TweetLike swallows returning to Capistrano, scores of goats descend upon our neighborhood each June to eat the long, fire-prone, un-mowable hillside grasses. Where do they come from and how do they get there? I have been telling my kids that they come in scourges, like locusts. But I should probably stop the recreational fibbing and start teaching my offspring some practical goatherding, since holding that job is still one of my goals in life and I plan to make them my apprentices.
This year, instead of shrieking "THE GOATS! THE GOATS ARE HERE!" and almost swerving into oncoming traffic, I pulled off the road and took some snaps:
The goats are here! Click to embiggen the herd.
TweetLike swallows returning to Capistrano, scores of goats descend upon our neighborhood each June to eat the long, fire-prone, un-mowable hillside grasses. Where do they come from and how do they get there? I have been telling my kids that they come in scourges, like locusts. But I should probably stop the recreational fibbing and start teaching my offspring some practical goatherding, since holding that job is still one of my goals in life and I plan to make them my apprentices.
TweetThis is a long post, but one I hope you'll pass on to help debunk the image of Jenny McCarthy as a reliable source of general autism information and support, while spreading the word about hope and resources for ALL autism families.
"But vaccinations cause autism. Sure, science says otherwise, but Jenny McCarthy has some real convincing anecdotes.” -The Onion
Jenny McCarthy's son was not only diagnosed with autism, but had severe, life-threatening seizures. Through medical intervention, applied behavioral analysis (ABA), and other therapies, he is now doing much so much better that his mother describes him as "recovered" from autism and calls him a "poster child for hope." When she went on Oprah and described the symptoms of autism, parents across the country were able to give their quirky children's behaviors a name, and start getting those kids help.
I am grateful to her for helping those families, and I am glad for her and her son -- as are most autism families I know, because we crave success stories and the hope they bring as much as we crave our children's happiness. Parenting these kids we love so much is rewarding, but it can also be devilishly challenging, and we need role models to replenish our hope reservoirs, frequently.
Ms. McCarthy could have been autism's true hope-bearer. She could have used her visibility to create and promote books full of resources and ideas for helping all families with autism, telling us to never give up hope, to focus on loving our kids whether they respond to therapies or not, while including a chapter or two about alternative treatments that seem to work for her son and some of his peers.
Instead, she produces books like Mother Warriors, about how she and other parents rescued their kids from autism using expensive and time-consuming biomedical diet and supplement methods that won't help most kids on the spectrum, portrays pre-"recovered" children in a very negative light, and gives parents of newly diagnosed autistic children false hopes of recovery. Not real hope. False hope. That, and misinformation, are what Mother Warriors is full of, among other things.
Reading Mother Warriors is like listening to a college sophomore try to recruit campus freshman to Earth-First!-style environmental activism. Yes, she is sincere. Yes, the stories that keep her going are heartbreaking. Yes, we need to challenge some industry professionals to change their thinking. Yes, she is walking the walk, and taking action.
Yes, she is totally naive, in thrall to extremists, making a good cause look bad, and could possibly get people hurt.
Ms. McCarthy believes that her version of autism is reality, but instead of supplying any kind of non-testimonial documentation, she uses emotional manipulation, pop psychology, ratings numbers, and bullying -- not evidence -- to support her assertions. She shouts, "[My child] is my science!" when confronted with contradictory evidence, considers being on Oprah the ultimate validation of her "truth," declares that The Secret helps her to be a better autism parent, and thinks that yelling the loudest is an appropriate debate technique.
She also insists, as do many of the parents in this book, that she saw her child disappear and regress after his vaccinations. None of the parents in this book will consider that their child's regression and the timing of the vaccinations might be a coincidence:
"Yet, speculation that shots cause autism continues to stick in parents' minds. Why? One big reason is because we have all heard reports of kids suddenly "got" autism just a week or two after shots.All Ms. McCarthy had to do to give this book some legitimacy was to state, upfront, that some kids diagnosed with autism have other medical conditions that need addressing, and that when some of these kids become healthy, they seem to lose their autism diagnoses. She should have had a front-and-center checklist of symptoms to watch out for, if children are to be candidates for biomedical approaches: uncontrollable diarrhea, severe insomnia, adverse vaccine reactions, etc.
"In fact, one of the scariest characteristics of autism is that it can suddenly afflict a child who seems developmentally normal. But, is it possible that this sudden problem right after shots is just a coincidence? Absolutely, yes! Every day, serious and amazing things occur, purely by chance. Think of it this way, in a large country like the US, a one-in-a-million coincidence happens 300 times a day.
"Approximately 24,000 children are diagnosed with autism every year and in about 1/3 of those cases (8000/year...150/w) normally developing kids show abrupt deterioration (so called "regressive" autism). Regression usually appears between a child's 1st and 3rd birthdays, a period during which they get shots 4 separate times. Do the calculations and you quickly realize that, every year, over 600 children will spiral into autism during the four 1-week periods that follow these 4 shot visits... just by pure, utter, random chance."
-Harvey Karp: Cracking the Autism Riddle: "Vaccine Theory" Fades as a New Idea Emerges
She should have said, on the first page of the first chapter, that even though she has encountered many success stories, the biomedical approach doesn't work for most families with autism: information she acknowledges but buries, in one paragraph on page eleven, and another on page 140. All the other pages of the book are dedicated to telling us how all kids with autism -- not those who have serious illnesses coupled with an autism diagnoses, but all kids with autism -- should at least try the biomedical approach.
The children in this book are not like most of the autistic kids I know, kids who did not regress into autism, many of whom are almost supernaturally physically healthy (my own son used to be a barfer, but that was due to intolerance of the antibiotics for his frequent ear infections. Once he got ear tubes put in and the antibiotics stopped, so did the barfing). Our kids contrast with the children featured in Mother Warriors, who all have gastrointestinal disorders, seizure disorders, family histories of immune disorders, or bad reactions to vaccinations.
I do believe that successfully treating these illnesses might lessen children's autism-like symptoms. Adults with conditions like ulcerative colitis, a large intestine disease similar to the leaky gut syndrome cited by several Mother Warriors parents, say that their pain can be excruciating, and leads to extreme irritability and mood swings. Intense pain could cause autistic-like symptoms and developmental delays in a baby or very young child. It is also a condition that is helped by trial-and-error dietary modification, in some cases a gluten-free, casein-free diet.
The one Mother Warriors child who didn't seem ill is a girl whose developmental trajectory mimicked that of Catherine Maurice's daughter in the classic story of autism recovery, Let Me Hear Your Voice. You know, the girl who regressed into autism and was recovered by ABA therapy while using goldfish crackers as reinforcers? It is difficult to take biomedical and wheat-free dairy-free diet claims seriously in that warrior mom's case. (Of course, almost every last kid in Warrior Mothers also had ABA therapy, but ABA is infrequently mentioned as a contributing recovery factor.)
The author skews her book in other non-inclusive ways. She lists no resources other than a directory of DAN! doctors, a few things that she wants you to buy: her DVDs, hyperbaric oxygen tanks, infrared saunas, etc., and a page about her and Jim Carrey's cult-like autism organization, Generation Rescue. Why doesn't she list any ABA resources, non-DAN! developmental pediatricians, autism research & support agencies, parent organizations? There are so many places online to send autism parents for help and support, but no one looking to this book as a source of general autism information would know that.
