Before I say anything else about this hot-button topic, let me say this: I am not a doctor. I have no medical degree. And here on the internet, where anyone can claim to be an expert on anything, I want to make sure to clarify my qualifications.

I am, quite simply, an autism mom. This year, my husband and I decided to give Brooks the H1N1 vaccine, and I have a recommendation for all other parents. My recommendation is to make sure that you get reliable information about this vaccine. And all vaccines. From legitimate sources.

Start by reading Amy Wallace’s article, “Fear,” in this month’s Wired Magazine. I admire several aspects of her piece: it presents a litany of medical facts that are very difficult for any reasonable person to dispute; it reminds us that it is not the function of medical science to disprove that vaccines cause autism, but rather to prove that vaccines are safe; it warns us that while pharmaceutical companies have their fair share of corruption, we must not make the error of indicting them in every situation, without just cause. (more…)

It’s that “school search” time of year again and, if you have a special needs child, you’ll want to attend the Jewish Ccommunity Center’s 2009 Special Needs School Fair this week.

Last year I wrote about how helpful this event was for me and my family. That still applies! This year the fair will be held on Thursday, Oct. 29 from 5:30-7:30 p.m.

Do yourself a favor and add it to your calendar.

The start of the school year can be a confusing time for all families,but especially for those who are new to the public school system or who have children with special needs. Enrollment centers opened today for all high school students new to New York City, as did special education enrollment centers for new elementary and middle school students who need a self-contained or collaborative team teaching class.

To help parents navigate the system, and to anticipate problems that might arise, the ARISE coalition,which advocates on behalf of special needs students, has put together a handout for those families. A list of common problems and questions are answered in a Q&A format. (more…)

Charter schools seem unable to shake the perception that they don’t enroll as many students with special needs  - those who are disabled or who need help learning English, for example - as traditional schools.

Yesterday’s Boston Globe spotlights the expansion of charter schools in Massachusetts, but notes the discrepancy in enrollment of special needs students in charter schools as compared to other schools. It reports that  English language learners make up a fifth of the students in the Boston school system, yet they represent only 4% of the students in all but one  charter school. Special education students likewise are underrepresented in Boston charter schools as compared to their traditional counterparts. (more…)

I have a confession to make: I am awkward and gawky when it comes to social networking.

I was “friended” by Facebook members many, many times before I finally succumbed and created my own account. I limited my definition of the verb “tweet” to what birds do, or perhaps the sound a car engine makes when something is amiss. Does it really also refer to text messages of 140 characters or less?

If this new language isn’t daunting enough, there are rules. You can “retweet,” but only under certain conditions. And I’m not even sure why I would want to retweet—I can’t even figure out why I would want to tweet to begin with!

Should I become a fan of a Facebook page? Should I join a Facebook group? What’s the difference between a page and a group? An old grade school friend poked me recently. Without knowing what that means, I poked her back. I still have no idea what it means. (more…)

Since Brooks is officially on summer vacation, I’m feeling the need to switch gears myself. Instead of a personal vignette this week, I’d like to use this post to introduce you to two excellent autism bloggers I’ve come to know over the past year.

Janice Wright is a fellow ASD (autism spectrum disorder) Nest mom in Queens who blogs her son, DuckyBoy (DB). She often writes about his social challenges, which I recognize immediately: “DB wants to play with other kids but also wants to impose an ever-increasing, and advantageous-to-him, series of rules. Like, halfway through a race, he’ll change the finish line…to be whatever he’s closest to.” (more…)

As the end of the school year marked the exit of several top special education officials at the DOE, we wondered when departing Garth Harries, senior coordinator for special education, would issue his recommendations to improve special education services.

Today, Harries met with the Arise Coalition at Advocates for Children’s Midtown offices to share his final report just a few hours before Chancellor Klein announced a  new special education head at Tweed.

“There are recommendations in the document we have not seen in prior reports, and, if implemented well, could make a big difference for kids with disabilities,” said Kim Sweet, AFC’s executive director. In particular, she noted that recommendations called for aligning special education processes, such as admission and school placement, to coincide with general education deadlines. (more…)

In early June, Insideschools and GothamSchools, among other outlets, reported the nomination of Garth Harries as Assistant Superintendent of New Haven, CT, schools. Harries built a tough reputation as a “systems guy,” according to Department of Education spokesperson David Cantor, as portfolio chief at the DOE, when he oversaw the closure of dozens of city schools. Earlier this year, he was given the task of reviewing special education services despite a lack of personal experience in special education.

When the New Haven announcement was made, Harries was expected to serve in New York through the end of the month — that would be today — and to release recommendations of his special education review before he left Tweed.

It’s the end of June. We’ve asked Tweed for Harries’ recommendations, and whether today is his last day at work. So far, no one’s saying. Any wonder that the special education community feels marginalized and overlooked?

The Department of Education announced today the soon-to-be-official appointment of Garth Harries as assistant superintendent of schools in New Haven, CT.

Harries had previously served as CEO of the Portfolio office at the DOE, where he supervised the wholesale closure of dozens of schools and the creation of hundreds of new schools in their wake. In February 2009, he was appointed to review special education services and programs, which was a controversial announcement because Harries did not have any experience with special education. His review is not yet complete, but he told advocates in an email this morning that he was committed to finishing the project before he begins his new job on July 6.

The special education team has lost most of its lead administrators in recent months: Deputy Chancellor for Teaching and Learning Marcia Lyles is leaving the DOE for a Delaware district, and Linda Wernickoff, who has dedicated her career to the special education community, is retiring this year as well.

The exodus leaves only District 75 Superintendent Bonnie Brown to (potentially) spearhead special education reforms. The changes of leadership at this critical juncture make it all too easy to understand why the community of special education parents, educators, children and advocates believe their cause, and their children, take a remote second place at the DOE table.

As yet, the DOE has not announced who (if anyone) will replace Harries.

Last year, the Department of Education’s new middle school choice and matching process left too many special needs children who were in CTT (collaborative team teaching) classes out in the cold, particularly in “choice” districts where there aren’t zoned schools and students take tests or complete auditions and interviews to secure middle-school seats.

This year, the DOE said that they would send special education students middle school notification at the same time as their general education peers. According to a note in the Principals’ Weekly email, however, the letters for special education students were delayed again. They should have been sent by the end of this week, according to the email.

Patricia Connelly, a member of both the Citywide Council on Special Education and the Parent Commission on School Governance and Mayoral Control, is asking parents of CTT kids in “choice” districts to contact her with concerns about their child’s placement. Information shared with her will be held “in the strictest confidence,” Connelly notes. She can be reached at patricia.connelly@gmail.com.

This is a picture of me, Brooks, and his kindergarten teacher. It was taken last August, when she came to my home to meet Brooks and get a sense of how she could help him overcome his challenges and ignite his love of learning. She sketched out a road map that day, one that would enable her to work alongside my son’s speech therapists, occupational therapists, physical therapists, and counselors to make him into a student. Like all good leaders, she would have to build an environment where team members could easily communicate in order to make consistent and lasting contributions to my son’s school career.

She happens to be an extraordinary teacher, but that doesn’t make her stand out in the ASD (autism spectrum disorder) Nest program. Every teacher here is extraordinary. Because they are carefully hired. Because they are extensively trained. In autism. In the sensory issues of autism, so that they can design appropriate lesson plans to strengthen my son’s emerging handwriting skills. In the anxiety issues of autism, so that they can design appropriate interventions when he starts sobbing because he misspelled a word. In the social issues of autism, so that they can create opportunities for him to play with his peers and help him find joy within those interactions.

Unfortunately, the DOE recently announced a “hiring freeze” that limits principals to an internal pool of available teachers, none of whom apparently have the early childhood special education training and experience necessary to make them viable candidates for ASD Nest.

Already, the program had no new hires to send to their one-of-a-kind Hunter training program that began yesterday, and no one has an answer about the fate of the two new classes at my son’s school (PS 178), not to mention all the other ASD Nest schools throughout the City. Who will teach these new classes? (more…)

It is extraordinary to me how much my family has in common with Rupert Issacson’s, the man who wrote a book called The Horse Boy about healing his autistic son, Rowan, by taking him to Mongolia to ride horses and visit shamans.

On the surface, our sons are worlds apart: Brooks has never traveled half way around the world, he was toilet-trained well before he was five, and he never had the relentless tantrums described in such painful detail in the book. But the raw sting of watching your child tailspin into sheer desperation was all too familiar:  “A fist closed about my heart…crushing it as if a kid were picking up a baby chick too roughly and squeezing the life from it.”

Familiar also is the fervent wish that simple games could lose their obsessive quality so that Rowan’s mom might be able to enjoy singing The Carpenters’ “Sing, sing a song…” once or twice with her son and then stop, without the ever-present “Sing! More sing!” which forces her to continue on and on, over and over again, for what seems like forever.

(more…)

When it comes to special education, it’s not hard to find fault with the NYC public school system. But my issue this week is the City’s private schools.

Last spring, my husband and I waited anxiously for callbacks from the “Ivy League” special education schools that we fell in love with during our September tours, where we saw small classes of kindergarteners with autism sweetly and successfully reading books, doing math and maneuvering their little bodies into yoga poses like cats and candles and tables. We checked our answering machine hourly, hoping that Brooks would get one of their three or four open spots — and that we would somehow figure out how to pay the tuition.

This spring, I’ve been watching families from Brooks’s old preschool go through the same process. I’m glad to report that those who’ve secured private school placements do seem to be having an easier time with DOE funding than our contemporaries did last year (simply put, if the DOE admits that they have no appropriate public education for your child, they need to bear part or all of the cost of an alternative private setting). Of course, overall, getting that funding is still a tremendously difficult and stressful endeavor. And one particular practice within private schools greatly disturbs me.

What I’m referring to is the ubiquitous non-refundable deposit to hold the spot, which is often at least $5,000. Did I mention that it’s non-refundable? In our experience, admissions directors were not completely unreasonable — you could often negotiate stretching the deadline date, but there was no negotiating the eventual delivery of that jaw-droppingly large check. (more…)

Last night, I was one of 50 parents of students with special needs at a meeting called by Garth Harries, the new Senior Coordinator for Special Education at the Department of Education. Held at PS 199 in Manhattan, the meeting was billed as an opportunity “to solicit informed and thoughtful input from parents as it relates to Special Education.”

The concerns voiced were not new: some untrained (and thus insensitive) paraprofessionals, untrained (and thus ineffective) general-ed teachers, CTT classes that are too large, under-served IEPs (Individualized Educational Plans), and schools misrepresenting parents’ rights, just to name a few. But there were also some bright spots: parents from the ASD (Autism Spectrum Disorder) Nest program (myself included) sung its praises and encouraged Harries to nurture and grow it, and a mom with a vision-challenged child reported her family’s very positive experience.

As was the case the last time I heard Mr. Harries speak, he began with a disclaimer: Although he has no background in special education, he is working very closely with those who do. No matter how many times he says this, it neither diminishes his insufficient qualifications nor inspires my confidence. He is the Senior Coordinator for Special Education, and he has no background in special education. His previous job at the DOE involved closing dozens of schools. The lack of logic here simply baffles me.

Even the way this meeting was arranged was unconventional: very short notice, with no public announcement, and the DOE reserved the right to handpick the participants. Regardless, many parents expressed their hopes that this was only the beginning of an open dialogue and wanted to know how and when and where it would continue.

