October 2, 2016

On Choosing the Path No One Wants to Talk About.

October is Down syndrome Awareness Month. In the past, I've talked about raising awareness for what Down syndrome is, what it affects and how it's been affecting us. We've raised money, done the walks, and advocated for legislation that makes it possible for Sam and others like him to have an income without it precluding his getting health insurance. I've shared about how scary the medical problems can be, how frustrating feeding issues are, and what an amazing gift Sam is to our family.

In the last few years, I haven't written as much about Sam. Or at all, really. Life is busy. Much of Sam's medical issues have been resolved or they've switched entirely into maintenance mode. He's met a lot of the basic milestones from those first few years (still not talking, but he can eat like a champ now!). How Down syndrome was affecting our daily lives changed. It wasn't a fire hose of information and medical problems being aimed at our heads anymore. We caught up and Sam grew up some. Down syndrome became a part of who Sam is, but no longer completely eclipsing him. We learned that not only does Sam have Down syndrome, but that he also has the best giggle, he's a twirling dancer, a lover of swings, a big brother intolerant of crying babies.

This past spring, we had another period of being reminded that Down syndrome is still something that gives us growing pains occasionally. While we hadn't been ignoring what the future was holding for Sam as far as educational opportunities go, we hadn't exactly been out researching all the latest models and options. So when faced with the decision about Sam's schooling, I'll admit I went back down one of those grief spirals that shook me so hard those first few years. I haven't been down one in a while, so it took me by surprise when it happened and then it took me a few tries to remember how to find my way out of it.

So, let's talk about it. I've been sitting on this post for the past 6 months, but I'm feeling brave enough (and I've caught up on some sleep now that the twins aren't newborns anymore! Hallelujah. Amen.) to put this out there now.

But first, some backstory:

When Sam was born, he automatically qualified for something called Early Intervention. It meant that someone from our county got connected with us before we even left the hospital. They came into our home and helped us get therapy started for Sam. We had physical therapists, feeding therapists, and eventually occupational therapists in our home on a weekly basis because we were told that research indicated that the sooner we started therapy with Sam, the better off he would be. Our county paid for all of these services (Your tax dollars at work. Thanks for that. Seriously.)

Early Intervention through the county ends when your child turns 3. If you would like to continue to receive therapy and support, you must go through the school system until your child ages out (right before they turn 21). That meant, that starting at age 3, Sam went to preschool at a local elementary school. For Pre-K 3, he went three days a week to a class with a handful of other children who also had some kind of qualifying diagnosis (CP, Autism, Ds, etc.). The next year, he entered into a 4 year old preschool class, what is called Bright Beginnings in North Carolina. It was still held in the same school, but he now went 5 days a week and had kids in his class who were typical in all regards except that they had been identified as being at risk for not being ready to enter kindergarten the next year for various reasons (ESL, medical conditions, etc.).

While our experiences in the county preschool program were not all positive, on the whole, it was a good choice for Sam. We learned that he thrives on routines, that he enjoys being in the school environment, and that he is capable of a lot more than we were giving him credit for. He continued to receive physical, occupational, and speech therapy (Again, paid for by the school system. Thanks for that, too).
Sam was in an environment where his diagnosis wasn't a deterrent. He wasn't the only child there with Ds, all his teachers had experience working with kids with special needs, and he was loved. I mean, really loved, by the staff at that school. They took good care of him and helped him the best they could to get ready for kindergarten.

