Life with Larkin

When I first learned that we were going to have a daughter, I panicked. I mentally fast-forwarded to a moody teenager yelling at me or worse, completely ignoring me. I worried about passing on my insecurities, about…well, everything! Maybe it’s these initial fears that have led me to very carefully consider my responses to her seemingly harmless questions. She absorbs everything around her and is highly intuitive, so I’ve learned to be very conscious of what my words, actions, and emotions are conveying to her.

Example, “Mama, why do you exercise?” Many a mother has probably said “Because I want to lose weight”, “Because I want to eat chocolate cake”, “Because I want to relieve stress” (and as an aside, all of these answers have been true of me at one time or another…usually all at once).  My answer surprised me, and I’ve been careful to continue to reinforce the thought ever since. I said “Because I want to be healthier, stronger, and faster so that I’m around for a long time for you and your brother.” Still she gets bombarded at school with people talking about “getting fat”, but even when we’re talking about food, I’m careful to correct her that we don’t eat 5 pieces of cake because we don’t want to get fat, we don’t eat it because that wouldn’t be healthy and it wouldn’t be good fuel for your body.

I struggle with trying to undo much of the negativity and superficial focus of the outside world. She certainly can be sheltered at times, but she’s out there every day in public school, and I just have to hope that we’re doing enough. I’ve seen many other moms (who are doing everything right) deal with any number of complicated issues with their daughters of similar age, so I guess I find myself waiting for the other shoe to drop constantly…and then she surprises me again and again.

We’ve gotten to the point over the last year where we let her watch “real” movies…you know with people in them instead of animated characters. We were watching Real Steel recently (the robot boxing movie with Hugh Jackman), and we get to a scene where there are tons of scantily clad girls, basically in cutoff shorts and halter/bikini tops. I honestly didn’t notice until Larkin said “Those girls need to put more clothes on!” Completely shocked me, until I was able to say “Yes, they certainly do!” Lord knows my midriff was never covered for a significant period of time in college (what? It was the style!), so I’m not a prude, but I very much appreciate that she already has her own sense of appropriateness.

Similarly, I worry about having a whiny spoiled brat…because I may or may not have fit that description as a young child… So again she surprises me. I was at the gym last month and saw that the Daddy Daughter Ball was that evening, we’d completely missed that it was happening that week. I call Patrick in a hurry, intent on heading straight to the store to find her a dress, shoes, etc., and he pauses for a moment wondering whether it’s worth it since last year’s wasn’t quite as organized as the previous year’s. So we decide to ask her…I stay on the phone while he does.

Patrick: Larkin do you want to go to the Daddy-Daughter ball at the gym or would you rather you and I go do something else instead?

Larkin (after about 2 seconds): Something else, we’ve already been to the ball for two years in a row Daddy so we’ve done that enough. What do you wanna do instead?
Quickly they decide on the Lego Movie that evening. I asked Patrick later if they’d like to go to dinner before the movie, and he said he’d already asked her…and she’d said no, she’d rather just get a hot dog and candy at the movie…

So why is this important? Because 5 year old me would have demanded to go to the ball and absolutely would have wanted dinner. Because 37 year old me sometimes still has days like that. Somewhere along the way, we did something right with her.

Somewhere along the way, we accidentally molded a daughter that reads a Biology textbook for fun. A daughter who well before preschool routinely used words like “actually, possibly, apparently, obviously…” A daughter who loves bugs, books, dirt, tiaras, singing, dinosaurs, dancing, reptiles, and sports.

She has both girl and boy friends (but no boyfriends), and she’d prefer to play Transformers on the playground. She doesn’t see race, just a spectrum of skin color, hair color, and eye color with no discrete categories. She’s not a “mean girl”, sadly you can already see some of them at age 5, and she’s extremely inclusive, generally being the welcoming committee for new kids in a class since she was probably 2 years old. I’d like to be her when I grow up.

But let me leave with one thought about filtering out the negative messages of the world. The new “Ban Bossy” campaign really bugged me. It surfaced again recently when Larkin and I were reading Harry Potter and Ron called Hermione a “bossy know-it-all”. Hermione was in fact a bossy know-it-all…you know who else was at that age? ME! Hell, I’m STILL a bossy know-it-all. So is Larkin. We’ve called her bossy since before she could walk…because she is. That word holds no negativity for me. It’s a personality trait, a positive one in my book. It’s assertiveness, ambition, leadership, and intelligence. I’m still bossy, but over the years, I’ve molded those initial tendencies into what society would call leadership…which in all honesty is just being nice AND bossy at the same time. I’m kidding (kind of), but in the end, the early bossy label is actually a great compass for identifying future career paths. And with that this Mama Bossy Know-It-All is ever so proud of my Baby Bossy Know-It-All. Plus she's got the "nice" part down way better than I ever did.

