Closing in on the Finish Line

Dear friends,

It's one week away from the Crescent City Classic and soon, I will be running out there with 20,000 other New Orleanians. Among them, there will be a contingent from Abeona House: children, parents, teachers, and even our chef! We will be sweating and smiling, and hope to bring awareness of our our organization. I'm writing to ask you for your support, as we are also raising money for our scholarship program in conjunction with the race. There is a massive FUND-RACING effort happening among our participants, as we compete to ensure our ability to serve an economically diverse population while providing a liveable wage for early childhood educators.



Since our move in December, 4 short months ago, we've doubled in size, begun accepting childcare subsidies for low-income families, and added a delicious and nutritious farm-to-table food program. It's been wonderfully gratifying to see "my baby" grow up a little, and see our many of our goals come to fruition. We wouldn't have been able to do this without your support, friendship, and belief in our mission.

As a parent, I've personally reaped the benefits of this program. My children have flourished. Yesterday, I had the bittersweet experience of meeting with Oliver's teacher to discuss his progress. While looking over his portfolio, his growth so painstakingly and beautifully documented, we begun to talk about when my preschooler will move on. We stopped for a minute and saw a picture of him talking with his friend Cadence...beneath it this conversation:

O: When we get married and have a baby, you can work and I will feed the baby.

C: I not have a baby. I am busy.

O: I will take care of the baby...OK??

As I flipped through images of Oliver problem-solving and hypothesizing, I could see that his individuality and humanity were of such value. I'm so grateful that he is seen, heard, and nurtured. I wonder what he will choose for himself as an adult, and know that he will know how to love and be loved.

 

 

But it's not just about my kid, or the three of them. It's about making children visible. Sharing with the world how inspiration, curiosity, and ideas shape powerful experiences. And honestly, how the values that young children have should be the influences that shape our "adult" world. Kindness. Compromise. Sharing. Caring. Listening. Using our words. INCLUDING all children, regardless of ability. This is what Abeona House is all about.

So I ask you to support this work with a donation of $5-$5,000. With your donation, you become a part of this wonderful work, these values, and our continued success. Donate now through Paypal (www.abeonahouse.org), or mail a donation to Abeona House Scholarship Fund, 3401 Canal Street, NOLA 70119, and indicate that you're supporting Emmy in the race.

 

 

I'm always grateful for your support, in whatever form it comes. Thank you.

Emmy

Dreams Do Come True (Wasn't that our senior song??)

Well, it finally happened. This last year, something I've been working towards since just after the storm became a reality. I had begun to think it was a dream I would never make true. From our sweet and humble 100 year-old cottage, Abeona House MOVED. This wasn't just a change of space...it was a qualitative change, a move towards our shared goals. And if you're included in this email, it's because I know you care about my children, or my dreams, or our work, and have maybe contributed to any of these. I want to share with you what I've been doing since last September. It's really a dream come true:

*We have a new home at 3401 Canal Street in Mid-City, in a building that has allowed us to bring in 25 new families, bringing us to a total of 55 children served!

*We are a CLASS A center, able to accept children on ChildCare Assistance, including foster children. I can't tell you the richness this diversity has brought us, and I know that our center has been able to bring stability and joy to children whose lives are in flux.

*We have a wonderful farm-to-table food program of fresh, local food. Whole grains, a wide variety of vegetables and fruit, and innovative healthy dishes that build solid foundations for healthy life choices so that our little ones live a long time, and live well. My youngest, Oliver, a tentative eater, is now scarfing down lentil burgers, and asking for frozen mango at home. I know we are creating a model. I'm very proud of our food program and can't wait to add the gardening and composting pieces.

*My role has changed to include more teacher development, community outreach and strategic planning. I now have the support of a center director who manages the staff. I can focus primarily on the development of our organization. We can further our outreach to early childhood programs in the region.

And our work continues, because it's our goal to build our own center that will accommodate the demand for our work, parenting classes, and spaces for local teachers to learn, and dialogue. We aim to raise the quality of life for these teachers, and become a better employer, raising wages, improving benefits, developing teachers toward their dreams and goals.

So yes, I still have dreams to dream for Abeona House. But I know that some things will never change:

*Our work will always be based on profound respect for children.

*We will always work in close concert with our parents to ensure that our children have strong foundations for life.