Back in April of this year, I went to the school to sign off on Sam's IEP. An IEP is an Individualized Education Plan. It's a legal document with the school system, created by the parents, teachers, and therapists. It basically states: Here is where Sam needs help. These are our goals for those areas. This is how we are going to reach those goals.
It's a legal document, therefore, one has to be up to date at all times. For some reason I don't remember, Sam's always comes up for review in April, even though an updated IEP would only be in effect for the last 8 weeks of that school year, and then we'd meet with the new teachers and sign off on the next year's IEP. Anyway, my point is, I went into the meeting (with two 4 month old babies!) thinking I was just going to say, "Let's keep on keeping on and finish this year out strong. Where do I sign?"
And for the most part, that's what I did. Except, at the end of the meeting, the case manager said, "Let's just talk a minute about our next meeting in June for Sam's transition to Kindergarten." It was a smart move on her part. I knew the transition to Kinder meeting was coming up, but I thought I knew what our options were and what path we were going to choose. But I learned something in that meeting that threw me for a loop and landed us into a lot of turmoil those last 8 weeks of school.

In the Charlotte-Mecklenburg School district, Sam's three options entering into Kindergarten were explained to me to be this:
1. Enter into a regular Kindergarten class. Be in the class full time with minimal to no extra support for him or his teacher.
2. Enter into a regular Kindergarten class part time. Be pulled from the class a certain percentage of the day to be in a "resource class" where he would receive small group or individual help with certain academic subjects. During regular class time, he and the teacher may receive little to no extra support.
3. Enter a Special Academic Classroom. A SAC class would contain only other kids with IEPs and it would be a self contained class. Meaning, most of his day would be spent in that classroom, and he would not be in a typical class at all. He may "push into" other areas of the school day where he would interact with the general education population (i.e. having recess with other kindergarten classes).

These options were not a surprise to me. Having had many other families from our Ds community tackle education with CMS, I was pretty prepared for what I was hearing. However, what I didn't know was this: Option 3 was permanent. Once Sam entered a SAC classroom, that was the educational track he was going to be on until he completed his time at CMS.
Our original plan for Kindergarten had been to place Sam in a SAC class for his first year and then reevaluate at the end of the year, with the goal being to place him in a typical Kindergarten class the following year. So, do kindergarten twice, once in Special Ed, once in Gen Ed and see how he handled it.

What we learned is that this plan was not an option.While we heard some anecdotal evidence that repeating kindergarten in a gen ed class after a year in SAC had happened, we were told a firm no by the team we were working with. They encouraged us to use the remaining weeks before the official meeting to research all our options and visit as many of the classrooms as we could.

I came home in a tailspin. I immediately reached out to our online communities about their experiences with transitioning to kindergarten. The response to that as overwhelmingly negative and not helpful, so I kept looking for answers. Travis and I talked about it for a few weeks and finally decided that since Sam was going to be a young kindergartener anyway (he'd be entering kindergarten a full 10 months younger than Luke had), that we would rework our tight budget in order to put Sam into a private preschool and intensive speech therapy. We wanted to give him a chance at entering kindergarten in a typical classroom and we hated the idea that we had to make that decision while he as still 4 and dealing with a significant speech delay.

But that plan didn't work either. Being that it was May at this point, most private preschools were dismissing for the year and they were mostly full for the coming school year. We spent a week frantically calling around trying to find a school that was ready and excited and had space available to take a kid with Down syndrome, and we couldn't find one. That week sucked.

And this is where I almost went astray. This is the point in the story where I almost put myself and my feelings at the center of this decision instead of Sam. The grief spiral had begun and I felt awful. I hated that things weren't going the way I imagined they would. We had started kindergarten with Luke so beautifully. He was thriving in kindergarten. And I wanted that for Sam so badly. To send them off into school together. To see Sam seated at a little desk cluster, just like Luke had, surrounded by typical kids. I wanted Sam to start talking, to learn his alphabet, to hold a pencil for more than just scribbles. I wanted full inclusion because that's what I had been imagining for the last 4 years.

