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.

How many hoops?

At this time last year, I was waiting to hear whether my daughter would be accepted to a local private school. I'd found the process grueling: Open Houses first...which school is the right fit???  Then, Psychological Testing (yes, for five year-olds), Play Dates, Site Visits, Financial Aid Applications, Financial Aid Awards, Deposits...how silly I was to gripe about any of it.  The process was so clear, the steps so nicely presented in a bulleted list...she's now on auto-pilot, and I imagine we won't have to really pay attention until it's time for College Applications, or if we decide to change schools mid-stream..

My son Elliot's journey, well, that's where we've earned our stripes as parents.  After he was born with congential CMV, we were given a list of resources, including Medicaid, Social Security, and Early Steps.  We aren't eligible for the first (even under the new earning guidelines), never pursued the second, and felt saved by the third. We should have done more through Medicaid at this point...keep reading.  Through Early Steps, a host of therapists came into our home and later, his childcare to teach us all how to best help him.  It was a godsend, and shaped our parenting so dramatically.    Unfortunately this service ends when the child 3.  So what then? 

Public schools don't have 3 year-old programs.  If your child is 3 yo, you can bring him to public school to receive this services, then bring him home/childcare.  Your other options are private therapy, or if you're lucky enough to qualify and high enough on the wait list, Children's Hospital has therapy services and offers assistance to cover the cost.  Orleans parish is just getting back up to speed, and is able to send teachers to your child's center.  However, we reside in one parish (Jeff) and Elliot's childcare was in the other (Orleans) so Homebound wasn't an option for us.  You can trust that your childcare center can use modifications and interventions.  But truthfully, there's not enough education and training for these dedicated professionals to be able to fully understand the scope of many disabilities, and implement what's most helpful. And frankly, that's true of most certified teachers in this state.  To get your child's needs met,  most families create weekly schedules that are more complex than Sean Payton's best plays.

Elliot's 3 year of life and therapy looked something like this: 

Ok-today is Tuesday?  You go there, and he goes here, and at 10 oclock bring him here and then this afternoon, we'll pick up him and her and go there.  Got it??  BREAK!

This included childcare at Abeona House, 2-3 mornings at Bright School, 2 afternoons at Children's Hospital, 1 monthly visit at Crane Rehab, and 6 specialist visits sprinkled throughout...all while we were pregnant with bundle of joy number three!

Can we meet you for a playdate, or soccer or gymnastics? Um, not likely.

You can see why we were looking forward to having a comprehensive therapy plan through the public school system when Elliot turned 4.  This process was no cake walk either.  First there was the Eval at the district office.  This whole process was rather frustrating.  One tester seemed exasperated with Elliot's distractability with her test questions (and my own guffawing)...after 2 hours of testing, lady.  He's 3 and a half! 

We were then given the option to have him in a half-day program for children with special needs.  This half-day program idea is ridiculous.  Who are these people who can do this?  And does it really benefit the child?  Even though the school program seemed wonderful, we opted out of this because it meant more days that look like the diagram above.  Elliot spent another year in childcare with loving teachers and lots of play.  Therapies too.  

We put-off a lot of school searching with Elliot's participation in Abeona House.  I can't imagine looking for suitable childcare for a tiny baby with special needs.  This network of support and knowledge was critical in his development, and mine. 

So when we were done there, the big world was waiting.  And as I just got off the phone and learned even more about services for the disabled, I don't know if we'll ever know enough.  There always seems to be another hoop to jump through.

In year 4, it was Pre-K 4 & THE IEP.  The Individual Education Plan is where you explain what supports your child will need to be most successful in the least restrictive environment.  It's where you think throughou how your child communicates, eats, pottys, learns, etc.  Note to parents- You have to know your kid, and what works for him/her and include it all in your IEP.  If your child has sensory issues and is adverse to certain kinds of toilet paper, include it.

The caveat: Public Schools only provide therapy and interventions that will help the child function within the school system.  If he/she is lacking a skill that doesn't affect his functionality at school, it's incumbent on the parent to seek private therapy. 

We haven't had a great experience with our child in the public school system.  The absolute worst of it was my son telling me as he snuggled next to me at bedtime that his teacher had hurt his arm.  I made clear to his teacher that whatever had happened was not OK with me, or with him.  Mostly, I was grateful that I have a child that can communicate to me.  I also wondered, and continue to wonder, how many times in this process will I feel like I'm playing a game with the system, with my son's teachers, as I dance between getting him what he needs and not pissing too many people off?

The good news, though, is that Elliot is in a typical classroom, with an aide who assists 2 other children and him.  This is really the optimal learning set-up for him.  However, the school's Special Ed kindergarten is a joke: kids are in the pre-K building, and "Go over for inclusion (groan) once a day, unless it's raining."  The SPED kinder is a mixed-age group of kids 3-6.  NOT FOR EL.

So what are our choices as we look at kindergarten?  This question has led me on this year's journey of  disappointment, frustration, and new insights.  If sharing can spare you any agony, please read on:

-Public Schools:  Just because public schools are legally required to serve your child, don't be lulled into false complacency-this is still a system that needs to be navigated, and like most anything, the squeeky wheel gets the services, or something like that.  