*We will always be inclusive of children with special needs. My son, Elliot, was our first, and many more have come, and will come, after him.

*Our work will always be open to the community so that we can share our documentation, the development of relationships and the capacity of children with parents, teachers, and supporters.

If you're still reading, its because you want to support this work, or me, because you know this is important to me. I'm asking you to pledge to my run/walk in the Crescent City Classic for Abeona House's Scholarship Fund. I will be in good company, with my husband and 58 other parents, teachers, and community supporters who all understand the importance of this work, of making children visible, and empowering their teachers. This will be my fourth year raising funds this way. Last year, we earned $7000. This year, our goal is $12,000.

Your donation of $5-$500 will go directly to our scholarship fund for CCAP families and financial aid recipients. Please consider going to our website to Donate Now through Paypal: www.abeonahouse.org,
or drop a check in the mail to our new location: 3401 Canal Street, New Orleans, LA 70119.

Please indicate your donation is in my name, and do so before April 1 (That's no joke!). All donors will receive a sweet thank you, made with love by my children. It's important to all of us(-:

Six stories from the week Elliot turns SIX

Just last night, I was holding Elliot in Ms. Georgia's pool, and noticed I had cupped both my hands underneath his head, and was holding him out from my body, just like you'd hold a little baby when you'd want to look deeply into their eyes.  Staring back at me was a little boy, with 20 teeth in a wide, happy smile,  a fresh haircut plastered with pool water, and laughing eyes.  He only let me hold him like that for a brief moment before he said, "Mama.  Let me go.  I want to swim.  Mama, let me go."  I wonder if, all his life, he will be asking me to let him go.

Yesterday, Elliot stood on the deck of the same pool, and put his head down on the side...I thought for a moment he was going to do a dive.  Instead, he let himself roll forward into a tumble.  He had done a tumble set into the pool. Ana shook her head in amazement.  "How did he do that?"

The night before his birthday, we came home from another night of swimming, and passed out in a heap on our bed.  At 2:30 in the morning, Elliot woke up and seemed uncomfortable. After 30 minutes, we discovered that his back and buttocks were covered with hives.  These returned an hour before his birthday dinner the next day.  My mind has been swirling with a sense of impending doom.  I have heard too many stories of late-onset nightmares...You, you party hard, and ask for your presents. 

Elliot returned to the pet store with Kevin to get some other necessities for his birthday turtles, whom he's named Ang and Kitara. He reaches into a pond, pulls out a large turtle who bites him on the chest. He's afraid and hurt. He returns home and gets cleaned up. 10 minutes later, he's asking to hold his turtles.


On Sunday, we are going on a bike ride.  You seems tired and sluggish, and can't get too far.  Ana has zipped forward, and is looking for locusts in Ms. Nancy's crepe mrytle.  We get stuck several houses down.  The neighbors come out with their dog, and the owner proceeds to play fetch with a soppy ball.  Within minutes, you are in charge, whipping the ball out, laughing gleefully as it's returned to you.  Oliver gets off my bike, wanting a slice of the action.  You engage the neighbor, and then her husband, and then their friend in several conversations.  Mr. Kyle drives past and you begin asking him about his new car.  A few minutes later, the neighbors ask if we'd like a big bag of shrimp.  That a friend gave them 60 pounds.  I motion Ana to come back to us, and we begin the trek home with our bag of enormous, dripping shrimp.  We only make it about two houses.  You are really struggling on your bike.  A second later, the neighbor comes by in her fancy dog grooming van,  and asks if she can give your bike a lift home.  You cry as she puts  it in the the van,  and she offers you a lift too.  You climb into the passenger seat, grinning from ear-to-ear, and begin your 20 questions about her amazing ride.

Last night, as you went to sleep next to me, you gently played with my earring.  Your body seemed long, as you stretched out in the bed, your lids kissing your sweet cheek.  Where has the time gone, my love?

Elliot's big announcement

This spring, like most other parents, I set out to find the perfect summer camp for my children.  Ana has attended a popular uptown camp for the last 2 years, and has come from these experiences with a broader understanding of the world, a host of new friends from different schools and backgrounds, and personal growth.  I wanted these same things for Elliot.  Last summer, he was "home with dad," with no camps that we knew of taking children that age who weren't potty-trained.  Despite her love of camp, Ana envied Elliot's "free" summer...I felt we'd failed to continue Elliot's learning, growth and socialization.  I was determined that this year would be different.