When Sam was born, Travis and I had no idea what Down syndrome was. We spent the first few years of Sam's life trying to learn everything we could about Ds and what it meant for Sam's future. I remember driving past our local elementary school when he was an infant and bursting into tears because I didn't know if kids with Ds could learn how to read, and I loved reading and it was such a big part of me and how sad it would be if we couldn't share that. I went on to seek out the stories of other families who children were older than Sam. I followed every blog and social media account I could of parents who were willing to put their experiences out there. And I saw kids practicing sight words, telling funny stories, being a part of high school, of getting acceptance letters to college. I saw all the viral stuff you've probably seen, too. I sought it out like it was a drug. I wanted to know what Sam was going to be like. I rejoiced in actors with Ds taking on TV shows. I've watched every episode of the A&E reality show about the adults with Ds. I saw it all and felt comforted.

Inclusion is a hot button topic in the Ds world. If you aren't part of the special needs world, you may not be familiar with it. Inclusion simply means that your child is included in a regular classroom for the majority of their day. If you check out the NDSS website, and I did many times in the weeks before Sam's transition meeting, it's practically a guidebook in how inclusion is best and here are all the legal arguments you can use to make sure it happens.

Inclusion can be done in a variety of ways, and school systems seem to all handle it differently. Some kids are able to have aides with them throughout the day to help them transition and remain on task. Some kids don't have to be pulled out for therapy, but instead have the therapists "push into" their regular class time. Some kids can transition between self contained classrooms and regular classrooms. The options seem to be endless depending on where you look. But our options were not that expansive. We could go against the school team's recommendation for a SAC, and place him in a option 1 or 2 classroom. We had that legal right, but we didn't want it. We knew it was entirely possible that Sam could have a kindergarten teacher who had 23 typical kids in her class, no aide, and no idea what Down syndrome was. Regular teachers are not required to have any extra training about how to teach children with special needs in their classes.

Today, Sam is 5 years old. He can walk and climb into the car and up into his carseat. He can feed himself most things. He can drink from a straw. He can scribble on paper. He says "cup" and can sign 10 other things. He can use a picture exchange book to tell you what he wants for dinner. He can work his iPad and play games and listen to music and watch movies independently.

Sam is 5 years old and he cannot sit in a chair without a back, he cannot climb up stairs or a curb without using his hands. He cannot tell you he has a dirty diaper. He can't take his pants off without sitting down. He can't turn on a faucet. He can't open a door without a lever handle. He can't tell you if his stomach hurts or if he doesn't feel good. He can't stay on task without help. He needs hand over hand support to feed himself with a spoon or fork. He can't open the zipper on his backpack or his lunch box. He can sit quietly and not bother anyone for hours at a time if he's left alone and to his own devices. He can also destroy an entire room by clearing bookcases and tables faster than you blink.

I'm not going to go any further. You get the idea. Sam is a kid who needs full time support in order to succeed in a classroom. He needs a teacher who understands that his communication methods aren't conventional, but strong. He needs a teacher who is also willing and able to help him use the toilet and change dirty diapers. He needs a learning environment where he can go at his own pace and not be penalized for needing longer to grasp concepts. He needs someone who will force him to engage and not ignore him because he's being quiet.

Sam may not be the kid who makes it onto a TV show, or makes it to college, or has a full time job. He may live a simpler life than that. Or he may have his own talk show one day. Who knows? But I'm tired of only seeing the top half of people with Ds being represented. Ds has a wide and varied effect on individuals, but it seems like we only see the glamorous, cute, and easy to swallow side. Some times Ds means a 5 year old who can't talk. Sometimes it means a 10 year old or a 20 year who can't talk. Sometimes it means a 30 year old with Alzheimer's. And we shouldn't diminish them because they aren't the ones reading their college acceptance letters on Facebook. This is the emotional gut punch that was keeping me from making the decision based on what Sam was showing us he needed now, and not based on the pressure I felt to put him in an inclusive environment because of what others were fighting for. I felt like I was letting down the Ds community by not being willing to place him in an inclusive kindergarten even thought I knew it was the wrong decision for him.

