Wednesday, August 1, 2012

Wednesday's Woman: The Real Superwoman, Part II

What is Wednesday's Woman?
Courage, honesty, authenticity, and humility--any characteristic that speaks to the power of what can happen when we are in touch with our own humanity.  She can be famous or unknown.  She can be working wonders at home or on a global scale.  A Wednesday's Woman inspires.

Stacy Gill, who blogs at One Funny Motha, found someone who, without question, fits the bill.  Part One of her piece, The Real Superwoman is extraordinarily inspiring.  Part II is no less extraordinary. 

Read Part One here, follow Stacy on Twitter here, and read her humorous musing on motherhood and life at One Funny Motha. 

Wednesday Woman: 
The Real Superwoman, Part II
by Stacey Gill, One Funny Motha

When Ben was three Joanne and John decided to have another baby. Joanne had always known even as a young girl she wanted a family, but she made the decision about another child with much consideration and caution.  

“I don’t want to die having buried my only child,” she said. “But I didn't want to bring another child into the world with this disability.”  

So she did her homework.  

“Part of going to Chicago was finding out what the risks were in having another child.”  

When they’d originally seen the expert in Chicago, they learned the problem in her first pregnancy was most likely related to a blood flow issue in her placenta. It was rare and unlikely to happen again. “It was a fluke,” Joanne said.  
Still, she wasn't taking any chances. She saw a high-risk ob/gyn at Columbia Presbyterian and ordered up tons of tests.  

“We controlled everything we could,” she said. “I told the doctor I wanted every test.”  

Even with all the precautions, Joanne couldn't control everything, and after her second son, Sebastian, was born concerns once again began to grow.   

“He had five words at one, but at a year and a half he wasn't using them anymore.”  

Joanne took him to the pediatrician, but the doctor seemed unfazed. Joanne sensed denial, but she’s convinced the doctor’s denial sprung from his sincere desire to spare her from another shocking diagnosis. Relying on her instincts and her knowledge as a special education teacher, Joanne insisted on having Sebastian tested. He was diagnosed with autism.  

“We still went through the process to come to terms with the diagnosis, but it didn't shock us when we heard it.”  

Joanne hired a private speech teacher and entered Sebastian in a preschool where he would have a certified special education teacher working with him in the classroom. In his first year Sebastian made “phenomenal progress.” He began talking in simple sentences, and by the middle of the year he was even potty trained. To Joanne this was nothing short of miraculous. But in his second year his progress slowed and by kindergarten Joanne saw significant problems.  

Since Sebastian was a higher-functioning kid, he didn't fit the typical model for any of the special education programs offered by the New York City Board of Education. Without a program to specifically address his needs, the best solution seemed to be placing him in an inclusion classroom (one where special education students mixed with general education students) with two teachers, one general ed. and one special ed. But the teachers quickly began to complain of Sebastian’s lack of participation. Joanne asked about the various methods they used with him but wound up instructing the teachers on effective strategies.  

Joanne also worked with Sebastian at home. She tried to prepare him for participation in morning circle time by putting together what amounted to mini oral reports complete with photos each night. The next day in class, though, Sebastian simply read off the poster board.  

Then one day early on the school lost him. Although Joanne had warned the school that Sebastian ran away whenever he got scared or upset, he still managed to get away, and the school, which sat next to a highway, left their doors unlocked. Sebastian was found unharmed, but Joanne knew it was time to find a lawyer.  

“I stopped being the mommy and started to be the advocate.”  

Joanne once again started the rounds of visiting schools in all five boroughs including private schools just as she had done the previous year prior to the start of kindergarten looking for a suitable environment for Sebastian. She actually found a private school that was about to open a class for higher-functioning autistic kids, and it was already on a list of schools approved by the NYCBoard of Education. Joanne just had to get a referral from the BOE for Sebastian to attend the school. But the clock was ticking. The school only had a limited number of spots. Joanne pushed for a meeting with the BOE to determine Sebastian’s placement for the following year, but the day before her resolution meeting, she was notified the last spot had been taken at the school.  

The next day she got the approval for private school. “So I had private school funding and nowhere to send him.”  

By that point Joanne said, “Sebastian had severe school anxiety. Everyday he cried. Every day he begged me to find him a new school. I felt I had completely failed him.”  

This from a woman who did everything, everything, in her power to attend to the special needs of one child while simultaneously and often single-handedly caring for every need of her other son. That’s the curse of motherhood. No matter how much you do, you always feel you could have done more.  

“I never felt so desperate and depleted as I did after that experience,” she recalled, a telling statement coming from a parent with Joanne’s history.  