Ana's Camp, The J3wish C0mmunity Center, did not feel that his needs could be met there, and in talking with the director, I doubt they will ever dedicate the energy to create a more inclusive camp experience.  If we had endless resources and could afford the hefty camp fees plus a daily personal attendant (which is more than Elliot needs), then he could go anywhere.  But this is not our reality.

From my research, the only option for Elliot was Camp Ra1nbow, run by Jeffers0n Parish, Parks and Recreation, a camp for children with disabilities.  Elliot would be 2 months shy of the age 6 requirement.  I learned through pointed questions, that a birth certificate would be required...but that a strong letter to my councilperson, the city attorney, and supporting documentation for our child's therapist might go a long way.  I got to writing those, and was surprised at the efficiency of the city's response.  By the end of the week, I was informed that Elliot would be allowed to attend the camp.  And while this camp for children with special needs would not assist in the diapering and potty training of my child, "we'd figure something out."  I was so excited, and began talking with Elliot about CAMP!

In the meantime, I learned about a camp being led by a former dance teacher of Elliot's: Kid's Play NOLA.  I contacted the director, Dana Reed, and asked if she felt that Elliot's needs might be met there, and if we would assist in diapering once a day, would they make an accommodation.  She said we'd try it out...

On paper, I think my child scares people, although I believe there are a lot of fears about children with special needs and inclusion because camps simply exclude them, and don't challenge themselves to do more.  And granted, with many of them simply hiring staff a week or so before camp, I don't want them taking any risks with my child or any one elses.  Something about this needs to change...

So our plan for the summer was 2 weeks of Camp Ra1nbow, 2 weeks of Kids Play NOLA, 2 more weeks of Ra1nbow.  There's something to be said about bringing your child to a special needs experience with a wide range of development.  When dropping Elliot off, I could see that some children had severly limited mobility and speech, cognitive awareness, social skills, etc.  We were bringing him to a Jeff Parish playground, so the environment was not prepared for children...concrete walls, banquet tables, etc.  Elliot LOVED seeing the basketball court, and that's where we said "goodbye," and he was quite happy. As Kevin and I walked away, we talked about the staff, and how lackluster and uninterested they seemed, especially for a first day and first meeting of a child.  I had a nagging feeling, but dismissed it...I so often have to talk myself through these new experiences with Elliot (otherwise, I think he'd still be at home!)...

We made our way there for a mid-day diaper change (such a pain that this is an issue), and by the time we picked him up at the end of the day, he seemed happy but ready to go.  After the first two days, it seemed that every time I picked Elliot up from camp, the TV was on...and teachers were on one side of the room,volunteers were playing board games with EACH OTHER, and there was nothing inspiring really happening.  I have nothing against TV, but the times we picked El up varied greatly (1, 1:30, 2, 2:30, 3, 3:30, 4)...always the TV.  One day, he grabbed the remote, and as I told him to put it down, the teacher interjected, "He's probably just pressing the 'Play Again' button."  Yeah.  Probably. 

We'd worked out a payment plan with one of the volunteers to change him ($40/week), so that was easier, but why were we driving him here each day?  In so many ways, this population needs an exceptional staff who can help bridge relationships across abilities, challenge the children's growth, engage them in new ways of feeling and experiencing life...and instead, I felt like I'd dropped my child at an institution, where the world had given up on him and his beautiful friends.  The nagging feeling persisted...Do we bring him back for the last two weeks, and just look at it as daycare?  Kevin's work schedule required 2 early days, but we could make it work.

Well, we tabled the discussion, as Kids Play was starting.  This experience exceeded our expectations for what any camp can do.  Each day, we were greeted by happy counselors, and a collection of children enthusiastically welcoming Elliot.  We could see he was making friends and that the couselors recognized all the things that we love about him.  Elliot would come home talking about yoga, meditation, dance, drumming, and "jumbo, jumbo."  I contacted the director to tell her what an amazing time Elliot was having.  She wrote me a short email: "Elliot did a dance around the room today, and the whole camp cheered him on.  He is a joy, and adds so much to our experience."  I cried.  And read it again.  And cried some more.  Our child was being received in the same way we receive him at home--with great joy for his uniqueness, in celebration of his spirit.  Wow.