To his credit, Mr. Harries did talk about the Arise Coalition and its recently published recommendations, and he also talked about the potential for good inclusion programs to help the general-ed population as much as the special-needs population. But for now, it is all just talk. Until Mr. Harries makes a systemic change that is directly responsible for helping an actual child, I remain skeptical.

This past gray and wet Sunday, our small family ventured out under our big umbrellas to try out a new local brunch place.

Finally, we are past the point of having to go to McDonald’s, which Brooks clearly prefers. These days, our preferences carry some weight, because our son is no longer the lost little boy who needs us to spend every waking moment figuring out how to help him.

For the first time ever, we don’t have to explain his challenges because they are no longer very apparent. We don’t have to explain that he’s smart; anyone who meets Brooks sees it for themselves. The kid that we used to have to imagine in our minds is finally emerging, and we keep pinching ourselves to make sure we’re not dreaming.

At school this week, for the first time, he ate in the cafeteria and liked it so much he didn’t want to leave. At home, more discoveries: Brooks and a friend had a full back-and-forth conversation — one that included asking for, and considering, the other child’s opinion.

He sold school raffle tickets at my office, he tells stories that last longer than our attention span, and the other day I caught him overflowing with joy when he watched Nemo and his dad reunite and swim to each other as fast as they could. Brooks gets it. And I can’t begin to describe how good it feels to watch him get it.

Brunch was nice. Brooks ordered off the kids’ menu, ate his scrambled eggs and toast, and with his good behavior, earned his chocolate ice cream for dessert. My husband and I sipped our coffees and watched the falling rain. Instead of going shopping, we decided to go home and continue our lazy day. Brooks was fine with the last-minute change of plans and said: “Look at it outside: it’s disgusting! Let’s go home.”

The forecast is rain all week long. I couldn’t care less.

A new report released today says that for the 160,000 students with special needs, educational options and services have not improved much during the past seven years of Mayor Bloomberg and Chancellor Klein’s education reforms. Students in self-contained special education settings - classes comprised only of students with special needs - fare the worst, with only a 5 percent high-school graduation rate.  

 The report was released by the ARISE Coalition, an association of 33 different organizations and individuals devoted to New York’s children with special needs.  ARISE was founded by Advocates for Children of New York, Insideschools’ parent organization.

Since the Department of Education is considering reorganizing the special education bureaucracy for the third time since Mayor Bloomberg took control of the system, the specific recommendations for reform included in the report are especially timely. But also of great weigth are the stories along the margins - beside the statistics, recommendations, graphs and charts - of specific families who have struggled to gain the best education for their children. Read the full report - and the poignant stories - here.

“Brooks, I said it’s bedtime! Now go into your room right this second, do your yoga, take deep breaths and relax so that you can fall asleep! I said right now!”

Even as I said it, I knew it was too loud, too angry, and somewhat absurd, but I was racing down frustration street, a one-way thoroughfare with too few stop signs.

We’ve been working on Brooks’s ability to sleep independently since, well, since always — he has been scampering into our “big bed” pretty much ever since he could scamper. And even before that, before he was diagnosed, when we tried to “Ferberize” him in his crib, he brought us to our knees. Brooks apparently hadn’t read the part of the book that said if you let him cry it out, by the third or fourth night he’d learn to go to sleep by himself. When he was still screaming/crying after two hours on night number seven, we came to our senses and threw away the book.

Sleep issues have rarely topped our priority list. When Brooks was very young and coping with 25 to 30 hours of therapy a week, we were only too happy to provide a little extra support in the form of an overnight snuggle. And as he got older, bedtime stayed on the back burner because there was always something more important: he needed to learn how to talk and how to tolerate loud sounds and how to be in the same room with other kids. But we couldn’t completely ignore this nighttime problem because a third smaller person in bed (who is, in fact, getting bigger) was not a sustainable environment for a sustainable marriage. At some point, Brooks had to learn to sleep alone. (more…)

As I watched Jenny McCarthy on Larry King Live last Friday, I found myself talking back to the TV, which rather quickly escalated into yelling at the TV, and then yelling at my husband. This was admittedly an unfair progression, but when I hear things that I know are untrue, or involve huge omissions, I get a little upset.

Ms. McCarthy, whose son developed seizures at two and a half, started out by saying: “When I first had Evan diagnosed with autism, there wasn’t much of anything. I had to find out about biomedical treatment on the Internet after I typed in autism on Google and three years later, there’s three books and many thousands of children getting better because of biomedical treatment.” I can only assume that she was referring to her three books, conveniently omitting the many biomedical intervention books that I read well before she came onto the scene.

As per her website, “the ultimate goal of biomedical treatment is to remove environmental toxins from your child’s body and repair the damage that has been done.” Although our family dabbled in this approach: I blogged about our experience with the GFCF (gluten-free casein-free) diet and we tried various supplements through the years, we were never convinced that they played a major role in Brooks’s progress, and we ruled out many of them (like vitamin B shots and chelation) simply because we believed they were too untested and potentially harmful. I need to stop here and add that I know families who believe in these types of treatments fervently, and please understand that I am criticizing neither their decisions nor their beliefs — I am only stating that a biomedical approach was not right for my family. (more…)

A friend of mine recently told me that she sent her son into swimming lessons without any mention to the teacher about his developmental delays. She is my new hero.

She is brave and brazen, and a little bit reckless, but in a good way. After all, what’s the worst thing that could happen? She could always mention it later if the need arises, but why not let her son deal with the world, including new swimming teachers, the way it is, without any “special” padding. If her son doesn’t respond to an instruction the first time, the teacher will likely repeat it, and the two of them can forge their relationship just like any other teacher and student, in or out of the pool.

For better or worse, I am generally a discloser. At first, it was out of necessity; Brooks’s severe language delays and anxiety in new situations prompted me to use every opportunity to smooth out his very rocky road. Not saying anything in those days would have been tantamount to child abuse.

These days, I do it partly out of habit, and partly because Brooks’s self-confidence is just beginning to emerge, and deep down, I know he’s the same extremely sensitive boy he’s always been. I want to give folks a heads-up that he might not hear an instruction the first time, because a new teacher might misinterpret his distractibility for misbehavior, and I know Brooks would sense this new adult’s disappointment in him. A dent in his self-esteem, even a small one, seems to me an unfair way to honor how hard he’s worked and how far he’s come.

Of course, the other side of that coin is that the world is out there, the world in which my husband and I want Brooks to fully participate, and this protective shield we build around him with our disclosures is not giving him the opportunity to begin to navigate it on his own.

Brooks loves the water and is overdue for swimming lessons. As exhilarated as I am by my adventurous special-ed parent friend and the chances she takes, my overly cautious nature tells me it’s too soon to dive in.

At some point, I can see myself standing by and watching Brooks sink or swim; that’s part of my job as a parent and has nothing to do with special needs. Maybe next week, next month, or next year. Just not yet.

Maybe Brooks is just going through a particularly promising phase, or maybe I’m seeing him through my Mom’s rose-colored glasses, or maybe, just maybe, my little boy with autism is no longer so definitively a little boy with autism. Hmm.

When my Mom, who’s visiting from Canada, wakes up in the morning, Brooks’s face lights up: “Look, Mommy — Baba’s up! Hi, Baba!” (Baba: Grandma.) No longer any need to prompt him for social greetings, at least not when my Mom’s around. He doesn’t whisper his good morning shyly, or spit it out robotically; his cadences are natural and sound like music to me.

Even though Baba has a ton of stamina, Brooks is able to exhaust her with the kind of play that was out of his reach during her previous visit, last March. Directing her to read aloud to his stuffed animal friends and then subjecting her to their questions: “What was your favorite part, Bear?” and then following up with “Bear, you need to talk louder — we couldn’t hear you.” Inviting her to take a pretend bus ride with him to the North Pole. Getting her to help him feed the pretend baby sweet potatoes. All spontaneous. All appropriate. All ratcheted up a notch or two higher than what we’re used to.

At Brooks’s most recent parent-teacher conference, my husband and I learn that Brooks is on track to achieve the goals his Intensive K team defined back in September. We also learn that his cognitive skills are at or above age level. Really? We are unprepared for this. We know how to discuss why he is scoring below his age level; we know how to talk about how the strategies in place are not getting the job done so we need to come up with new ones, but frankly, we’re a little lost in this meeting. There’s no “bad” part at the end. We’ve clenched our stomach muscles to absorb the blow, but there is no blow. Do we exhale now?

Yes, for the moment, we exhale. Without forgetting that Brooks still has a long way to go. Without forgetting that he is still very awkward when it comes to greetings that involve hugs and kisses, or that he has never once favored playing with a child when an adult is available. Without forgetting that bathroom independence is tough because buttons and zippers are hard and he often gets distracted by the running water, and he still doesn’t get the social part of why he has to pull up his pants before he leaves the bathroom. Without forgetting for a heartbeat that his imaginative play we celebrate would look awfully juvenile for a typically developing 6-year-old.

Without forgetting all those things (because we don’t have that luxury, because we have to stay on-task), we can also take a moment to celebrate how far Brooks has come, and how hard he’s worked, and how lucky we are.

Things are looking up — the glass is three-quarters full. Cheers!

Let’s take autism out of the summer camp equation for the moment. Let’s assume that my husband and I want Brooks to enjoy spending summers at camp (we do), and then let’s assume that we have a 4 or 5-figure sum to spare for the months of July and August (we don’t). Hmmm. Trouble already.

I suppose that’s what we get for living in Manhattan, where our family falls well below the average income level (translation: we don’t have a million dollars). The upside of this privileged borough: Brooks has benefited from consistently excellent therapists and autism interventions: after all, New York City has the best of the best. But it also has the worst of the worst, and I guess summer camp tuition falls into this category.

This is a new problem for us. Until starting kindergarten this year, Brooks was in a (free) year-round preschool. Three weeks off in late August meant a visit to his Canadian cousins. Of course, in those toddler days, 2 or 3 months without therapy was risky; major regressions were practically guaranteed. Now that Brooks is older, we’re not as concerned. Yes, he’ll need therapy in some shape or form, but we can afford to be a little more laid back (unless we’re in denial and kidding ourselves, which is always a possibility).

Because he’s in an Intensive K school, Brooks will qualify for the ASD Nest summer program — if it happens, but that won’t be confirmed until May or June. And it won’t be integrated. We’re not sure if that’s a good thing or not. Should Brooks be in an integrated environment? Or even a mainstream one?

Truth is, Brooks isn’t ready yet for a mainstream setting, and neither are we (we’d need more time to process that kind of leap). An integrated setting would probably be best, since we’ve always placed a major emphasis of exposing Brooks to typically-developing kids, and it’s worked pretty well for us so far. So I should be diligently looking for an integrated environment in our folder of special-ed summer camp brochures but I’m not. Finding any appropriate setting for Brooks is hard, and the prospect of putting that kind of time and energy into a 2-month gig is not at all appealing.

So for better or worse, I’m starting to think in a different direction: maybe Brooks and I will do some volunteer work together this summer. We might make a good team helping kids practice their reading skills, or learn how to use computers, or make art—all areas where Brooks excels. Or maybe we could even help prepare food at a soup kitchen, provided Brooks agrees to abandon his recent lemonade recipe.

Am I being a completely crazy, a little crazy, or does this make a modicum of sense?

If anyone has any other good summertime ideas (inside or outside the box), please post them as comments!

If you don’t have a child with autism, you may never have heard the term: “PDD.” It stands for Pervasive Developmental Disorder and it’s a common diagnosis for young children on the autism spectrum. It is more vague than autism, and even though it’s been explained to me many times, I have to admit that I don’t really get the distinction between the two. So there’s a lot to dislike about “PDD” — it’s not in the common lexicon, it’s confusing, and when you do finally get a handle on what it is, no one in the real world knows what you’re talking about.

