PROGRESS

The Buddy Walk is this Saturday (yay!!), so we’re busy preparing for an awesome day with our Team Lina people. I also have beach vacation pictures to process and share from last week. But all of that can wait for a minute, because I want to talk about a word that’s on my mind this week: PROGRESS.

IMG_2859Lina’s kindergarten start had some bumps. Not surprisingly for her, they were mostly her pet behavior challenges of social aggression and noncompliance. These are the behaviors Lina falls back on when she feel overwhelmed or out of control. It seems to be her way of exerting control over her environment. As her classroom teacher pointed out recently, they are also pretty directly linked to her level of tiredness. These long days are a lot for any kindergartner, and she understandably runs out of juice for focused, structured activities as her energy drains. It’s easy to forget that even routine activities require extra effort for our girl.

Anyway, to make a long story short, I requested a formal process called a functional behavioral assessment (FBA). This is a process outlined in the 1997 reauthorization of the IDEA (Individuals with Disabilities Education Act), the federal law governing special education. This document provides great information for parents about FBAs.

Confession: I have spent more than a little time worrying about Lina’s behavior at school and how it will impact her ability to be successful there. How can she form real friendships if the kids are afraid of being pinched or kicked or having their hair pulled any time she comes near? How can she keep up academically if she won’t participate in school exercises and activities? Will her teachers be able to see past her behavior to understand how bright and capable she is? I realized over these past weeks that even while I believed and preached about our kids’ abilities to learn and succeed in inclusive classrooms, I had to wrestle the voice of doubt that threatened to shake my confidence in my own kid.

Fast forward to this Tuesday, when I met with Lina’s IEP team and the school’s behaviorIMG_3446 consultant to kick off the FBA process. As we talked about where Lina is and the behavior we’re needing to address with the FBA, I began to realize that the team was painting a picture of major progress over the past days and weeks. The social aggression has almost disappeared. Compliance is still a challenge, but Lina suddenly fully participated without hesitation in PE class this week, which has previously been a no-go.  She has begun engaging during the daily social skills group. Her gen ed classroom teacher said she’s formed friendships with her classmates and plays happily with them on the playground. A picture began to emerge of a kid who has found her footing.

As I reflected on her progress, I knew the lesson was one I may be relearning throughout Lina’s life: Have patience and confidence. She can and will succeed.

The challenges haven’t all evaporated. I am hopeful the FBA process will help identify the key drivers for times Lina resists participation and help redirect that resistance so she can get the most from school. Once the FBA is completed, every person who works with Lina – teachers, aides, therapists – will receive student-specific training on the behavior intervention plan. The focus is on prevention and positive reinforcement, helping Lina find better ways to maintain a sense of control and communicate her needs and desires.

But whatever challenges remain, watching Lina fall in love with her new school and new friends and find her footing in the wider world – that’s the point. This is her growing and learning. It takes more time, effort and resources. It may not look like a typical kid’s process. But she will get there, in her own time and in her own way.

I was at GiGi’s Playhouse yesterday morning for the Busy Bodies group I co-lead. It’s a group for the very littlest ones with Down syndrome and their families. A mama with a IMG_3420darling baby girl was talking to us about her little one’s milestones, and I found myself sharing with her something someone told me when Lina was still very little: In the big picture, the fact that it took our kiddos longer to learn and meet their milestones won’t matter. Lina is six, and it’s irrelevant now that she didn’t walk until she was more than two-and-a-half. As an adult, it won’t matter a bit that she didn’t talk until she was at least three and took longer to potty train or do any of the other tasks she will be learning in the years ahead.

As parents of any child, we’re too often comparing our kids. How does my child stack up on smarts, athleticism, fine motor skills, reading ability, social skills? But that’s rarely constructive, and it’s especially hard on parents of kids with a learning difference or disability. That stuff isn’t going to matter all that much in the end.  It’s a lot harder to measure and compare the skills that actually build long-term success. The key is that our kids are growing and learning and making steady PROGRESS. They are becoming, in their own ways and at their own pace. Remembering that requires patience, grace and faith, for ourselves and for our kids.

Today, as we’re nearing Thanksgiving season, I am thankful for progress – my kids’, and mine.

Learning as we go

Lina is a few weeks into kindergarten, and a lot of friends are asking how she’s doing. The answer is… pretty well? I think? It’s actually harder for me to answer than you might expect.

