The Wonderful World of Denial-Land and How I Escaped

“I’m going to say something during the appointment” my husband said on the way to our daughter’s one-year pediatrician check up.

“Why?  It’s nothing.  Seriously. Why even bring it up?”  I said in a strong tone but really was begging him not to take our new, adorable, happy, drama-free family down a path I knew we were already on.

Let’s go back one year prior to when our newest daughter was about to be born.  We were holding our breath waiting to see her because after our anatomy scan at week 19, where they found a soft marker for Down Syndrome, we had not had anymore ultrasounds.

When she was born she was a petite nugget and was as my husband described and yelled when seeing her for the first time, “She’s perfect!”

This feeling was fleeting to say the least.  I noticed some odd things almost immediately, such as, she could be full on screaming and the second I took her outside she would be silent and could watch the palm trees sway for hours; she still does this.  Also, as a new infant only fans and lights on the ceiling made her coo but she was hitting all of her physical milestones like a champ so no need to worry, right?

Then at six months old we sat her down to watch her first cartoon. She was in her bouncer “standing up’ and she started violently flapping and tensing her whole body during the intro song of the cartoon.

I knew right then something wasn’t right.

Which brings us back to our one-year pediatrician appointment where I can pinpoint the exact moment I found the tranquility of a wonderful land I had never visited before yet instantly felt at home in…Denial-Land.

We were in the little room surrounded by kids books and germy toys finishing up the growth chart chit-chat. I was beyond anxious to leave, fast, without hesitation and imagined myself yelling, “JUST BILL ME!” as I grabbed my perfect baby and ran far way from all of this.

“She’s growing so nicely. Especially for being a little peanut.” said the pediatrician.  “Is there anything else you want to discuss?” she asked.

Before I could get anything out my husband chimed in, “Well, we were wondering why she won’t look at us anymore.”

My heart broke into a thousand pieces.  I can’t even tell you what she said from there except her calling Sadie’s name, doing a hearing test and then saying, “Let’s keep an eye out for autism.”

Do you know what that feels like to hear a statement like that for the first time?  It’s like watching a movie where an explosion goes off and they can’t hear, they stumble around a bit, and get tunnel vision….it is like that, yes all of that.

By the time we had gotten into the car from that pediatrician visit I had already bought a home in Denial-Land, moved in and was re-decorating.

(Sidenote: It’s funny because later my husband and I completely flipped roles soon after this period.  I guess we need Ying with the Yang when facing difficult hard to grasp realities.)

Denial-Land lasted about a year for me.  She was still so young that no one noticed.  Was this the only time I would experience her like other Mom’s experience their daughters?  Is this the only time she wouldn’t be gawked at because of “The Autism”? We held on to the hope that tomorrow she would wake up talking and being social and we’d all get a big laugh out of all this worrying mess.

Until tomorrow never came.  She wasn’t a late bloomer. She was our daughter and autism was here.

I knew.  I knew what was coming so much so I would practice saying she had autism on unsuspecting Trader Joe employees (shout out to those Mission Valley San Diego and Temecula, CA employees). Without even knowing it they helped me get over my inability to say the “A” word in public about my daughter.

A few months later she started doing what we called “Baby Hulk” episodes that looked like seizures.  We took her to a neurologist, who after spending just a few minutes with her, looked at me and said, “Has she ever been tested for autism?”  and just like that the Sheriff of Denial-Land stormed my cozy home and put all my baggage on the front lawn. I’d been evicted.

I’m not sure what it was about this neurologist. Maybe I just needed to hear more of a firm statement, maybe I truly saw it, maybe it was meant to be…either way from there we dove in head first to ABA therapy, two-hours a day Monday–Friday and now have an official diagnosis of autism.

We had been through test after test, evaluation after evaluation, progress report after progress report and still with all of this proof and I couldn’t bare to fully say good-bye to Denial-Land.  I wasn’t ready to forward my mail quite yet but I just knew after the diagnosis I would be ready. I kept telling everyone that is what I needed to finally move forward and for about two days after the diagnosis that was the case.

Then I found myself revisiting Denial-Land.

Seriously. I wasn’t moving back but I definitely was checking Zillow to see if the property value went up and to view old pictures of my cozy house in Denial-Land, USA so to speak…

I knew what had to be done.  I needed to come out of the closet.  I needed to honor Sadie, set boundaries and ask for a community.  I wrote and rewrote the Facebook coming out message for months!

Finally, one day I said to my husband, “I’m ready to go public. What do you think?”  He agreed and I posted our message to friends and family. He then said, “Oh, you meant today?!” The support was overwhelming! You don’t know the extent of your village until you ask for one.

Acknowledging, allowing myself to move through the stages of grief privately, and then being mentally healthy enough to do my daughter and the autism community justice by educating, setting an example and aiding other newcomers joining our autism tribe is how I escaped Denial-Land.

In closing, I can say facing reality and the unknown of what the upcoming years have in store or what her future looks like can still be emotionally draining and terrifying but we try to move forward with more hope than fear.

We used to do flowers for weddings but have changed our business model completely after seeking out parents of autistic teens and adults who were less than encouraged by the job market for their older autistic kiddos.  In The Open Flowers now delivers everyday arrangements for birthdays, anniversaries, and so forth.  We teach skills to our buddies and bring them on deliveries to enhance social skills; hopefully encouraging them and reminding me to Bloom on the Spectrum.

Written by, Meredith Lea

My name is Meredith Lea and I live in Southern California’s finest wine country, Temecula!  I am married to my unicorn husband (one in a million ladies) and we have two kiddos.  Candice, 14 and Sadie 3.  While not advocating for autism and giving out hugs to new autism Mama’s I run a flower store, In The Open Flowers, which teaches work skills and aids in social skills through deliveries with intellectually disabled adults.  After a long dark journey I wanted to do something that signaled hope which is why our motto is to help others Bloom on the Spectrum.