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.

Reading Labels

So I met with two of Elliot's evaluator's today. It wasn't the official IEP, but I was there for other reasons, and wanted to check in on the process.

The opinions of a team of folks that met with my son for a brief 2 hour period have no bearing on my own assessment of him, his potential, or his life path. However, it does impact, potentially, how he would participate in the school system.

Would Elliot be designated as developmentally delayed? In the currently flawed system, this would mean he would be in a special class, and would participate, on a limited basis with his typical peers. This is the designation I was avoiding at all costs, and only knew that it would mean I would have to seek out other options for Elliot's education. I have seen the value of inclusion, and how my son thrives to do as his peers. In a classroom with the full spectrum of special needs, there's no telling how, or if, he might be challenged.

Today, I learned that his designation is OHI, Other Health Impaired. YAY! That means he'll receive Speech (for articulation help, not language development), OT and PT. Super! Most importantly, if we choose to enroll him in a Jeff Parish school, he would participate in a class with typical peers, and be pulled out for services. Ideally, this is what the model should be. A good teacher individualizes instruction, and works with support staff to incorporate modifications into her daily practice. The word is that this is what the parish is working towards. But things move slowly in Education. I'll give it five years at least.

Whatever label is slapped on my son, and his file, matters little to me. As long as he gets what he needs, and is in the Least Restrictive Environment (LRE), then I'll happily sign any IEP that comes my way.

I should say, though, that I'd already contacted attorneys at Families Helping Families in the event that I needed an advocate well-informed of the law. FHF is a great resource for families of children with special needs, and as one of those parents, well. You gotta be ready to fight for what you know is best for your child.

I don't know what we'll do in August when Elliot ages out of Early Steps. We may have him get therapies twice a week through Jeff Parish (this would be in a special class with special needs 3 yo since JP doesn't have a 3 yo classroom). Or we could pick up therapies at Children's Hospital, free through CHAP. In any case, he'll be at Abeona House next year. The inclusive classroom, and the loving teachers I trust so deeply are so pivotal in his development. I don't know where the Bright School fits in, and if we'll be able to manage driving to the therapies (instead of them coming to us) + Ana at a new school + baby. Let the schleping begin.

I'm fearful of losing his web of support. His therapists have done as much for Kevin and I as parents, as they have for Elliot. It's scary thinking of his future, and of how things change in larger groups and systems. But I do believe there's a lot of love out there. Some of the most amazing people I've ever met are Special Ed. teachers and therapists. I'm so grateful not to have to do this on my own.

In the doldrums

Tonight is the first night in 5 that anyone in my house has gotten a full night's sleep. If I ever needed reassurance that we do not want another child, it came this week.

Elliot has a raging ear infection. His right ear is oozing puss, and hurts so badly that touching his outer ear to wipe it, or even brushing against it when changing his clothes will yield the most painful cry he can muster. The good news is that it's in the ear he can't hear with (the right one) so at least he can hear. We have to be extra with-it around these ears.

For the last four nights, he has not slept. At all. We were poised for the emergency room yesterday...shouldn't the antibiotics be helping by now? There's nothing more we can do for pain than tylenol/motrin? But his on-call pediatrician and ENT both urged us not, recommending instead simultaneous doses of acetominophen and ibuprofen, and a super-dose of his ear drops, that also help manage the pain. And yes, he's slept soundly, but in a moment of panic I did wake up and make sure he wasn't in a coma. Poor guy. I hope he sleeps for a day. He certainly needs the recoup.

Of course during this sleep free marathon, he was the bright spark...happy all day. I was the over-tired, touchy grump. His ear infection comes during my own cold, and on the heels of Ana's week-long battle with strep throat. She now has something else (a cold?) even though she's just finished her round of antibiotics. Exhausting.

In the middle of this all, we have begun the process of looking for schools for Elliot and Ana. Next fall, Ana becomes eligible for pre-K, and Elliot loses Early Steps (in-house therapy) and will have to receive services through the public school system. This double whammy has me piqued to say the least. Here's what's guiding my process/anxiety:

• It would be ideal if there were a learning community that both my children can attend.
• I know there are "super-teachers" out there for children with special needs. Of course, we want one of those. Many of these loving professionals exist in schools that are lackluster. The word in the special needs community is, "you have to get in X class." I'm not feeling that. I want a super program, where the principal/director espouses a certain attitude of inclusion that is pervasive in all classrooms and functions with the whole staff.
• I don't think I want Elliot in a special class all day, and not included with the general population.
• Elliot doesn't need to go somewhere else. We can bring him to a public school once a week or a couple of days a week, and he can get these services and we can bring him back to AH. But if there's a good place out there for him, I believe he should be there all the time.

Yes, now we are dealing with the next phase of our life in learning about special needs. One of the neurologist's prophecies come true: He may be in special classes.

And yes, I've shared a life with this little person and see him for who he is, but here comes the part in his life where he gets some label that is supposed to communicate who he is to all of his teachers. Here comes the part where he is separated, quite possibly with children having severe special needs who may not be able to socialize with him in the way he craves. Here comes the part where he may be teased and hurt because he is different. Here comes the part where I really have to let go. I'm wondering if I can.

Excuse me while I vomit.

And before my best friend interrupts this blog with an important message about children with special needs and how it's not really like I just described and how he'll be fine (just like he's always been fine), and need to make clear: I know what a really good school can do. I also know that there is no substitute for good parenting. So it is with equal parts hope and resignation that I begin this process of finding a place. A place where my children will spend many hours, where they will learn more about grown ups by what they don't say, and where, if we play our cards right, they will get a hand up.

So in this process: ISAS schools, catholic schools, public schools, magnet schools, charter schools...you name it. My first flirtation with finding a school they could both attend didn't go so well. I went to an informational meeting for ISAS schools, and when I raised my hand to ask the panel about children with special needs, I was met with a look of half-fear and half-confusion by the admissions director. Yes, there are learning specialists to help children with dyslexia and all that. At which point I felt like standing up and saying loudly, "No. That's not what I mean. What about kids with cerebral palsy? Who need therapy? Who can't walk?" Blood rising in my cheeks, I bit my tongue. This is clearly not where he belongs.

And is that where Ana belongs? Does she need to be in an environment where everyone can do. What will she learn about inclusion and children with special needs from her school, even though she doesn't need the services? What attitudes will she develop from her school? Do I need to let go of the idea that the perfect school for each of them might be different?

After the presentation, the director of the Parenting Center confirmed my assertation: The ISAS schools (as a whole) are not poised to serve children with special needs. It seems like public schools are the way to go. What does that mean exactly? I think I'm about to find out another good reason to live in Jefferson Parish. Wish me luck.