But I like the word “pervasive” a lot, because no matter which diagnosis your child has, this apt term tells it like it is: This diagnosis is going to affect everything in your child’s life. Not just speech, not just social skills, not just learning, not just fine and gross motor skills; everything. Including food.

Brooks’s eating challenges started at birth. We know now that the muscles in his mouth, the same ones that later failed him when he tried to speak, were too weak to breast feed. At the time we simply settled into bottle-feeding and chalked it up to one of those situations where “plan b” was not so bad. His next major detour off the “typical” food road was when he turned one and we switched from formula to milk, which prompted him to go on a liquid strike. Even our efforts to return to formula were fruitless; we had, it seemed, ruined his experience of drinking beyond repair, and that was that. So for about a year, Brooks didn’t drink. Fortunately, he never failed to thrive: he was still eating a lot of water-based baby food.

A large part of his initial therapy was re-introducing liquids, and slowly, he did start to drink again. His eating habits were picky and compulsive — his “safe” foods were few, and favored for every meal if we let him (and we often had little choice). Then he was done with them, and chose two or three new ones. During this time, we put Brooks on the GFCF (gluten-free casein-free) diet for two major reasons: it was very healthy, and there were anecdotes that it would help his autism, if not cure it. Perhaps that’s the case for a some kids (although none I know), but after a year and a half, Brooks’s major delays persisted. We opted to expand his palate to any food he would try, regardless of its dietary content.

Mealtimes with toddlers are often fraught, but with Brooks, they were always challenging. When he was very young, I had to sing to get him to eat anything. Then it was my turn to go on strike, forcing him into non-musical meals. Our “positive reinforcement” model was never on display as much as when Brooks actually tried a new food — we made up songs for him, we played instruments, we danced (and we are NOT dancers!).

Bit by bit (or, rather, bite by bite), Brooks has expanded his food repertoire into typical childhood favorites: mac and cheese, hot dogs, hamburgers, spaghetti. He eats more with his hands than we’d like him to, he has trouble chewing pizza crust, and I would still sell a major organ to see him eat an actual vegetable. But I no longer have to bring food with me all the time or worry that he won’t find something to eat at a play date, restaurant, or even a birthday party.

Not only is Brooks eating more like an actual person these days (which my husband and I feared would never happen), he’s also talking about food more than ever: check out his inspired recipe for lemonade:

This month, Brooks turned 6 and my mom turned 75.

Although the birthday parties were obviously very different (no hula-hoop hip-hop for Mom), both occasions reminded me how fortunate I am when it comes to family and friends.

For Brooks’s party, our game plan was as it always is: challenge him and hope that he rises to the occasion. And rise he did. How did he handle his anxiety? There was none to handle! The first notes of “Happy Birthday” triggered a smile so proud that it beamed across the room; this from the same little boy who wept uncontrollably when that song started at any birthday party, only a few short years ago. Eagerly tearing open the wrapping paper on his gifts all by himself, and exclaiming: “Wow, look at this. This is cool!” from the same little boy who used to walk away from presents, an apparent extreme indifference coupled with too little dexterity in his fingers to open them. Freeze-dancing with his friends, leading the conga line; making it look effortless and with an abundance of joy, all the while surrounded by people who “get it”: close family and longtime friends, newer “parent” friends of Brooks’s peers, and therapists who have evolved into friends. Everyone present knew how significant it is that Brooks blew out his own candles for the first time ever. Everyone had made their own unique efforts to have a meaningful relationship with him, and they were rewarded with a birthday boy who was not hiding away in his bedroom, but rather reveling in the presence of his faithful and true friends.

For my Mom’s party, I escaped solo up to Winnipeg, Canada, my hometown. I know it sounds odd to say that I basked in the warmth of my family and friends when the temps had a minus sign in front of them, but that’s what it felt like. Because my niece Lindsay wrote and performed a beautiful song for my mom, who is her constant musical inspiration. And because my ten-year-old niece, Kyra, accompanied Lindsay on the violin. And because my cousin Miriam sang a laugh-out-loud parody song that my sister Robbi wrote.

I am so proud to be part of a family where these kinds of gifts trump the ones that come wrapped in ribbons. Not only proud, but grateful. Because when Brooks was first diagnosed, no one had to readjust their priorities to what really mattered. My phone calls, crying and struggling to get out actual words, were met with efforts at comfort, which meant more crying, this time on their end. They were in this thing, too, a country away or not, and they took ownership and made significant contributions in finding the best ways to help Brooks.

I am doubly grateful for the loyalty of my friends and family in both countries, because I haven’t been a very good friend/sister/daughter in the years since Brooks was diagnosed. I feel like I have been taken hostage by everything we needed to do for our son. Sadly, the little things like phone calls to check in or spontaneous get-togethers have been pushed to the bottom of my list. Truth is, they are not little things at all; they are the building blocks of maintaining relationships, and they have enormous meaning.

So to all of you who have put up with me, thank you. I am so moved by your unconditional support. Maybe now that Brooks is 6 and doing so well, we’ve turned a corner. And Laurzie, now that you’re 51, I promise we’ll actually celebrate your 50th before Brooks turns 7.

“Hi. My name is Marni, and I am addicted to autism parent support groups.”

Is there a 12-step-program out there for me? And if so, do I have to start attending another series of monthly meetings to break my addiction to my current monthly meetings?

It all started when Brooks first got diagnosed. My Early Intervention Service Coordinator suggested that my husband and I attend a support group, which we agreed was a good idea, but it took us a little time to actually get there. First of all, we were in the midst of scheduling 20 hours a week of therapy for our 18-month-old, which seemed no less complicated or foreign to us than launching a space shuttle. Secondly, and more to the point, we didn’t want to go. Our rationale was that Brooks would catch up to his peers within a few months, we didn’t need a support group — “nose to the grindstone” was our modus operandi.

When it became abundantly clear that we could benefit from the kind of help that only others in our situation could offer, and that dealing with this pesky autism problem meant more than a few months, we finally showed up to a meeting. And we’ve been showing up ever since. We pass around pictures of our kids, we talk, we sometimes cry (at least, I sometimes cry — although not so much anymore). We share information: this worked, that didn’t, try this school, offer this supplement, read this book…the subtext of each question or comment always: “Tell me my child will be okay.” And all the while, a gentle and caring moderator keeps us from disintegrating into despair and chaos, turning our deepest fears into opportunities to help one another.

At this point, you might be wondering what the problem is. What’s the downside of all this support? The problem is that these groups multiply. Exponentially. In addition to the original one, there are two groups from Brooks’s old school, one from his new school, one from the Y — and the ones I learn about every few months that I force myself not to sign up for.

Over the holidays, I finally came to the realization that my overall well-being might be better served if I stayed home occasionally and cooked dinner for my family (don’t laugh, people who know me — I sometimes do that!) instead of going to yet another meeting to talk about how I wish I had more time to stay home and cook dinner for my family.

So it is with conflicting emotions that I am about to stop regularly attending that original support group, and most of the others. In a positive sense, I feel like I’ve graduated: I no longer feel the desperate need for the safety net of a steady Brooks-related place and time to fall apart or celebrate, whatever the case might be. On the other hand, I feel compelled to stay connected with at least one group, and I’ve thankfully been offered welcome mats to stop back in to any group I’ve left should the need arise, or just to check in.

I’m sad, too, because I know that it will be easy to lose touch with a lot of people I’ve come to know and respect, but I’m hopeful that I can find some way to maintain these relationships. I’m proud to have been in the trenches with these parents: they have helped my family time and time again, and I hope that the help has gone both ways.

So now, Brooks can stop asking: “Mommy, are you going to a meeting?” and start asking “Mommy, what are you making for dinner?” Now my problem is (and those of you who know me and my lack of kitchen skills will know this already), how to learn to expand my dinner repertoire beyond hot dogs. Any “Parents Who Can’t Cook” support groups out there?

About three years ago, we took a rare family day in Brooks’s favorite Central Park playground, the one with the big stone slide. It was one of the first beautiful summer days, and Brooks giggled and cooed all the way down his umpteenth turn on the slide. Giggling and cooing was his primary means of communication back then, because Brooks, at almost 3 and a half, still had practically no language.

Since he wasn’t yet toilet-trained, I took him aside for a diaper change. As he was standing there naked in a perfect summer breeze, he looked at me, right into my eyes, and said very slowly and clearly: “ha - ppy.”

“What?” My response was all reflex: My son was not able to use the muscles in his mouth to produce words. He did not have enough social awareness to initiate a spontaneous conversation. This was obviously a random, meaningless verbalization. Except that Brooks said it again: “ha - ppy.”

In that instant, I tried to wrap my head and heart around what, possibly, was happening here. My son, who had been primarily silent for the first three years of his life, was perhaps starting to talk.

I thought about the hundreds of mornings I had spent with him watching specialized videos, pausing them until he verbalized the first sound of the object on the screen. I thought about the other thousands of hours therapists and teachers had spent with him, gently pushing and prompting and cajoling him into speech. We were terrified that he might not be able to do it. No matter how many compassionate, caring, smart professionals tell you point blank that he will develop speech, you can’t really permit yourself to believe it. Because you’ve never heard him talk. Because so many of the notes in the therapists’ communication books describe a mostly silent child who has never, not once, initiated communication with language.

“Do you mean you’re feeling happy?” I asked him, my heart overflowing with hope. Brooks’s eyes lit up, and he gave me a big hug.

Over the next weeks and months, this tiny, sublime moment opened up a floodgate of words, many in my son’s professional team responded as emotionally as I did. We shared our tears of relief that the little boy had managed to figure it out, and in those tears, we forged a bond. The unique richness of our relationships with these teachers/friends/heroes is the yin and yang of autism: if we had never experienced the challenge, we would never have experienced the unprecedented gratitude we feel for those who pulled Brooks through to the other side. Not to mention the unprecedented joy we feel on some level every time he speaks. The everyday stuff: “Daddy, I want to go on the big bed and play monster and then the wompers” or “Can I have hot dogs for dinner but just the hot dogs without the bun?” We can hardly even bring ourselves to correct him when he says, in public: “I need to make a poop.” Subconsciously and in muted tones, we simply can’t bring ourselves to stop celebrating.

But I have to admit that as time goes on, we celebrate less. I suppose it’s human nature to take things for granted, to forget these hard-fought gains. Truthfully, I hardly think about the frighteningly-silent child Brooks used to be. That’s why I write down these stories. Because it’s too easy to forget. And because I need to remember.

Last night in Queens, parents packed into an overfull auditorium to have the chance to address Garth Harries, who has been charged with reviewing DOE’s provision of special education services citywide — despite his acknowledged lack of training as an educator or special educator. Harries, who appeared with DOE’s Marcia Lyles and District 75 superintendent Bonnie Brown, addressed the group, seeking to “quell rumors” that he would dismantle or substantially reorganize services for children with special needs. His work, Bonnie explained, was on a “macro level” — and Harries is expected to lean heavily on DOE veterans Brown and Linda Wernikoff for specific program information.

Parents and school leaders consistently stated strong concerns about Harries’ oversight of special education programs. Many expressed deep satisfaction with the services their children now receive; one pleaded, “please don’t take this away from us,” and a principal rallied the crowd with a challenge to Harries’ qualifications: “Would you go to a general practitioner to perform open-heart surgery?” Another parent, holding a portrait of her child, implored, “You need to take off your suit and tie and come to our school,” to get to know the kids and the teachers that work so hard to serve them. “Keep this photo on your desk,” she said, “and make decisions with your heart, not your pocketbook.”