Specific instances of additional skew:
- She lets Dr. Jay N. Gordon, who wrote the introduction, embarrass himself by citing the continuously-debunked vaccines-causes-autism myth and alluding to the not-autism Hannah Poling vaccine injury compensation case.
- She lets a father justify the use of the anti-viral Valtrex on his autistic child by describing studies of post-viral autism-like regression in adults, without a single footnote or citation to back up his claims.
- She lets another parent describe how vaccinations stole her child's words, then later contradict herself entirely by talking about that same child's severe apraxia of speech, a motor planning disorder that is either present at birth or the result of stroke, tumor, or other brain injury.
- Several of the parents blame mercury in vaccines for their children's autism, without bothering to make a distinction between the non-bioaccumulating ethylmercury that used to be in vaccines, and the Minamata-disease-causing methylmercury everyone thinks the parents are talking about.
- She states that "No one ever talks about the [autism] siblings." Right. She's the first person who ever thought of them! Except no, no, no, and no.
- Eighty percent of autism parents' marriages end in divorce. Also a no.
- No one is studying biomedical approaches to autism, or vaccine-autism links! Absolutely untrue.
Other areas of the book go beyond faulty research or bad judgment, and into irresponsibility. By including the story of a family whose child died from a possible adverse vaccine reaction, Ms. McCarthy is stooping to emotional exploitation. No one can deny that bad vaccine reactions do happen; they are the reason the Vaccine Injury Compensation Program (VICP) exists. But whereas this family's poignant story should be used to educate parents and doctors about exercising caution after adverse vaccine reactions -- the child had a severe seizure after a vaccination, but was vaccinated again, and had another bad reaction -- instead the author places the story in a biomedical context and has likely scared untold numbers of parents out of immunizing their kids. Do you know what happens kids stop getting vaccinating? They start to get sick, and some of them die. Just like the child in the story.
But facts and statistics aren't going to terrify new recruits into joining Ms. McCarthy's cause. So of course she's not going to say that it's much more risky to put your baby in a car seat and drive them down the street than it is to vaccinate them. In the past 20 years, U.S. families have filed 11,970 vaccine injury and 1,006 vaccine-related death claims (note that these are for adults as well as children, and are for claims filed, not claims verified and compensated). In one year, 2005, car crashes injured 184,000 children under 14 and killed 1,335. If your child has an adverse reaction to a vaccine, then you should devote your energy to investigating why, getting answers, blocking decisions you're not comfortable with, and encouraging other parents to vaccinate their kids, so herd immunity will keep your vaccine-averse child healthy.
Another distressing book theme is the assumption that parents who are truly dedicated advocates for their children will be able to somehow pay for all of the approaches this book recommends. Biomed is pricey and time-intensive, even if you just go for the GFCF diet and a few supplements. If are convinced you need go for the Mother Warriors gold standards, the DAN! doctor and resulting multiple supplements, medications, possible even chelation, and add on the hyperbaric oxygen treatments that every other person in the book cites as miraculous, no wonder you have parents in this book stating that they'd sell their houses, go into debt, don't care, need to recover their kid at any cost. But what about people who don't have a house to sell, or who are already in debt? Where is the resource section for the desperate parents who want to listen to Ms. McCarthy, but can't afford what she's selling?
Mother Warriors would not deserve this kind of drubbing if its author wasn't smacking down naysayers at every opportunity, unwittingly or knowingly spreading falsehoods, or had been guided by a clearer head. But, on top of all its other failings, this book is so badly organized that the best information (e.g., her p. 141 recognition that some kids don't recover and their parents are okay with that, and some recover with ABA therapy alone, but some kids are sick and those are the ones she's trying to reach) is buried. A good editor and one week's work could have transformed this book into one ten times more useful. And surely someone at Dutton could have spent a day at Ms. McCarthy's own online alma mater, and realized how much of the book's information doesn't hold up?
Even though the damage Ms. McCarthy is wreaking on my son's peers, their potential, and their families irritates me, I cringe when people take potshots at her because of her background as a TV personality and Playboy playmate. Her former career has no bearing on her experience as a mother and an autism activist. But she can be criticized for her lack of critical thinking skills and unwillingness to help the kids whose families don't or can't buy into her largely spurious autism recovery campaign.
P.S. One veteran mother talks frankly about her adult autistic son having adult sexual needs, a topic which needs more open discussion. However, that mother takes care of her son's needs by providing sex workers (a practice I am neither addressing nor condemning). That mother needs to give her son the benefit of the doubt, and learn more about autism and adult relationships.
TweetA letter arrived last night, letting us know that Mali got into Esperanza, the local Spanish Immersion public elementary school that her older sister attended.
The school to which I'd already resigned myself to her not going, because I didn't realize alumni still had to take the mandatory school tour, plus the administrative staff completely turned over since Iz arrived and no one remembered us, and the principal said (even after we took a tour) that admission would likely not happen.
I was content with the local kinder but am now conflicted. Seymour's not, he wants her in Spanish immersion and thinks that a kid who is already excelling at dramatic readings will be bored in a regular kinder; I suspect it would be nice for her to mess around and do crafts and non-reading kinder learning for a year. But it is hard to turn away from free language immersion *combined* with regular kinder learning and crafts.
Have to make a decision by tomorrow. What would you do?
- Spanish Immersion for Free, Free, FREE!
- Full-day kindergarten
- Three kids in three different schools no matter what
- Fifteen minutes across town
- Three different school year schedules (local kinder & Iz's school are on same calendar)
- Strict dress code (but I have hand-me-downs from Iz)
- At the bottom of the hill where I pass it 6x each day
- Neighborhood kids, neighborhood friends?
- Ep and other friends have kids there
TweetA friend with a child on the spectrum recently tweeted her dismay in seeing numerous parents at her child's ball game reading Jenny McCarthy books. I understand, because I read Ms. McCarthy's Mother Warriors, and am myself distressed by how misinformed the author and her featured parents are regarding legitimate autism research, treatments, and literature.
Mother Warriors is not a book new autism families should be reading, so please don't recommend it to them. Parents and caregivers who don't know any better -- or whose libraries aren't stocking any other autism books -- are going to be stuck with a pitifully skewed, and largely unhelpful take on autism treatments and possibilities.
The main problem is that Mother Warriors is a compilation of testimonials. Ms. McCarthy really does believe what she's saying, and so do the other parents featured in her book. But if this was a book we could take seriously, someone would have edited the self-contradictory statements and omitted the factual errors that riddle its pages. If this was a legitimate information source for autism families, it would list resources besides the ones the author is promoting.
Trusting Jenny McCarthy with your autistic child's welfare and future is like asking an American who spent a couple of years working in an Israeli Red Sea Resort -- and thinks that's all the experience she needs -- to guide you through Gaza. She might be passionately dedicated, she may have even even weathered an attack or two. But she simply will not have the background or breadth of experience to speak for all of the people involved, or to guide you through areas of severest conflict. If you rely on her, there's a good chance you're going to be very, very sorry.
This is not to compare autism to a war zone, but to reiterate that new autism "recruits" are best served by veterans with extensive experience. This is especially true for families whose children are not as high-functioning as Jenny's son.
Autism families, you want better than Mother Warriors. Your autistic child deserves better. Please spread the word.
Update: My extended review of Mother Warriors elaborates on the statements above.
