Parents who want to serve on the Citywide Council on Special Education (CCSE), or the new Citywide Council on English Language Learners (CCELL) now have until March 19 to nominate themselves. The original due date was March 12.
There is no change in the dates for the citywide “advisory vote ” by parents on April 26-30 and the actual selection by PA and PTA officers on May 11-12 . Successful candidates will be announced May 31.
The special ed council isbeing reconstituted to bring it in line with the August 2009 amendments to State education law. Now, CCSE members must include parents or guardians of all students with individualized education programs (IEPs), not just parents of District 75 students. The CCELL is a new council established under the August law. Candidates must be parents of students in programs for English Language Learners.
On February 4, ARISE , a coalition of individuals and 24 organizations of which AFC is a member, issued a statement charging that the Department of Education’s plan to reform special education does not go far enough.
The DOE’s plan states that “every school should educate and embrace the overwhelmingly majority of students with disabilities,’ but that a “cohort of students….with highly specialized needs will continue to be clustered in specialized instructional programs.” The DOE confirmed that District 75 will continue to serve those students.
According to Maggie Moroff, coordinator of the ARISE coalition, the plan falls short in two ways. First, while encouraging and supporting principals to institute recommended changes in special education, there is no mandate to hold them, or officials in the department, accountable for doing so. Second, although the DOE’s plan calls for the development of new programs, “it has done remarkably little to marshal the work [already] done in New York City schools and in academia.” Incorporation of existing successful programs could speed up implementation, she noted. Click here for the ARISE statement.
Our house, like any other with a 6-year-old, has its share of “No’s.” “No shoes on the couch.” “No getting wild in the house.” “No using the word ‘stupid.’” But there is also one that is autism-household-specific: “No talking about that anymore.”
For example, Brooks will ask: “Is MOMA like the Guggenheim? It’s similar, right? Is it similar? Not the same but similar.” And when we say “Yes, it’s similar. They are both museums,” he can easily go on for an unthinkably long period of time discussing the definition of similar and all the things he knows about that are similar, and he constantly wants us to chime in to validate his understanding of the concept.
We know that this is a combination of comforting himself with predictable facts, streamlining his sometimes disorganized thoughts, and simply his age-old habit of getting stuck in repetitive patterns. So we try to thin out our diminishing patience, and we remind ourselves that even though he still does this, he does it less and less, and that eventually, he will learn to stop talking in circles. (more…)
Someone asked me: do I worry my daughter will be “labeled” by getting an IEP (Individualized Education Plan) and switching to the CTT (Collaborative Team Teaching) classroom? That’s a good question, and if I had been asked years ago, hypothetically, I would have said yes. But right now, my answer is absolutely not.
I did most of my worrying in the days when everyone told us not to worry about Night Owl, yet we fretted because she struggled in the realms of word retrieval and spatial organization (puzzles, blocks, letters), among other little clues. It was my husband’s and my persistence that led us to more in-depth evaluations, and finally, the documentation we needed to get her services at school. Right now, if the label of a learning disability is what it takes to get the right kind of help for her, that’s a positive thing. (more…)
I have written many posts about how much I love PS 178, Brooks’s school. It is extraordinary. Period. This is not news.
But I thought it might be an interesting exercise to try to articulate what makes it so good, and for that matter what makes any school good. Especially at this juncture in New York City public education where 20 schools have proposed closing dates, based in large part on consistently low standardized test scores. Since I am skeptical about this kind of data being a reliable indicator of a good education, I wonder about alternative measurements. Is it possible to boil the essence of a good school down to a few bullet points? (more…)
It’s Sunday, the last day of holiday break, and at 4:30 my daughter proclaims she’s ready for a bath.
“But what about dinner?” I ask. “You haven’t even eaten yet.”
“No dinner!” she insists, hopping up and down for emphasis. “I’m ready for bed. I want tomorrow to be here.”