• 
  
  Befriend someone on the inside...an administrator who can look at the system objectively, help you navigate the inner workings, and connect you (or give you the names) of the people you need to talk to.
• 
  
  Ask for what you want, or find out what you need to do to get it.  I know Elliot thrives in an inclusive environment.  I'll ask how this can happen in his district school, his Pre-K 4 school, and other schools 100 different ways to everyone I talk to.  Each conversation yields some bit of info.
• 
  
  Don't foget advocacy groups: Families Helping Families will connect you with a lawyer for your IEP meeting if you're meeting resistence in having your child's needs met.
• 
  
  Start asking questions for the next year right after Christmas.  That's when schools are in the planning and staffing stages...if you wait too late, your child and his needs won't go into the planning.
• 
  
  Kindergarten Special Ed programs are not in every school.  Find out where these are to begin your search.  If you want an inclusive program, you probably still want access to SPED services...
• Talk to parents.  Any time I see a parent with a disabled child, no matter what age, we have a conversation.

Catholic Schools

I am pretty sure that Jesus would open his arms wide for my child, but no so at most Catholic schools, and even when they do, there are limitations.

• Most that I have found don't serve SPED until 1st or 2nd grade, and even then, it's depending on the nature of the disability and how independently your child can function. 
• SPED usually means a resource room that assists children who are slower learners.
• Many won't even accept children with 504 plans--plans ensuring minor modifications, like preferential seating.
• The one or two that we have learned will take our child are loving environments but expect us to provide a child-specific aide.  Tuition (w/ no financial aid) + aide = No Way.

Child-Specific Aides

• You may be able to have one of these through your public school.  Elliot currently is with a SPED aide in a typical classroom. I'm hoping he'll have one in 1st grade at his district school.  (Erin, if you're reading this, any info you can add would be appreciated!)
• If you participate in Children's Choice (also known as the New Opportunities Waiver), you can have a child-specific paid in part by the gov't and you at the school of your choice.  The caveat: You should've applied for a Medicaid Waiver NINE YEARS AGO...like, before I was even thinking about getting married.  It's worth getting on the list, though, I hear from a parent who has a Child-spec at a local Catholic school.  To do so, your local office of disabilities will come down an eval and see if your child meets the criteria for the Medicaid Waiver, and will send the Statement of Approval to the Medicaid Waiver office who will contact you.  If you participated in Early Steps, they will post-date your application (which will bump us up a few years).  Read this, and weep, Republicans.  I'm sure these are the services you're always trying to cut.  Guess what?  We need them all.
• My friend's recommendation: child specific's will come through the agency.  You probably won't like who they send out.  She hired her person, and asked the agency to hire them too...they pay for this person together.

Private Schools

Like Catholic Schools, each of these vary, but for the most part, private schools have homogenous populations.  Unless you have an older sibling participating in the school, you may not even have a serious conversation about whether your child can participate, as I found during my search for Ana's school last year.  Even then, I'm imaginging these schools expecting you to provide a child-specific.  The good news is many private schools offer financial aid.  Again, no therapies are really available at private and parochial schools...you can't drop the ball on this.

What now?

We are most likely going to remain at H Park, but this crazy journey has helped me know that I need to write a letter requesting a child-specific in the typical classroom.  If this idea is rejected, we will be somewhere else.  Exactly where that would be, we don't know.

And before he starts wherever, there's a summer camp to find.  *Sigh*  It's exhausting, but what wouldn't we do for our guy?  He deserves it all.

So Special

Me: Hey, Ana. I heard you had some questions about Child A (a child with special needs).

Ana: Yes. Is he--um--special? **

Me: Yes, he was born with some challenges. All of us have things we need to work on, some are more obvious than others. Like Ell works on using his left hand. What are some things that are challenging for you (I'm thinking, pottying).

Ana: Oh yeah. That's easy. Like Jumprope.

Me: Yeah, like jumprope.

___
**Re: terminology...I've grown into using "child with special needs" (vs. "typically developing"). We don't use the term "special," and I generally shirk to its usage, particularly because it's used in a casual/drerogatory way as in "her haircut sure is 'special')...Ana's just putting her on words on what she's observed. That these kids tend to stand out a little bit because they are different. Or maybe she's noticed the extra dose of love El seems to have, and that, is indeed, special.

Resisting the Urge

to breakdown and cry, kicking and screaming
after touring yet another school
that seems terrified at the prospect of
A Child with Special Needs.

Is it too much to ask that my children go to the same school?

On the drive home, this is what I read in the Information Packet:
X does not provide special education services or facilities.
THe administration reserves the right to determine if the academic program of the school is appropriate for the needs of the individual child and may make minor adjustments in the school's education program to attempt to accommodate whatever special needs a student may have. If the principal determines that these minor adjustments have not resulted in satisfactory accommodation of the program to the special needs of the individual child, and that it is in the best interests of the school and teh child that he/she be placed in a more appropriate learning environment, then the principal may ask the parent to withdraw the student from X.

What did you just read? I just read that it's just SO damn inconvenient to have a child that doesn't fit right into that cookie shaped mold. I wish this was unique to this one place, but everywhere I go, when I ask about a child with special needs, I'm met with the same fear and controlled panic.

And instead of feeling like they don't know what they're missing (they don't), and that I don't want a school that doesn't want us (I don't), I'm beginning to feel hopeless. That there is no place for both my children, no place where the lessons of diversity include ability. I'm feeling less like I can work to revolutionize inclusion, and more despair, and I am praying for the strength to fight, because I have a lot of fighting ahead of me.

Where do we belong?