Repeatedly, parents expressed their concerns that the services their children receive will be taken away. They expressed their real frustration with Harries’ steep learning curve: “I have a million things to tell you, because you know nothing.” For the most part, Harries and his colleagues listened respectfully, responding little. When one parent, responding to Harries’ statement that he did not intend to dismantle programs, asked “can you assure us that the services we have won’t change?” the DOE representatives chose not to comment.

Early on, when Brooks was first diagnosed, I spent most Saturday afternoons walking around New York City listening to my iPod and crying. Quite simply, it hurt too much that Brooks’s brain didn’t work properly. Since there wasn’t a lot of opportunity to cry while I was in the throes of saving his life, which was 99% of the time, walking was my outlet. And, of course, nobody noticed, which is one of the reasons I love this city.

It was during one of my tearful outings that I happened upon A Slant of Sun on a bookstore shelf. I devoured it then, and I find myself re-reading passages to this day, sometimes just to revisit an old friend, and other times, to inform Brooks-related decisions. Although it was written over 10 years ago, it is timeless, which is all the more incredible because autism books generally date quickly. But this is less a “how-to” book about what families should do after a diagnosis, and more a thoughtful, insightful and passionate look at what happens to these families. As author Beth Kephart describes her son Jeremy’s PDD (Pervasive Developmental Disorder - Not Otherwise Specified) diagnosis, she explores the definition of normal and struggles to help her son without destroying his essence.

Kephart’s deep and enduring love for her son is palpable on every page. She admits that the only response she can bring herself to utter to people who tell her that her son is handsome is: “I know.” She is “never modest about [her] son. There’s no disputing how beautiful he is.”

Every obsessive behavior or speech abnormality or food intolerance is not looked upon as an undesirable trait to be cut out of him, but rather studied as a puzzle piece of his heart and soul. Why is this little person doing this? No clue is too small to investigate, and there are no limits on time and energy spent in this pursuit.

Her aversion to “fixing” her son is familiar to all autism parents, and since Jeremy’s huge imagination often traversed into obsessions, she struggled mightily with how to reign it in without damaging it, and even questioned whether she should reign it in at all. She describes a playground scene on a bitter-cold afternoon where Jeremy has dreamed up a scenario where a plane with a war hero will soon fly over their heads. His anticipation is completely joyful and full of rich, colorful details, and she struggles with her response. She knows what she “should” do therapeutically: tell him that there is no plane coming and that it’s cold and they need to go home. But she can’t bring herself to do it: she knows somewhere deep inside that if she tells him she doesn’t believe the plane is coming, he might be disappointed in her and see “only a mother, nearly middle-aged, who has lost her capacity, her vision.”

Although she doesn’t deny her Herculean efforts to help her son, in the end she credits him for lighting the way. (Similarly, whenever I’m complimented on how far Brooks has come, I immediately respond that he did all the heavy lifting.) And though most of her decisions are based on instinct, she openly and honestly questions each one of them, and admits that she often doesn’t really know what she’s doing.

In the current melee of autism books about overnight cures and miracle recoveries, A Slant of Sun is a blast of welcome fresh air: a beautifully-written memoir about the painstakingly slow, all-encompassing and ever-hopeful reality that takes over your life when your child gets diagnosed.

Although I don’t think that Kephart has written about this subject for years, she currently has her own blog (which I find myself visiting often). As for her son, Jeremy? He’s in college now: she just blogged about him the other day.

Author’s Note: If you’re planning to read “A Slant of Sun,” please support Insideschools.org with your a portion of your purchase at ShopForCharityNow.com.

First and foremost, thank you for saving my son’s life. I am not being overly dramatic here. My husband and I owe you a debt of gratitude that we will never be able to repay.

Brooks is in the self-contained Intensive Kindergarten program at PS 178 which feeds into the ASD (Autism Spectrum Disorder) Nest program. These pilot programs gave my son the opportunity to start school with compassionate teachers, therapists and principals. They not only understand his comprehensive IEP (Individualized Educational Plan) backwards, forwards and inside out, they collaborate daily to ensure that that IEP works and keeps on working. That is why my son is making steady progress. No, let me rephrase that: that is why my son is thriving.

So with a lump in my throat and great hesitation, I need to ask for more.

I have been in this situation before, when Brooks was 3 years old and still had almost no language. By that age, most children receive speech therapy 2 or 3 days a week, but we knew that Brooks needed to continue his 5-days-a-week regimen. We were told by some that he wouldn’t get those kinds of hours, but my husband and I (and many of Brooks’s therapists) knew he needed that level of support.

When it came time for our assessment, we had piles of documentation — and a posse of articulate, persuasive therapists. Luck smiled: we were assigned an amazing administrator, who understood Brooks’s need for intensive speech — and who looked me in the eye and promised: “He will talk.” At that meeting, I broke down, overwhelmed by gratitude. We knew that Early Intervention had saved Brooks, and we felt selfish that we had to say: “Okay, we know you saved his life, and thanks for doing that, but now we need this and this and this.”

And here I am, again: We know that your department saved Brooks’s life, but now we need this and this and this. And not just for my son, but for thousands of city kids as well.

For every 5-year-old whose IEP is respected, a multitude of others are being more or less ignored. Recent news of yet another DOE reorganization of special education (the third since 2002) is truly disheartening, since according to Advocates for Children (AFC), so many of the recommendations submitted by various advocacy organizations for the first reorganization remain unaddressed. Frankly, it’s hard to imagine that this third go-around will accomplish more than respond to impending budget cuts, particularly since it’s being headed up by a business executive, not an educator (let alone a special educator!).

I listened carefully to the testimony at the Education Committee of the New York City Council hearing last Thursday. A picture quickly emerged of a very broken special education system. I know that easy solutions are few, and that this system was broken long before mayoral control was a fact of law. But I also know that the advocates who spoke that afternoon are in the trenches with these under-served kids and their families every day, and I’m willing to bet they lie awake at night because of them. I urge you to act on their advice.

I am also deeply worried by DOE’s investment in attorneys to fight tuition requests by special-needs families, and what looks like reluctance to develop new sites and programs. Believe me, it’s plenty hard to raise a non-verbal child. And it’s harder still for that child to be denied a lottery spot in the single ABA (Applied Behavior Analysis) public school in New York City, and to then have to bear the burden of a $90,000 private school tuition even when you bring a lawsuit against the DOE to pay it back over a year later. But to lose that lawsuit, or to win it, but have a DOE appeal overturn the verdict, ventures beyond hardship to true punishment. This is not one of those complicated problems that has no easy solution. It seems to me that this is, quite simply, wrong. And we should, quite simply, find a way to stop it.

Your department funds the ASD Nest program. You know how to save these kids and help their families. And they, and we, need you, now more than ever.

Please understand that all I say is grounded in appreciation for all you’ve done for my family, in no way intended as harmful or mean-spirited. My simple plea is that other families gain the benefits our family enjoys — that you find ways to extend your expertise to other families who are truly hurting.

Brooks was pretty much non-verbal until he was 3, and I know what it’s like to ache for the sound of his voice; I used to dream at night about what it might sound like. Thanks in large part to the DOE, I don’t have to do that anymore. And as far as how much my son loves his school, don’t take my word for it. Miraculously, Brooks can tell you himself:

The Education Committee of the New York City Council convened a hearing yesterday on the DOE’s nascent reorganization of special education. It’s the third planned reorganization of special ed since Bloomberg-Klein’s Children First initiative and according to Kim Sweet, Executive Director of Advocates for Children (AFC), the structure implemented in 2002 “has been wiped out and rebuilt twice in the past seven years.”

DOE representatives Deputy Chancellor Marcia Lyles, District 75 Superintendent Bonnie Brown and Executive Director for Special Education Initiatives Linda Wernikoff spoke of steady, incremental progress (while acknowledging profound shortfalls, both academic and procedural). Advocates from the United Federation of Teachers, the ARISE coalition, Parents for Inclusive Education (PIE) and AFC, among others, steadily chipped away at the good-news testimony from the DOE, describing problems in communication, transportation, the provision of mandated special services, enrollment, and outright discrimination against children with special needs and their families.

Even as the DOE was promoting one version of reality, advocates proposed another, and council members seemed caught in the middle, trying to understand basic processes — how a child gets evaluated, what is an IEP (individualized education program) — while seeking answers to questions brought by constituents in their districts. No one could deny the basic facts on the ground: Of high-school students with IEPs, fewer than one in five graduate within four years (about one in four graduate after five years). And the IEP “diploma” many students earn essentially functions as a certificate of attendance and confers zero access to post-secondary or career options like college, the military, or technical training, prompting committee chair Robert Jackson to ask, “So why do we call it a diploma?”

The pending review (and likely restructuring) of special education, and its oversight by Garth Harries, troubled many advocates present, who raised pointed questions of political expediency, economic necessity, and Harries’ preparedness for the job. (A lawyer and MBA, Harries has no special education expertise.) Harries’ responsibilities commence next week, according to Lyles. No end date was made public for a report or preliminary recommendations.

No matter how long the process may take, children and families need and deserve ongoing guidance. Families with questions can explore Insideschools resources, DOE information, or call 311 and ask for the Special Education Call Center, which has resolved more than 15,000 special ed questions since its inception in 2007, according to DOE’s Linda Wernikoff.

Brooks was in the bathtub last week, and here’s what I overheard: “You don’t have to be worried, cow. Your friends are here. Look: pig is here, horse is here, duck is here. If you cry, someone will give you hug. See? Horse wants to give you a hug. Mmmmm. There. Don’t you feel better?”

In the old days, presented with a set of animal bath toys, Brooks would repetitively pour water over them.

Not only is Brooks finally delving into imaginary play, he’s showing me what a warm and nurturing place his kindergarten classroom is. Of course, this confirms what we already knew from meetings with the teachers and therapists, and it is also firmly on display whenever I pick him up or drop him off. I love watching Brooks experience such tender interactions with his new grown-up friends. Although it wouldn’t be fair to credit the school alone with this developmental leap in imaginary play (we’ve been working on it since Brooks was 18-months-old), the program is certainly living up to our expectations. For example:

Brooks came home last week with a worksheet entitled “People like it when I say hi!” with hand-drawn pictures of mom, a bus driver, a hallway, and someone new. This apparently simple worksheet not only encompasses the social greeting component, but also fine-motor drawing skills, and reading practice. I think it’s emblematic of the efficiency of their multi-disciplinary approach. (It’s also nice to see that Brooks is finally drawing stick figures with legs that don’t come out of their heads.)

Any concerns that we had back in September about a small, potentially restrictive self-contained special ed class have pretty much melted away. Brooks is making regular short visits to the integrated Nest class these days, and if he continues to progress, he may move into the integrated model next year. We also worried that all this concentration on social issues might shortchange academics; no more. Many weekend mornings, he sits at the computer and Googles “dvd,” “toys,” “max and ruby,” clicks on the search results, and calls me over: “Look, Mommy. I added something to the cart!” He once got to a Craig’s List ad for a new car (maybe from a search on the movie “Cars”?). Once he figures out credit card numbers, we’re in trouble. In the meantime, he’s doing just fine.

The teaching units in the classroom are chosen as carefully as everything else, and the current one encompasses “dealing with change,” a big challenge for Brooks and his five classmates. In an attempt to put at least a dent into their over-reliance on schedules and routines, these kids are learning that’s it’s okay to “switch things up.” As a part of that, his teachers are trying to encourage Brooks to take more risks, instead of responding with his usual automatic “no” when asked to participate in certain classroom activities.

