As a child development major in college, I was concerned when my daughter was 12 months old and I had never heard a sound come out of her (other than cries). I worked with children that had all sorts of problems (emotional, developmental) in the mental health field. A 12 month old that never made sounds, though, this was a whole different thing. My best friend in college majored in speech pathology. I called her up one night when Rebecca Lynn was 15 months old.
“Should I be concerned?” I asked.
My pediatrician wasn’t concerned. People kept telling me, “she will talk when she is ready.” My best friend’s response was, “why not get her assessed?” So I did. At 18 months old, Rebecca Lynn started speech therapy. She was in the Early Childhood Program through Wake County. My thoughts were, a few months of speech therapy, and she will be all caught up. After a year and a half of speech therapy, and three different speech therapists (right before the third went on maternity leave and Rebecca Lynn was aging out of the early childhood program), the speech therapist looked at me and said, “Have you ever heard of Apraxia of Speech?”
I looked at the speech therapist as she went on to explain this neurological disorder that doesn’t allow the brain to make a connection to the mouth. This results in a severe delay in speech, along with learning disabilities and speech issues for, quite possibly, most of her life. I was, to say the least, shocked. “Are you sure this isn’t a delay?” I asked.
She always has been a stubborn child. I took myself to the library one night, and I researched Apraxia of Speech. The disorder is caused by trauma. It ranges from mild to severe. The disorder causes kids to have low self esteem; could cause kids to be bullied for the way they sound; and they may never make social connections necessary for school. As I read the symptoms, I felt like I was reading a story about Rebecca Lynn. I felt God telling me the answer. I have a daughter with Apraxia of Speech.
After months of denial, guilt, and trying to figure out a course of treatment, I finally heard God say, “Here is your chance.” I had been frustrated at work for months for not getting promoted. I finally felt God saying, “this is where you need to be.” I started getting involved. I signed up for the 2014 Apraxia walk. I was inspired to see so many other people there that had children similar to Rebecca Lynn. I was inspired to see children who had started making progress and were talking. After that walk, Rebecca Lynn got approved for an iPad with voice recognition. At first, this made me think, “wow, she is really severe if she gets approved for that.” What God was saying was, “here is a resource available to you.”
So I continued learning, educating myself and others. I have been writing letters to our governor to get a day where we can celebrate and recognize Apraxia. By the way, Apraxia Awareness day is now May 14! I have signed up to coordinate the Apraxia walk in Raleigh this year (mark August 29 on your calendars). I am also walking in the Cincinnati/Northern Kentucky walk in September. I am getting to know many wonderful people in a new community. I am also able to be a resource for people whose children have Apraxia of Speech, and they are looking to me for answers. I hope to have the opportunity to teach baby sign language, because that has helped Rebecca Lynn immensely to communicate with others. Yep, this is what I am supposed to be doing. This is where God has called me.
Oh, the frustrations are there daily. We have been through 5 speech therapists. Insurance won’t cover speech therapy, so she is not getting the treatment that she needs even with the diagnosis. I get so tired of explaining why my child isn’t answering to strangers. I am tired of getting looks from people because she carries an iPad around with her. I get frustrated with Rebecca Lynn. One of the words that she does say is, “mama.” Well, she says, “mama” ALL DAY LONG, because she can. It gets real challenging, but God is my coping mechanism. He reminds me daily that I can do this. When I see the relief on her face when she gets her needs met, when I see her sign or use her iPad, these are all daily blessings and they daily wash away the frustrations.
At three years old, my daughter can say three words. Every day, I see God through her. She’s brave, she’s confident, she interacts with others, even when they question her. She trusts and knows that one day, her brain will work properly. Until then, she has this amazing support team. When God made Rebecca Lynn, he knew what he was doing. He knew that I needed a child like this in my life to teach me patience, to teach me to trust in him and to teach me that his perfect timing is everything. As a working mother, mother of two, and a wife, there is not a day that goes by that I don’t think “is this my fault?” “Is there more I could do”? “Do I need to quit my job and do more for her?” Well, here are the answers that God has given during times of prayer: God loves me!! He has given me the greatest gifts in the world. He has given me a job that I get to help and treat his creations and be a part of their recovery journey! Why would he tell me to stop doing that? This is not my fault! Speech issues run in my family. So does diabetes, bad teeth and poor vision. This stuff happens, and if God gave it to me, he will get me through it. I am doing the best that I can do!! I make time for my family. We do activities together, eat together, learn together, and I have been very proactive in getting Rebecca Lynn the help she needs. I feel confident (after months of convincing myself) that I am a good mom and with the support of my coworkers, husband, family, and church family, we are all pulling together to help my child.
God speaks to us through the strangest ways! I never thought I would be so involved in something. I never thought I would have so much passion for children with speech disorders. When God wants you to do something, he will put it in your life. So, here I write with a heart full of gratitude and hope. I am thankful for my life. I used to compare my daughter with others. “Well, she doesn’t have nearly a bad a disability as that child.” Though, that might be true, this is still a disability that Rebecca Lynn has to live with everyday. We have no idea what the future looks like for her as far as education and social life, but what we do know is she is in good hands. We have hope that she will talk one day. I picture Rebecca Lynn speaking at her high school graduation. She will inspire so many as she has already inspired me!
~Heather Waite
*~*
This post appeared for the first time on our Family website, northraleighchurch.org. Please visit sometime and connect with us there as well!
North Raleigh Church of Christ Ladies' Ministry 