Two years ago, I never imagined myself writing an essay like this. Two years ago, my son, my beautiful, sweet Spencer was “officially” diagnosed as having severe verbal apraxia. Two years ago, I felt like I had been knocked down and didn’t ever think I could or would get back up. But, here I am, today, with new hope, and a new outlook for Spencer and his speech.
When Spencer was two, I knew that something was just “not quite right” with his speech. His pediatrician thought I was an overly worried mom and told me to wait. Wait for what? More time to pass? At that moment, I knew I had to do more. I started doing research on the Internet, and that is when I found the Apraxia-Kids web site When I read everything I could, I cried and I knew that what I was reading was all about my son, Spencer.
I immediately joined the Apraxia-KIDS listserve and read every e-mail, every day. I would sit and cry my heart out as I read about “our” children and the struggles they went through. Spencer was already getting some speech therapy at this time, but just one day a week, and his therapist would not confirm (nor deny) that he was apraxic. It was during this time that I realized Spencer needed to be evaluated by someone who specializes in speech disorders, and was very familiar with apraxia.
My worst fear was confirmed on June 6, 1999 – Severe Apraxia. My baby boy may never be able to communicate clearly. Why Spencer? Why me? Why? Even though I was devastated by what we learned at his evaluation, I knew we needed to get him going in the right direction with his speech therapy. So, we had, what I call, a meeting of the minds! (Which I will get to in a few minutes.)
After the apraxia label was in place, I found a professor of speech pathology at Indiana University, Bloomington, who had done MUCH research on apraxia and contacted her. She was very interested in meeting Spencer and we met with her several times. She agreed with the diagnosis and felt that Spencer needed intense therapy that was geared just for him. She agreed to come to Spencer’s IEP meeting and help coordinate his therapies.
The meeting of the minds involved the Professor from I.U., Spencer’s SLP from the hospital, an SLP from the special needs preschool, and a graduate student and her supervisor from the local university speech lab. What was accomplished there was that all therapies were to be coordinated. Spencer would have a notebook that he would carry from therapy, to school and back. That way, everyone knew what was going on. They also talked about the prompt lists they would use and stick to.
Spencer started out getting four days of speech therapy, and five mornings of a language based preschool, per week. It was intense and Spencer hated it, but not as much as he did before his therapy changed to suit just him. After six months time, I noticed a big improvement, but actually, little gain was made (on paper.) My goal was to get him to be able to say his name and have people understand him. Well, I am happy to report that that goal was met within a year’s time. Spencer went from saying just “Na-Naa” to “Shpencer” with a slushy “s”.
The goal of all the SLPs was to work on just one target sound at a time until he mastered it. And, I guess it worked. In two years time, Spencer has gone from being almost totally unintelligible to over 80% intelligible to complete strangers. On his first Kaufman Praxis test, his overall intelligibility level was a 2 out of 7. Now, it is a 5 out of 7.
Spencer has worked and struggled and it is really paying off. I know that he may not sound “perfect” and he still has a ways to go, but, the point is, he is getting there and he will achieve all our goals.
Spencer will be starting kindergarten this Fall. It brings joy to my heart to know that he will be able to stand in front of his class, say, “My name is Spencer”, and most of them will know exactly what he is saying. Who knows what else lies ahead (reading difficulties, fine motor weakness…), but, I want you all to know that all of the time you are investing in therapy is paying off. And, if it seems that after months of work nothing has been accomplished – give it a little more time and you will be amazed – it seems like there are so many plateaus, then all of a sudden, your child will be talking.
Spencer has a wonderful future ahead of him, and so does your own child. May they all be the great communicators of the world! Thank you for letting me share this story of Spencer.