cover art for Can I Sit With You?. I was so overwhelmed by the color, beauty, and details that I almost cried. Those shoes, people. Those are hand-crafted clay shoes. Please spend a long time poring over the picture and drinking in all the detail work, and being amazed once more by all the volcanic talents who have donated their work to Can I Sit With You?.
By the way, Can I Sit With You? is participating in NaBloPoMo. In between stories and announcements, we'll post your one- or two-paragraph descriptions of the silliest thing you ever did to get someone to be your friend. I posted yesterday; see if you can top my absurdity!
The place Iz and I will be going to in January: Cambodia. To stay with friends. Who will also be our tour guides.
I don't want Iz to think such a poverty-stricken country is just about ancient temples and beach resorts, so our friends (who work on poverty issues for the World Bank) have suggested that she do a picture book* and used clothing drive at her school, and bring the donations to an orphanage herself.
Before you throw your computer across the room or try to Facebook*-gift me with a can of whoop ass, consider this excerpt from an email written to a friend last night:
Apologies again for all the delays in setting up Mali's and Zeke's joint birthday party. In the last week I had a Halloween party at my house, held Leelo's birthday party, held a birthday dinner party for another friend, took the kids to the Monterey Bay Aquarium, took Iz and Mali to the Zoo, had a two-part emergency root canal, cleaned the entire house (including 20 loads of laundry) to get ready for my mom and her sister to stay with us, stayed up until 2 AM last night writing out instructions for them to take care of our kids, and have been working very hard on a blog/book project that we're going to publish next week: www.canisitwithyou.org. Also Leelo was home sick much of that time and his afternoon therapist was out for the week. *Whew*
So I am enjoying my uninterrupted view of Tomales Bay while being a big lazy lump.
This is the point where I normally make excuses and start rationalizing my good fortune, but don't you think that every single one of us would jump at such an break, were we afforded it?
What I think my SNK parents friends and I really need to do (those of us who don't have semi-local grandparents who will watch our kids) is start up a Weekend Getaway co-op. We set aside as many weekends of the year as we have members. Each member parent couple gets to go away for one of those weekends. The rest of us will watch their kids, in shifts.
You know what I enjoy more than going into a book shop and discovering that they are featuring my favorite novel of all time, The Curious Incident of the Dog in the Night-Time? Telling the clerk that many autism families really dislike said book because it manifests many of our worst fears -- and having said clerk argue with me using the book's literary merits: "But it's such a great story! So well-written!"
Yeah. Maybe. But I asked her if she would tell a cancer patient to read a novel in which the cancer-striken protagonist neither survives nor comes to terms with her new life, but instead dies in several short but painful stages. She continued to describe the book's many wonderful literary features and devices. At which point I said, "Really, what I need you to understand is that people should not recommend this book to families affected by autism." She finally said, "Oh, okay."
Nice start to my vacation. Nicer even than the emergency root canal I had this morning, and which delayed my departure by several hours.
FYI, by "vacation" I mean that I am hiding out, alone, in Point Reyes, while my wonderful mother and her wonderful sister watch my wonderful children. My wonderful husband will join me in two days, and then we'll have our first joint vacation away from the kiddlings since 2002 (since before this blog even existed).
I am looking forward to lots of hiking, lots of uninterrupted finalizing of the CISWY book, and to downloading the premiere episode of Grey's Anatomy so I can see what the hell Ep is always nattering on about.
I put Mali in my bed last night at 9 PM. She asked me for some water, then she asked me for a kiss. Then she put her head on the pillow and I didn't hear another peep from her until this morning.
THIS KIND OF TURNKEY BEDTIME HAS NEVER BEFORE HAPPENED EVER IN HER LIFE. NOT EVER NOT ONCE. Usually our girl simply will not consider go to bed until 11 PM, and even then either kicks and screams for an hour if we don't sleep with her, or kicks us in the kidneys for an hour if we do.
Granted, it was really 10 PM since California is a Daylight Saving state, she hadn't taken one of her infrequent naps, and I didn't even try to put her in her own bed. But it is progress. I am really looking forward to a time when Seymour and I aren't up at 6 AM with Leelo and then still up at 11 PM with Mali.
There are few places Leelo loves as much as the Monterey Bay Aquarium. We don't go that often for three reasons: we live 90 minutes away, I refuse to go any time it might be crowded (i.e., all Summer long), and Leelo's schedule rarely has a hole big enough for a major excursion. But we go when we can, because it makes my son so damn happy. (Oh, and my daughters, too. Hi, girls!)
I knew that the trip was going to be a challenge, even with brave Jo Spanglemonkey at my side. Leelo is well on the way to being potty trained, but he is still not entirely reliable. It is really difficult for him to focus on bladder control in an environment with multiple distractions (not surprisingly, he is most successful at keeping dry while riding in the contained, simplified environment of our car). He has never been to the Aquarium in underwear rather than pullups without a dedicated Leelo point-person shadowing him. He has never been to the Aquarium the day after a thoroughly successful sneak campaign to pillage large amounts of his sisters' Halloween candy.