I don’t get a lot of information from Lina about her days. (To be fair, I didn’t get much from Corin at this age, either.) If you ask her if she had a good day, she usually will give an enthusiastic, “Yes!” But she generally doesn’t want to talk details, and sometimes she says no when people ask if she likes school. Which seems to be more about contrariness than an actual barometer, because she seems really happy to go to school and is in a good mood when she gets home.

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We’ve had some definite transition challenges. Lina was anxious and overwhelmed with all the change, and she fell back on her standard control mechanisms: noncompliance and social aggression. The first few days saw a lot of worksheets coming home with no name at the top and scribbles rather than any attempt at completing the assignment. Then I started getting messages about hair pulling, pinching, pushing, kicking… I met with her general ed and special ed teachers the second full week of school to talk things through.

Tangent: I want to say how very, very grateful I am that we are in a school system that is committed to inclusive education. I don’t have to defend Lina’s right to be in a general education classroom, learning alongside her peers. Our county does not have segregated special education classrooms at the elementary level. Everyone in the system is committed to providing the right supports to help Lina be successful as a full-fledged member of her kindergarten class – as they should be. This is not the case for the majority of kids with disabilities, despite decades of law mandating a “free, appropriate public education” in the “least restrictive environment.” This needs to be said (shouted) as often as possible. My daughter is lucky because her parents were able to make the sacrifices we need to make to live here. I get angry every time I think about kids whose families can’t afford to live in districts like this one, and thus wrestle and fight just to give their kids the opportunity to prove they can learn in a general education classroom.

(If you have questions about why it’s best for kids with disabilities to be included in a general education classroom, PBS provides a great, simple overview. But if you’re interested in learning more, I would encourage you to dig deeper. There are decades of research showing that inclusive education benefits BOTH children with disabilities and their classmates. In fact, no study has ever shown any negative effects of correctly provided inclusive education.) /End tangent

So, I had a great meeting with Lina’s teachers. We worked together on plans to support positive behavior and to help Lina engage with learning. I came away with a lot more information about the hands-on learning opportunities Lina is getting every day and the tools they’re using to help her succeed. Her teachers are fantastic, and the passion they have for helping Lina reach her potential is obvious. The right supports are in place, and we know what the next steps are. I came away feeling much better. The work coming home has improved pretty dramatically in the last week, and we’re seeing a jump in speech development, too.

Honestly, I may be having a harder time with this transition than Lina is. Kindergarten is a whole new world. Lina’s early childhood public preschool was wonderful, and it was a blended classroom, meaning about half the kids were typically developing “peer models.” But it was still a special education class. We are both learning to navigate a much broader world this year, and I am keenly aware of how much higher the stakes are. Decisions we make in kindergarten can impact the trajectory of Lina’s educational path – no exaggeration. I am finding there is a lot I didn’t know. (For example, what’s the difference between an accommodation and a modification? If my child is getting dotted lines to trace her numbers rather than writing them freehand, which is that? How does the distinction matter?)

I am struggling to find the right balance in my level of communication with Lina’s teachers. I feel disconnected, because I have fewer opportunities to speak casually with her teachers at pick-up, and really, it’s just new and I haven’t reached my comfort level yet. How do I stay engaged without driving them crazy? How often should I expect updates?

I find my insecurity and guilt flare up in these transition times. Knowing the stakes have gone up means I’m constantly questioning whether I’m doing enough. I don’t drill Lina a lot at home. She’s tired from her long days, and frankly, I’ve got my hands full making sure everyone gets snacks and goes to the bathroom and there is something resembling a healthy dinner on the table at a reasonable hour. In my head, I know she needs time to play, just like every kid. She needs to unwind and be able to decide how to spend a little of her own time. That’s as important to her development as drilling sight words and practicing counting. I know this. Head knowledge never quite silences the fearful whisper, though; it’s the one that suggests she might fall behind because I’m not working hard enough.

IMG_4814If that all sounds gloomy, it’s really not. There is a lot of great news here. I have an awesome community of parents at my back who have been right where I am. Our Down syndrome family is remarkable. I ask, and they give me specifics about how they have learned to manage communication with their kids’ teachers and how they stay on top of daily progress. They can talk to me about accommodations and modifications and how they matter. They connect me to resources and help me find my way to what I need to know. They remind me I’m not alone.

Just like with every new step of Lina’s nearly six years (or the past 8 1/2 years of parenting, for that matter), we learn as we go. I don’t have to solve every problem right now. Today, I am learning about daily communication logs and accommodations versus modifications. Next week, it will be something else, and I’ll learn that, too. I take a deep breath, and I remember that Lina has already proven many times over how capable she is and how much she can accomplish.

