The paradox of having a child with Down syndrome is you know with every ounce of your being you would never do anything to change him, because that extra chromosome sets him apart in wonderful, unique, special ways, but you also know that those wonderful, unique, special things about your child will cause heartache for you both one day.
When Nathan was younger, people would often say, “He’s so smart!” in the way that people do when young children know letters or numbers or whatnot, and every time I would wonder to myself…Is he really? I hope he is. Honestly, I wanted Nathan to be “smart” so that he could fit in for as long as possible, and avoid as much heartache as possible.
Now that Nathan’s in school, we’re starting to see just how “smart” he is. He’s much better at reading than he is at math, and homework with him is more challenging than it was for Sarah Kate, but he’s at grade level, academically speaking. We don’t spend extra time working with him; he just knows what he knows. Harvard Law isn’t in his future, but so what? It wasn’t in mine, either. But even with his academic success, he doesn’t quite fit in.
Because he is wired differently.
On Wednesday afternoon, when we arrived home from school, Nathan and I went to the mailbox. Our neighbor and his dog were also retrieving the mail, so we visited for a few minutes. Nathan headed back in the direction of the house while I was still chatting; a moment later, I sent Mr. Andi a quick text as I walked through the garage into the house, pushed the button to let the garage door down, and carried my first load, including the mail, inside. I placed Nathan’s lunchbox on the counter to unpack it, went back to the car for Sarah Kate’s rolling backpack, and then asked her where Nathan was, because I was surprised he wasn’t playing with the new toys he got at his birthday party on Tuesday.
She didn’t know.
It isn’t unusual for him to go straight to his room to play, but I told her to check to make sure he was in there. She had suggested they watch The Good Dinosaur, a gift from two of his friends, twin girls he was in preschool with last year, and I thought that was a nice idea.
But he wasn’t in his room.
And he wasn’t anywhere else in the house.
And he wasn’t in the backyard.
And he wasn’t in the garage.
I began to panic as I rushed outside. I hoped against hope that he was in the backyard of the vacant house next door, because I could see the gate was open. I ran all the way through the yard to the driveway on the other side, back toward our house, through the front lawn, and across the intersection to the other end of our street. No Nathan. I saw a neighbor boy, a few months younger than Nathan, and asked if he’d seen him. He replied he had not, and politely asked, “Where do you think he is, Miss Andi?”
I don’t know. I don’t have any idea.
I looked up and down the main road through the subdivision as I crossed back toward my house, believing that I must have missed him in the house, but knowing in my heart that I hadn’t. I ran back inside, screaming his name as I darted in and out of every room and closet. By then, Sarah Kate was panicking, as well. As I was about to race back out the door with my keys to start driving around hunting for him, she yelled from the open back door, “Momma, I think that lady found him! LOOK!”
A block up, toward the front of the subdivision, I saw a young woman carrying a small person in a royal blue t-shirt and khaki shorts. I raced out the back door, through the fence gate, and up the street toward her. She saw me coming, set him down, and they both walked toward me. When I reached them, I scooped him up and breathlessly thanked her. She told me her name and where she lived, and at that moment I began to sob. She had seen him out the window, walking in front of her house – her house that fronts the busy road in front of our subdivision.
We returned home. Sarah Kate and I cried and hugged him and I begged him never to leave like that again. I asked him if he understood, to which he meekly whispered, “Yes.” But did he understand? I don’t know; I’m doubtful. There are many things we don’t know, because his speech holds so many of his thoughts captive. If he did understand me, will he remember what I said the next time he wants to wander? Not likely.
Because he lives in the moment. Always.
Many kids are impetuous to varying degrees, which seems like the same thing but it isn’t. In t-ball, a lot of kids do Wacky Things, but the way in which they do them is different from Nathan. If a kid tosses his glove in the outfield and the coach asks him to stop, most kids continue to do it in defiance, stop doing it, or pout. When Nathan tosses his glove in the outfield and the coach says stop, he doesn’t pout, or stop, or toss defiantly… he just keeps tossing and smiling because tossing the glove is great fun right now.
Consequences, unless they are swift, mean nothing to him.
Nathan does well in school, and he’s gotten better at t-ball because of order and structure and peers to model. It’s not difficult for him to learn How to do things, but understanding Why (or Why Not) is a different matter altogether. He has all the skills needed for t-ball. He can catch, throw, hit, and run the bases. But as far as we can tell, he has no idea why he is doing any of those things, other than that they are fun, and they are made even more fun by the fact that everyone cheers loudly when he does them.
I’m logical by nature, but Nathan defies logic.
It can be maddening when I try to apply my rational brain to the subject of Nathan. I want for X to lead to Y and for everything to make sense, but he doesn’t fit the young boy paradigm, and never has. Well-meaning friends and family constantly point out to me the ways that Nathan is like everyone else. Sometimes, I even believe them…at least for a little while. I don’t enjoy my obsessive hyper-vigilance; I want to relax and let him stretch his wings. But I can’t – not completely.