Seymour suggested that we blog and RT books that families of autistic children should be reading instead. Here are my top six:
Autism From Autistics' Perspectives:
Autism Approaches and Therapeutic Techniques:
TweetHonestly, the most important thing about excursions some days is that they keep us busy. Especially when Leo and Mali are schedule-free simultaneously, which was what happened yesterday (Iz flew east two days ago). Here's what we did:
Mali got four vaccinations: HepA, HepB, Polio, and DTaP (we're still catching up, as the nurse remarked rather sniffily). Leo was a good sport as he'd been told many times we were going to the doctor for Mali, not for him. He did not ask to go to the bathroom even once as is his usual doctor's office MO, he did not get upset when Mali cried. And she cried a lot, as I would have if my arms were that tiny and were being stuck by needles that long and thick. But even the shots couldn't get her to let go of the office's copy of The Bears' Vacation, which she kept reading aloud between injections:
"I'm watching Dad, I'm all set to...OWWWWWWWWWWWW!" **sob** "...go..." *sniff* "Then here..." *hic* "here is the..." *sniff* "first rule you should know...OWWWWWWW!"10:05
Toys R Us for a vaccination-survivor's treat: a "Little Miss Pet Shop" "Like SuperGirl's! The funny dog with the big wide head and long body!"
Ooooh, and they have soccer-ball sized jelly urchin balls! Leo immediately ran up and grabbed one and said, "Mommy, I want a jellyfish please." It is rare for him to have a non-food request, so of course I tell him yes, he can have it.
Change mind about taking the kids hiking at Butano and text Seymour, asking if he'd like company during lunch.
Haircut place to lose four inches of Mali's hair. Goodbye, last of the baby curls, you are tangly and impossible to brush and when you're attached to the the head of a third child, your sentimental value does not compensate sufficiently. We already saved a lock from Mali's very first haircut. BYE.
Mali now has a swingy little bob.
Seymour texts back. He has a one-hour window.
We brave the freeway-inaccessible retail maelstrom that is the Serramonte Center and score a parking spot close to Rubio's, purveyor of San Diego-style comfort food. I realize with much joy that a European-style bakery (a.k.a. Leo-croissant-provider) has been installed next door! Good news as I intentionally went out the door sans bags of Leo snacks so that he wouldn't ask me for food every five minues, hoping that the Universe would provide a Leo lunch opportunity.
Retrieve Seymour from work and head toward Franklin Square Park, which has been tranformed into The Best Playground Ever and is wheelchair-accessible and fenced and has lots of parking and places to picnic and all sorts of gross motor and tactile and balance activities and OMFG even that endangered beast, the merry-go-round! Seymour and I were impressed and intend to make these lunches a habit during the kids' breaks. Mali became too excited to eat even though she'd been complaining about her empty tummy all the way from Serramonte, and Leo also played non-stop (though he ate first, being a practical boy):
Head home and watch our current favorite show, The Penguins of Madagascar. It is so f'ing brilliant.
Swimming. For a loooooong time. I hate to get wet and so observe.
Leo has a giant distended belly from drinking three gallons of pool water. There has to be some kind of bitter flavor we could add to the water to make it unpalatable yet still swimmable. Too bad saltwater conversions are so expensive; he doesn't drink ocean water.
Post-pool Leo pitstop, then run to the local independent bookstore (Mali falls asleep enroute and has to be carried the entire time; another desperately needed post-pool-pitstop upon arrival) to retrieve some good hard fantasy for Seymour's Fathers Day present. Clerk is very excited about my choice, not so thrilled that Leo makes funny noises and keeps bumping his kiosk, even after I asked him to stop. Sigh. I need one hand to hold up sleeping Mali, and one hand to pay for my purchases, sir, apologies.
Grocery store. Wakeful Mali. Another immediate and enormous post-pool-pitstop upon arrival. I am tired from weeks of ovescheduling both good and bad, and splurge on a bought dinner: carrot soup, tabouli (one of the lighter and cheaper items in the by-weight salad bar), and a seeded baguette. The presence of the latter is apparently enough to prevent a dinner roll tantrum from Leo, whew.
Home. Make dinner for Leo. Tweet about funny things Mali says.
Excursions are done for the day, kids are tuckered (mission accomplished), time to turn on our version of domestic. We wait for Seymour to return home to his nice, tired family.
TweetYou may wonder what the heck is up with all this week's travel and outings posts: They were the groundwork for this week's BlogHer Post: Hell No, We Won't Stay Home: Excursions With Special Needs Kids. Please check it out, and if you have any tips of your own, please leave them in the BlogHer post comments section.
More BlogHer fun: A call went out a few weeks ago, requesting parents' perspectives on kids and caffeine, and I responded. Wouldn't you know, they slapped my ramblings into the video! You would think someone would have told me about my facial tics before this point:
Other news: Today is Iz's last day of 5th grade and elementary school. I am choosing not to think too much about having an almost-middle-schooler.
We will celebrate with the obligatory McDonald's meal (I got sick of her asking for McD's when she was little, and told her that our family only ever goes on the last day of school. I still have to make good on that improvisation, every year). Then tonight we will put her solo little bottom on a plane to San Diego, where she will meet up with my mother, they'll fly to Washington DC, and spend a week on Chesapeake Bay with two of my brothers and their families.
Today is also Mali's last day of preschool. FREEEK. Only great big school kids for us after today. She is still as amusing though now more devilish than darling, and she never ceases to suprise us in that she actually pays attention to her environment and figures things out independently. I learned this when I went to retrieve her from the backyard, and was greeted by a hose blast to the chest. No one around here showed her how to turn on the hose or manipulate its sprayer head, or expected her to have the fine motor skills for that task. So, impressive as well as infuriating.
Leelo is off school this week, but is being a good sport about having a different routine. His amiability is extending towards food tolerance as well: he ate the cornmeal pancakes we've been urging him to try for seven years -- with syrup, even -- and also voluntarily tried meat for the first time in his life (bacon, of course. I have witnesses).
I also found out that he will have the classroom we requested for next year, and that it will have only nine rather than twelve students. Whew. It's across the hall from his current room, and the teacher already works with his current teacher, so the transition should be less stressful than a move to a new site, and we can work on getting him used to the new environment during summer school.
It was suggested that we move him to a less restrictive classroom, but Seymour and I, as well as his teacher and Supervisor M, are not convinced that he's ready. I really want him to have a good winter -- the real test of his temperamental equilibrium -- before we'll consider moving him out of his segregated site.
The end of the school year has been a typical stress nexus for Seymour and me, but I think we're through with the worst of it. Summer begins, for real, tomorrow.
TweetLast week I took Leo to the Monterey Bay Aquarium. My son is a huge fan, and would visit every day if he could; but the Aquarium is a very popular and often crowded place, and so not always the ideal environment for a child with autism. Not for my active, vocal, unpredictable, and easily overwhelmed boy with autism, anyhow.
We are fortunate to live nearby and visit frequently. After many, many successful visits and a few catastrophic ones, I now know what helps my son have The Best Visit Ever. Here's what I recommend for Aquarium-bound families like ours.
Locals: Buy a Membership
At $120 for one year, the basic family membership pays for our family of five on the first visit. Every visit after that is essentially free. As members, we have never had to wait more than two minutes to get in, which really helps squirmy boys who are still learning to stand in line. (Note: our current membership expires at the end of this month, but I'm not going to renew it until September because we don't visit during seethingly-crowded July & August.)
