A Letter To My Son in the Hours Before His Autism Diagnosis

Baby Boy,
I love you so very, very much-- all the way from your blond curls on down to your sweet midget toes. Please know that today and every other day that has passed or will come to pass... you are perfect just the way you are.

Today we are going to a clinic. In that clinic some people will play with you and talk to me. At some point, someone will tell me "Your son has autism" and I will probably cry. Baby boy, please know I am not crying because you are broken. I am not disappointed in you.

I am crying because autism makes your life more challenging in some ways, just as it makes my life more challenging in some ways. I didn't want anything to be hard for you, but because of autism some things will be. I am sad that autism happened to you, that anything hard happened to you. But I am not crying because of you.

Baby boy, you are not different today than you were yesterday. The only thing that that will change when the people in the clinic say this is autism is that we will have a language to understand you and explain you. The word autism simply gives the grown ups a label that we understand and we will use it to find ways to help.

Baby boy, I do not love you less today because you have this new label. I do not love you less because you are autistic. I will never love you less because you have autism. You are perfect to me, you are the child that God intended you to be, and you do not have to be fixed to be loved or valued. I would not trade you in for another child, I would not start over, I would not give up a moment of my life with you. You are my sweet child and I will always love you and will always be so thankful for you.

This new label does not define you. Autism is a part of who you are, a part of our family, and we are in this together. Baby boy, never forget that you are more than autism. You are a bright, inquisitive child. You are an old soul, with wise and kind eyes. You have a tender heart and a fascination with trucks and sirens. Autism doesn't change any of this.

When you get older, you are allowed to think autism is unfair. You are allowed to cry about it. And when you do, I will hold you and whisper encouragement in your ear. Then I will have you look at your reflection and describe the beautiful soul I have the honor of calling my son. We will think of ways that autism has changed our lives for the better. We will think of ways we can use autism to change other people's lives for the better. We will talk about the other labels we can use to define you, and how when they are all put together they make a unique and beautiful creation.

A beautiful and perfect creation in my eyes and God's eyes. You are loved. You are loved. You are loved.

Momma

The Way He Is

So it turns out I'm not good at this Advent Photo a Day bit. That's what happens when you're a single mom to a child with unique needs, wrapping up grad school, balancing a full time intenrship and part time work, job searching, and just trying to exist. But I'm not going to feel guilty about it. Advent is when we're supposed to Be Still and prepare our hearts. So while I wanted to use photographs and writing t document that, Life pulled me in another direction.

I had no way to know what motherhood would look like for me-- how high the highs would be, how lows the lows could be. I didn't understand Mom Guilt until I served my time in the trenches. I didn't understand helpless until a piece of my heart was walking around independently OUTSIDE of my body. Even still, I've only just begun my journey as a momma.

When you have a child that has chronic illness, it changes the game. When you have a child with a developmental delay/disorder, it changes the game. When you have a child with both, all you can do is hang on for the ride. I never know what to expect from one day to the next. I'm a planner, I like to control, I consider my options and go for the path of least resistance. But my sweet boy... he has lifted me from my world of Black & White and compelled me straight into a world of Grey. Almost completely Grey. Nothing is concrete, everything is forever shifting. This is not easy for me. It's Hard with a capital H. Still, I'm thankful for every day of living in the Grey Areas with him, because it means he is here, I am a mom, and life is good. My child has forever changed me, in ways I never could have imagined, and I will forever be grateful for his sweet little soul.

On the harder days, I have to remember the beauty in the insignificant little details of Life. I love the smell of his sweet breath, the lone freckle on his cheek, the furrow of his brow when he's engrossed in something. I love his wild and unpredictable curls-- they remind me of life, always changing, sometimes wonky, but always beautiful. I love his midget toes (one on each foot!). I love the way he still turns to me when he needs the world to Be Still. I am his rock, and he isn't afraid to let me know that. I cherish the moments when he comes out of his world and invites me to join him there. To examine a truck, to listen to a far away siren, to read a book, or bust a dance move. I love his tender spirit, and that he still trusts me even though I am the one that delivers him to appointment after appointment. I love the sound of his laughter when he throws his body into a bounce on his big yellow ball. I love the way he moves my glasses when he needs to really see me, to look into my eyes, to know that we're okay.

