Nicholas’ Story: A Mother’s Words
Today I would like to share my question and answer session with Gina, a mom whose son Nicholas was born with severe oral and verbal apraxia. Through the questions below, Gina explains the journey she and her son have traveled over the last several years, from the time when she first called Early Intervention until the present. Their story is unique because it is theirs; however, as we all know there are way too many children and families struggling with childhood apraxia. Gina's main hope with agreeing to do this interview was to "help some moms out there." I hope that it does as well!
Tell the readers a little about yourself and your family.
My name is Gina and I am the mother of a 7-year-old boy with oral and verbal apraxia, hypotonia and sensory processing disorder. I am by no means an expert in this stuff but I feel my story can help some other moms out there who may have lost hope. My son, Nicholas, did not talk at all until the age of 5. He never babbled or said any words at all. The only sound he made was a hum that sounded like "mmmmm." It took a long time to hear his voice and I thought I may never get the chance. The journey for Nicholas has been long and hard.
What prompted you to originally contact early intervention for your son?
Nicholas did not babble and at 17 months old, I realized he was WAY too quiet. I called the number given to me by my pediatrician and within 1 month an evaluation was scheduled.
What services did he receive originally?
Originally he was scheduled for a special instruction teacher once a week to work on play skills and a speech therapist to work on speech (which there was none) once a week also. Eventually the speech and special instruction teacher could tell he had some "sensory issues," and an OT was added to work on a sensory diet once a week.
Tell us about your experience with homecare services.
Homecare services got me started in the right direction and taught me so much about how to incorporate therapy at home during normal everyday life with Nicholas. It was one morning, coming home after work since I worked night shift at the hospital, when I said to his speech therapist I saw this thing online called apraxia and thought it might sound like Nicholas. She agreed she felt that it did fit Nicholas too and was thinking the exact same thing. I will always remember that moment. Nicholas' apraxia was so severe that it just seemed like nothing was working; although NOT at all because of the therapist but simply because my son's apraxia was so severe. Looking back he was not the best toddler to participate and often gave the therapists a hard time, but I guess now that I know how smart he really is and the fact that his expressive language was at the bottom of the chart and his receptive language was even higher than his age, it must have been so hard for him, as he probably knew inside and wanted to just say "I can't do it." Homecare services were great. They worked around my schedule and I could be right there watching the therapy so that it could continue at home even when the therapist left.
Tell the story of what happened beyond homecare services.
Beyond homecare services, we were transitioned to school age with the intermediate unit. This is where honestly, I felt like a number. I think they are so bombarded with children that your case becomes a number and it is up to you, the parent, to care enough to push for what your child needs. No one knows your child better than you and there were some great people I worked with after homecare services that did care about my child but I realized I was my child's best advocate.
Please join me next Tuesday for the second half of our interview.
Gina shares the factors leading up to the breakthrough in Nicholas' speech.