Facing an Irrational Fear: Why I Can’t Swim at 38.

I can’t swim. People often mistake that for “I don’t swim” or “I don’t want to swim”, but I truly and absolutely CANNOT SWIM. This simple and stupid fact terrifies me.

I went to swim lessons once. At Larkin’s age now that I think about it, just a few days after kindergarten ended. Swim lessons in my small town consisted of everyone heading to the city pool to be separated based on age and taught by local high school students. I had a summer birthday, and this was back in the days when school ended in May, so I was still 5. This meant that almost all of my friends were in a different group. I can’t remember if I made it through 1 or 2 days…

I remember blowing bubbles in the water, I remember Ring Around the Rosie where we were all supposed to go underwater…I cheated and always kept my nose above the water, sometimes struggling with the person next to me because they had my hand and they were pulling me down. And then I remember seeing the other class head over to the diving boards. And I saw one of my friends panic and decide that he wasn’t ready for diving…and then I saw them push him off the board anyway, him screaming bloody murder the whole way down. My grandma saw it, too. I cried and panicked…and that was the end of it. I never went back to swim lessons…ever in my life.

My friends had pools of course. I would get in, with a death grip on the side. They’d all try to teach me, to slowly coax me into trying, but I would always panic, and they would always realize that it just wasn’t going to happen. So then they’d always have a life jacket waiting for me, which I could comfortably maneuver in, careful to never let water anywhere near my face, always checking the buckles on the jacket.

And then we got older and boys started getting in the pool with us…and then the same story repeated itself endlessly. EVERYONE wanted to teach me to swim. Inevitably one of the boys would offer oh so sweetly to help me loosen that death grip on the wall. They’d hold on to me and swear that there were not going to let go. We’d slowly make it over to the deep end, panic slowly rising…and then guess what?

They let go.
                Every. Single. Time.
And then I’d panic, go under, and someone would have to pull a flailing, choking, mess of me out of the pool.
                Every. Single. Time.
They all seemed to be under this notion that I really could swim. That if they just put me in a “sink or swim” situation that surely I would swim.
                Nope, I sank…over and over and over again.

There was this one boy that tried to teach me to swim. He even had me putting my head under water for very small periods of time, never letting go of my hands. He took me to the deep end, but never let go. He was the only one that never let go. So I married that one!

Patrick has been wonderfully patient with my inability to swim and irrational fear of water deeper than my waist. I’ve sworn many times that I was going to learn…but I’ve never followed through, or even set foot in a pool with intent.

I really meant it when we had the kids. I knew how important it was going to be for 1) me to be able to swim for their safety and 2) me to not pass on my fear…  Larkin’s asked for swim lessons this summer, and I’ve run out of time. Any day now she’s going to realize that I really can’t swim (I generally avoid the subject, but the one time we talked about it last summer, I think she thought we were joking). And Kellen loves the water. He is completely fearless, and I need to be able to keep him safe. I need to know that if it came to it, that I could jump in the water and get him. Because right now if he were in danger, I would absolutely jump in…but the odds would be good that I’d drown us both…and that terrifies me.

The idea of me being comfortable in the water is completely inconceivable. I just don’t understand how it will ever happen. I don’t even know where to start. I don’t understand how this body that has failed me in the water my entire life, this supposed innate ability that I was NOT born with, I don’t understand how all of that is going to float away (get it…float?). Speaking of, I CAN’T EVEN FLOAT!

Besides doing this for the kids (which is the #1 reason!), I (we) have missed out on a lot of things because of my fear of water. We leave for Grand Cayman in just over a month. There are amazing things to see and do there…in the water. I want to do them, but I know me, and I know that there is a high probability that I will freak out on day 1, refuse to get in the water again, and ruin the whole trip.