He says the funniest things. Yogurt Pants. I so smart. Sad baby. Say yes. And when he needs something, he neeeeeeds it with 13 syllables.

Life with this little boy is a gift. I will forever be grateful-- even on the craptastic days-- that I have the honor of calling myself his momma.

Peace

Day three in the Advent Photo challenge brings us to peace. This season seems like it is full of peace and wander and smiles and all the wonderful things in life.

(Today was crazy long, so I'm heading to bed to read to enjoy my very own peace!). The sleepy cheeks below with his curly hair and pink face has inspired me. Until tomorrow... :)

Bound

Advent Photo-A-Day Day 2 brings us... Bound!

Personally, I'd say this little boy is bound for greatness.  Today he had one of those knock your socks off amazing days. He was just ON.

He even pulled out 'TayBear' (his teddy) and practiced dressing him, bathing him, wrapping him in a towel, and reading him his bedtime story. I freaking melted. So cute. Days like this serve as a great reminder that all the hard work we're doing is paying off. Like he was saying all weekend on repeat, "I so smart!"

Until tomorrow... :)

Go

A friend posted an update and encouraged her friends to participate in a Photo-A-Day Advent activity. I like this, because it reminds me to slow down and remain present in this season. Holidays are special, Christmas is magical.

In the months since I last wrote, I have learned so much about my son (and myself). I love my little boy to pieces, but I have done a great deal of grieving this year as I let go of the idea of the son I THOUGHT I had an embraced and celebrated the son I ACTUALLY have. As I post photos for the Advent activity I'm sure I'll delve into this in greater detail. But for now, I just want to participate in this activity to remain connected to the season and remind myself of the blessings surrounding us.

Today's photo inspiration: Go.

His tiny little shoes (that seem so big compared to only a year ago!) always make me smile and remind me how lucky I am that this beautiful little boy made me a momma. He's always on the move these days, and I wouldn't trade it in for anything.

Until tomorrow... :)

His Roots

When I was pregnant and only I could feel the flutters of my unborn child, I had a dream. In this dreamy fog, my precious baby boy was born with Down Syndrome. As visitors came to the hospital they had such profound sadness in their eyes. Maybe it was because they didn't know if a single mother could care for a baby with special needs. Maybe because they thought my son was broken. Maybe both. In my dream, I clutched the sleeping angel to my chest and pleaded with our friends and family to see how perfect he was, how perfect we were together as mother and son.

Despite healthy ultrasounds and a total lack of red flags, after that dream I quietly wondered if my son would be born with Down Syndrome.

The morning he was born, the doctor handed me a writhing and screaming beautiful baby boy. The first words my son ever heard me say were, "He's so perfect." And then I burst into tears. The happy kind-- and the oh-my-good-LORD-I-am-glad-that-is-over kind!

As we started our lives together, I felt foolish for letting a dream influence me so. I felt certain that my son would be born with special needs. But there he was, bright eyed and alert with no signs of any challenges.

But still, I worried. I was frustrated with myself and thought I was over thinking, over analyzing. But by his second birthday I was starting to understand that something was a little off.

Today, my son is a vivacious and energetic two-and-a-half year old. He loves to dance, he loves trucks, and he loves to cuddle.

Today, I am also learning that my mommy instincts were right all along. My sweet, amazing boy has unique needs and I'm only now beginning to understand what this means for us. As he grows and develops, his deficits and challenges are becoming clearer. 

Today, my son continues his evaluations to determine the cause of his developmental, social, and behavioral challenges. We don't have a label today, but I expect we will in the coming months.

Although he is no longer a small bundle of newborn joy and we aren't at the hospital with me pleading with loved ones to understand how perfect he is, I still carry my son close to my chest. I still want our friends and family to understand how beautiful and perfect my sweet boy is.

Through writing, I want to help our loved ones understand his challenges. I want to help everyone understand his strengths. I want to help everyone understand how we can love him best.

As the Proverb says, “Storms make oaks take root.” Our story, this story, is now the one of how my son grew his own strong, unshakeable roots.