This, from a child who normally uses superhero powers to stave off bedtime, is remarkable, to say the least. But she has a reason for wanting to fast-forward the night: in the morning, she’ll be switching to a new kindergarten class, and one of her best buddies is in it. (more…)
A new batch of future-kindergartners will be “turning 5″ soon, and the Department of Education is preparing for their arrival. The kindergarten admissions season is set to begin Feb. 1 for children who will turn five in 2010. The pre-K admissions season will open a month later, on March 1 according to the DOE’s timeline. Eligible students are those will turn four by Dec. 31, 2010.
Turning 5 Fairs for children with special needs will begin on Nov. 30. Taking place across the city, these events acquaint parents with the public school special education admissions process. The 2009-2010 guide for “Preschool to School Age Orientation” will be available soon on the DOE’s Special Education website.
In January, a handful of schools in District 75, which serves only disabled students, will hold open houses and tours.
Many public schools are already scheduling tours and open houses for prospective parents. For dates, it’s best to check the school’s website or call the parent coordinator.
Uncertain of what is your zoned school? Visit the DOE’s School & Zone Finder or call 311. Looking for another option? Search for “unzoned” or “charter” schools in the Insideschools Find a School section.
Marriage is hard. I don’t know of any husband or wife who hasn’t, at some point or another, experienced this lifetime commitment as tiresome, uninteresting, and relentless. Even when you love your husband and he loves you and your relationship has already earned the depth of decades. And even without an autistic child thrown into the mix.
Raising an autistic child apparently increases divorce rates to 80%, although I have not been able to find a reliable source for this oft-quoted statistic. I’ve seen some of these marriage breakdowns first-hand, and I find them especially sad.
I am hardly cocky enough to claim that I know the secret to staying married, but since my husband and I both celebrated our birthdays recently, I have been thinking a lot about what keeps us together. And perhaps, more importantly, what fails to drive us apart. (more…)
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…)
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.
Yamilka, a 23-year-old Bronx native, was unable to read street signs well enough to get back home from an unfamiliar subway station. This despite being promoted from grade to grade in New York City public schools — and even graduating with a special education diploma, a diploma she regards as meaningless.
Hers is a shocking story, even for those of us who have been writingabout NYC public schools and students for years . Yamilka’s story is one of several cases documented by Beth Fertig, an education reporter for WNYC radio, in her new book “why cant u teach me 2 read?” which was featured in USA Today yesterday.
Fertig tells the stories of three young adults - all in their twenties - who cannot read. All three have learning disabilities and were clients of Advocates for Children of New York (the parent organization of Insideschools.org). After the public schools failed to teach them to read, Advocates fought successfully for them to have private tutoring to try to make up for the years of service they had never received. (more…)
Like many other kids on the spectrum, Brooks never developed imaginative play naturally.
Since my husband and I are both writers, this was a particularly devastating part of our son’s diagnosis. He might grow up into someone who never recognizes the intrinsic value of a good story. On top of that, we knew that the kind of symbolic play that eluded Brooks was a major social-emotional milestone, and that without it, his social connection to the rest of the world would be compromised.
When our therapists patiently explained to us that these skills could be taught, I was a huge skeptic. I mean, I understood that you could teach Brooks to play with his teddy bear. Step by step, you could show him how to hug the bear, give the bear a turn in a game, but it never sat well with me that he didn’t have a natural inclination to WANT to play with the bear. And without that, I worried that his imaginative play would always be robotic and “learned.” (more…)
Author’s Note: All quotes below about my son’s program are are from a recent article, “The ASD Nest Program” in “Teaching Exceptional Children,” a peer-reviewed journal in the special education world.
On Sept. 9, the first day of school, Brooks became an official “Nester.”
What that means is that he successfully transitioned from last year’s Intensive K, a self-contained class of six kids on the autism spectrum, to a Nest K, an integrated class with 12 students, four of them autistic. Without taking anything away from how hard Brooks worked last year and how hard his teachers and therapists worked to get him to this next level, I would be remiss not to also acknowledge the good fairy who seems to have perched herself on my little boy’s shoulders ever since his diagnosis, and who is thankfully choosing to stick around for another year.