So with Patrick (and everyone else close to me) encouraging me, I start swim lessons tonight. In precisely 9 hours (and 4 minutes from when I’m typing this)…not that I’m counting. He signed me up for 2 sessions that run back to back…so for the next 4 weeks I will be going 4 days a week. This is serious. The first two weeks our goal is to get me to “won’t drown if she falls out of the boat” and  “willingly goes into the water”. The second two weeks…I want to swim . Actually swim. Like in the deep end. Like in the ocean.

I can’t see how that is going to happen. I can’t swim. I also can’t say that to myself anymore after 7:14pm this evening. Right now, I panic. At 7:15, I will commit myself to getting over this fear. I will commit myself to trying my hardest to do what the instructors ask me to do.

I sit here, and I think about all of the failed attempts as a child, as a teenager. But I’m not that girl anymore. She was scared (of EVERYTHING), she was not the least bit athletic, she had a very loud voice at home telling her that she “can’t”.

I may still be scared, but today, I will not be afraid to face it head on.

I once lacked confidence in my body, unsure if I was strong enough, coordinated enough, athletic enough to physically be able to swim. No one would have ever envisioned that girl running marathons. But she does.

I once had someone constantly in my ear telling me what I couldn’t do. Now I have the support of the people that matter most to me telling me that I WILL do it.

Throughout our lives we are met with few true challenges. I’m going to embrace how hard this is going to be, how many negative thoughts I’m going to have to drown out (oops, I said drown), how many tears I am undoubtedly going to shed.

Because WHEN I do this, they will be proud of me...Patrick and the kids.

WHEN I do this, there will be one less can’t in my life.
WHEN I do this, I will probably get bitten by a shark in Cayman because that’s kind of how things go around here.

To Larkin, On Your 6th Birthday

Today is your 6^th birthday…actually you officially turn 6 in about 30 minutes.

Lately, you and I have begun to tell old stories, which is entertaining considering that your stories couldn’t possibly be that old, but you’ve started retelling stories that I’ve shared. Some of our favorites…

Why I call you “Chicken”…because when you were a baby (maybe 2-3 months old), there was no single funnier word in the English language than “chicken”. You’d giggle uncontrollably. This is made slightly funnier by the fact that your Daddy calls you “monkey”, so you’re a chicken monkey.

Baaa…One time I was leaning over you in the car, you were just over a year old, and I said aloud to myself “What does your sheet say?” To which you quickly answered “Baaaaaa!”

Lion Limes…You first became interested in gardening at about age 3, so I told you that after dinner Daddy would take you outside to see the limes…to which you replied “Lions!? There are LIONS in the backyard? I wanna see them!”

You regularly wander into our room in the middle of the night and proceed to recount some wildly vivid dream, and then just as quickly head back to bed leaving us confused. You always want to help out…whether it’s standing on top of the refrigerator pulling the tape off after your Daddy painted or planting vegetables. You LOVE washing dishes…I’m assuming this will change in the near future. You make your own PB&J sandwiches.

This year you pulled the Thanksgiving wishbone with your brother…and upon winning said “I wish for a dog”…and then looked around for it as if the wishbone wish was the equivalent of a genie wish. You kept asking when your wish would come true…which is how a month later we ended up with Ronin…your not quite 5 month old Great Dane who is now bigger than you.

You are so smart. And because I don’t know when you’ll read this, I just want you to know that I don’t mean that just as every proud mom, I mean you are really really smart. You read well beyond where you should be, including a Biology textbook for fun, math is just second nature to you, and your grasp of science is most impressive. Your favorite thing lately is to do science experiments at home, complete with generating hypotheses, following the methods section with our help only when necessary, and making your own observations and conclusions. You’re a natural. I hope that love of science, that innate curiosity, never goes away.

You love dance class, especially ballet. You play soccer and love being part of a team. You are always asking to run a race, you’ve run 4 so far, and you have a great ability to pace yourself. I dream of us running a half marathon together someday. You LOVE to sing, and honestly, it comes so naturally to you that I’ve wondered if we should replace soccer with voice lessons…but time will tell. We want you to choose your own path, which is why we’ve recently started playing the piano together after you asked.

