Filling in the blanks

Amanda, writer of my guest post today, is a blogger I met through the Spring Chicken Tribe, a group at the SITS Girls blog support site. The Spring Chickens are primarily a group of moms with kids who have special needs. Are you a mom who has kids with specials needs? Or a mom who is personally affected by life’s challenges? (I guess that’s where I fit in!) Come on over to the Spring Chicken Tribe, and join us!

In the meantime, enjoy Amanda’s post:

Like most moms, I bought a baby book before the birth of my first child. Actually, my sister gave me one as a gift. It was so cute: baby blue, quilted with alphabet blocks on the cover.

In the weeks leading up to Billy’s birth, I diligently recorded answers to questions about me, about Dave, about how we met. The story of how I found out I was pregnant seemed sort of lame after I wrote it down: There’s only so much description you need of taking a pregnancy test in a Starbucks bathroom. (We were that excited; couldn’t wait.)

After Billy was born, I recorded all the data you’re supposed to write down: weight, time of birth, length, size of his gigantic head. It was a little late, because he was in the NICU for a week after abdominal surgery, but eventually, I got it all down.

It was more than a year later before I stopped writing, before I closed the book and stopped checking to see if there were any milestones I was supposed to record. By the time he was 18 months old, we suspected something was wrong. By the time he was two, we were pretty sure it was some form of autism. The last thing we needed was some written reminded that he wasn’t developing according to the book’s schedule.

I went through a period, around the time of Billy’s official autism diagnosis, when it was hard for me to see neurotypical kids his age. It was like a kick in the gut every time one of his friends, classmates at preschool, or cousins could ask for a glass of milk, beg for a favorite toy, or draw their parents’ attention to something they liked. By the time he was two and a half, I still had nothing to write next to the “date he pointed for the first time” or “first time he said ‘Mama.'”

In a way, I was mourning for some imaginary child that I believed I was going to have when I first opened that baby book. And then I started to see my child. Really see him.

Our journey to autism diagnosis was a bumpy one, but the upside of it was that I spent a lot of time studying my little mystery, spending time with him, doing the things that he most liked to do.

And he could do so much. There’s no space in a baby book to record “First time my child recited the entire Charlie Brown Christmas special and mimicked perfectly all the voices.” There’s no section for recording each of the successive languages – English, Spanish, Japanese, German, French and Hebrew now – in which your preschooler can count and say the alphabet. There’s no milestone date by which your baby should know the entire Thomas the Train catalog, including the lesser known new characters from the Road Machines catalog.

My son is more than just a bag of cool party tricks, though. A baby book could never record his incredibly loving nature, his courage and determination, his hilarious sense of humor and the beautiful sound of him singing. Even at 4 a.m., even when it’s the Thomas the Train theme song, his voice makes me smile.

When Ginny asked me to write about my challenges, and why I choose to blog, I thought of this: My blog is my baby book for Billy. It is the truth. It is my place to record the amazing, complicated, fascinating person he’s becoming and share his accomplishments and challenges with the whole world. It is my way of saying, “I love you, exactly you, exactly as you are.”

Life is a spectrum and Amanda blogs about it at www.LifeIsASpectrum.com.

Amanda and her son, Billy

Look for my guest post on Three P’s in a Pod!
My guest post is about…what else?
Breast cancer awareness!

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7 Responses to Filling in the blanks

  1. Wow…that is so true about how a baby book really can't show the amount of love and joy a child brings to a parent…there are some things you cannot put into words or put on paper, no matter how you try:) Beautiful post. Thanks, Ginny and Amanda;)

  2. Gosh, that's a lovely post. My own kids have no identified special needs, but one of the reasons that I blog is similar – a place to record those highs and lows that are beyond the realm of a pre-designed book, or often, my imagination.

  3. Tears here…Beautiful, Amanda! I can relate to so much of what your saying except that I have been going through all of the rearranging of expectations BEFORE we miss the milestones, since my son's diagnosis is Down syndrome. I know in advance that he will "get there" but not on the same schedule as typically developing children. And some days that's hard. Some days it's FREEING- because I know we'll celebrate BIG when he does hit his milestones and celebrate who he really is and not who I hope he'll be (astronaut…rocket scientist…etc.)Thank you for posting with such honesty!OXOX

  4. Beautiful job Amanda! In my case, I poured over the "What To Expect: The Toddler Years" where they list every milestone for every single month. Yeah, I stopped that too after about the 12 month mark when she wasn't even crawling. You're right…our blogs are our baby books!!

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