Although my husband and I have always been philosophically inclined towards an inclusion special ed model, we also fully understand how difficult it is to implement such a model effectively. Not only do the ASD Nest folks get it right, they make it look easy. (more…)
This past spring, I wrote about Rupert Issacson, 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.
As a follow-up, Issacson produced a film that chronicles his story that is being released in theaters this week. Here in New York, it opens at IFC on Wednesday night, with a special appearance by Isaacson on Wednesday, Thursday, and Friday.
Two weeks into the school year, some students are spending more hours on school buses than they do in some classes. Lindsey Christ, former Insideschools staffer and now NY1 education reporter, reported Monday that a Queens kindergartner commutes for two hours on a bus to get to a school located just 10 minutes from his home.
The Daily News reported on students in the Bronx who have been denied busing because their school, the Urban Assembly School for Wildlife Conservation, moved from one district to another. A Department of Education official was quoted saying that buses do not cross district lines, except in cases of children who transfer schools under the No Child Left Behind law.
Special education students are bused across district lines, if their Individualized Education Plan (IEP) specifies that they need a program that’s not offered in their district. And, it is the families of special needs students who most often have busing troubles, especially at the beginning of the school year.
Advocates for Children coordinated an effort to monitor special education placement at enrollment center across the city to identify and track common problems experienced by parents during the first two weeks of schools. Many parents told the monitors about transportation problems, including busing.
“A number of parents we spoke with expressed concerns about busing and transportation – some of them quite egregious,” said Maggie Moroff, special education policy coordinator at AFC. “We are working to assure those families have the information they need to advocate for themselves, and helping out wherever possible.” (more…)
Chancellor Klein announced yesterday that public input will help direct the allocation of this year’s Contracts for Excellence funding. This should be a heads-up for parents and educators who have long been frustrated with the city’s educational spending decisions.
The Contracts for Excellence funds support programs aimed at students in greatest need: English Language Learners, students in poverty, students with disabilities and those with low academic achievement. These funds are to be spent in six specific program areas: class size reduction, time on task, teacher and principal quality initiatives, school restructuring, full day pre-K ,and ELL programs.
Class size reduction has been a consistently hot topic in the educational funding debate with Leonie Haimson of Class Size Matters, one of the fiercest advocates. “If you believe that your child is not receiving the education he or she deserves because of overly large classes, you should attend these hearings, speak out, and demand that the State Education Department provide stronger oversight so that NYC complies with the law,” Haimson says in a press release this week. (more…)
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 Globespotlights 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…)
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…)
My husband and I shot each other that incredulous look that autism parents treasure, sharing a “did he really just say that?” moment.
One of the reasons I’m so over-the-moon about this particular success is that I made it happen: I designed an intervention, I implemented it, and, miraculously, it worked. No, I take back “miraculously.” It worked because of the years of careful training I received from my son’s extraordinary therapists over the years. They may not come to the house a few times a week anymore, but they continue to propel Brooks forward all the same. (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.
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…)
When Lydia Bellahcene’s son “E.E.,” who struggles with a reading disability, was picked from a lottery to attend Williamsburg Charter High School, she was elated. “I thought my son could be successful. He would be given the support he needed. I had no red light, yellow light to be cautious because they had an IEP team [a group of administrators who ensure special education students receive services].” Although her son worked with a special education reading instructor every day for 45 minutes beginning in 3rd grade at a regular Department of Education school, when he began 9th grade at Williamsburg Charter in 2007, the specialist was promised, but never appeared. As a result, he failed 9th-grade English, became depressed, and was forced to continue to wear the 9th-grade green uniform the following year, while his friends wore the gold 10th-grade Williamsburg Charter shirt, said Bellahcene.
Charter schools, which operate outside the city Department of Education and select students through a lottery, have become increasingly controversial as their numbers have grown. This fall an additional 24 charter schools are expected to open, bringing the total in New York City to more than 100 schools. As charter schools proliferate, and in many instances, post higher test scores than neighboring regular schools, some parents and advocates claim the schools are “creaming,” enrolling only the best students and ignoring disadvantaged populations.