Last week, Brooks told me I should come to school because “it’s fun and they have centers and snack.” So I told him that I didn’t think they would let me come to school, because I’m a grown-up, and he paused and said: “Mommy, you need to take a chance!”

Author’s Note: I learned recently that the Intensive K program that Brooks attends is not technically part of the ASD Nest program, although it does feed into it. It is separately funded. I apologize for any confusion.

Over the past week or so, we and others have written about the DOE’s Garth Harries. He’s in charge of the Portfolio office, which controls the closure and opening of schools, charter school development, and Career and Technical Education programs, among other large-scale projects. Harries has newly been dispatched to evaluate (and probably remake) the special-education system within the public schools. It’s no stretch to say, Harries’ plate is, essentially, loaded.

Now comes news that Harries has been chosen for a prestigious executive management training program sponsored by the Broad Foundation, designed to “prepare prominent leaders from education, military, business, nonprofit and government sectors to lead urban public school systems.” The program spans ten months and includes six extended weekend workshops in cities across the United States, after which, the “Broad Center will help place participants in urban school districts as superintendents and senior executives.”

Broad program graduates have been placed at the heads of school systems in 37 cities across 23 states, and in dozens of leadership slots in non-urban settings. Which forces the questions: Where, exactly, is Harries going? And what, exactly, will happen to his many, many projects and myriad responsibilities, if and when he exits New York City for greener pastures? Or, is this a first step into the well-shined shoes of Joel Klein, should the day come when the current chancellor leaves the scene? The answers will, of course, be closely guarded. But what’s certain is that an already-full plate is now brimming over. Can one person — even a super-capable “analyst and mechanic of large operations,” according to DOE spokesman David Cantor – juggle it all?Update: As of Monday February 2, Harries will devote 100% of his estimable energies to special education, according to Deputy Chancellor Marcia Lyles’ testimony on January 29th, before the City Council’s Education Committee.

I was fortunate enough to attend a Speak Out event in the Bronx this past Thursday evening that was co-sponsored by the ARISE Coalition and Parents for Inclusive Education (PIE). These advocacy groups are working hard to ensure that NYC special ed students get the appropriate and free public education that they are entitled to by law, and they have recently hosted public forums for parents in all five boroughs.

As a special needs parent myself, I’ve often wondered how other New York City families, especially those with fewer resources, cope with an autistic or developmentally delayed child. My husband and I both have college degrees and English is our first language, and we still have trouble reading an IEP (Individualized Educational Plan), which is often more complicated than a tax form. We have made it our business to seek out the best resources to help us navigate the DOE and ultimately to get Brooks the services he needs. We’ve been fortunate in that the countless hours we’ve committed to our son’s education have paid off. But for those who lack higher education and often don’t speak the language—not to mention, don’t have the time to devote to the process —not only does the diagnosis often come later, which makes everything more difficult, they are frequently left to fend for themselves in terms of advocating for their children. Thanks to the efforts of groups like ARISE, the families I met on Thursday night are getting the assistance they desperately need.

Single-digit temperatures did not deter these Bronx parents from taking advantage of the opportunity to tell their stories, and many spoke of their heartbreaking attempts to do right by their children.

“Why is my son not receiving physical therapy?” That’s what one committed mom asked the teachers and administrators at her son’s school. They responded that even though physical therapy was on her son’s IEP, it was not available at their school, and they referred her to the district. The district’s response was that he is indeed getting physical therapy. He is indeed getting physical therapy?!

Whether these kinds of bureaucratic exchanges are a result of bad record-keeping, which the DOE openly admits to with respect to special education records, or bald-faced lies, which is the interpretation of this Bronx mom, the bottom line is that a public school child who requires physical therapy as an integral part of his education is not getting it.

Other parents spoke of long automated phone calls to the DOE that provided nothing more than numbers to press for information they already had. They spoke of teachers who gave up on kids as soon as they heard the word “autism.” They spoke of high-functioning children with autism coming home from school beaten up because they had been placed in classes with violent, emotionally disturbed children.

What was remarkable about the evening is that regardless of how horrible these stories were, they were underscored by hope. These parents didn’t hesitate to remind each other that there are some really good teachers out there. Even though more than one speaker recommended that the CSE (Committee for Special Education) in the Bronx be shut down and then rebuilt from scratch, they all believed that this system could somehow be saved, and that they could help to make that happen.

Unfortunately, the one representative from the Office of Special Education Initiatives that attended the meeting left well before many of the parents had a chance to speak.

At the start of the meeting, AHRC and PIE advocate Chris Trieber encouraged parents to get up and speak in order to dispute this quote from the DOE: “90 percent of parents are satisfied with the quality of education their children received.” Near the end of the meeting, one parent responded: “Maybe they should change that to 90 percent of parents are NOT satisfied.”

Earlier this week, DOE announced a new data-management system for special education students in the city’s schools. Hard on its heels comes news, thanks to GothamSchools‘ Philissa Cramer, that DOE wunderkind Garth Harries will oversee an evaluation and, it’s thought, eventual revamp of special education across the city’s 1400+ schools.

Advocates for the special education community like Kim Sweet, Advocates for Children executive director, say that Harries lacks the practical background to undertake this important effort, especially in economically fragile times. Inexperience didn’t stop Harries before; although he has never taught in or led a public school, as head of the DOE’s Portfolio office, Harries has overseen the closing of dozens of large, failing schools, and the opening of hundreds of new, small high and secondary schools in their place.

An educator he’s not, conceded David Cantor of the DOE’s press office; he characterized Harries instead as an “analyst and mechanic of large operations.”

Gulp.

I’ll never forget when my husband first introduced me to his Dad: I was immediately pulled into a great big bear hug. Because I was so much younger then, I didn’t realize how fortunate I was to be welcomed into the kind of family where love and generosity run rampant.

Although we lost the patriarch of my husband’s family last year, his legacy of outsized loyalty and affection lives on. When Brooks was first diagnosed, I remember breaking down and being comforted by my sister-in-law, who assured me that my son would indeed have a meaningful relationship with his aging grandfather and all of his aunts and uncles and cousins. This was a tall order back then: As a toddler, Brooks was horrified at the notion of even entering my sister-in-law’s apartment. Each time we pushed his stroller through the front door of her building, he would start to cry hysterically. “Happy Chanukah” became “let’s survive Chanukah,” and all the other holidays followed suit — until Brooks finally started coming around (improving, recovering, coping—whatever you want to call it).

Fast forward to this year: All my sister-in-law’s efforts have paid off and resulted in her singlular and very special relationship with Brooks. These days, he adores her, and shows it by torturing her with his repetitive games at family holidays. She has been planting the seeds of a sleepover for quite a while now. Of course, at first mention, Brooks said no immediately. But last week at dinner, while he was running through the laundry list of what he wanted to do that weekend, he came out with: “Mommy, I want to have a sleepover at Aunt Madeline’s.” That’s right. In the very same apartment that he once couldn’t tolerate. Without me or my husband. On his own initiative. Wow.

This monumental event actually took place over the weekend, and I’m still feeling a little light-headed. Brooks experienced a whole new level of independence. My husband and I rediscovered a whole new level of existence: For a day and a half, neither one of us had to parent. We could eat uninterrupted meals and share uninterrupted conversations. Again, wow.

I’m sure that one day soon, Brooks having a sleepover at his Aunt’s won’t seem like a big deal. I guess it’s human nature to take things for granted. But for now, I can hardly think about it without tearing up; without thinking about how our family dodged a bullet when Brooks was 18-months-old, and how we are so incredibly fortunate that Brooks is doing these things that any other regular kid his age does.

If you’re a special needs parent, I wish you many of these ordinary/extraordinary events. And also, your very own Aunt Madeline.

I just wanted to spread the word about a new after-school program for kids with autism.

Here’s what I know about it:

• It has been specifically designed for the Nest kids at PS 178, but open to other kids as well (K through 2nd grade).
• It’s brand new, runs Tuesdays from 3pm - 5pm from Tues. Jan. 20 to Tues. June 16. (Hopefully, it will grow into additional days as well).
• It is up in Washington Heights (A or 1 train).
• The main teacher is a social worker and second-year grad student at Columbia who has experience running programs for autistic kids. The other teacher is a certified Yoga instructor.
• The cost is $500, and if a grant comes through, it could be significantly less.

We’re signing Brooks up and are hopeful that it will be an exciting program. For information, contact the program organizer, Victoria Neznansky (212-569-6200, ext. 204). She’s very committed to it and understands how much a program like this would mean to parents. If you’re interested, please call her.

Our family was fortunate enough to spend this New Year’s the same way we’ve spent the last dozen or so: with the same three close friends, home-made cocktails that are usually shades of blue or pink, and food that tastes remarkably good (and not just because of the blue and pink stuff).

We’ve forged our own quirky traditions along the way: Jenga tournaments that culminate in crowning a Jenga Boy or Jenga Girl for the year, ear waxing, small gift exchanges that generally involve chocolate; but the one that all of us insist on every year, even if it’s many hours past midnight, is our “manifest” ceremony. Each of us takes a few quiet moments to write down our wishes for the next year. Then, one by one, we set our little lists on fire and watch them burn while reciting a secret poetic phrase that is supposed to green-light all our hopes and wishes. The friend who brought this annual tradition into our lives then collects the ashes and adds them to the ones of the prior years.

Since just like a birthday wish, you can’t tell anyone what you write or else it will not come true, I dare not divulge my list. But I can speak to what I did not write, which kind of surprised me. As I sat there with pen poised, I thought about writing: “Brooks will improve so dramatically that he will lose his autism spectrum diagnosis.” Hmmm. Certainly something I hope for. Certainly something I practically salivate over, and certainly, a scene I play out often from beginning to end: how the pediatric neurologist tells us and how my husband and I both start to cry. But I couldn’t write it down.

There are a lot of reasons, I think. First of all, I’m someone who makes an extra effort to be grateful for what I’ve got (even if I don’t always manage to do it successfully). Three years ago, when my father’s “flu” turned out to be a swift and mortal cancer, I learned to appreciate what I have. You never know how long you will have it. Would it be asking too much to have my son completely lose his diagnosis, considering how far he’s come? Not so long ago, we weren’t certain he would develop language. My husband and I have a beautiful, affectionate, funny, sometimes-infuriating 5-year-old. With or without a diagnosis, aren’t we lucky just to have him?

Secondly (and I definitely feel guilty about this one), maybe I don’t want to set myself up for disappointment. To be honest, I’m not as sure as I once was that Brooks will actually lose his diagnosis. Last year, when he was still in pre-k and mostly in a special-ed environment, when he was making leap after developmental leap, it seemed almost inevitable that he would mainstream. But this year, even though he’s in a special-ed class, typically-developing kids are everywhere, and the planet-sized gaps between Brooks and his peers are striking. Add to that our recent move and Brooks’s new school, which essentially have functioned as a welcome mat for regression, and I find myself much less optimistic. Certainly not without hope, but 2008 was a tough year.