Out-of-Towners: Buy Your Tickets Ahead of Time
Leo doesn't like to wait in line, and neither do most of his friends. Plus the ticket lines for the Aquarium can be quite long. If we weren't members, I'd buy my tickets online so we could walk right in.
We arrive the moment the doors open, 9:30AM during summer and 10:00AM the rest of the year. Timely arrival makes the difference between Leo getting to bliss out and commune with the jellies in relative solitude:
... and Leo fighting his way through jellyfish-ensorcelled mobs one hour after opening:
Since our recent visit was technically during summer (i.e., after Memorial Day) even though many local schools are not yet out, I knew we wouldn't get primo viewing or access to all of Leo's favorite exhibits. We had to make some choices. After the jellies, my son is most obsessed by the Outer Bay tank and its sharks, so we went there second. (And fifth. And seventh. And ninth.)
Sometimes, if the main Outer Bay viewing area's crowds aren't too tightly packed, we can shoehorn ourselves between a wall and one of the tank's corners, where Leo's spinning and glee and squawks only elicit questioning glances from one side.
Other times we turn around and head upstairs to the tank's viewing balcony. This last time, Leo was content to sit in the dark on the balcony for a good thirty minutes, while I bounced him in my lap and sang to him and gave him my full attention. This was possible because -- for the first time -- it was just the two of us. No sisters, no friends, no helpers. I had thirty precious minutes of uninterrupted joy with my son. I think there's a MasterCard commercial to be made from our experience.
During really bustling times, we head downstairs to the Outer Bay tank's ground floor viewing area, which is tucked away in the Vanishing Species exhibit between Wild About Otters and The Secret Lives of Seahorses. Few visitors seem to know about this alternate viewing area, which is nice for families like ours. The experience is not as immersive nor as dark as it is upstairs, but you get even closer views of the rays (that's *Mr. Ray* to Nemo-loving kids like Leo) and hammerheads. And Leo loves all the levers on the adjacent displays.
Cut Your Losses
We managed to get into the excellent new exhibit, The Secret Lives of Seahorses, but it got too bustling for us very quickly. So I kept us back from many of the tanks, as Leo's unpredictable behavior makes me leery of close quarters with strangers and their tiny children.
Both of us thought the seahorses were a trip, and Leo enjoyed the tactile experience provided by the giant seahorse statue. Next visit we will hit this exhibit first, so we can spend more time wondering at the seahorses and their hemispheric aquarium habitats.
We staked out the self-service cafeteria so we could get in right when the doors opened (11AM on weekdays, 10 AM on weekends). Otherwise, the chaotic mass of perplexed food-seekers in the slightly confusing kitchen area couldn't be more overwhelming for a child who dislikes noise, disorder, and crowds. Should you choose to brave the cafeteria during peak hours, note that grab-and-go beer and wine are also available.
Early diners also get the best seats in the cafeteria's dining area, with views of seals and cormorants, boats and divers, and sometimes even kayakers. Later diners can't always find a place to sit down, one of my worst-nightmare scenarios for an outing with Leo because he doesn't understand why we can't just eat all the food on the tray I'm holding right where we're standing.
If the cafeteria doesn't work for you, or if your kids aren't going to eat that early, you can bring your own food to the main amphitheater outside the cafeteria dining room, or the exterior amphitheater just past the Groups & Will Call entrance. You're not supposed to eat in any non-restaurant/cafeteria areas inside the Aquarium.
If you really, really don't want to worry about where you're going to eat, and your child can tolerate a waiter-service restaurant meal, the Aquarium's swanky reservation-taking restaurant is open from 11 to 3 (its bar is open until 5:30, which is good news for those who've had a grueling visit and are accompanied by a designated driver).
Make Use of Bolt-Holes
Like many kids with autism, Leo craves small enclosed spaces. There are several throughout the Aquarium. I prefer the two pictured below (exterior of the Wave Tunnel pool, Wild About Otters), because they are small -- Leo is not going to get overwhelmed by jostling kids -- and they're shallow enough that if need be I can easily reach in and yank him out.
Unless you're visiting on a really slow day, you're going to have a long walk between your car and the Aquarium. If you've also had a long drive, and your child is still mastering bathroom skills, you might be anxious about ticketing areas delays impeding a critical pit stop. Please know that the Aquarium thoughtfully provides *outside* bathrooms opposite the Groups & Will Call entrance.
Even on busy days, the Aquarium has many underused areas to take overwhelmed children who need to chill out. We like the area outside the Touch Pools (pictured, see if you can find Leo), but the benches between the Skywalk and the Anchovy Dome entrance to the Jellies Gallery are also rarely used. On slower days, the decks past the Splash Zone slide or opposite the Outer Bay/Jellies Gallery are good places to exhale.
Make It a Learning Opportunity
Leo likes the Aquarium so much that it qualifies as a motivator, and we've incorporated it into his learning. I made him this simple sight-reading grid in Gimp, and then laminated it so we can bring it on our visits.
At home, I've turned the grid into a two-sided sight-reading and matching game. He can match pictures to the picture and word, or just word to word -- but either way he stays engaged, because he's looking at pictures and words from one of his favorite places.
Leo thinks the Aquarium is a magical place. There are few other places he can have so many self-guided positive sensory and engaging experiences. He can commune with the "Nemo" fish in the Splash Zone coral reef tunnel indefinitely, he would dance in the Wave Tunnel forever. Though I am usually an impatient sort, when I see my son having the kind of fun the Aquarium provides, I surrender. I'll stay with him as long as he wants, doing whatever he wants. And I'll keep bringing him back.
Please note that the Aquarium has its own list of tips for visitors, including disability access. For families that need accommodation, and with two weeks' advance notice, the Aquarium will arrange special tours.
TweetSummer has officially started, not because Leelo's last day of school was five days ago, but because at this moment all three kids are swimming in the pool while I watch them over the rim of my laptop and wipe drops of chlorinated water from its screen.
Leelo and I have already started our daily summer excursions, to help exorcise his "this is not my usual routine!" tantrums, and keep his summertime soul intact. Today we did a three-mile trek through the forbidding poison oak groves of otherwise much-loved Edgewood County Park. It was just the two of us as the girls have a few more days in school.
Leelo is often at his best as a 1:1 boy, and was at his truly very best today. I decided to experiment with not letting him have new straws or snacks on the trail (he has been obsessing over both recently), and he not only resigned himself to being denied, but asked for kisses and hugs instead. He was a cheerful, happy, engaged boy for the entire hike. He didn't complain or dawdle, not once.
It was one of the best mornings we've ever had together. Positively blissful. His Superman shirt and forehead curl didn't exactly curb my adoration.
Leelo and I hike a lot. A lot a lot. Sometimes with family, sometimes with friends, and sometimes as a dynamic duo. We both need the exercise, and he needs an outlet for his excess energy. If we put in real mileage, it makes us both more cheerful.
We've spent so many hours trekking through so many Bay Area parks and preserves; it's time to formalize our opinions about the best San Francisco Bay Area trails for kids like Leelo. (Note that every one of these parks has a bathroom in the parking lot or at the trailhead.)
UPDATE MAY 2011: Castle Rock State Park and Samuel P. Taylor State Park are both slated for closure in July 2012 due to state budget cuts.