Still, he did well on the drive down. We stopped in Gilroy for potty and coffee, and he stayed dry. We parked in Monterey, at the parking lot four blocks distant from our destination, and he stayed dry. At block three, though, he started grabbing at his crotch. I asked him if he needed to go, and he looked at me with pinched desperation. I looked around and realized, with escalating panic, that there were no potty options for entire stretch between Leelo and the Aquarium entrance -- only ticky-tacky tchotchke shops and roped-off construction areas. I had Mali in the stroller and my companion Jo Spanglemonkey was on the three big girls (her Sophie, my Iz, and Iz's friend Emma), so I left Jo in the dust, grabbed Leelo's hand and Mali's stroller, and bolted for the gate.
We almost made it. As I slammed a stack of membership passes on the counter, asked if I could run for the bathroom, and was given a warm, polite "of course," Leelo started peeing all over the floor. Sigh. Not his fault.
I have a hard time controlling my bladder in the wave tunnel. It's just too exhilarating. And I am not a potty-training child who has a hard time focusing on bladder control in overstimulating environments.
However, this second accident meant that his backup shorts and underwear were wet, and that he had to wear a pullup under damp shorts. Our boy was not pleased. Vocally. Loudly. Thankfully, the aquarium was not that crowded, nor do yowling children attract much attention there.
While Jo and the girls checked out the main otter tank, I ducked into a gift shop to get the girls matching octopus shirts, to prove to myself that I was not actually freaked by the octopus that had scared the shit out of me only moments earlier. The girls seemed thrilled by their shirts, and asked to go into the store to check things out for themselves.
Iz popped right back out again and asked if she could have a mood necklace. I said "Brand new shirt not even five minutes old what? That means NO."
She whined. Then she said she wished her generous soft touch Auntie Bree was there (Auntie Bree bought Iz a Webkins after Iz got a big No from me). I then told Iz that 1) No means No, 2) Nagging means Hell No, and 3) Telling me, after I had just gifted t-shirts to her and her friends, that she wishes someone nicer was here to buy her more things means Give me your shirt right now and you can have it back in an hour if you stop whining and don't mention that fucking necklace ever again.
I also told her that I really needed to focus on helping her brother through his damp shorts crisis. Case in point: while we were talking, and even though I was holding his hand, Leelo managed to whip off his pants and was standing in the middle of the busiest section of the Aquarium, naked from the waist down. I have to admit that it was a fine demonstration of motor skills and coordination.
The girls then decided they were hungry. I asked the information desk people if we could get one of the many volunteers to help us with our trays as we navigated the cafe; they said they could help us but that there was also a sit-down restaurant. Score! We sat and were served and I had a much-needed glass of wine and the kids were so happy with the food that they couldn't stop eating and almost didn't talk at all. Both an adjacent diner and our waiter informed us that our kids were Incredibly Well Behaved. Wow.
I took Leelo to the bathroom, as it'd been an hour since his wave tunnel accident. Bone dry.
Leelo then told me that he "Want to go see the fishes!" and ran for it. We made our way over to the Open Ocean tank. Leelo slammed some people out of the way, and only gave a two-handed running smack-push to one big guy, but everyone was cool about it and downplayed my profuse apologies. Mali squealed to get out of her stroller to go see the jellyfish, so Jo and the big girls helped mind her so I could stay with Leelo as he spaced out in front of the Open Ocean tank.
Then we went to the potty again. Again he was dry. In that same post-second-underwear-accident pullup.
Next was the Whale play area. Mali loved dressing up in whale costumes and pushing all the cetacean and pinniped sounds buttons. Leelo did too (so much so that I downloaded him some humpback whale ditties from iTunes when we got home).
Then Leelo kept asking to go on the slide. I thought he meant Spash Zone, which is closed for another few months, but actually he meant the new Otters exhibit downstairs (where he'd only been once, in May). Smart boy!
Next was the Lower Open Ocean tank. Happy happy happy boy. Happy big girls. Happy Mali, naming all the critters gliding by. Though she kept insisting that the giant sunfish was a sea turtle.
Potty again. More dryness for Leelo.
The last place we visited was Jellies As Art. Leelo loves jelllies. Here is my favorite picture from the trip, of him in the Moon Jelly room (he is in silhouette). I got a real pang out of seeing him there, as I don't know if he'll ever understand my story about the magical time I was on a boat with his dad, at night, surrounded by glowing moon jellies. Iz loves that story. Mali will. It's possible that Leelo already does, but there's no way for me to tell. Not now.
We left Monterey and opted for the mountain route home. We joked about crashing Grace's home, but instead stopped off in Scotts Valley for more potty and coffee. Leelo was dry. He was also very grumpy about using that potty, and had to be encouraged to go.
Then home. Leelo's original pullup was still completely dry when he changed into underwear. Smart, talented, perplexing, wonderful boy.
Just returned from Leelo's halfway very successful (the first half) birthday party, at which at least half the adult attendees were going through head-splitting stress (some openly, some not), to the news that Musharraf has suspended Pakistan's constitution and deployed troops in Islamabad. While my brother is in that same city, advocating for U.S. interests. I am not going to tell my mom. I might throw up, though.
Ep and Claud have taken Iz for a few hours. I am grateful to them; I needed the break from her continuous grievances and ungratefulness. Also grateful to Seymour for taking Leelo outside so I can type in peace while Mali works out her post-party sugar- and social-withdrawal by sleeping on the couch.
Update: My SIL called with the news that my brother is safe and sound and under lockdown in his hotel, and that he'll likely be leaving the country early. Fingers crossed. Thanks for the kind comments.