You are probably the most compassionate 6-year old I have ever met. I’d say that it developed because of your brother, but it was always there. You stood up for others, you welcomed everyone, you comforted all of your friends. Yet, when autism landed in our house, you rose to the challenge. You continue to surprise us with your ability to connect with Kellen, to make him work, to stand up for him. You are and will always be his greatest teacher. And you are his biggest fan.

We laugh…A LOT. We love to run errands, especially ones that involve Starbucks, Target, or frozen yogurt. You love salads, hummus, and fruit. You’re getting better on your bike, but not quite ready for your training wheels to come off, and just last week you taught your brother how to drive your truck. You love to draw, write, and you leave notes for us all over the house. The first note you ever wrote almost a year ago (which I still have), you stood at the top of the stairs and said Psssst and handed it to us. It said “KELN IN MY RM” …and yes, in fact, it seems that Kellen was in your room when he should have been in his own bed!

You police us all, call us out if we’re grouchy (for which you and your Daddy have labeled me Grinch-Ann…thanks for that), reprimand us for saying bad words (like stupid and hate), and have made us very aware of how we talk to each other. You are also VERY tall…you come up to my shoulder, so we’re on the countdown towards the birthday that you will pass me up…it won’t be long.

You have so many possibilities in this life that I can’t even picture you 10 years from now, 20 years from now…just know that we love you, that we support you, that we can’t wait to see what you do in this world.

(Also know that I went to about 10 different stores trying to find Webkinz since apparently they are discontinued but that’s what you wanted for your birthday!)

Happy Birthday Chicken!

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.

To Kellen, On Your 5th Birthday

Five years old. For any mother that age is a milestone because it means “real school” is around the corner. Autism inadvertently put additional weight and pressure on this birthday. Real or not, that deadline has hung over my head since the day you were diagnosed…I’ll explain in a second.

I remember vividly the day I realized I was pregnant with you. Surprise! I also remember being told (at 13w) that you were a girl, only to be corrected at 18w that you were in fact a boy! Surprise! I remember the morning I went into labor too early and all the panic of every minute. And I remember bringing you home as a perfect little bundle of surprise and wonder.

You were so small, but you grew so fast. I remember those chubby little cheeks (and arms and legs). From the beginning, you and I had a ridiculously strong connection. Some would say that your attachment to me was not normal, they would call you a mama’s boy, they might even have thought that I was causing the issues, the first signs. But a couple of years later, we’d hear the word autism for the first time, and then I would come to understand that I was your constant, your security blanket, your safe place in a world that was too fast, too loud, too bright, too everything. And while that bond may have made things difficult at times, it is something that I cherish to my core and am grateful for every single day. Because your bond to me is not typical for children diagnosed with autism. Because our bond didn’t care, broke through walls, and kept us from falling apart.  

You, my son, have made me a better person. Stronger, more compassionate, less selfish, and more understanding. You are helping to mold your sister into an unbelievable little girl. Beyond all of her strengths, you are her biggest teacher in humility, in tolerance, in empathy, in unconditional love. Know now that she loved you from the moment you were born. That she has watched out for you every single day of your life. That she holds no resentment over the “rough days”, that she compromises without us asking because she cares how you feel, that she is your greatest fan and teacher. When you do something she asks or make an unexpected step forward, it is pure joy that we see on her face…and pride. Know that your father works tirelessly to get us all that we need. He takes care of us all…and most weeks I’m the one needing more care than you ; ) He is my partner in every battle we’ve faced in this life, and we will keep fighting for you and your sister until the day we die (and even then I’ll haunt people until you get what you need if necessary).