Families With Small Children: Summer
Little Butano Creek Trail, Butano State Park
Little Butano Creek Trail, in Butano State Park, is an ideal hike for kids with autism or ADHD, and toddlers. It is a 1.5 mile (3 miles return), easily followed trail with plenty for kids to look at (banana slugs, caves, shallow creeks, bridges, boardwalks). It is mostly flat, shady, and surrounded by my favorite kind of Redwood splendor.
Be mindful: There is much to tempt children who love to play with water.
Families With Small Children: Winter
Crystal Springs Cross Country Course, Belmont
Not great for families with members in wheelchairs because at the moment you have to squeeze through the bike barriers to access these trails, but otherwise excellent for winter trekking. We don't go during the summer because it is on an exposed ridge, with not one tree. Lots of gently sloped trails that turn back on themselves, so you can hike as minimally or as much as you want to.
Be mindful: Do not go during a cross country event!
Families Who Like to Clamber
Castle Rock State Park, above Saratoga
Bouldering opportunities and the small enclosed spaces so beloved by my son and his friends abound. It's a popular site for rock climbers, so if you want to avoid people, go early or on a weekday. It's an uphill, half-mile hike to get to the bouldering area.
Be mindful: Keep an eye on your kids, even if you think they have common sense (none of mine do; not really, not yet). There are quite a few drop offs on the backsides of the boulder clusters.
Families With Kids Who Never Run Out of Energy
Sweeney Ridge from Sneath Lane Trailhead, San Bruno
This is a history-rich trail that just keeps going up, up, and up. You can even bring dogs, if you keep them on-leash. The clear-day views are fantastic.
Be mindful: Not for the easily winded.
Families With Kids in Wheelchairs
Sonoma Coast State Beach Vista Trail, near Jenner
A fully-accessible trail with cut-out picnic tables, mostly level trails, fabulous views, and accessible bathrooms. Note that this trail is north of Jenner, and so not a casual outing for most Bay Area residents.
Be mindful: It can be windy, so make sure everyone brings layers.
Families Who Like Tidepools and Sensory Soothing
Bean Hollow/Pebble Beach, Año Nuevo State Park
This one gets two pictures. Pebble Beach at Bean Hollow is one of our all-time favorite places for Leelo to indulge in sensory play. The smooth pebbles that make up this beach feel so good on his hands and feet; he will dig in them indefinitely.
There are tidepools at the north end of the beach, and the very easy trail at the south end of the parking lot leads to even more of them. Great exploring for nimble children accompanied by watchful parents.
Be mindful: The water is cold, the waves unpredictable, and the submerged rocks plentiful. Stay on the upper part of the beach, and do not turn your back on the ocean. Beaches are not even remotely wheelchair-accessible.
Families Whose Children Like to Play in the Water
Samuel P. Taylor State Park, Lagunitas
Lovely place to take small children. On warm days, you can let them splash in the shallower areas of the creek, which is accessible from the outer rim of the plentiful picnic areas/parking lot. Wide, level trails (converted from rails) make for easy hiking, offshoot trails head up hills and into redwood groves. Mostly shady even in summer, and very picturesque.
Be Mindful: Cultivate mutual respect with visible cyclists, as you will be sharing trails with them.
TweetSo, yeah, we love The Double Daring Book for Girls here at Casa Rosenberg. What better way to demonstrate that adoration than with a party centered around one of the book's activities, for instance How to Dye Your Hair With Kool-Aid (p. 48)?
First, we got together our participants slash victims: Merlin, Iz, Sophie, SuperGirl, Danielle, Elise, and Mali (who did not get her hair dyed, standing in for Willow, who did).
Then, we got together the materials: conditioner, vinegar, gloves. And lots of Kool-Aid powder packets.
After a few beats we adults realized that none of these kids had encountered Kool-Aid powder before. We indulged in some mild passive cruelty by watching Danielle mix Kool-Aid powder with water.
Unfortunately she didn't read the directions, and so didn't add sugar, and used a pint of water rather than a half gallon.
It tasted like crap!
Then we all got down to business. I read everyone detailed instructions.
Then everyone's foreheads got nice and vaseline-y to prevent skin staining. Behold Merlin's glistening dome:
Next the kids all put on gloves and started mixing up their colors/flavors (ingredients: a few packets of Kool-Aid powder, some conditioner, and some vinegar).
For the actual application of the dye, everyone was encouraged to go outside.
We wanted the kids to dye each other's hair, but the process was more challenging than we'd anticipated (none of them had dyed hair before). Once we assured them that their honor would remain intact, every child called for parental assistance.
The Kool-Aid was quite vibrant when applied. Here's Iz's grape-flavored head:
One small hiccup: the instructions say to keep the Kool-Aid mixture on your hair and off your scalp, which is common sense if not totally realistic for kids this age. What the instructions didn't say is that you should keep the mixture off your scalp because it really stings and itches! The big girls were able to tough it out, the younger girls tried to be strong but were not pleased and after about twenty minutes asked to have the mixture washed out, NOW!
Even so, our group endeavor was a big success, especially for raging towheads like Merlin. He ended up looking like his head was on fire, which he loved. Supergirl's pink-tinged tresses looked elegant indeed, and while Iz thought her hair would be purple rather than blue colored grape Kool-Aid powder + natural blonde highlights = green locks, she's still happy happy.
Kool-Aid hair dyeing is but one of the incredibly fabulous activities in The Double Daring Book for Girls, which itself is part of Andi Buchanan's and Miriam Peskowitz's Daring Book for Girls series. These books really are the ultimate rainy (or sunny) day inspiration guide for kids, as well as for the parents who love them and would rather see them involved in activites other than watching TV, playing video games, or reading books of questionable merit.
TweetBefore I had children, I would obsess about a theoretical future daughter and the critical information I simply had to impart to her. Epiphanies would strike -- Fair Witness! She'll need to know how to be a fair witness! -- and I'd pull the car over, write my revelation down, and then daydream about compiling a D'Artagnan-Rosenberg infostream manifesto to hand to that girl, once she appeared and when she was ready.
Lucky me, I got my daughter -- and a spare (and a handsome son as well). I never put together that manifesto, but also no longer fret about it: Andi Buchanan and Miriam Peskowitz let me off the hook two years ago, when they published their own compendium of core girl knowledge, The Daring Book for Girls.
Lucky us, they've now published a second collection: The Double Daring Book for Girls.
Do I love their Daring books? Yes I do, passionately, and so does my ten-year-old daughter. She squealed when our copy of The Double Daring Book arrived (the good folks at Houghton-Mifflin sent a complimentary copy), immediately dispatched the whole thing, and dove straight into the activities. Here's her first attempt at Calligraphy (p. 256):
I too read the entire Double Daring Book (though a bit more slowly than my daughter), and was delighted. Look how many pages I dog-eared, so as to remember the best of the best of its activities, biographies, and histories:
Honestly, I want to hand this book to every girl I know, and the boys as well (pink typeface and Girl label be damned, this book is a powder keg of information and ideas for any kid). I am pleased that it contains overlaps with that imagined manifesto of mine, e.g., batik techniques and history (p.99), commonly confused words like imply and infer (p. 141), and the specifics of quality private eye work (p. 177).
What I truly appreciate, and what makes the Daring books transcend the How To label, is the activities' historical and often rebellious context. Why should our kids want to know how to waltz (p. 78)? How about because it was considered scandalous -- the dancing partners touched! And vulgar, forbidden -- it was easy to learn and didn't require a dance master!