“Those charter schools are not serving the main population,” said Aixa Rodriguez, a Spanish teacher who worked at International Leadership Charter School in the Bronx. She said students requiring extra services were pushed out. “They’re serving a boutique population…You’re not going to have a whole line of parents on welfare whose kids are PINS,” referring to the warrants parents place on run-away youth.
Charter school advocates disagree. “When somebody says a charter school is creaming, what they’re not telling you is there’s no way on God’s Earth you know who you’re getting,” said Jeffery Litt, superintendent of the Carl C. Icahn charter schools.
Charter schools claim they outperform neighborhood schools while enrolling the same student demographic. Opponents argue that charter schools only attract children whose parents are involved and invested in their education, since the parents had to seek out a charter school and fill out an application by the April 1 deadline. Additionally, because charter schools operate independently of the city DOE, opponents say there is no oversight to protect the most vulnerable students – those who don’t speak English or require special education services.
An analysis of student data involving some of the most challenging students to educate, students who are homeless, special education students, and English Language Learners (ELL), shows that charter schools don’t serve or enroll the same students as local public schools.Homeless students
In New York City, 51,316 public school students are homeless, and only 111 of them attend a charter school, according to Jennifer Pringle, director of NYS-TEACHS, a state-funded group that provides assistance to schools, social service providers, and families about the educational rights of homeless students.
“With many charter schools, you have an application process. It’s not just you can show up at the school on September 1st and register your child,” Pringle said, “and many families in crisis aren’t in a position to see that process through.” Although most city charter schools are located in low-income neighborhoods, 34 charter schools enroll no homeless students. In East New York, Brooklyn, a politically-forgotten neighborhood with decrepit buildings and the infamous Pink housing projects, nine homeless shelters are located near Achievement First East New York Charter School. The school does not enroll any homeless students.
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:
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.
“I do not believe that my husband and I have healed our child. We do not even know what normal is, what finished looks like, what neurological and environmental hurdles we are still facing. We don’t know what could have been done that wasn’t, what shouldn’t have been done that was. The only truth we have in our house today is that we have given our son the room to heal himself…Jeremy has responded to kindness, and how surprising can this be? He’s just human, like the rest of us. Carving out his place upon this planet.”
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.”
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.”
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.
Insideschools.org is an independent, non-profit website devoted to informing parents, teachers, and students about NYC public schools. The InsideSCOOP is a venue for Insideschools staffers and guest contributors to provide news, analysis, and their own opinions about public schools. Please note that views by our columnists are not necessarily those of Insideschools.org or Advocates for Children. For general comments or questions about education and schools in NYC, visit the Insideschools forum.
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Claiborne Willams Milde has two daughters in public school and writes our "Kindergarten Corner."
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Donya Rhett, PhD, is a public school parent and a clinical psychologist in a school-based health center.
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Jennifer Freeman is a long-time contributor to Insideschools who now writes about the movement in schools to be "Going Green."
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Liz Willen is the assistant director of the Hechinger Institute on Education and the Media at Columbia University. She has two sons in public schools and writes both "Middle School Muddle" and "High School Hustle." Liz's posts »
Marni Goltsman is the parent of a 7-year-old in PS 178's ASD Nest program. She was a Web Developer here at Insideschools until February 2010 and now handles web development and social media at the Paley Center for Media. Marni's posts »
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Judy Baum("Ask Judy") was a Public Education Association information specialist before joining Advocates for Children. Judy has visited many schools and observes the current scene both as an Insideschools volunteer and as the grandmother of a public school student. Judy's posts »
Dr. Jane S. Gabin ("Ask the College Counselor") is director of college guidance at The Frisch School in Paramus, NJ. Before that, she was a college counselor at LREI: Little Red School House & Elisabeth Irwin and the United Nations International School in Manhattan. She was an admissions officer for 10 years at The University of North Carolina at Chapel Hill. Jane's posts »
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