At 5, you are a BOY! You are so adventurous, climbing, jumping, sliding down the stairs on your stomach for fun, climbing the shelves in the pantry, running full speed across the yard and hurdling everything in your way, and of course the trampoline is by far your favorite place these days. Your hair is unruly and this is evidenced by your school picture for this year. Your eyelashes are ridiculously long. You love Power Rangers, Transformers, and the Avengers. Your taste in music is unbelievable! The songs you find using the iPad are so complex, and I hope one of these days you will make me a marathon play list. Your favorite song lately is “Glory and Gore” by Lorde (you even sing it when you’re in the mood). You also happen to love the dance mixes that Larkin and I like to sing and dance to in the car. 

Your love of toy cars has been replaced by a love of action figures. You sing…in multiple languages sometimes. You understand static electricity and think it’s funny when you shock me. You are a problem solver, and we are constantly trying to stay one step ahead of you. Your favorite game is to get Larkin to chase you around the downstairs. The squeals of laughter from the both of you are sounds from heaven.

So that brings me to why “5” has weighed so heavily for so long. I’m a scientist, you know this by now if you’re reading this. As soon as we put a name to why you wouldn’t turn when we called your name, why you seem overwhelmed all the time, why you weren’t talking…as soon as they said you had autism…well I did my best to be both mother and scientist. One of the factors that I could not forget was that based on several studies, there seemed to be a deadline. That for whatever reason, and whatever arbitrary cutoff they set, several meta-analyses had determined that for children with autism who were initially non-verbal…well that we had until you were 5. That if we could get meaningful VERBAL communication from you, spontaneous language, before the magical date of February 6, 2014, that we would have exponentially larger hopes. Because it seems that the kids who did meaningfully communicate verbally before 5, well those kids seemed to have a different trajectory, those kids seemed to have it just a little bit easier down the road. Now I know that there are many children who do progress to meaningful communication, verbally or otherwise, even years after their 5^th birthday. But for me, my dream…not my expectation, at all, was for you to tell me something, anything, before this day.

And you did. As I sit here doing the ugly cry realizing how amazingly far you’ve come over the 2.5 years since you were diagnosed, I have to take a minute to truly appreciate where we are. When we went through our assessment in June 2012, you didn’t utter a single word (not mama, not milk, not cookie….not a single sound that meant something to you or to us). You wouldn’t look at us. You clung to me, yes, but not in a purposeful show of affection…it was a survival tactic…a need…not a want (at least that’s how I perceive it knowing what you are capable of now). I would talk about days that you were “here” or moments when you were “present”, meaning that the majority of the time you were tuned out to everything, in your own little world, in a shell we couldn’t seem to break through. I would have given anything for you to look into my eyes and just say something.

And so here we are on your birthday…it “snowed” this morning, because in south Texas, sleet that collects on the ground totally counts.  You look me in the eye every day. Actually, I’m pretty sure you know how much that means to me because when you really want something, and I’ve already said no, you come over, look me in eyes and ask again…which I just realized works every time. You say “I love you”…and mean it. You hug and you kiss, spontaneously and on request (usually by Nina and Papa). You say “Night Mama” every single night. You recognize emotions, you’ve even cried just by seeing me cry. You are so silly and you know it. You’ve recently discovered “No” and “Don’t”, and you try to approximate everything we say. My favorite thing lately is “Uhoh” everytime something falls on the floor or goes wrong. You are also a very good cleaner (unlike your sister). If you spill milk, you go straight for the paper towels and clean it up yourself, you even throw everything in the trash when you’re done, you’re actually pretty self-sufficient like that. And you’ve just started using a complete sentence “I want ….” You want shoes, and milk, and outside, and juice, and even water I’m proud to say. You’re working so hard to pronounce those words perfectly too. You also say “Power Ranger”, “Transformer”, “IronMan”, “Spiderman”, “Ben 10”(or Ben Diez because you like to watch it in Spanish lately).

So I’m going to do my best to cry as little as possible today. Because while we still have so far to go, you’ve already proven to us that this will all be worth it. You are verbal…before age 5. And I am grateful. We’ll change the world together my boy. You’ve already changed how I see the world so very much. One day at a time. Happy Birthday buddy.

Love,

Mama