Mostly, I am dazzled by the amount of good, hard, enticingly written information amassed in this book. I want kids to know everything in it. I want them to know exactly who Eleanor of Aquitaine was, and how startling her long, accomplished, independent life was compared to most women of her era. I want them to know the fundamentals of rhetoric, how to make a raft, the story of Ada Lovelace, how to join the circus, how to say thank you in scores of languages, how to make snowglobes, how to conduct an orchestra, and how to make rope ladders.
One quibble: The entry on Running a Magazine (p. 204) never mentions the word "zine," or how those handmade magazines helped drive the relatively recent Riot Grrrls feminist movement, which is perplexing, but I suppose in keeping with the book's overall timeless and classic feel. Don't let this one item keep you away.
The Double Daring Book for Girls is buoyed by positivity, and focuses on cultivating competence, independence, willingness to experiment, and open-ended fun. It provides multiple short biographies of women whose lives exemplified these attitudes. These role models and this book are antidotes for heavily-marketed (and in some cases marketing-originated) books like the one pictured below, the title of which I will not type here, which my daughter and her friends crave, and in which junior high-aged girls live lives of insecurity, negativity, and cruelty, while obsessing about label-spangled fashion, unrealistic body images, and social machinations. Ptui.
The Double Daring Book for Girls. I truly believe it has the power to inspire and edify any child with a curious mind, while simultaneously countering media-induced materialism. It is a treasure.
TweetIf you want to know exactly what the effects of the California state budget crises in general, and the failure of Measure E specifically, will be for the individual students and families of , scroll down. I hope this report might make a few more people less apathetic. At the very least it will crack open the non-hardened heart.
The notes below are a compilation of my live twitter feed from last night's Redwood City School District board meeting, the public portion of which lasted from (at which point the board members went into closed session). The school board was asked to make some really hard choices, and few people in the audience would have traded places with them. I for one felt reassured in seeing the smart, alert, knowledgeable, and empathetic board members in action.
Frustrated enough to take action? Good. Here's what my friend Ep had to say:
I'd like to encourage anyone who knows anyone who lives in any of the 44 [California] state districts with a Republican senator or Assembly member to phone, email, or write them with the message that we can't fix the budget crisis on the backs of our children. You can get a list of representatives and districts at: http://www.cagop. org/about/ .Onward:
You can also direct your thoughts to our Governor at:
76. Live-tweeting the Redwood City School District school board meeting: stay tuned!
75. Budget discussion tabled for tonight; Measure E failure & state budget fluctuations means no stable figures available; discussion premature.
74. Passionate plea from single working mom to keep Preschool for All open; otherwise she has no options for working next year.
73. Preschool for All was a state-level cut; district still has Child Development Centers that might help.
72. Jack Hickey is speaking out of both sides of his mouth to an audibly cool & skeptical room. Railing against tenure, which is a state issue.
71. Standing ovation, teacher praise, & flowers for Alisa M. & Shelly M., Measure E Ass-kickers.
70. Since so many 5/19 measures failed, we have to make serious cuts in order to maintain reserve; we have to cut $1M for evry $1B in state cuts
69. Budget presentation (not discussion): 08-09: cuts for ed were $3 million; we used our reserve instead of cutting
68. Budgets are based on previous year's income, but we do have some Federal Stimulus funds, including special ed; projected 08-09 cuts: $10.7M.
67. Discussed cuts for parts of the following: IB program, library aides, custodians, class size reduction, all very complicated.
66. Increasing class size could help reduce expenditures & increase revenue.
65. Anticipate 51 fewer classrooms in 09-10
64. Title II funds can only be used for staff or professional development.
63. Special Ed is a categorical cost, indirect. Now that we have IDEA funding, it will help somewhat (unclear on exact funding/$ stream shifts).
62. Outdoor Ed is another potential area for cuts; not looking good (i.e. NO at this point.)
61. IDEA is very strict about its funds being used for special ed programming and not to address district deficit.
60. Governor has said that there could be more Education cuts between now & June 30th.
59. Board member SM: When you have to cut $6.5 million dollars, there's no good place to cut.
58. Rumor, which budgeteer thinks might have merit: that special ed transportation $ cut by 65 percent.
57. Parcel tax failure means we're losing PE teachers, library aides, middle school teachers, though music program funded for one year more.
56. Post-E cuts might be able to be moderated on a school site, per-student basis.
55. Class size: could we lower class size a bit more to offset cuts? It's complicated, penalties for exceeding class size.
54. General fund is about $65 million, that's where $10M/15 percent cuts will come from. Separate from federal funds/title funds.
53. Questions from audience: teacher at Fair Oaks, RWC native, worried about losing extra-curricular actvities for kids in disadvantaged areas.
52. teacher: Please let Fair Oaks keep title I funds; school & activities are only inspiration/leisure some of his students ever get.
51. Board wants to keep class size reductions from affecting schools like Fair Oaks. Board will do their best to help keep art/after sch prgrms.
50. Higher class size might help us break even at schools like Fair Oaks but budgeting is so raw & unfinished that can't be stated officially.
49. Jack Hickey thinks it would behoove state to remove class size restrictions. Can we rent empty portables? Look at the rosy side (*hooting*). [SR: I would note that Mr. Hickey was respectful, and some of his ideas may have had merit. But he has done so much to undermine funding for our school district -- specifically in his instrumental role in helping to defeat the last two parcel tax efforts -- that few in the room were willing to give him the benefit of the doubt. I'll bet the devil has good manners, too.]
48. We need to focus on not cutting from areas that touch every student - uh, touching in a positive way.'
47. Teacher says we need to do everything we can to keep class sizes reduced; for many dropouts, last succesful moment was in 4th grade.
46. Financial committee wants additional stimulus funds to go to school sites to increase per-student discretionary funding.
45. Argument against reduction: if class sizes are reduced, can't expand them again/hire teachers again if federal money comes thru in fall.
44. Office clerks are critical; can't be cut any more than already have been.
43. Custodian cuts: we may have fewer classrooms but we won't have fewer kids, and kids are messy messy messy.
42. The testimonials of every single parent/teacher/staff member tonight would break your heart, especially re: the role of the middle school counselor
41. GATE coordinator making the case for her pull-out program. Stating that she considers her kids special needs & that its a matter of equity.
40. Pres of GATE parent club: GATE coordinator is 1 staff; certain school has whole staff; do we really want to cut 1 person affecting 250 kids?
39. Teacher at Redwood High: don't cut sex ed! 130 HS students got preg this yr; one specifically b/c missed sex ed & did not know about sperm.!
38. No one has yet demonized special ed; hope we get thru the night this way (testimonials still). Lots of comments re: pgms that DN benefit all
37. Parent: our highest priority should be teachers & materials.
36. Office coordinators: we are already working overtime w/o extra pay to get our work done. Don't know how we'd get our work done w/more cuts.
35. Adelante staff: we need large # of kinder classes to maintain # of kids in upper grades.
34. Parents: please spread the word about the hard work & hard choices that are happening here tonight; we need to fight community apathy!
33. re: Accusations of choosing administration over kids: but we have 27 administrators for over 1,000 RCSD staff.
32. board member SM: we have been thinking long & hard about these cuts; we have kids in the district & they are affected too.
31. Board member: there's not one thing on the cuts list that the board would choose to cut if there was any other option. Not one. All very sad
30. Board & audience want to hear more about cutting outdoor ed, gate pullout, & the international baccalaureate program.