“I just wanted to walk my kids to school.”  

That was Joanne’s dream. To walk her kids to school. But the simple wish eluded her. She would never join the millions of other New Yorkers in the rather ordinary routine of walking their kids to school. Ben’s special needs required him to attend a school located in another borough and now Sebastian would need to be bussed (once Joanne found a school) elsewhere as well. Joanne and her husband even considered moving to Manhattan just to make the education of their two sons a little more manageable.  

“We’ll sell everything and move into a two bedroom in Manhattan, and we’ll walk them to school.”  

In the end the two New York natives sold their Brooklyn home and moved to the New Jersey suburbs to be in a school district that would serve the needs of both their children. And while Joanne misses the life she knew in Brooklyn, she’s certain she made the right decision.  

“On the last day of school when all of his workbooks came home, I opened them up, and they were all blank.” She realized then that kindergarten had just been “a babysitting service.”  

Through it all Joanne never stopped working her day job. She is a special education teacher in a preschool in Brooklyn, which she says in no way prepared her for the life she now lives. Although she no longer resides in the city, Joanne still drives into Brooklyn each day for work. She gets her kids off to school, leaves for work and returns home just in time to get her kids off the bus.  

“Sometimes I wish I could do another job. It’s good and it’s bad. I have a parent’s perspective, but sometimes I relate to the parents too much emotionally. I never get the break.”  

No, she certainly doesn't, which is what I find so astonishing. I’m sure we’d all like to think we’d do the same in Joanne’s position. We would remain strong. We would do anything for our child. We would persevere. But I question myself. Could I really do it? How can anyone do it? It seems almost beyond human capability. But Joanne manages, and she does so with her career, her marriage and her humor in tact. Those are things I find difficult to handle on any given day, and I’m not nearly under the strain Joanne is.  

I know I can’t change things for Joanne, but I can in my small way with this piece pay tribute at least to a woman who is remarkable in her extraordinary strength, unflagging determination and unbreakable spirit. More than admire Joanne, I am in awe of her.  

Joanne is working on a memoir about her experience raising two sons with severe disabilities.  Stay tuned to Sperk* and One Funny Motha for more information on the memoir.  

photo credit: atlnav via photo pin cc
photo credit: Patrick Hoesly via photo pin cc


  1. Thinking of Joanne and her boys. I hope she has a good support network for herself because what she does is monumental and stressful. I send her love and strength.

    1. Thank you for your kind words. I have wonderful friends and family. Even though they can't physically help me with the day to day stuff, their emotional support and acceptance of my boys give me what I need to get out of bed. Of course, my greatest inspiration comes from knowing all that I have to nothing compared to what my sons have to do.



    2. Joanne,

      This is beautiful: "Of course, my greatest inspiration comes from knowing all that I have to nothing compared to what my sons have to do."

      Thank you for being a Wednesday's Woman.

  2. Thank you for sharing Joanne's incredible, inspiring story. I've asked everyone I know with long years of experience with kids (doctors, therapists, teachers) — are we seeing an explosion of autism today? Or does better diagnosis account for the numbers (1 in 88 nationally, 1 in 49 in NJ). Like so many people, I didn't know any children with autism (or ADD, ADHD, etc.) growing up in the 1970's. The answer I've been given is in two parts; yes, there are more children with autism, and the cause is unknown. And yes, we are better at recognizing and diagnosing children.

    The other reality is, 30 years ago when I was a kid, children with special needs were not "mainstreamed" — so, if those children were living in my neighborhood, I was not aware of them or their families.

    Foremost, we owe our children (this generation, and the next, and the next) a discovery as to what causes autism and a cure; but equally as important, we must adjust our public schools and institutions to sufficiently provide for their education and care, NOW.

    We cannot expect individual families to struggle for solutions in isolation — and risk financial and emotional bankruptcy in the process. These are OUR children, too. We must, must, must provide for them.

    Stories like Joanne's (written so beautifully) will help to keep raising critical awareness of their daily struggles.

  3. Amazing. Heart breaking, spirit lifting amazing.

  4. This is an incredible, humbling, awe inspiring Wed Woman post. Thank you for sharing her story and ongoing journey. It really shows what strong advocates we have to be with both doctors and schools and how important it is to trust our instincts when we feel something is wrong. Incredible post!

  5. Joanne,
    You are Wednesdays Woman everyday of the week!!! Keep Rockin!


Comment moderation is on so you will not see your words here immediately. Sperk* loves feedback. She WILL see your words immediately, then post them in the comment section. . . unless you are spam. . . or someone named Sam. . . Anonymous is fine, just be respectful and kind. Thank you.