Autism: How My Instincts Screwed Me Over

by Summer Ginn
by Summer Ginn

In August 2015, I took Raelyn to her one year check up… I was expecting the doctor to tell me she was doing great, give her a few shots, and tell me he’d see us again in three months. I was so very wrong. I didn’t know it then, but this doctor’s visit was the beginning of our new life. Her pediatrician was very concerned that she basically wasn’t meeting any communication milestones. He referred us to an audiologist and a developmental pediatrician.

“A Developmental Behavioral Pediatrician (DBP) provides evaluations of infants and children to improve understanding of their development and behavior to determine what they need in order to make sure they will reach their full potential and become successful socially and academically.”         Developmental Pediatric Specialists

I guess because I had my “mommy blinders” on, it never occurred to me that these milestones she wasn’t meeting were actually huge red flags. People always say, “Trust your mommy instincts. You know your kid better than anyone. If something is wrong with your kid, YOUR INSTINCTS will tell you.”

Well in this case,  my instincts completely screwed me over.

I was so blinded by the 6 pound 13 ounce bundle of absolute perfection, it never crossed my mind that anything about her could possibly be flawed.

6 pounds 13 ounces of perfection
6 pounds 13 ounces of perfection

Photography by: Lasting Moments by Tammy

Because she wasn’t responding to her name or babbling, he thought perhaps she had a hearing impairment. He referred us to an audiologist, who thought Raelyn may have auditory neuropathy since her hearing test revealed mixed results. We then had an ABR done, which consisted of having her sedated and having little electrodes placed all over her head to read her brain activity while they played different sounds through headphones. Much to our surprise, the test showed that her hearing was completely perfect. We started her in speech therapy, and chalked it up to her just being a little delayed and stubborn.

 

“She will talk when she’s ready,”

friends and family would say and we eventually began to believe this. When I took her to her 15 month appointment, her doctor asked me if I’d made an appointment with the developmental pediatrician yet. I told him no, because I wasn’t clear on why she needed to see him. I said to him, “we are already addressing the speech delay with speech therapy. So why do I need a developmental specialist to just tell me she has a speech delay? Because look at her… She clearly isn’t autistic or anything.”

He didn’t give me a very clear answer. He never said that “A word” that every new parent fears.

One of her very first speech therapy sessions
One of her very first speech therapy sessions

He simply gave me the phone number to the Marcus Center. I had no idea what the Marcus Center was. So I called and heard these gut wrenching words…

“Thank you for calling the Marcus Autism Center…”

I dropped the phone. That was the first time I had heard the A word in reference to my beautiful daughter. I was hysterical. I called my mom bawling my eyes out and between my tears I managed to say something along the lines of,

“does her doctor think she’s autistic?! She can’t be autistic! She’s so happy and loving! He doesn’t know what he’s talking about!” I cried for five days. FIVE DAYS.

On that fifth day, I called her pediatrician’s office and asked if he thinks my daughter has autism. And if he doesn’t, then why do we need to go to the Marcus Autism Center? The nurse calmed me down and told me the Marcus Center doesn’t only deal with autism, and that he wants her to go there to have her speech delay evaluated.

That satisfied me for the time being. I got her put on the 6-12 month waiting list at the Marcus Center (yes, you read that correctly…6-12 months!). I wasn’t very concerned because the nurse had told me she was just being seen there for her speech delay, and we had already started speech therapy.

Well about a month later, Raelyn got an ear infection and we had to go back to the pediatrician. At this point, I started to realize that there was more to this developmental referral than just a speech delay. My mental state couldn’t handle potentially waiting a year to have her evaluated. So I made some calls and made her an appointment with an incredible developmental pediatrician the very next week. When I took her to her pediatrician for the ear infection, I had played out in my head the way I was going to ask him what my heart already knew the answer to.

I finally came out and said, “Look I need some mental preparation for this developmental evaluation. Do you think Raelyn is on the spectrum?”  I had finally worked up the nerve to say the words out loud. He didn’t tell me “yes” but he didn’t have to… He simply hugged me and told me that we love our kids no matter what and that my family would get through this.

That’s when I knew my perfect baby had autism.

  The doctors told me my 6 pounds 13 ounces of perfection wasn’t “perfect” after all…
  The doctors told me my 6 pounds 13 ounces of perfection wasn’t “perfect” after all…

Her pediatrician saw the signs 5 months before I was capable of accepting it, and on January 14, 2016, our fears were confirmed by our developmental pediatrician, Dr. Leslie Rubin… Raelyn has Autism Level 2.

Autism Level 2. “Requiring substantial support” Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or abnormal responses to social overtures from others.

Autism Speaks

Once she was diagnosed, I had so many people tell me, “but she doesn’t even LOOK autistic!” This response would infuriate me. But then I remembered that day in her doctor’s office when I ignorantly said to her well-meaning doctor that my child clearly isn’t autistic, because she is so happy, loving, and well… normal looking.

 

So why does society expect a certain image to be attached to an autism diagnosis?

Because the media portrays only the extremely severe cases of autism… The nonverbal adults with autism, the children who are constantly banging their heads, throwing tantrums, biting themselves and having seizures.

What the media doesn’t show the world is the part of the spectrum where my baby falls… Raelyn is officially diagnosed with autism level 2, which means she requires substantial support in order to function day to day. Level 1 is the highest functioning, such as those with Aspergers. Level 3 consists of those who are the most severely affected… The type that the media portrays. Raelyn falls somewhere in the middle.

What autism REALLY looks like
What autism REALLY looks like

So no… My child does not LOOK autistic.

That’s because autism comes in every shape, size, and color. Autism does not discriminate. It affects people of every race, socioeconomic status, religion, and gender. I am begging you… The next time you find out that someone you know has been diagnosed with autism, please don’t respond with, “really?! But they don’t even look autistic!” Because that is actually incredibly offensive.

We know you mean well with your comments. We know that you don’t realize how much it hurts to have someone tell us that they think there is a particular “look” that autism has. Before Raelyn was diagnosed with autism, I actually had the same mindset. I’m not upset that people think this way. I am simply trying to educate. So the next time you have someone tell you the devastating news that their child was diagnosed with autism and you don’t know what to say… It’s ok to say nothing. Because the truth is, they really just need a hug and friend to just be there.

Click here to read my article on what to do once your child is diagnosed with autism.

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