And now I’ve looked at the clock and realized I’m late to go sit in the pick-up line for an hour. (See my eyes rolling.) I think today, I’ll use my time to send that update email to Lina’s teachers, and then I’ll close my eyes, breath deeply and thank God I get to do this job. Because even on the hardest days, it’s the absolute best gig there is.

Lina goes to kindergarten: First half-day

I sent my baby to kindergarten and survived!

Yes, it involved me ugly crying in the car before running my feelings out for four miles at the greenway. And yes, she fell asleep in our bed after she got home. But we made it through, and she seemed to enjoy her day. She was too tired to talk much about it, but at pickup, she was smiling and answered the standard, “Did you have a good day?” with an enthusiastic “Yes!” So, we’ll call that a win and do it all again tomorrow. Then the real fun begins with the first full day on Monday.

There is a lot I could say about the ways this is familiar and ways it’s different than it was with my firstborn. I could talk about my own worries and how hard I am trying to keep them in check so they don’t color Lina’s experience. I could talk about how these milestones often bring a tinge of recurring grief over the ways life is harder for my girl. I could talk about the guilt that threatens to rear its head, whispering that I should have worked harder with her, that there is more I could have done to give her a head start. I could talk about how proud I am of how ready she really is. But we’re all pretty tired around here, so I’m going to let all that lie. I will post cute pictures and finish out this day knowing Lina is remarkably capable and in very good hands, human and – most importantly – divine.

Happy kindergarten, precious girl! We can’t wait to see all you will accomplish this year.

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Sassypants didn’t want to smile. Also, the headband didn’t make it past photos.

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Best laid plans, or, Lina’s last day of EC

 

Today did not go as planned.

It was Lina’s last day of early childhood preschool. She has spent three years at Pearre Creek Elementary, where the teachers, therapists and staff have loved her and she has loved them. She has thrived. She has asked for school on weekends and holidays. This place has been good to her. It has been good for her.

I was emotional before the day even began. (You’re shocked, I know.) I cried as I thanked the amazing bus driver and aide and watched that preschool bus pull away for the last time.

I got my post-gym shower and headed to Target to pick up a few things. (How many disasters have begun that way?) It wasn’t until I looked down at my phone, well into my meandering, and saw the calendar reminder for Lina’s end-of-year school party, that I remembered I was supposed to be at her school an hour early. I was supposed to bring baby carrots. I was supposed to hear the kids perform the songs they’ve been practicing for weeks, the ones Lina has requested we sing along with on YouTube every day this week. It was five minutes until the 30-minute party started. I was 25 minutes away.

I cried all the way there. The landscaping truck in front of me belched black fumes as we lurched through the worst 3 p.m. traffic I’ve ever seen between Target and Pearre CreekIMG_2262. I’d like to tell you I got it together before walking into the classroom, but nope. I cried again once I got there, as kids were already heading out the door with their parents.

But Lina – that girl, that light of my life – was overjoyed to see me. She was relishing her party snacks like they were the only food she’d have that day. I worked valiantly – really, it was downright heroic – to regain control of myself, and I just managed to avoid ugly crying again as we said our many good-byes.

As I look back tonight at the photos, I can (mostly) let go of my frustration and disappointment. Because, y’all, look at these faces. The pictures are grainy and blurry as I scrambled to catch the moments, but look at the way these women, these super heroes of Pearre Creek EC, have loved our girl.

What more can I add to that? Thank you, Pearre Creek. We will not forget all you have done for Lina.

Lina goes to Kindergarten: Sneak-a-Peek

You know what made today’s kindergarten sneak-a-peek event especially jarring? Remembering going with Corin yesterday. Seriously. I cannot account for the time.

Lina was by turns overwhelmed and excited as she got her first real tour of her new school. Her favorite parts were the bus ride, trying out the play kitchens in the classrooms, discovering the stage in the cafeteria and the Scales Mustang cookie (because that girl never met a dessert she didn’t like). She didn’t much want to talk to anyone, though she did engage in a giggly round of under-the-table peek-a-boo with the little girl across from her. She didn’t much want me to take pictures. There was some finger sucking and a meltdown or two when she didn’t want to stick with the tour program, but overall, she did pretty well.