We were excited about Kevin's day of volunteering.  What would he learn about Elliot's day?  Kevin volunteered on the second Thursday of the camp.  The stories he came home with were beautiful-At morning meeting, the children gathered in a large room (the camp takes place on Tulane's campus in an arts complex).  Mr. Seguenon, a drum teacher of unknown African origin, led the children in playing a xylophone looking instrument with gourds at the bottom.  He would play a pattern of notes, and invite each child to try and replicate the melody.  Elliot was 5th or 6th in the lineup.  When it was his turn, the whole camp started chanting, "Go, Elliot, Go!  Go Elliot GO!"  Elliot took the stage, and after a few notes, called up a little girl to come help him.  She jumped up enthusiastically, and together they played.  At lunch time, a couple of friends assisted Elliot in opening his containers and those tricky bags of goodies.  At transitions, routines, there was a friend to give a hand...not too much assistance, but just what Elliot needed to stay on task, and do what he had to do. 

At the end of each day, there were children calling out, giving hugs, saying, "See you tomorrow, Elliot."  What was going on here?

Then, there was the Saturday performance.  The children would bring their decorated parasols and self-screened t-shirts to Ashe cultural center where they would participate in a recognition of the Middle Passage as part of a city-wide drumming experience (wow!).  I was nervous to leave Elliot there an hour and a half before the performance.  So much waiting for him.  Would he wander away, as he does so skillfully?  Would he have a diaper?  As performance time grew near, we returned to see, and from downstairs, I saw him try to sneak down the stairs, and then I saw Mr. Seguenon scoop him off the stairs, hold him close, and dance with him around the upstairs...Elliot smiling from ear to ear.  Another time, a group of kids sat on the stairs to block him in.  He eventually gave up and sat behind them.  When they were about to walk down the stairs with their parasols, I nervously imagined him tumbling down the long flight (he couldn't walk down while holding that in one hand!)...and then there was his teacher, holding his hand.  Calm down, Emmy.  They've got him figured out.  (And yes, if it sounds like I could use a vacation, you're right!).

The group second lined and drummed their way on stage, and there they sang, danced, and drummed.  At each bit, there was a child to remind Elliot of the move, help him get the cues, shoo him off the stage...twice, I saw him wander from back stage, and they got him each time.  It was a dramatically different Elliot than we saw at his first kinder-performance during which he simply sat on the stage staring out...quite shocked that there were now lots of people there staring at him.  This time, he worked to do what he was supposed to do, and there were a village of people there to help. 

The kids took a bow, and we thought it was over.  A man made an announcement, and the kids were filing out.  And then, there was Elliot, sneaking away from the group, and he had taken the microphone out of the man's hands. 

"Wait, Everyone.  Wait, Everyone.  You have to listen," Elliot said in a demanding voice, with his mouth too close to the microphone.  Kevin and I were surprised, our recording devices down at our sides.  I could see the man looking confused and trying to make a plan to get his microphone back.  He then made a decision, and picked Elliot up, and put him in the center of the small stage.  "Listen.  Everyone."  The crowd of 250+ grew silent.  "I LOVE YOU.  Thank you for coming."  And with that, he turned the microphone back over, and walked off-stage.

Off course, we sappy parents let the tears that had been threatening all day come, and shook our heads.  What love our son had been given, and what love he had given so freely.  I could see that he had received so much love, guidance and acceptance, but also that the children had been given the opportunity to lead, to encourage, to assist, and like all of us, to admire the tenacity of this little boy who has to work just a little bit harder to do the things we take for granted.  They were as grateful to him, as we were to them.  He had contributed to their wonderful summer.  And Elliot had felt it.  And had to let them know.  He had an amazing experience, and it had shaped him, given him all the things I'd wanted for his summer.

On the way out, there were photos...one girl, about 12 years old, saw Elliot taking a picture with a little boy and said, "You get to take a picture with Elliot.  No Fair."  We shooed her into the photo.  Here, he wasn't ignored, bullied, shunned, dismissed...he was really seen for who he is--a highly social, loving friend.  It was so beautiful. 

It goes without saying, we've withdrawn Elliot from the last two weeks of his other camp.  I don't know what we will do, and I don't care.  Hopefully they will refund us some money, but I don't care.  There is no added value with him at that camp.