So, back in May, when we were crushed our Plan A and B were shot down, we finally made the call and arranged a visit to the local SAC classroom. And the minute we walked in the door and were greeted by two of the teachers, I knew Travis was sold. These people WANTED Sam. They'd never met him, didn't know a thing about him beyond his diagnosis, but they were ready to lay out a strong argument for SAC. Here were people, not only with Master's Degrees, but Master's Degrees in Special Education. They had gone back to school after earning a teaching degree just to study how best to teach kids like Sam to read and write and make curriculum work for him. It was evident from these particular teachers that they loved their jobs, that they were called to this profession, and they were passionate about working with this population of students. They reminded us of the bigger picture. They talked to us about what the end goal was for Sam. That they wanted him to get the best, the most, out of the system he was placed in, flaws and all. They encouraged us to not spend multiple years trying kindergarten over and over, not because Sam couldn't do it...but because Sam had a limited number of years he could be in the school system, and the last 4 years of school was going to be focused on helping Sam be a productive citizen. Every year Sam spent trying to master kindergarten in a typical classroom setting, he would be getting one less year of job training and community outreach skills.

While Travis was convinced right away, it took me a while to get on board. But I eventually did and we've been going down this track for 6 weeks or so. I'm happy and relieved and grateful to say I have a lot of peace about it now. Sam's been thriving at school, and it's been showing up at home. Is he suddenly talking my ear off and writing sonnets? Well, of course not. But he's happier and more engaged than he's been in months. He is comfortable in his classroom and with his teachers. He practically has a 1 to 1 ratio during most of the day.

Before I get the end of this (long, long) story, let me say this:

People living with Down syndrome have seen a radical shift in their quality and quantity of life in the past 100 years, specifically the last 30. The Mayo Clinic says that a baby born with Ds in 1910 rarely made it past age 10. In 1983, it was age 25. Today it's closer to 60. In recent decades, children and adults with Down syndrome could be institutionalized or placed in nursing homes. Today, many have jobs, live independently, and have enriched and fulfilling lives. It's been an amazing change to read about and I'm incredibly thankful our Sam was born in an era where cardio-thoracic surgeons have figured out how to fix big holes in tiny hearts and how pacemaker and battery technology have advanced enough that our little boy's heart can grow into a man's heart. I'm so incredibly thankful for the parents who have gone before me who pushed and pushed and demanded over and over again that their child deserved more than what they were getting. The parents that took on school boards and doctors and legislators and said, "You have to fix this. You have to change the law. My child has rights as well as an extra chromosome. And I'm not going to stop until you do."

It's because of those parents that things like Down syndrome Awareness month is even a thing. It's why the NDSS and my local chapter exist. It's why Sam had therapy guaranteed from the minute he was born until he turn 3. It's why he had two years of preschool and therapy through our school system. It's why there is a legal document that is in effect every day of the year while Sam is in school so that everyone knows what he needs, what his goals are, and that they are responsible for making sure it happens. I didn't have to fight for any of that. Hell, I didn't even ask for half of it. People just showed up at my door, saying, "Hi! I have a Master's degree in feeding therapy. Let me help you teach your son to eat." Or "Hi! I'm Nikki. I'm going to teach your son to sit and crawl and walk. It's going to take us 2 and a half years, but we are going to get there."

We have the luxury of picking the best option for Sam's education. We didn't choose full inclusion for Sam, instead only having him push in for recess, lunch and music class. That's just for this year. Maybe in years to come, we will choose more or less inclusion for Sam. Based on what's best FOR SAM. I'm also thrilled that Sam's peers who are ready for a bigger challenge have the support and the legal access to a full inclusion classroom. The fact that we as parents get to sit down and work with our school system to find the best fit for our child individually is exactly what it should be. Could the system be better? Of course. I'll do my best to support others in my community who are fighting the fight for their kids, while also choosing another path for my own kid. It doesn't have to be either/or.

So. There's that. I've been reluctant because I'm afraid I'll offend someone. But hopefully, next April, when there is a parent frantically searching all of the internet for a positive story about a self contained classroom for her child with special needs, she will find this. I couldn't find anything like it last year and that's not the way it should be. Thanks for reading.