My child has always been very vocal. As a baby, she was constantly cooing, and had a wide range of sounds. As she approached her first birthday, however, I noticed those sounds had not progressed to words.
I first brought my concerns to her pediatrician’s attention at her 12-month wellness visit. The doctor responded by asking me a series of questions I knew were designed to determine if my daughter could potentially have autism. I was also positive she did not.
The pediatrician concurred, and suggested we take a wait-and-see approach. Friends and family told me not to worry; my child was simply “a late talker.” People shared stories of children they knew who suddenly and spontaneously began to speak later than expected.
I knew they were trying to be supportive. But deep down I was sure my daughter had a problem. I just didn’t know what it was.
As she continued to grow, there were still no words. Fortunately, I had begun to use sign language with her when she was an infant. She had a way to communicate, and we were able to avoid the frustration that can often be exhibited by non-verbal children.
I was back at the pediatrician’s with my concerns at the 15-month check up. This time, she had me complete a written questionnaire to see if my daughter qualified to be referred to a specialist for an official autism assessment. She didn’t.
The doctor noted my daughter’s advanced language comprehension for her age and her vocabulary of more than 200 signs. She agreed an evaluation from a speech language pathologist (SLP)– what I wanted to have happen – would be in my child’s best interest.
I was told a referral would be made, and I would be contacted once the consultation had been scheduled. There was no follow up. So I called – not once, not twice, but three times. Finally, we were given an appointment with an SLP.
The woman knew within minutes what was going on with my child. She could not make an official diagnosis that quickly, of course, but recommended regular speech therapy, which my daughter began at 22 months.
The official diagnosis did eventually come – Childhood Apraxia of Speech (CAS). It is a motor planning disorder. The brain has difficulty planning the movements needed for speech. A child with CAS knows what she wants to say but has trouble coordinating the movements necessary to get the words out.
Today, my daughter is four and a half and preparing to enter voluntary pre-kindergarten. She is a big talker. Her vocabulary and syntax are advanced for her age. The area where she is behind her peers is articulation, but she is catching up.
Early intervention made all the difference. We have worked with an amazing team of therapists. She is still in therapy and will be for the foreseeable future. But she has made incredible progress that would not have come had we simply sat back and waited throughout the toddler stages detailed on WhatToExpect.com.
If I had not pushed, who knows where we would be right now? I’m glad I learned to trust my instincts and that I did not back down until she received the support and services she needed.
Being her advocate is one of the greatest gifts I can give my daughter. I learned this early on and have continued to speak up on her behalf as she works to overcome her CAS and other challenges she has faced.
When did you learn the importance of advocating for your child? What are some of the ways you do so?
~Elizabeth Fora Ross
Elizabeth blogs about her struggles and successes as a writer and a mom at The Writer Revived and is the creator of The Mom Pledge, an online campaign to eradicate cyberbullying among moms. You can connect with her on Twitter, Facebook and Google+.