July 29, 2016

Dear Sam: Year 5

My dear, sweet boy,

Right now, you are laying underneath a side table at the foot of the stairs of our rental house in Park City, UT. For the last week or so, you've been reluctant to go to bed in your actual bed. You've figured out how to work every door knob in this house, so there is no quarantining you. I've put you to bed, only to come back hours later to find you on the floor, in the hallway, in the bathroom, in my bed. Rarely, in your bed. 

We are more than halfway through our "Epic Utah Summer." Over a year ago, your dad got the opportunity to submit a grant to the Lily Foundation for a 3 month sabbatical. It was a long shot to win the once in a lifetime grant, but he went for it. And like most things in our lives, your dad gets what he wants, one way or another. So, here we are. The two months you and Luke have off from school, we have packed up our entire family and decamped to the mountains surrounding Salt Lake City.

Being here has been great on so many levels, but it's been hard, too. We move around a lot. We have to figure out how to have routines and decent sleeping schedules for you and your sisters when our lives are anything but routine right now. Honestly, despite how hard it's been to have two infants away from home all these weeks, I think these weeks have been the hardest on you. Our first week here, we were in three different locations between travel, a family reunion, and our first rental home, and it left you reeling. Not only had you just come out of your school routine a few days before we boarded the plane to Salt Lake, but now you were in an unfamiliar house, a different bed, and surrounded by tons of people you didn't really know. The routines that were comfortable and familiar and important to you at home haven't existed since the last day of school back in June. 

So, you shut down. You grabbed your iPad and an apple and closed yourself off in a bedroom at the family reunion. 

It was hard for me to see you so unhappy and overwhelmed. I didn't know how to help you, beyond giving you space. I would lure you out of your cave, only have you disappear again after a little while. And while things have gotten better as the summer has gone along, you still are seeking out a lot more alone time than you ever have in the past. That alone time ultimately leads you to getting bored and then getting into trouble, so this isn't exactly my favorite phase we've gone through. But being alone, in a room with a door, has suddenly become very important to you. Just the other day, I was talking to your dad about how weird it was to think we have so far skipped the "terrible two" stage with you and before we know it, your sisters will be there. But maybe you've just gone straight for the moody teenager stage instead. 

For so long, you've been stuck in my mind as being a toddler. Developmentally, you hit a plateau at about 18 months, and we've been hanging out here for the last few years. So, when I see your how your torso is stretching out and the space between the bottom of your shorts and the tops of your shoes show actual calves instead of baby chunkiness, I am always a little surprised at how big you have become. You have started wrestling with your brother and Dad, and nothing makes you laugh harder than when you succeed at knocking someone over and sitting on them. It's fun seeing you engage more with your siblings and act like the little boy you are now.
Your therapists at school have talked about how much stronger you are getting and how much more willing you are to walk down the long hallways. You still struggle with taking stairs and curbs without using your hands, but that's mostly out of nervousness and not a lack of ability. We probably shouldn't tell your therapist about the new stroller we got this summer that you love and how you now refuse to walk more than 10 feet without crying to be put in it. Oops!

We've covered a lot of ground this summer, in that stroller and in the car. We have a few more weeks left before we head back to North Caroline and get ready for our next big challenge: Kindergarten.

Now, my sweet boy, I'm going to be honest with you and say, I don't know if we are doing this whole school thing right. I've been anxious and frustrated and sad a lot this past year as we faced making decisions about how and when and where you would start elementary school. We thought we knew what we wanted for you: to hold you back a year and let you take another lap at preschool and work towards letting you be in an inclusive kindergarten classroom next year. Only, we couldn't make that happen. And I'm sorry for that. I really hope I didn't let you down.

What those last few months of preschool and kindergarten prep meetings opened my eyes to was  this: This journey we are on...you and me and your dad and all the people who love you....it's a hard one. I thought the first few months of your life were really tough on us. The hospitals and surgeries and health scares and being overwhelmed with an unexpected diagnosis...it was a lot. But it got better! And through all the challenges we've faced in the last 5 years, I thought I had a better handle on this life with Down syndrome. I watch the TV shows and follow the support groups. I help raise money to fight for legislation reform and equal protections for you and others like you. 
But none of that prepared me for kindergarten. And for having to decide two months ago, when you were still 4, what kind of educational track you were going to be on for the next 18 years. It was not a fun decision to make. It's one your father and I researched and prayed a lot about.
And, I'll be honest, sweetheart. I had do a little more grieving about Down syndrome. When you came into our lives, I had to learn so much. And it's easy to focus on the happy things, on the bright spots. It helped us get through a lot to acknowledge and learn about all the amazing strides the Ds community has made in the last 25 years. People going to college. Marrying. Living independently and having meaningful jobs. Those stories are amazing and such an important part of advocacy, but they sometimes paint a picture that doesn't include everyone under our umbrella. The push for inclusion is strong and pervasive in our community now. But there is little nuance or discussion about how it might not be the best for everyone. So, when all we'd heard for the past 5 years was inclusion is the only way, the way you HAVE to go in order to further support the Ds community....and then to realize, maybe that's not the path that's best for you...well. It sucked.

  But don't misunderstand me, Sam. I didn't need to grieve you. You are sweet and loving and can radiate joy like no one I've ever met. You are good. You are stubborn. You are mine. There is no grief in who you are.

But you are Sam. You are not like anyone else who has Down syndrome. Because while you may share a diagnosis, that extra chromosome affects you all in wildly different ways. So, when you were tiny and I was reeling, I latched on to the promises that you could be just like any one of your peers.However, when I watched your big brother tackle kindergarten this past year, I knew from the very beginning you were not ready for that. In fact, I didn't know when you were going to be ready for that at all. I was hoping an extra year of growing and therapy would get you there, but I wasn't certain it would make much of a difference.

And when we couldn't find a preschool that was eager and ready and jumping at the chance to have you next year, I had to adjust my expectations for what school was going to look like for you. We researched all our options in our public school district and came to the conclusion that you were going to be best served by being in a Self Contained Classroom. In fact, they were the only people we talked with who were so damn excited to have you that they changed your dad's mind within the first 5 minutes of talking with them. Without having met you at all, they were already thinking about the best ways to engage you. They helped us think about your education in a big picture kind of way and encouraged us to not hold you back this year. They want you now. They want you to have everything you can possibly get from this system, flawed though it may be. So, we said hell yeah. We want you to be the ones that our son spend his days with.  

I know that as you get older, we are going to come up against this kind of problem again and again. I'm hoping that as we go along this journey together, we continue to find the people who look at you and say, "Him. We want him." That there are people out there who see you for your potential and not your problems. And I promise to try to remember that myself the next time you throw the iPad in the bathtub and then run the water.

You, my boy, are nothing but potential. We will handle the problems together.