Third, I don’t want to put pressure, even the featherweight pressure of my flammable wish, on Brooks. Faced with a question with even the slightest whiff of expectation, he quickly resorts to “no” or “I don’t want to talk about it,” even when he clearly knows the answer (which is often the case). Maybe he needs breathing space—I know my husband and I do! Ever since Brooks was 18-months-old, we’ve been working tirelessly to identify how far we can push him. “Too far” is a moving target that needs to be tested and re-tested, and it takes a lot of time and energy. Frankly (guilty, again), we’re tired. Maybe the real truth is that I don’t want to put pressure on myself. If Brooks doesn’t shed his diagnosis, won’t it be our fault? Isn’t now the “sweet spot” of possibility, the time when his young brain is still elastic enough to conquer the repetitive habits and sensory challenges and social weaknesses? Are we simply too exhausted to continue hammering away?

The bottom line is that our basic family foundation seems to be shifting. Although this is always, subtly happening, at times like New Year’s, the rumbles make us see that we need to change in order to move forward. If Brooks loses his diagnosis, this year or any other year, so be it. And if he doesn’t, so be it. I’m officially taking it off my “must happen” list.

What will remain on that list, however, is that the three of us do our best to help one another and to help ourselves. Autism or not, we will love and care for each other; we will continue to teach Brooks how to make friends and how to succeed in the mainstream world. We will temper accepting his limitations with celebrating his strengths, of which he thankfully has an abundance.

And when he grows up, I hope Brooks will spend his New Year’s Eves deriving the same comfort that we do now, from his own small group of close and loyal and lasting friends. Whether they set their wish-lists on fire or not.

Q: My son is graduating from high school this coming year. He has an IEP. Will this IEP automatically follow him through college and is there such a thing as special education in college? Are there any programs you know of that can assist him, and are there any majors for special education students?

A: The fact that your son has an IEP (Individualized Education Plan) indicates that you have been an advocate for him! But this plan will not follow him to college — IEPs, as guaranteed by the Individuals with Disabilities Education Act (IDEA), apply only to elementary and secondary schools. It is possible for students with disabilities, including learning disabilities, to receive special services in publicly-funded colleges; this is covered by the Americans with Disabilities Act of 1973. But to obtain these services, you and your son will have to be proactive and ask for them — the colleges will not know he needs services unless he discloses this fact. So save your IEP and any supporting documents in order to request services. Colleges and universities vary in the accommodations they offer and the evidence they require in order to grant these services. And bear in mind that some schools offer more help than others. You will simply have to check with each school’s disability services or student services office.

In terms of which colleges your son might consider, that depends largely on his individual interests and abilities. Does he want to stay close to home? Does he want a commuter college or does he want to live in a dorm? Are finances an issue? All of these questions should be taken into consideration.

There are a few schools that offer programs especially aimed at students with disabilities. Landmark College in Vermont was specifically established to help students with dyslexia, ADHD, and other learning disabilities. The SALT program at the University of Arizona offers a similar program. You can obtain further assistance by consulting the National Center for Learning Disabilities (this organization offers a scholarship as well). You can also read and download a government brochure titled “Students with Disabilities Preparing for Postsecondary Education”. In addition, there is an excellent website, LD online, which outlines resources about college for students with learning disabilities.

The law protects the rights of students with disabilities to obtain the services they need to help them succeed, but the law does not guarantee admission. To avoid disappointment, plan realistically. Start by discussing with your son his hopes and dreams. Then discuss with his school counselor which schools might offer the best possibilities. Without knowing the nature of his IEP or his interests, it is difficult to recommend specific schools. However, the schedule flexibility of the community college system, along with its moderate cost, might be a good way for your son to start his post-secondary studies.

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I have a relentless, age-old problem that has become especially acute since I gave birth to my son: too much to do, too little time.

Prioritizing my to-do list goes something like this: first comes parenting, always, without exception; then job-related items; and finally, the hodge-podge mixture of “everything else,” which covers being a friend, daughter, sister, neighbor, citizen, cook, seamstress, plumber and whatever else I’m forgetting, in whatever order works for that particular day. Oh yeah, and wife.

And no matter how much time I devote to my ever-present task list, check marks indicating “done” are occasional at best, while incomplete items multiply and linger. And I shouldn’t be complaining—my husband kicks in at least 50%, we only have one child (albeit one with special needs), and we’re lucky that we’re both employed “in this economy.” And nobody likes a whiner. And yet…

So I had this crazy idea. Two words: “parental assistant.” In the hands of some brainy MBA, I think this new job title could become more ubiquitous on Craig’s List than “weekend barista.” Not a nanny or babysitter who takes care of the kids and the house when the parents are out, but, rather, someone who’s there when the parents are home so that we can actually get something done without the guilt of encouraging our children to watch “Nemo” for the umpteenth time “so Mommy can do some work.” And the beauty of this idea is that it could also jump start our ailing economy. A whole slew of highly educated and accomplished folks lost their jobs last month—how about if the middle-class families of America put them back to work?

I don’t know about you, but I’d be willing to dip into the cookie jar fund for a former Wall Street trader to come over a few days a week to help me restructure my credit card debt and also teach Brooks the ins and outs of Monopoly Junior. And I think at least one of the big three auto CEO’s will be available soon…

President-Elect Obama: would you consider making this a part of your public works program?

I warned you that this was a crazy idea. Maybe it will get easier as Brooks gets older, although parents with older kids have told me it doesn’t. Different, not easier. I think the best we can hope for is that the extra vacation days this holiday season will give us enough breathing space to approach 2009 with renewed vigor.

Which reminds me: I need to order New Year’s cards.

In a story that’s not made many headlines at all, Education Week reports on a new rule by the US Department of Education that permits parents of students with special needs to opt out of classes and programs designed to support their kids, in favor of mainstream, general education. It’s not clear why parents would elect to let go of educational options that can range from special classes and in-class supports to extra time (and quiet) on exams, and it stirs up disturbing echoes of what’s been mentioned anecdotally by more than a few high-school principals: Families of students with special needs often feel a strong stigma when their child is classified with an individualized education program, or IEP. The perceived stigma seems to increase as children mature, principals say. Some parents even reject the opportunity to have their child assessed for special needs, because the social concerns — what will people think, what will they say — are so strong.

The conflicts this new rule exposes are thorny and nuanced: Of course, parents should have every right to determine their child’s education. And of course, and guaranteed by the Individuals with Disablilites Education Act, every child with any kind of special need deserves to be educated in the most appropriate, effective setting. But where do the rights of the child override the rights of the parents? Should parents be permitted to make educational decisions that will clearly hamper their child’s progress? Who’s “the decider” here — schools? parents? psychologists and education evaluators? When does a child have her or his own voice? And can that young voice, somehow, be part of the conversation?

When it comes to mainstreaming your autistic child, is there a better litmus test than soccer?

If my son can enjoy the social component of being part of a team, if he can muster the athletic coordination it takes to pass and kick the ball, if he can appropriately process the echoing sounds of kids running and coaches yelling and balls bouncing in a large gymnasium, then doesn’t that mean all those sleepless nights of worrying will finally be over?

That is why for the past ten Sunday mornings, my husband has taken Brooks to the Y for a friendly, neighborhood soccer class, and that is also why we don’t listen when the last thing Brooks says before they walk out the door, every time without exception, is “But I don’t want to go to soccer.”

The reason we don’t listen is that Brooks has a long history of not wanting to do things: he didn’t want to talk, he didn’t want to feed himself, he didn’t want to be in the same room with other kids. And my husband and I have a long history of gently prodding him into the unwanted experience and then continuing the exposure until he starts to enjoy it. The hundreds of hours I have spent dragging him to Gymboree classes and bookstore readings and kids’ concerts have definitely paid off. So it seems like a no-brainer that my husband and I should keep doing what works.

But there are two problems with this approach. The first is a new problem: Brooks is getting older. It’s one thing to ignore a toddler’s protests—it’s quite another when a increasingly verbal 5-year-old describes to you exactly what he doesn’t like, and asks you point-blank why he has to do it. And the second is a an old problem that’s been around ever since he was diagnosed: How far can we push him without sacrificing his self-esteem? If this is simply too challenging for him at the moment, which may very well be the case, then why are we torturing him by having him face his deficits in front of us and his peers week after week? Should we instead be taking a break from soccer and working on something else? Or should we design a more appropriate intervention, like having his physical therapist work on ball skills with him one-on-one?

Brooks definitely benefited from this particular soccer program: see his grin when he accepted the trophy? And he was able to participate in and enjoy the practice drills. We learned long ago never to underestimate what Brooks would do for chocolate, but even the promise of S’mores ice cream did not motivate him to join in to the short games that ended each class. The unpredictable nature of all those kids running wild forced Brooks to the sidelines where he could manage only to observe while chewing on the neck of his shirt (a self-stimulatory behavior that he uses to cope with stress).

I wish we had the luxury of being able to concede that Brooks is simply one of those kids who isn’t into sports and that it has nothing to do with autism. Although this is a possible scenario, given Brooks’s history, it’s unlikely. Because of autism’s pervasive nature, and because intervention needs to come sooner rather than later to be most effective, our feeling is that it’s too dangerous for us to categorize any challenge as a typical one, even though it may well be.

As much as my husband and I would love to proclaim: “Brooks plays soccer!,” with all its delicious connotations about how far he’s come, the truth is that we’re not there yet. And we’ve decided not to continue the class into next term. He’s going to have to deal with team sports at some point, but he doesn’t have to do it now, not when he’s only 5 and he’s just moved to a new apartment and he’s just started kindergarten in a new school. We take these things case by case: we’ve made our decision, and we’re okay with it.

I say that now, but in the mail yesterday there was a brochure for a kids’ basketball league. Which I know will inevitably lead my husband or me animatedly asking Brooks: “How fun would it be to meet a whole bunch of new friends and play basketball?” Here we go again…

When my son Brooks was first diagnosed with autism at 18-months-old, there was nothing remotely funny about it. Without exception, it was probably the single most painful experience my husband and I have ever had.

But as time passed and as we began to settle into our new identities, I believe that our sense of humor saved us. Fortunately, my husband is one of the funniest people I know (and I know a lot of funny people). And I’m lucky enough to have inherited a modicum of my dad’s sense of humor, so laughter is a highly valued commodity in our family.

But as I already mentioned, and at the risk of stating the obvious: Autism isn’t funny.

Or is it? For us, the humor crept in slowly. While we were waiting at the 92nd St. Y to hear notable autistic savant Temple Grandin speak, we were discussing Brooks’s recent habit of repeating whatever is said to him. The technical term for repeating instead of responding is echolalia, and we were plenty disturbed by it. After analyzing and then re-analyzing whether Brooks was using it in a good way and what strategies we might employ to limit it, my husband said: “How many echolaliacs does it take to change a light bulb?” I smiled and said I didn’t know. He responded: “How many echolaliacs does it take to change a light bulb?”

Humor has also helped us cushion the blows that hit autism parents every few months: the new set of reports from therapists, full of cold, hard numbers that document the percentage of delay your child has. You never want to read these. Any excuse will do: you’re too tired; you can’t find your glasses; you need new glasses. One day when I ran out of excuses, I read that Brooks, who was 3, had the expressive language skills of a one-and-a-half year old. I felt sick: “Our son is behind half of his life!” My husband countered: “So when he’s 80, he’ll feel like he’s 40.”

Before long, I found myself sharing our new-found habit of laughing at ourselves with other families. Brooks got his occupational therapy at a local sensory gym where the waiting room teemed with dedicated parents who eagerly shared their success stories, but just as often commiserated on their disappointments. One day, a little boy was having a big meltdown while his mom waited quietly on the bench with the patience of a saint. We all heard the boy screaming and saw him kicking. We all knew that he perceived this simple end of his session as life-threatening. It was torture for him to experience, and it was torture for us to watch. I turned to the mom and said: “You know, I truly believe that our kids will be fine—we’ll be the ones that need to get institutionalized.” I think the mom actually laughed, and I know that she appreciated the sentiment.