29. Measure E: now that it has failed & budget cuts are real & severe (state too), maybe people will realize that such initiatives are critical.
28. Communications Director position brought in more than $1 million last year by increasing attendance; board has checked & verified figure.
27. board: Please try to stay focused on what's best for all of our students, & not get divisive/combative over special interests/programs.
26. Outdoor ed: may not be able to fund, but if class size rises, then music for minors pgm will have less $, outdoor ed might be saved.
25. District costs per yr for outdoor ed: $60K. Also some scholarships from SMCOE & Tim Griffith Foundation.
24. GATE pullout called special ed equivalent again. In principle I agree, but my GATE kid would be ok w/o prgm; my Special Ed kid would not!
23. Keep in mind that budget is still fluid and not final.
22. Like many cuts, custodial cuts based on formula (square footage, etc.).
21. Need to be mindful of how many custodians we can cut before clean (or not) classrooms becomes a health & safety issue & affects attendance.
20. One board member mentioned that we should find a way to access our very restricted reserves.
19. IB program at Selby Lane, loss for that school, esp. in terms of investment in training, but serves low number of students at a high cost.
18. Board member: wants Outdoor Ed kept b/c serves every single kid in the district at low cost. So many kids have never been out of city!
17. Outdoor ed is back in the please don't cut column!
16. Do you know anyone/any leads for grants for outdoor ed? RCEF will help you follow through!
15. Followup/open meeting with board will be at McKinley auditorium Tuesday 6/16 at 7 PM. (I believe)
14. Summer school $: might be reallocated to school sites. Means cancelling already scheduled summer classes/teachers. Doesn't affect ESY.
13. Wed, Jun 10, 2009 10:23 PM
12. Cutting summer school would affect more than 1,000 kids.
11. Summer school just got axed.
10. Again, NOT ESY.
9. Letter was already sent out letting parents know summer school might be cut. Board absolutey hated to make this cut.
8. Many impassioned pleas to align both RCSD calendars with the high school calendars, especially re: spring break.
7. No one here envies the school board's job at this moment in time.
6. School board approves but can't change school year calendar. At this point no resources 4 calendar fight. Have 2 approve or reject entirety.
5. In future board would like to see school calendars aligned, esp Spring Break. And let's have one calendar FFS!
4. Not everyone voted yes to approve school calendars. But I believe it passed.
3. Teacher meeting hours per year were reduced to 33 from 35 via teacher-sponsored mediation.
2. Anyone who lives in California, please write your state senator to support Simitian's bill to reduce voter approval for $ measures to 55%.
1. All done board meeting!
TweetI don't tweet as many autism articles per day as Ms. Ditz does -- in fact it appears she's given up the Blogosphere for the Twitterverse; come back to us, Liz! -- but I do forward the ones I've read and found worthy of notice. (You can follow me on Twitter or check the Tweetstream on this blog sidebar to see the latest on what's gotten me hopped up and/or thinking harder.)
One popular Twitter autism topic that deserves a more widespread smackdown is the Lupron Protocol, in which Mark & David Geier "treat" autistic children while incidentally charging thousands of dollars more per month than that chemical castration drug actually costs. Financial exploitation aside, experimenting with such a powerful hormone therapy on children who already have developmental issues makes me feel physically ill. Many parents swear that it has helped their children, but I worry -- as I now do with most non-evidence-based autism treatments -- that those parents are being victimized by yet another chapter of the Society for Scamming Credulous Autism Families.
My favorite anti-Lupron Protocol stance so far (i.e., the one you should forward to all of your friends) is not a blog post but a recent article in the Chicago Tribune. In it, Cambridge Autism researcher Simon Baron-Cohen comes out swinging about just how harebrained and morally questionable the Lupron Protocol is. I've included some standout quotes, and emphasized what I consider to be the most important one:
Simon Baron-Cohen, a professor of developmental psychopathology at the University of Cambridge in England and director of the Autism Research Center in Cambridge, said it is irresponsible to treat autistic children with Lupron.
"The idea of using it with vulnerable children with autism, who do not have a life-threatening disease and pose no danger to anyone, without a careful trial to determine the unwanted side effects or indeed any benefits, fills me with horror," he said."
Several parents whose children are on Lupron told the Tribune that it works, saying their children are better-behaved and show cognitive improvement. "It was an obvious, undeniable result," said Julie Duffield of Carpentersville, whose 11-year-old son has autism. "I wish you could see what he was like before."
Experts said such beliefs are common among parents who try alternative autism treatments. It's easy, they say, to attribute normal developmental leaps to whatever treatment is being tried at the time.
"It has become a cottage industry of false hope, and false hope is no gift to parents," said Autism Science Foundation President Alison Singer, whose daughter has autism. "A lot of these therapies have no science behind them. You are using your child as a guinea pig."
TweetWe hosted a get-together with friends four nights ago. We had a dinner party for Badger's 40th birthday three nights ago. Yesterday we had a pool party and then the kids all dyed their hair with KoolAid as part of a blog book shower for the Double Daring Book for Girls.
This weekend, we are hosting the SEPTAR end-of-the-year board potluck. I barely reined in my impulse to host the BlogHer Bay Area meetup that night (Badger's doing it instead) but will attend. The next day we are throwing a going-away party for PV & KV, who are looking beyond San Francisco after more than a decade as some of our favorite weekend plans conspirators.
There are about five thousand school concerts and talent shows and picnics, too. It is all tiring, but fun, plus it is the end of the school year and that's just how schedules expand and explode, especially when you move to a house that can accommodate social events because it's really hard to take your son to them otherwise.
What I have learned so far:
- I am not able to eat Costco take-and-bake pizza more than once per week.
- A single Costco cheesecake will feed approximately 500 people.
- It is a pleasure to entertain people like Rook, Badger, Debbie (Laurie was sick), Zond-7, Signora Blog, Black Dog, JP, Ep, Clyde, our neighbor Jane, Gwendomama, and Jenijen, because they not only get my kids and seem to like them (not easy with recently super-defiant Mali) but they interact with and actively engage all of them. ALL OF THEM. Not just the girls.
- I can throw a dinner party for six adults and a handful of kids with Seymour staying at work late (because I told him I'd try to hire a babysitter but didn't) and no Leelo help quite ably, as long as I'm entertaining people like those listed above, and I keep the menu simple. Should you choose to follow suit, I recommend broiled lacquered salmon, roasted rosemary potatoes, and parboiled salted asparagus. And lots of wine. And, ahem, Costco cheesecake for dessert.
P.S. I has a new niece! Klaya's arrival means we now have five Rosenberg granddaughters, with Leelo as the sole Y holdout.
TweetThere are so many factors that can influence or illustrate how our children with autism are wearing their own skin, including health, toileting, aggressive &/or self-injurious behaviors, sleep patterns, medications, language usage, diet, and school performance.
We've used a Google spreadsheet to track those factors for Leelo for the past two-and-a-half years, with a lot of success.
Tracking helps us back up our anecdotal observations: "Yes, he has had more self-injurious behaviors this week. He developed a runny nose on the second day of the behaviors, so possibly there is sinus involvement. The behaviors disappeared three days later, along with the runny nose."
They help us make better long-view analyses as well. We've been able to establish patterns of seasonal allergies, and also have lots of data to support our concerns about summer regressions.