Here's what worked about his Kids Play experience:

• Small size.  I imagine there were 40 kids from 5-12 in the camp total.
• Selective admission--the camp has an admissions process where children have to answer several questions as part of being a part of the camp; they also have to sign a code of conduct.  But these kids were just great kids.  They live that code of conduct each day.  Kevin says, "These are the best kids in the city."
• Exceptional staff--I can imagine that the attitude of the staff modeled so beautifully how to help Elliot, but not so much.  These are folks who really saw Elliot in totality.
• Mixed ages--Again, another opportunity for modeling.  Elliot has been in inclusive settings before.  At Abeona House, Elliot was the only child with special needs in the group most of the time.  His peers treated him as they treated the other children.  This is what we saw at the camp, with the added piece of the much older children who would model acceptance and compassion in a very powerful way. 
• A relationship--it's a good thing we knew Dana from before the camp experience.  I think this is why he was accepted, and why we could also communicate openly about our concerns.
• It's FREE?  Is that crazy?  Guest artists each day, amazing drums, exceptional staff...I would pay a premium for this, but through funding from a host of foundations (Arts Council, Keller Family Foundation, etc.) it is a free camp.  I have to admit, I wasn't sure this would be a quality experience because we weren't paying for it, but I was SO wrong!

We have NO plan for Elliot for the rest of the summer, but if two weeks of Kids Play is all his summer is--it's just fine with me.

**
Now for Mommy's challenge-
To parents of typically developing children:  Don't you want your child to have a diverse experience that includes children with disabilities?  Do you see what children like Elliot can add?  Ask your child's camp about their policies relative to children with disabilities, and ask every time.  Tell them you'd like to see more.  YOU drive the market.

To NOLA summer camps: Make a committment to these children.  If you don't have children with special needs in your programs, you aren't serving the community.

To NOLA funders: Demand inclusion of the programs you fund.  There are no choices for parents of children with disabilities, especially if potty-training is an issue.  Small accommodations can be made to give these children a rich, powerful summer full of friends and learning.  They deserve it.

A Shining Light

I found out this week that an amazing little person passed from this life.

He was born with a virus known as Congenital Cytomegalovirus (CMV).
He wore glasses.
He cheered on his favorite rugby team, THE SAINTS.
His name was Elliott.
He was 4 years old.

Even though he lived in Liverpool, I felt connected to this kid.  For obvious reasons.

I'm sorry I never got to meet the sweet little guy, but I feel like I loved him.

And you can see that his life was full of love.  And that love was inspiring.  I enjoyed meeting Elliot through the Christmas videos like this one, that Elliott's devoted dad would post each year. 

He was a shining light, and now Elliott is an angel, watching over his family and our special children who fight so hard to do what we take for granted.  God bless you, Chris.  Our thoughts and prayers are with you.

Reflections from Ana during a morning bike ride

A special treat--just time with Ana and me.  We rode from our house to the fly.

Me: Ana, how are you feeling?
Ana: I feel great.  I feel really good about me.  And you.

**

Mom, I don't get it.  Where does space end?  Sometimes I dream of outerspace, and I'm talking to these wierd people, but we're really
in a box, and around us, there is nothing but white.

**

I wish the bike path never ended...I could ride on and on forever.

**

Simple things

We are borrowing one of my parents' cars right now for yet another repair on the Volvo.
This morning, when I drove away from my home on my way to work, I enjoyed the sounds of
a tape in the deck...maybe Enrique Chia's clangy pounding that manages to sound romantic on the piano.
Sounds I'll always associate with my dad.  And I was thinking of how hard it is to connect with him,
how he doesn't engage, how difficult it will be to let go of that opportunity when he is no longer here...

Then the tape was broken with the sound of my father, speaking in a voice more sweetly than I knew
he possessed.  And he was repeating a name that's burned on a part of my broken heart...

Galito?  Galito? 

The voice repeats perhaps 20 times, sweetly, softly and searching...and then just for a second, I hear my brother's
adult voice in the background, saying something inaudible.  Then another song cuts in...I felt like I'd been touched from
some other world, or that there was some parralel universe where my father and brother shared only soft voices,
tender moments and Enrique Chia.

I wondered how often my father listened to this tape, and if he fast-forwarded through the music just to hear the quick
unintelligible mutterances of my long-gone brother...his only son whose name is written all over his broken heart, and I thought of my
sweet children and their tender voices, and how precious we all are to somebody.  We miss you, Galito.