Cece’s Diagnosis

Hey everybody!

Everybody knows how crazy I am about my baby girl, Cece. I’ve written about her so many times on this blog, and for those of you who have been faithful and loyal Benny Blog followers, you have watched her grow… from birth to present. You’ve seen her dress as Mrs. Claus, as a Benny Bride, an Olympic champion, Marie Antoinette… you’ve seen her crawl, walk in fields of flowers, give me kisses… and you’ve followed our adventures to Chicago, multiple Yo Gabba Gabba performances, Mexico and California vacations (she loved the San Diego zoo!). Well, today’s post is about Cece. Specifically, today I want to share something unique about Cece:

Cece has been diagnosed with Autism Spectrum Disorder (ASD).

While I never saw signs of it as an infant (she would hold eye contact for long periods, and wouldn’t be bothered by lights, loud sounds, or schedule interruptions), I’ve had growing suspicions over the past 12 months. It’s mostly manifested in her lack of speech. Only our close friends and family know that Cece still doesn’t talk at 31 months old; she has said a couple of words appropriately (“Yay,” “yea,” “up,” even “outside”), but the words in her vocabulary don’t stay long (she used to mimic animal sounds when we’d play with her, but she would forget how to make them after being able to do them for any given period of time).

Lately, she’s also become very upset at not-very-upsetting things. When a classmate would spill his milk, Cece would see and become extremely upset… inconsolable, actually. At home, I can calm her within 10 seconds with my magic daddy charm (I’ve got a couple of tricks up my sleeve that Cece just loves), but at school, she cried so hard and long that she wore herself out and went to sleep. It broke my heart to hear that news when she got home… to think that she was upset and couldn’t communicate why she was upset. It literally broke my heart (I couldn’t get it out of my thoughts).

Imagine, if you will, for a second… you’re no longer able to talk. You know you’re supposed to… you might even hear the words in your head that you want to say, but you don’t know how to say them. Or maybe you don’t know the words… you can’t even remember English. This is what I imagine Cece experiencing when she can’t talk to us the way she wishes she could – when she is frustrated and can’t communicate what’s wrong. As a parent, it’s devastating. As a parent, you want to be there to help your child, and honestly I just feel powerless sometimes.

Cece has been in speech therapy for more than a year (and we’ve been so pleased with her therapist and Cece’s progress), and we recently enrolled her full-time at the Elizabeth Richardson Center, a school specializing in helping children with developmental delays. All the while, we’ve been on a waiting list for an ASD screening, which finally took place Monday. The months of being on the waiting list didn’t give us time to prepare for the news. During the 10-month waiting period, I’d find myself at Barnes and Noble in front of the books about children with special needs and then tell myself, “go away… you don’t know if you need these yet.” Or I’d take a break from working on my laptop and go to the autism speaks website, but then I’d navigate away, telling myself I’d cross that bridge if/when I get to it.

It’s time to cross the bridge.

I broke down (in more ways than one) and bought a few books last night, and have been pouring myself into the interwebs trying to soak up as much information as I can so I can understand my sweet Cece better. I already know so much more about how her unique little brain works, and let me tell you this, y’all: I thought I couldn’t love Cece more than I did before. Lord, was I wrong!

*****side note: Y’all, Cece is such a sweet and loving little girl. She is affectionate to me and runs to me when I come in the door from a day of shooting. I can make her laugh (belly laugh) by playing silly games with her and can make her smile just the way I say her name. {I realize that some of those things don’t indicate normal behavior of a child diagnosed with ASD, but my Cece isn’t just any girl} – for those of you who know Cece personally, you know this!

After the day-long, intense evaluation of Cece yesterday, I told myself that no matter the diagnosis, it would be a fair one because Cece was completely herself during testing. It was an accurate representation of who she is, and I’d accept whatever the doctor said. The words came (in slow motion, it seems), and despite my expectations, it still hurt because every parent just wants their kiddos to have a fair chance at a normal life. Cece’s road is going to be a little more challenging, and our road as parents just got a little bumpier. The doctor made a special note to say (and I’ve seen this over and over in everything I’ve read in the past 24 hours), “Cece is still the same girl who walked in here this morning,” and I should add, happily walked in with a cute black bow in her hair. She still loves to play, be silly, sort things (you should see her get going on this!), laugh, run, jump, play the piano, and hold my hand as she walks alongside me wherever we go.

I’m currently sitting in the lobby at Fayetteville Public Library (I sit here and work sometimes), where dozens of moms have carried, strolled, or walked their kiddos in to find books, and I’m taken back to a time when Ellie and I used to walk in this same library for toddler time. Ellie, who is the brightest and sweetest, nurturing child you’ve ever met (if you know her then you’ll know it’s not just a fatherly exaggeration)… and I think of how different this next go round is going to be. Different sure, but I have hope that it’ll be equally rewarding, and maybe even more beautiful, knowing that Cece is playing a rigged game where the house usually wins. I hate to think of Cece as an underdog, except that I’ve always rooted for the underdog (I’m a lifetime Cubs fan, after all). Maybe I’m ignorant or in denial, or maybe I’m hitting the mark… but I believe with my whole heart that Cece is going to do amazing things for the world. Her disability is going to open doors for her (it has already opened doors to new therapies since the diagnosis yesterday), and I know that Jesus loves my baby girl, and He has plans for her that surpass my understanding.

For those of you reading this who have experience with ASD (I was a teacher and received training, but it’s been years, and much of the research has already changed), you know so much more than I do about what I’m about to go through – please feel free to reach out to me, or maybe just pray for me that I:
*keep my cool,
*stay patient,
*stay empathetic,
*be patient with others who don’t understand Cece,
*be articulate when I need to have conversations with those who need understanding, and
*to prepare my heart for whatever is going to come our way.

As I left, I process the question: “how do I feel?” I answered that I feel motivated. I’m not so naive that I think I can cure her, but I am going to help Cece fight this battle. I’m going to learn everything I can, fight to open doors, be there for her… what any dad would do. I feel very motivated to be her advocate for life. Maybe she’ll never be able to tell me she loves me with words (or maybe she will!), but my Little Fireball will have no doubt that I’m crazy about her.

I’m going to end this post with the same text I ended the post I wrote on the day she was born. How fitting these words have become (I was writing about how Cece was the start of a new adventure):

“But that’s the thing about adventures… they’re not all fun and games, and sometimes it doesn’t turn out like you plan. They are unusual. They are often hazardous. But… they are exciting! And I’m excited to see where this adventure leads.”