Featured Guest Blog: Learning To Be My Child’s Advocate

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+.

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4 Responses to Featured Guest Blog: Learning To Be My Child’s Advocate

  1. nhokkanen says:

    Congratulations on your daughter’s advanced speech development! Bless you for pushing to get the best services for your child. Yes, early intervention does make a huge difference. My son had speech therapy both at school and with an outside provider; today he’s quite articulate.

    My son’s VICP case was tossed out because at 15 months I mentioned a possible speech delay — one autism symptom — to his pediatrician; however the diagnosis didn’t come for two more years. And your daughter’s speech delay at that age did not qualify her for a specialist’s official autism assessment. Contradictions abound, especially when business and government deny services to tax-paying consumers.

    • Early intervention has been proven to make a difference in so many childhood conditions. But modern medicine and the insurance system are slow to catch up, as is often the case. Which makes it even more important that we advocate for our children. No one knows them better than we do.

      Thank you for your comment!

  2. Professor says:

    Thank you, Elizabeth, for your story. It sounds eerily similar to mine in many ways. My son did the babbling and seemed so eager to talk. He said “dada” at 9 months and seemed to know what it meant, but he never built on it. At 14 months he had four “words” and then at 18 month he had a different four “words.” Your SLP was gutsy. Mine wouldn’t go near a diagnosis of apraxia that young, but when I read the description I knew right away that it described him. We did a lot of biomedical interventions that helped much more than the speech therapy. I think his may have been more severe, too, though, because he couldn’t sign either. I tried repeatedly to teach him signs and he didn’t seem any better able to figure out how to get his hands to do it any more than his mouth. He just turned seven and is in second grade now, and virtually all articulation issues are gone. He nailed the last sound just ast school ended in first grade. I believe we are very close to seeing the end of his IEP.

    • That must be such a great feeling! For you and for him (but I imagine you understand the significance better than he does). I’m so happy to read about his progress.

      I do think my daughter has a mild case, b/c while she has struggled, it has not been as difficult for her as other children I know or have heard about who have CAS.

      Our SLP made the official diagnosis as early as is allowable to try to get us insurance coverage. To no avail. We’ve had to pay out of pocket for all her therapy. Only speech issues caused by injury or related to autism are covered by our plan. But we’ll never regret getting her the help she needed.

      Thank you so much for your comment, and sharing your son’s experience…

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