Supervisor M recently asked me to revise the spreadsheet to make it more data-driven. We're also including his weight at the beginning of the month, as well as a list of the foods he typically eats every day. Here's a sample of the current version, modified as per her suggestions:
I transcribe his teacher's daily notes as well, from the notebook that we use to communicate. Today's notes should give you an idea of why I am so worried about summer and regression. I want my son to be doing this well, staying in this happy space, forever:
"Leelo had a great, great day today. His behavior was great (had no self-injuries). Good attention/focus. He also worked well during time for independent work (worked 90% independent :) ).One thing the teacher didn't write down was a seriously scraped knee. This would normally be a concern, not because of the injury (kids scrape knees; it's what they do) but because he doesn't tolerate band-aids and so his cuts/scrapes tend to get infected. But he not only came home wearing a band-aid, he let me change it without complaint, and kept it on without a single fidget or fiddling for the remainder of the day. Who is this boy? I want to keep him.
"1:1 work with teacher: Still working on the following:
"He also played a table game with me (Colorama) and was able to say "my turn" with minimum prompts.
- Sight words (colors)
- Coins (matching pics and real coins)
- Fine motor tasks (nuts and bolts)
"Also very engaged in the motor room and sensory room.
"Had good behavior during snack time."
TweetYesterday began with a disappointment: The weather report predicted rain, which meant I needed to cancel the planned SEPTAR/families of kids with special needs picnic.
I had really been looking forward to bringing all our kids to a local park and taking it over, would not have entirely minded if the mommies and toddlers that usually dominate decided to leave rather than conceptualize my son and his friends, and had wanted to have a good, worry-minimized outing with all my kids, their friends, and my friends.
Instead, Signora Blog and her family came over for pizza and a rollicking good time, and we all watched the sky not rain. D'oh!
Leo's therapist, V, was here for part of the evening, but left at 7:30. All the kids were still tumbling like puppies in a cardboard box, and Leo jumped right in when SB's son Alfredo encouraged him to come jump on the trampoline. Leo. Playing. With other kids. For a long, long time. Watching them bounce and run made me grateful for just how beautifully Leo is doing right now.
We have documentation, strategies, and next steps for trying to keep that beautifully going.
Seymour and I met with Leo's two program supervisors on Tuesday (Supervisor M runs his program but concentrates on the school angle; she subcontracts Supervisor E to do QA and run the home program; the school district pays for both).
I don't know if it was the caffeine-fueled environment (I love you, Coffee Bar) or just how well Leo is doing at the moment, but we charged through a very full agenda with focus and results. Here are Supervisor M's notes, slightly modified.
Home/home program: Headsprout reading: computer phonics-based, to supplement reading instruction at school.
- Action: Squid and Seymour will do 30 day trial, consider purchasing 1st half of the program
- Action: Squid and Seymour will request teachers to dedicate more time to teaching Leo to read, less time in unstructured recreational activities with no clear goals (indoor play, walks).
All agreed Leo’s body shape not able to combat the forces of gravity; solutions to be tried this summer:
- Dedicating time to teach Leo to better pull up underpants, then pants, using mirror for feedback
- Trying alternative types of pants (e.g. zipper and snap, briefs instead of boxer-briefs)
- Trying a belt
- Keeping pants cuffed so they don’t get pulled down from being too long
Further slowing Leo down when he eats; Supervisor E noticed great improvement, after not seeing Leo for five months; at school, trying to further slow him by having him chew for 5 seconds prior to drinking water; caution being taking to prevent Leo from becoming insistent/dependent on adult counting.
S: I would note that we have encouraged Leo to take a drink of water between bites, and to "take a small bite." He has made this part of his routine, and now asks us to repeat the quoted phrase before beginning to eat. He does continue to take the smaller and alternating bites for the remainder of the meal. Not sure if this is a negative; at the moment he's not capable of making his own meals and we don't leave him unsupervised around food, so an adult will always be there to give him that first prompt.
Night-time training; preliminary data suggests Leo withholding BMs in daytime and going in pullup on his bed; also suspicion that Leo is often dry when he wakes, and then wets pullup once awake if not taken immediately to bathroom; also drinking a lot in pool/tub- primes him for accidents.
- Action: Supervisor M will send out questionnaire this month for Squid & Seymour to complete, to gather more info, identify objectives, make a plan.
- Action: Squid & Seymour will resume the use of food reinforcers for spontaenous & successful BMs during the day.
Behavioral definitions of aggressive behavior and self-injurious behavior: review, revise to make sure we are all describing what we see the same way:
- Aggressive behaviors- have potential to injure others: hitting, pushing, pinching, scratching, kicking, elbow grinding, head-butting others, throwing materials
- Self-injurious behaviors- have potential to injure Leo: slapping self on face and stomach, hitting head against surfaces; hitting hands against surfaces;
- Precursor behavior: stomping
- Action: Supervisor E to review with Therapist V, Supervisor M to work with Squid to incorporate on google spreadsheet (see below), Supervisor M to incorporate clarifications at school.
Changing emphasis on home programming; shift towards quality of life arrangements, and away from precision programming more typical of intensive early intervention; in general, all programming should: increase access to reinforcement, reduce exposure to situations associated with problem behaviors.
Strategies generally include: using visual supports, maintaining consistency and routines while introducing variety and novelty in controlled, manageable ways, making most of periods of reduced behavior problems.
Squid & Seymour gave examples of how Leo is participating more in family and other activities that increase his access to “life reinforcements,” such as trip to the Maker Faire, hiking with family, kicking soccer ball back and forth with Iz and Seymour for about 10 minutes, playing with siblings on trampoline, took off with Squid to go hiking, stay in motel and swim.
Now is a great time to make the most of Leo's current low rates of behavior in terms of teaching replacement behaviors, social interaction skills.
Leo better tolerating Mali when she is crying, screaming; important first step for replacing hitting others with an actual skill/behavior; consider having dedicated weekly time for Leo to do specific activities with each sister.
Seymour: idea of having Mali participate by sharing materials with Leo, especially things he likes (e.g. getting him his straw, swimsuit to go swim, etc).
Critical to all of the above: repetition. Leo learns best with frequent, brief, repeated opportunities to practice. So:
- Action: plan regularly for soccer, or hiking, or other family fun.
Squid & Seymour indicated Leo resistant to doing independent work, possibly due to boredom.
- Action: Supervisor M and Squid will create 6 bins of activities for Leo to do during independent time, possibly including “my busy kits” activities. Bins can be rotated weekly to prevent boredom. About every 2 months, consider adding new materials and toys to keep it interesting, varied, and fun for Leo.
Important strategy for increasing independence, further increasing Leo’s tolerance for new things and changes in routines; Important to expand schedule, and increase Leo’s independent use of schedule, rather than fade it out. Keep in mind- we all use schedules, datebooks, blackberry/iphones to maintain our schedules too.
- Action 1: continue morning routine, switch “new straw” location, so Leo maintains flexibility around this
- Action 2: begin using schedule for evening routine or “witching hour”
- Action 3: next steps to increase independence- Leo should independently travel to schedule, and/or keep modified version of schedule on his person
- Action 4: Leo should set up parts of schedule in which there is some choice
Revising the online google spreadsheet: make more quantitave for more effective analysis, also quicker to complete.
- Action: Supervisor M gave Squid sample of more ideal formatting, Squid will implement.