If you’re that mom who’s always nervously looking around to see where your child is while the other moms relax and sip their coffee, it’s okay. I understand, even when they don’t. And if you’re the mom who sips coffee and wishes your friend would relax and not worry so much about what her child is doing, please understand that she wants to be wholly present with you.
So scary! An eye-opening post for sure, especially since I’m pretty sure you and I are wired similarly – logic rules (almost) all things. I’ll need to remember this when interacting with N, for sure!
I was sobbing by the end of this post! Austin and Reece used to wander off and I know that feeling all too well. I’m so glad God had your neighbor look out her window at the right moment, and that she wasn’t afraid to go out and stop him from going to the road. I wish I could give you big hugs because I swear people don’t understand that fear until they’ve lived it. My kids have outgrown the wandering, but I have not outgrown the hyper-vigilance. I still have a tendency to grab for Reece (now 14 years old LOL) when I see a car coming through a parking lot though it’s been years and years since she has dashed off from me in a parking lot. She rolls her eyes at me now, but that fear still lingers in my heart. Hang in there, Andi! You’re such a great mom to both of your kids! They are blessed beyond measure to have you! smile emoticon
I can definitely see myself continuing the hyper-vigilance even when Nathan has outgrown the wandering. It’s actually been awhile since he tried to wander away and I had gotten used to the idea of not having to be so alert all the time. Time to pull out the RoadID again and see if he will keep it on now.
Oh Andi, that blog touched my heart. I needed that tonight. My sweet daughter is wired differently, but not in an obvious way, as you know. She is ADD. So am I, but I am learning her way of experiencing the world is so different from mine. We are so much alike. But, I am artistic, and outgoing with my words. My art comes forth in craft projects and big discussions and journaling, and such. She is less outspoken. She calls what I am “sappy”. I am a trained therapist, and I like to talk. I think that language and communication can bring people together and be very healing, when we learn how to speak each other’s languages. I am one that looks to find common areas of understanding and build from there. Well, my baby is now a teen-ager. And, she communicates artistically through music. She plays her violin, or her flute. She does write. But, she is less inclined these days to have a meaningful conversation with me. Yet, I know, when her eyes light up, and she tells me about something she finds interesting, that me simply listening is what she needs. So, my ability to love through sharing and telling my stories and empathizing, is not what she responds to with me anymore, and I am learning how to talk with a teen ager. I have to be more demanding, more matter of fact, stay firm, and then enjoy this moments when it seems she wants to actually visit with me. So, living with someone who is wired differently and does not respond to you in ways in which you are familiar is very trying. But, with all of that being said, she is a teen ager. And, she needs space to deal with the ambiguity of that age. I think I am supposed to be that person that states what she does not want to hear, and really pretty much she wishes would let her do her own thing. But, I know her. I know her down deep, who she is. And, I know she is strong, and smart, and has so much she can do and become. I know her weaknesses, and I know how far I can push her. And, I just keep going there, pushing and encouraging, and I stay sappy. Because, maybe those words that she finds so “annoying” right now, will stay with her. So, I told her, I am not changing who I am. I am her mom, and I like who I am. Maybe she will not appreciate what I give to her right now, but one day, she may even thank me. But, I must know that I gave it my best. That is what I must know. And, Andi, I think you are doing fantastic job. I am blessed to know so many wonderful parents who inspire me when it gets tough. I think about all of these moms that I know, and I walk back out there and say what needs to be said. I am glad Nathan has you, and yes, it sounds like a neighbor helped you quite a bit. Those unfortunate moments play in our mind repeatedly. The same thing happened to me with Hannah at her old school in Mobile. She loved Open House night, and was so unbelievably full of energy. She ran from room to room to gleefully introduce me to her teachers and show all of her work. I would stop, speak to the teacher, and then she would dart to the next room. At St. Paul’s unfortunately the way they get from the Gym to the elementary school is through a marked area in the parking lot. They are only to cross with teachers, and its very organized, except that night. I stopped in the gym, and she darted out across the parking lot as quick as lightning. Before I knew it, a car came within inches of hitting her. It all happened so fast. The music teacher, and organist at the church where we went in Mobile, happened to be nearby and rescued Hannah by sweeping her little body up and away from the back of the huge SUV, which had backed up without seeing her. Thank goodness for Mrs. Peggy. And thank goodness for your neighbor. I do believe in angels, and I think Miss Peggy was our angel that day. Or, at least one gave her a nudge. Thanks for sharing.
Yes, thank God for Mrs. Peggy and Maddie the teenager!
I needed this today! I have a 2 year old with Down Syndrome and we are already experiencing some of this. We just left the USA speech clinic and they suggested I check out your blog!
I’m so glad it was helpful for you, and welcome! Funny…a student was assigned to my son’s clinic and was working with his therapist yesterday when he went to speech. She saw me through the waiting room door and told his therapist, “Hey, I think his mom is the one who spoke to our class!”