Many years ago, when I held my dad’s hand as they wheeled him into the operating room for quadruple bypass surgery, he said: “This is just like E.R.” Only now, as I’m writing this, do I realize that he was the one who showed me how to lean on laughter to stave off tragedy. Did he know back then that he was giving me the key to raising his grandson?

Comedy legend Bob Hope once said: “I have seen what a laugh can do. It can transform almost unbearable tears into something bearable, even hopeful.” Then again, he also said: “Kids are wonderful, but I like mine barbecued.”

Author’s Note: For the purpose of protecting my 5-year-old autistic son’s privacy, I’ll call him “Brooks.”

Brooks is an autism success story. Or he is well on his way to becoming one. But like everything else about this puzzling neurological condition, any definition of “success” is complicated.

Yes, there are specific challenges that Brooks has overcome one hundred percent. They are now set in stone; that is, we are confident they will not reverse themselves, and our family owns them proudly. There are big ones and small ones, and we are fortunate enough to have a long list.

I’ll start with the huge arena of speech and language. When we took him out in the stroller, Brooks used to point and make broad inarticulate vocalizations that made it impossible to respond to his rare attempts at a social interaction. This was heart-breaking, especially since by then, all his typically-developing peers were having full-on conversations with their parents, and all my husband and I could do was watch longingly. These days, we constantly have to remind Brooks to use his “indoor voice” on the A train when he casually chatters on and on: “What stop is next, Mommy? The A train is an express train, but I think the C train is a local…” He often charms even hardened NYC subway riders and I get compliments on my well-behaved and happy little boy. I smile and say thank you.

Then there are smaller things like haircuts. Brooks used to completely melt down even before anyone ever touched his hair; simply walking into the waiting room of the salon was enough to set him off. These days, he loves going: He sits in the cool chair that goes up and down, he enthusiastically (and politely) asks if it’s time for the blow dryer, and the other stylists often compliment me on such a well-behaved and happy little boy. I smile and say thank you.

And these jaw-dropping transformations keep coming. Just this past weekend, our family attended the circus. A few short years ago, even way up in the nosebleed seats, Brooks was so overwhelmed that he cried and screamed until we finally had to leave. But this past Saturday, he laughed at Grandma the Clown and said “Wow!” during the high-wire act. More compliments. More smiles.

But these smiles of mine are complicated. While they mostly express my inescapable joy that Brooks is deserving of compliments even by strangers unaware of his diagnosis, they also have a knowing, melancholy aspect because even though he looks “normal,” his brain works differently. Not necessarily better or worse, but differently, and that is something that strangers will never know or understand. In fact, even well-meaning family and friends who do know, don’t really understand. And how could we expect them to, when the truth is that my husband and I don’t fully understand?

For all of Brooks’s miraculous developments, he is still not a child who can attend a mainstream school, or even a regular integrated classroom—we had to move 160 blocks uptown to get him into a program that provides the wide range of specific one-on-one services he needs. And when he chatters on and on, his language is often repetitive and slightly obsessive. And when he gets a haircut, I have to prompt him to say hello and goodbye. And during the circus, he watches many of the acts with an odd curiosity instead of laughter or delight. Maybe because he can’t read certain social cues. Or maybe because it’s too loud. Or maybe because of the smells. Or maybe because he needs more sensory input. Or maybe because he needs less sensory input. We still sometimes can’t figure it out, and we’ve been at this since he was 18-months-old!

Does this mean Brooks is not an autism success story? It all depends when you ask me that question. Is it at the end of a long day when I’m frustrated that Brooks can’t change into pajamas by himself because his brain can’t sequence the number of steps necessary to get through it all? Or is it right after his teacher tells me that all by himself, for the first time ever, Brooks approached a classmate and said: “Do you wanna play with me?” and sat and played with the boy for a full 15 minutes?

Tomorrow is Thanksgiving. I’m thinking that perhaps my husband and I will take the day off from being ever vigilant of our son’s deficits, and instead simply be thankful for his remarkable progress since last Thanksgiving. And, just as importantly, we will look forward to the extraordinary changes that we know next Thanksgiving will bring. Happy Turkey Day, everyone!

While it’s high season for pre-K and Kindergarten applications, families of children with special needs are part of the admissions process, too, and want information on which schools will best serve their children. Particularly for families new to the city’s schools, identifying solid schools with the right supports can be harder than the search for the proverbial needle in a haystack. To help ease the transition into school, the DOE is hosting kindergarten information fairs for families of kids with physical and learning disabilities. Fairs are scheduled during school hours and in the evenings, so working and at-home parents have ample opportunity to learn about the options the city offers their children.

Fairs continue through December 15th and are organized by school district. Click here for fair information. Take a look, too at this overview of DOE special education services, and their PowerPoint introduction to the IEP, or Individualized Education Program, evaluation process. One point highlighted in the IEP ‘deck’ is well worth repeating: Kids are more alike than they are different, no matter their challenges. And, one might add, families are more alike, too, no matter what services, supports, or special-education programs they seek.

When I think about scientists in a laboratory, my mind goes to the episode of comedian Martin Mull’s classic small-town talk show, “Fernwood Tonight,” where a guest doctor claims that leisure suits cause cancer, holding up a cage with lab rats in tiny plaid blazers and matching pants. In that same vein, is there a researcher somewhere today taking notes while a little white mouse is trying to enjoy a gluten-free, casein-free cheese wedge?

Thankfully, a lot of very smart folks out there grew up in households where offbeat comedy did not trump science. Some of them are not only investigating the causes of autism, but also striving to develop better treatments. I was fortunate enough to be invited to a conference last weekend at Columbia University Medical Center where leading neuroscientists and clinical researchers spoke about their current projects.

The Simons Simplex Collection is going the DNA route and attempting to identify specific genes related to autism by looking at families with only one autistic child (and preferably at least one typically-developing sibling). I’ve always been confused about these kinds of studies: You hear that they found a gene abnormality that they think is significant, but the catch is that it only occurs in 1% of the autistic sample. But I learned at this conference that 1% in these cases is indeed significant, because the gene mutation is so extremely rare in the general non-autistic population. If this study positively identifies any genes associated with autism, diagnosis would finally be a matter of an objective blood test instead of a subjective collection of observable symptoms. And although no one has yet been able to figure out how to fix a defective gene, “yet” is the operative word.

Participation in this study involves a day at Columbia University Medical Center, thorough evaluation of the autistic child (at no charge!), a family social history, and blood draws for all. If your child would benefit from a comprehensive evaluation, this seems like an excellent opportunity to get a great one, gratis.

Another research project had to do with transcranial magnetic stimulation. I don’t know about you, but that’s not a term I hear bandied about very often. Plain English: Magnetic resonance imaging, or MRI, studies show diminished activity in the brain’s speech and social interaction centers in autistic subjects. Researchers manage to non-invasively stimulate these tiny parts of the brain by placing specialized electromagnets on the patient’s forehead. Although it’s only in its infancy, this research path holds real promise, as brain imaging techniques like MRI’s and PET (positron emission tomography) scans become more and more sophisticated (and less stressful on the subject). Participation in this study involves a 3-hour MRI for the autistic child, which can be broken down into shorter sessions if necessary.

I’d like to be able to tell you that my family and I are contributing to the greater good and participating in both of these studies. The truth is, we’re choosing not to — for now, at least, because a 3-hour MRI would be a nightmare for my son (and for many autistic children, I would imagine), a blood draw would make him very anxious, and mostly because I already ask him to do so much that I just can’t bring myself to ask him for anything more.

If you feel your child would benefit from a free evaluation, or if it wouldn’t be too much of a hardship for your family, you might consider participating. For more information, contact Cassandra D’Accordo at daccordc@childpsych.columbia.edu.

Last Wednesday, when I told my 5-year-old autistic son that Barack Obama was our new president, he asked: “Is he going to fix everything?”

I know that my son wasn’t referring to the rapidly-collapsing economy or the wars or to global warming—it was probably one of his occasional non sequiturs. But on some innate level, he picked up on the optimism of this history-making election and the pervasive enthusiasm it has spawned: “Yes, we can.”

As long as I can remember, I’ve been a big believer in “Yes, we can” (most recently as an autism mom), and I’m thrilled that President-Elect Obama has managed to channel it into a national movement. My husband and I chose to believe that yes, our son could, and would, develop language and respond well to therapy when guarantees to that effect were as absent as his 2-year-old voice. While we were acutely aware of far more heart-breaking scenarios, our rationale was that in order to help him, we needed to be optimistic—for us, it would have been too painful “not” to believe.

In addition to our new president’s campaign tag line, I’m also fond of his observations on being a parent: “I’m inspired by the love people have for their children. And I’m inspired by my own children, how full they make my heart. They make me want to work to make the world a little bit better.”

In my own small way, I’d like to make the world a little bit better, too. My husband and I recently embarked on a project with long odds (what else is new?): We created ShopForCharityNow.com, which allows you to shop at major online stores while automatically triggering charitable donations, without any extra cost to the shopper. In this economy, your extra click from ShopForCharityNow.com to your shopping site (to buy what you were going to buy anyway!) generates new and desperately-needed revenue to non-profits reeling from Wall Street losses.

Getting back to my son’s curious question about the president-elect, I responded by telling him that I thought our new president would indeed try to fix everything, to which he responded: “On Tuesday, or on Wednesday?”

If you don’t buy anything at ShopForCharityNow.com on Tuesday or Wednesday, that’s okay. I told him it might take a bit longer.

by Marni Goltsman

As promised in last week’s post, here’s how my family fared with ABA and Floortime.

First ABA Session:

What I expected: I would have to hold myself back while a cold, unfriendly therapist forced my screaming, crying son to sit at a table. Then, his desperate, brief escape, after which I would hold myself back again when the therapist physically placed him back at the table. And I would continue to bite my lip and let them rip my heart out of my chest because ABA is backed by a ton of scientific research, and because it was highly recommended as the best way to teach my 20-month-old how to clap and point and wave — skills he had not yet managed to learn on his own, unlike his typically-developing peers.

What actually happened: A warm and kind-hearted therapist watched me play with my son for the first few sessions in order to get to know him. What?! Wasn’t this supposed to be scary? Apparently not, when it’s done well. Although I can’t say that my son enjoyed the sessions (do you enjoy being forced to stretch yourself and perform outside of your comfort level?), this gifted therapist gave him so much support that it was almost impossible for him NOT to respond favorably. Every tiny success brought choruses of congratulations, and testimonials like “Wow, you are doing such an incredible job—I am sooooo proud of you!” I imagined that the 20^th congratulatory chorus might not have the oomph of the first. But remarkably, each endorsement was even more heartfelt and genuine than the last; undimmed enthusiasm, thus no diminishing returns.

My son knew that he couldn’t clap, but this therapist told him he could, and she had more than enough confidence for both of them. Within 3 months of starting therapy, he could. Perhaps not more than once or twice in a row, and perhaps not a hundred percent of the time, but that would come. As would, a few months later, pointing and waving.

First Floortime Session:

What I expected: A warm and fuzzy therapist would immediately begin all the strategies detailed in Stanley Greenspan’s “The Child with Special Needs,” which I devoured immediately following my son’s diagnosis. She would get my son to interact more and more with the world, but never forcefully; she’d follow his lead and his natural interests. And I would be completely comfortable with this slow-and-steady pace.