The Lowest of Lows and Highest of Highs

I’ve delayed writing this post for a while. I’ve written it in my head 20 times, and I’ve certainly told the story, but for whatever reason, I’ve hesitated actually starting to type.

Autism forces you to face fears that you never imagined. Sometimes it’s fears that every parent has, but they’re just heightened in the world of autism. Sometimes it’s a fear that no parent should ever have…but we do. So this is the story of two common fears in autism…one absolutely terrifying, the other unbelievably heartbreaking. And it happened within a timespan of less than 24 hours.

It was a Sunday. I had gone for a run. Apparently, Kellen had gotten really upset when he realized I was gone. Patrick said he never really calmed down and constantly looked for me. When I got back, he seemed relieved, but I could see that he had been very bothered by my absence. Patrick went to get us lunch, Larkin was laying on the couch playing on her tablet, Kellen was sitting at the kitchen table with his iPad. I snuck upstairs to change shirts.

What I didn’t realize is that my invisible wall of security had several cracks in it. Larkin had headphones in, and I didn’t see it. Patrick had turned off the beeping that usually happens when doors open, so that he wouldn’t make so much noise letting the dog out. Patrick hadn’t locked the front door when he left.

I changed my shirt, I remember hearing the theme song from Ben 10 floating up the stairs as I did. Then I decided to fix my ponytail since I was a sweaty mess. A few more seconds. Took off my running shoes. A few more seconds. And as I came around the corner to head to the top of the stairs, I was struck by the silence. I called down as I walked a little faster “Kellen?” No answer, no noise. “Larkin, where’s Kellen?” No answer…now I see the headphones in her ears. I look at the kitchen table, there’s the iPad, but Kellen’s not there. I scan the living room and immediately turn to my right and see the front door. Open just a crack, maybe 3 inches.

That’s the moment my heart stopped. That’s the moment nightmares are made of. That is every autism parent’s worst fear. That image and moment will never be erased from my mind. I sprinted down the hall, screaming his name, threw open the door and ran out of the entryway.

And there he was. He looked to have been most of the way down the driveway, no shoes, nothing in his hands. When he heard my voice, he turned immediately and ran (sprinted) directly towards me. I never stopped running, so we collided at the top of the driveway as I bent down and he ran straight into my arms. Our faces were mirror-images. There was no relief, both of us had looks of sheer terror. Both of us seemed to be saying “Oh my God, that was almost it, I almost lost you, we almost lost each other, Oh my God, are we okay?”

I don’t know that we’ve ever hugged tighter. I don’t know that he’s ever been so still and so quiet in his entire life. We must have stayed there hugging for 2 minutes or so. Not moving. Just trying to breathe again. I remember feeling and hearing our hearts beating…they felt like they were trying to outrun each other. Yet we were still as statues.

I picked him up, never breaking our embrace. I walked inside slowly, he never took his head from my shoulder, his arms from around my neck, we walked over to the front window, and I sat down on the carpet. Him in my lap, our arms still around each other. I couldn’t move. Apparently neither could he. One minute, 5 minutes, 10 minutes later, I honestly couldn’t tell you, Patrick pulled into the driveway. When he walked in the door, he knew something had happened. Kellen saw him and for the first time we stood up, and Kellen walked off. I went into the kitchen, and as I tried to get the words out of my mouth to tell Patrick what had happened, the tears came. I couldn’t control them, I was shaking, and I couldn’t calm down. Then I feel a little hand at my side, I look down to see Kellen. He’s looking straight into my eyes, and I see his lip start to quiver, his eyes water, and I see him start to cry.

Kids like Kellen “aren’t supposed to do that”. They’re not supposed to show empathy, they’re not supposed to share emotions. But Kellen fills every day with things he’s “not supposed to be able to do”.

He cried because he saw me upset, he cried because he felt my fear, he cried because he shared my fear, he cried but he completely and fully understood the bullet that we just dodged.

I don’t think we left each other’s side the rest of the day, as if there was an invisible tether between us. You could feel the still overly emotional states we were both in. We had survived…this was the fear that I mentioned above as absolutely terrifying.

Now we get to heartbreaking, but you see, it’s heartbreaking that the fear exists for parents like us. But for us, this next tiny piece of our story is not about heartbreak, it’s about wonder, it’s about success, it’s about love.

The next morning, it’s as if we had an emotional hangover. I went to drop him off at school, and as I stood there talking to his teacher, he began to get sad. I could see him struggling not to cry, and as I looked down, he looked straight into my eyes and said, as the tears started to come, “I Love You.” I put my hands on both sides of his face, bent down, and said “I Love You Too Buddy”. And then I started crying, so we knew we had to get him inside before this unraveled. I cried through most of my drive to work, and his teacher said that they all cried after I drove away.