I’m not sure how I’d rank my own performance. Events like this can be tough, mostly because they throw into sharper relief the differences between Lina and her typically developing peers. There are things she can’t or won’t tell me, and I am left to guess. Does she really understand that she is going to this school next year? What does that mean to her? How does she feel about it? Old worries resurface. How will the other kids respond to her when she doesn’t behave quite like they expect? Will they be patient with her less-clear speech? Will they make the effort to include her in their play? Will she be left behind as they race along at their carefree pace? How will she respond to the greater academic challenges?

I don’t like admitting those fears. I want you to believe that I always see Lina’s strengths and never waiver in my faith that she will conquer every obstacle and prove wrong every doubt. But that’s not real life. I have my struggles with worry and fear. These changes will never not be scary. I will never not feel the ache of the extra challenges my youngest child faces.

But deep down, in the place where it matters, I remain confident in Lina’s ability to navigate this transition. I believe that God has walked with us every step of our path so far, and that He will go beside my girl as I send her into her elementary school experience. I have a tendency – passed down like a treasured heirloom through long generations of worriers – to get ahead of myself. I want to solve problems ten years out. But that’s not how God works, and it’s not a very effective way to live. Instead, our family is learning to take our path one step at a time. God has never failed to provide just what we need for today.

So today, our girl walked through the halls of a fantastic school, where she will have access to excellent teachers, therapists and resources. She connected with a little girl across the table. She discovered favorite books and toys. She found the stage. She ate every morsel of her cookie. It was a good day.

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Today – 3.21 for three copies of the 21st chromosome – is World Down Syndrome Awareness Day. I love this day. Our family likes to wear mismatched socks to celebrate the differences that color our world. Friends and family send pictures of their crazy socks. My Facebook feed fills with celebrations and photos of kids and adults with that something extra. It is beautiful.

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Thanks to a packed schedule, only Lina and I got our sock photo.

Jon and I kicked off the day by attending Lina’s kindergarten transition meeting at the school she’ll be attending in August. This was the first time we met the new team that will be taking over her therapies and support services as she leaves early childhood preschool and begins her elementary experience at our school of zone. It felt like a pretty big deal, which is why you could have found me at our local FedEx at 9:30 last night, having a one-page flyer printed.

If you’ve followed along these past three years, you know that Lina’s preschool experience has been phenomenal. She has attended four half-days a week in an early childhood blended classroom of peer models and students with special education needs. There are four adults in the room of about 12 students: either the occupational or speech therapist (each two days a week), a special education teacher and two aides. The kids receive a tremendous amount of individualized attention and support.

We are very lucky to live in a district that believes in inclusive education for students Version 3with disabilities. In fact, the elementary schools in our county don’t have self-contained special education classrooms. Lina will be pulled out for brief periods for special ed instruction in reading and math and small group speech therapy but will do the vast majority of her learning in a general education classroom. She will receive support from a paraprofessional who stays with the class full-time.

All of this is awesome. It’s why we moved to this district. It’s also overwhelming. This is a whole new world for our girl. The change from four half-days to five full days is big enough. But now, Lina will also be one kid in a class of at least 20, needing to keep up with generalized instruction, transitions to other parts of the school for specials (like art, music and P.E.), navigating the lunch room, the bigger playground… It’s a lot, and this mama’s heart contracts every time I think about it.

But, this is what we’ve been working towards for the past three years. This is the process of parenting, that gradual letting go, of sending our kids out into an ever broadening world. Lina’s current preschool educational team has spent long hours updating her evaluations, preparing her IEP (which prescribes her special ed goals and supports), communicating with the new team and ensuring the right supports will be in place. Jon and I have spent three different meetings over the past two weeks going over those goals, providing feedback, suggesting changes, developing a behavioral plan, helping the new team get to know our girl and her strengths and challenges. Months before she begins kindergarten, an entire village is pouring effort into providing everything Lina needs to learn. I get weepy when I think about the dedication of these teachers and staff, who are paid a fraction of what they deserve. Together, we and these remarkable teams are laying the foundation for Lina’s future. The dreams we have for her of college, meaningful employment, independent living: they start here. IMG_3659

So, on this 3.21, I am grateful, and yes, a little heartsore. My baby is growing up, but I know that’s the job. Sending her into the world is never going to not be scary, but I am moved yet again by the size and heart of our village. From friends and family who put on their crazy socks (literally and metaphorically) to the teachers and therapists who work day after day to equip her for success, Lina has an army at her back. That may be the greatest gift of all in this journey.