What actually happened: Whenever my husband or I tried to leave our son alone with other therapists, he repeated a heart-wrenching ritual, holding onto his white safety gate and crying for us to rescue him. Not so with his first Floortime therapist: he happily spent 90 minutes straight alone with her. Wow. Something inherently different in her approach focused on pure and simple acceptance. Her only objective was to get to know him—the real boy—without any judgment, and with truckloads of patience. If he wanted to read a book seven times, she would sit there and read it with him.

Many would argue that her job was to intervene, to teach him that you ’should’ only read a book once, but her quiet acceptance of his joys, wherever and however they existed, quickly earned his trust. He learned that she would not only allow him to be himself, she encouraged it. She celebrated the unique little person he was, with all of his unusual habits intact. This therapist was a breath of fresh air, especially at a time when everyone else, including me and my husband, were interfering with our boy’s most basic instincts. He must have wanted to swat us away like flies.

I learned that sometimes, it’s therapeutic NOT to intervene; that my son needed to know that we loved and accepted him and all the things that made him happy, regardless of whether they were socially acceptable or if they contributed to his cognitive development. Gradually, this therapist introduced toys that would help my son learn, like animal flashcards. Her slow and gentle pace yielded incredible results. Within 3 months, my son, who was previously unable to identify a single animal, could recognize animals and animal sounds, with an ease that was slightly above average for his age level. Honestly, this slow-and-steady pace is much easier to endorse after the fact. When we were living it, many sessions prompted me to second-guess my confidence in this approach and wonder, is this therapist actually doing anything?

My Family’s Bottom Line:

Both ABA and Floortime were hugely effective therapy models for my son. In fact, both theories have been incorporating more and more of each other’s strategies of late, and there is a new movement to combine them.

Our experiences with ABA and Floortime are not intended to recommend one type of therapy over another, but simply to share my family’s understanding of each one. And to the parents we know and respect who would sell a kidney to get their child a 27^th weekly hour of ABA, I wish you gifted ABA therapists (of whom there are many) who treat children like the individual, complicated, mysterious, and ultimately fascinating little human beings they are.

If your child is diagnosed with autism on Monday, you have to choose a therapeutic model that will determine the rest of that child’s life by Tuesday. Okay, I’m exaggerating, but only slightly.

Unfortunately, families do not generally have the luxury of time to choose between the two major types of intervention approaches: ABA (Applied Behavior Analysis) and Floortime. Here’s a quick overview:

Traditional ABA is behavior-based, adult-directed, and reward-centered. Tasks are broken down into tiny baby steps and then taught in a rote and repetitive manner. For instance, if little Ethan will only roll a train back and forth repetitively, the therapist will redirect him to a table with a 4-piece puzzle board and then hand him a single piece. If Ethan fails to place the piece into the puzzle, the therapist will physically take his hand and perform the task “hand-over-hand,” all the while recording data about how many attempts were made and how many successes were achieved. Every time Ethan succeeds, he is rewarded: praise, cookies, whatever. The goal is for Ethan to learn how to do the puzzle. (Please note that what I’m describing here is “traditional” ABA. These days, it is generally performed in a much more naturalistic form, but this more disciplined model boasts many peer-reviewed scientific studies.)

Floortime incorporates the entire social, emotional, and cognitive landscape of the child, and treats the collection of behaviors as only one aspect. It is a gentle, child-centered approach that emphasizes the child’s own interests, no matter how simple or repetitive, and builds on them toward more complex and appropriate actions and interactions. In this model, if little Ethan persists in rolling his train back and forth, the therapist gets on the floor and rolls a second train back and forth until Ethan notices. And if he doesn’t, the therapist can bang the second train into Ethan’s train—whatever’s needed to connect and elicit a response, even if that response is as basic as Ethan retrieving his train and continuing to play by himself. The goal here is for Ethan to engage in an interaction that is meaningful to him.

When my husband and I were first presented with this choice, we were fortunate in a few ways: we both had the same gut reaction in terms of which path to choose, we had support from experienced, caring and compassionate advisors, and finally, our son’s pediatric neurologist recommended ABA occupy less than 15% of our son’s weekly schedule. Although this made our choice easier, the vast majority of families we’ve met in parent support groups chose full-on ABA programs, and our decision not to go that route always requires explanation.

Ours goes like this: Yes, we wanted our son to be able to do a 4-piece puzzle, but we wanted him to do it because he enjoyed it, not for the cookie. Those in the ABA camp say the technique is simply a door into the parts of the brain that need to be switched “on.” Once the door opens, advocates say, the kids do start to enjoy the ‘games’ of therapy, as much as any typically developing child. I have to say, I’ve seen ABA work in exactly that way, but I’m still uncomfortable with the overall approach. At its core, it still seems to me a mechanical and lifeless teaching method, and one that would not address one of our top priorities: to instill in our son a love of learning; to show him that it can be interesting and fun and exciting.

As it turns out, my son’s ABA therapists have been some of his best, and he’s made multi-faceted gains as a result of their efforts. But I’m still a huge Floortime fan. It’s complicated, like everything else about autism. To elaborate (or create further confusion), I’ll describe one of my son’s ABA sessions and one of his Floortime sessions in my next post.

This week alone, I’ve come across two ‘cures’ for autism. The first one, “N.J. Doctor Says Hyperbaric Chamber Cures Autism” came via e-mail, and the other, “Most Experts discuss the autism problem: Now hear a solution” sidetracked me in the form of a half-page ad in Time Out New York (which I was reading to plan an extremely overdue night out with my husband, but which I suspected he would forgive me for postponing yet again, especially if it meant a cure for autism).

For new special needs parents, let me apologize for appearing flip and assure you that I am brimming with hope for my 5-year-old autistic son’s future. But in my experience, any organization or individual who claims a one-size-fits-all, guaranteed success is, at best, well-intentioned but mistaken, and at worst, attempting to exploit a desperate population: parents who would do anything to save our kids.

Fortunately, there was also a break from miracle cures: Melissa Fay Greene’s “Reaching an Autistic Teenager,” which chronicles the experiences of a few teenage boys with autism at a private school in Georgia. I’m familiar with the complex and nuanced development disorder Greene portrays. One autism school director captures the difficulty of choosing one particular type of intervention over another: “You meet one child with autism and, well, you’ve met one child with autism.”

The article provides a primer on the two major intervention approaches: Stanley Greenspan’s D.I.R./Floortime approach (used in the Georgia school) and Applied Behavior Analysis (A.B.A.). I will compare and contrast (and also congratulate and complain about) our experiences with both of these approaches in upcoming posts.

I have to be honest: It’s painful for me to read about autistic teenagers. My son started Early Intervention when he was 18 months old, and we have pinned all our fragile hopes on the belief that his brain chemistry will change. And we’ve seen some proof: The other day, for the first time ever, my son played hide-and-seek in the park with two other children. It was a spectacularly breathtaking moment. But the next morning, instead of having a conversation with me, he chose to talk to himself: “Do you want to take Nagle to Broadway, or Hillside to Nagle? Those are your choices. Which one do you choose? Hillside to Nagle? Okay. We’ll take Hillside to Nagle.”

We’ve seen him outgrow and conquer other challenges. We believe that he will overcome these as well. We choose to believe. But we also read articles about teenagers with autism. So we believe…with a melancholy asterisk.

And something else: Those miracle cures that I summarily dismiss? The ones I have fully investigated and, at the deepest core of my being, believe will not help my son? They haunt me. We should have tried B12 injections. We should have tried Tomatis. We should have tried Glutithione. Guess I’ll just add Hyperbaric Chamber to the list.

Only a few days after the UFT sued the DOE for infringing on teacher’s freedom of speech by forbidding them to wear political buttons on the job, the feds ruled against the union, satisfying Chancellor Klein: “Keeping politics out of the classroom was our primary concern here, and our position has been fully vindicated.” Just to be sure, DOE told one school to take down a poster of Barack Obama. The UFT, in a move that won’t make Mayor Bloomberg happy, announced that they will support preserving term limits. And more potential teachers competing to be in the classroom could, according to reports, be one of the rare positive trends brought about by the financial meltdown.

Focus on special education and special needs students during the presidential debates elicited an angry response from one advocate. A parent in Brooklyn realized that her son may not have been receiving his mandated services - and someone at his school may have tried to cover it up - and an autistic three-year-old was left on an empty school bus for six hours. Sunday’s Times Magazine looks into how schools are teaching autistic teenagers, and New York parents have successfully lobbied for more publicly-funded residential schools, to reduce the flow of students to private boarding schools in other states. But even a high profile lawsuit didn’t seem to get special education students at Fredrick Douglas Academy IV their mandated services, state officials discovered.

While home-schooling rates have risen in the city (more than 2,600 students registered this year, while only 1,600 home schooled in 2001), the Times wrote about parents who have chosen anti-schooling, not to be confused with un-schooling. Research questions the way gifted students are designated, and the DOE may have ignored warnings of overcrowding in Riverdale schools. Classes are now offered in Brooklyn to “help parents help their kids,” and a conference today was supposed to help educators and school safety officers discipline better.

In high school news, a lawsuit on behalf of students who were illegally pushed out of Boys and Girls High School was settled, and the students can now hopefully get their degrees. And as 8th graders consider which high schools to apply to, the DOE released the list of the most popular schools last year: Francis Lewis HS in Flushing, followed by Benjamin N. Cardozo, Midwood, Forest Hills, and Edward Murrow. For students who want a new option, Post reporter Yoav Gonen wrote about new themed charter schools in the city. “These aren’t your older siblings charter schools,” he said. And vocational schools these days aren’t offering your older siblings - or parents - technical education, either; they are much more academic. The way military recruiters gain high school students’ information has also changed - and this new policy is already being protested by the NYCLU.

Even if you have typically developing children, navigating New York City’s schools is not exactly a low-maintenance activity. Will your neighborhood public school be more crowded than a rush hour local? And if you choose private school, and if your child somehow manages to survive the fierce competition and earn an acceptance letter, what large and impressive heirloom will you sell to pay the tuition? (It can’t be your husband.)

Add special needs into the equation, and things get exponentially more difficult. Especially here in Manhattan, where you share psychic and actual real estate with parents who truly believe that if their children don’t start learning Mandarin in kindergarten, their nascent global-competition skills will be compromised. Mandarin? Reality check: When my son was non-verbal at 3 years old, we were concerned he would never develop the ability to speak English.

Thankfully, there are some great organizations that have helped maintain my family’s sanity in the midst of all this school choice chaos. YAI/NYL/Lifestart is one of the gems on our list, and jointly with the JCC, they annually sponsor a Special Needs School Fair coming up on Wednesday, October 29th. If you are the parent of a special-needs child, stop reading this blog right now and add this event to your calendar. And make sure you go! Many, many special-needs-friendly elementary and pre-K schools will be there to answer your questions. It’s also a nice opportunity to share information and catch up with other parents you’ve met in various support groups.

Among the many excellent schools that will be represented, a few have been instrumental in my son’s remarkable progress. The JBFCS Child Development Center (CDC) is a small, extraordinary program that allowed my son to exceed expectations time after time: The Intensity of Mild Autism describes five minutes of my son’s day there. And I can’t say enough good things about PS 178’s ASD Nest program.

These schools worked and are working for my son, but every kid is unique; some who thrive in one setting won’t flourish in others. The good news is that there are a lot of great programs out there; the bad news is it takes a lot of time and energy to find what’s right for your child and your family. So as this school search season begins, keep in mind that sleep is overrated. If anyone figures out how to implement a 27-hour day, please let me know.