You see many parents of autism, especially those with initially non-verbal children, fear that they will never hear their child utter the words “I love you.” I certainly feared it. And while we had heard it many times in response to us telling him we loved him, he had never said it spontaneously, completely on his own. But there we were, having had a shared experience the day before that was still weighing on both of us, and he chose to tell me that he loved me. No prompting, no routine, no cue that we missed. He loved me, so he told me. While the 5 seconds (that felt like 5 lifetimes) he was gone made my heart heavy and weary, the 5 seconds of love between us restored my faith in all.

Yet, the fears remain. So we fight back. The beeps are back on. And we’ve changed the front lock, so now we have the ability to lock ourselves inside with a key rather than a turn lock. Whenever possible, I leave nothing to chance. And I will take nothing for granted.  

Status Check

Things are changing. Things are moving. You sort of feel it before you see it. Sometimes that feeling actually comes from what you "think" is a regression episode...except it isn't. It feels like a step backward, but if that constitutes a step backward, then what comes next is a sprint down the street.

I'm a bad Catholic (inside joke for those that know me well), but I generally try to participate in the annual Lent tradition. This year I chose not to give anything up, but to instead commit to updating this blog at least 2 times a week. It is a service to myself (hello therapy!), to my kids (who I hope will read this some day), and to the autism community (where I hope I can offer some comfort and hope to other parents and siblings).

I recently sat in an ARD meeting and willed myself not to cry. Not because it was sad, not because I was upset that I was a parent that had to be in an ARD meeting, not because I was having to fight for what I wanted for him. His teacher whom we adore, who has made such a monumental difference in our lives for the past two years, was making the formal statements required at the beginning of the meeting. This is the part where they describe the student when they first arrived in the program. This is the part where she said "Kellen came to us as a non-verbal student with a diagnosis of autism..." She went on to describe his inability to attend, to comply, to participate, and his utter lack of language, of communication, of engagement. It's as if I had forgotten where we started. It's as if it was a lifetime ago. When you focus on every little thing that isn't going as well as you'd like every single day, you forget to back up and look at how the whole world around you has shifted...how that progress means more than today's tantrum over shoes...shoes he asked for...by saying "I want shoes." You forget that that tantrum is progress, that tantrum is something you prayed for, that tantrum is everything.

Tears formed when she described his current status as verbal, as having made huge progress, as being "so smart". His teacher for next year was there, and she mentioned she was excited because he would be the only "talker"in her class. So here he is, at the top of his class already : ) She came in wearing a race jacket, so of course I loved her immediately. I think she'll be good for him as well, and I continue to be grateful for the amazing team that has been laid in our path. I'm excited for next year. Not so scared, not so sad, but ready to see where we go from here...because we are actually GOING somewhere...forward progress.

Today we got a glowing email from his teacher that he had had such a good day that she didn't want to put him on the bus! We've had a lot of good days lately. We've seen him celebrate his birthday, really. As in he opened the presents, he blew out his candle for the first time, he wore his birthday hat at school.

And minutes after the email, I logged onto his online tracking system for after school therapy and found myself staring at this graph on the front page.

About a year ago, I thought everything we had built for him was falling apart. The issues we were having with insurance, with the private school that we had put all our hopes into, I remember feeling like we had failed him. But as I sit here one year later, I have no regrets, no reservations, no "what ifs". By now, you should all know about my dislike of "everything happens for a reason" (and for those of you that are new, that developed after I endured 5 miscarriages in a row...and the reason for that was??). Anyway, I keep finding myself (and honestly even with the miscarriages...hindsight and all that jazz) thinking it again. Maybe we went through this therapy drama last year so I could appreciate what a gift it is to be able to do this for him. So that we could migrate to this dual public school/ private therapy system that has worked unbelievably well this year. So that we could get all of the right people in his life at the right time. No regrets, but definitely more questions...

Because he is progressing so well, we've got to carefully think about our next moves. Everyone believes that he has tremendous potential, so it becomes even more important to continue to keep that elite team, to continue to let that team evolve, and to let Kellen be our guide. When we started this journey, we knew there was a chance that we'd be faced with significant limitations, that we could hit a ceiling very quickly, a ceiling that would give us a few distinct choices for his education and life path. But that didn't happen. His possibilities are growing exponentially every day. With every word, with every look into my eyes, even with every stubborn tantrum. Now is when the hard work really starts. Now is when we rewrite the book. He will have far more choices in life, and we have to be good guides along this path. But he's already showing us that we haven't got a clue. He's already showing us that there are choices we haven't even dreamed...but he has. He isn't held back by what this world says he "should" do...and that's going to make this fun to watch.