I must admit it didn’t look very encouraging. Kimberly was approaching five and couldn’t speak, except for a sound resembling “yeah” meaning “yes”. Sure, she had a lot of issues due to a rare genetic disorder – some degree of retardation, used a walker, and wore glasses and hearing aids. But when the school SLP said she would never have functional speech, something just didn’t seem right. Actively involved in early intervention and special needs preschool since the age of one, Kimberly had made remarkable progress in so many areas – mobility, socialization, self-help, receptive language, pre-academic skills. If she could do all of these things, even learn her letters and numbers, why couldn’t she at least say mama or dada? Or babble a single consonant sound?
I left that meeting in February 1997 partially accepting the dismal prognosis because I had no idea how to “fix” the problem, but also feeling the need to seek out more information. What was that diagnosis another SLP and OT had mentioned a couple of years before? Verbal apraxia? I hadn’t been able to find any information in the library back in 1995. Maybe I could find something on the Internet.
Little did I know how much “Search: verbal apraxia” would change our lives. I quickly discovered the newly established Apraxia-KIDS Listserv, realized that Kimberly needed good, intensive speech therapy, and within a few weeks we were on the road to progress. Admittedly, the road has been slow, initially very slow, and I still don’t know where the road ends. But the most important thing is being on the right road with people to help you along the way when you need a little push or to give you a nudge when you get a little off track.
In some ways, Kimberly’s progress has been amazing. In the past four years she has changed from a totally non-verbal child to one who uses phrases and sentences to communicate. The other night when we were driving home, she clearly said from the back seat, “Mama, eat out. Go out for pizza!” Sounds like a pretty typical nine-year old! On the other hand, there are times that even my husband and I together can’t understand an isolated word. A lot of factors affect her intelligibility, and it is hard to know where best to put the effort. We wonder at times about the potential value of augmentative devices, but have been frustrated by their ineffectiveness in the past. So we continue to work aggressively on her speech and language, hoping we can eke out every bit of improvement before time runs out. I constantly ask myself (and my friends at Apraxia-Kids), “Are we doing everything we can to get Kimberly as far ahead as possible?”
What messages would I like to pass along to SLPs working with very challenging cases of apraxia – particularly children with multiple issues?
Just because perfect speech seems unattainable doesn’t mean that speech therapy isn’t worth the effort. Let’s shoot for a few word approximations guaranteed to make any parents happy — mama, papa. Then we can aim for a good repertoire of functional words, a few useful phrases. Who knows where we can go from there? I have corresponded with families who say, “I’d be happy if my child only learned to babble some sounds – just so I can hear his voice”. Many times the smallest steps can make a huge difference in our lives. Help us to achieve them.
Be honest with us if you don’t feel you have the experience, interest, or time to provide what the child needs. Challenging cases require a big commitment from all – the SLP, the child, and the family. Because so much time, effort, and money is required, it is even more important that the resources are used effectively. If my child needs more than you can provide, let me know so I can seek out that extra help. We realize that productive therapy requires a good match between the SLP and the child, so if you don’t feel it’s a match, help us find someone who is “right” for our child.
Make me a part of the therapy team. Show me how to work with my child. Teach me how to interact with her so she can progress more rapidly. Help me to understand what’s realistic and what’s not. If my goals are not appropriate, tell me what the next steps are so hopefully my goals will one day be realistic.
Make me aware of other communication options and how they might help my child. But realize that we are dealing with many time-consuming interventions. Although supplementary methods may be beneficial, time spent learning them is time not spent working on speech production and other goals. What seems like just one more little thing to do at home could be one thing too much. Help me to set priorities because only the top three or four goals get our most diligent attention. Be patient if I seem confused or inconsistent. I probably am. It is easy to vacillate between great enthusiasm and discouragement when progress is irregular.
What messages would I like to pass along to families?
One of the questions families ask most is, “How do I know my child is getting what he needs?” When reading progress reports from other families, it is inevitable that we compare our child’s progress. Although it is wonderful to hear about the exciting accomplishments of other children, it is easy to become discouraged when you realize that your child progresses at a fraction of the rate of many others – even if just that morning you were marveling at his accomplishments. It is easy to question, “What am I doing wrong?” We have to keep reminding ourselves that only some of the factors affecting progress (e.g. frequent high-quality therapy, home practice, and a stimulating environment) are within our control. Many others, and perhaps the most critical, (e.g. cognitive capability, motor problems, social issues, personality, attention capability) are not. All we can do is provide the child with the best services we can find and afford, and do our best to help the child at home.
What are some signs that speech therapy is not working? You ask the therapist how you can help your child at home, and she replies, “There’s nothing you can do.” You ask about speech homework, and you receive the same homework sheet as every child on the caseload. The therapist questions whether therapy is “worthwhile” since there is no progress. The therapist is unable to provide ideas to the classroom teacher and aides for improving speech and language within the classroom.
What are the signs that you are on the right track? The SLP has a plan for achieving progress, and you are part of that plan. The therapist has the ability to excite your child and can quickly changes methods when the first approach doesn’t work. The SLP knows how much to push your child to get the most out of the child without going over the edge. You and the SLP comfortably exchange information about what’s working and not working in therapy and at home. You’re excited about taking your child to therapy because you have a feeling it will be a good day. You know what to do to help your child at home, and you’re excited about making it part of your day. The SLP is comfortable in different roles – therapist, family educator, moral supporter, or consultant – as the needs and capabilities of the child and family evolve.
Our efforts to help Kimberly talk continue day by day. Each new word or phrase brings a feeling of excitement. Each time a stranger understands her makes us beam with pride. But the most important thing is the excitement and pride we see in Kimberly’s eyes and smile as she gets one step closer to having her very own voice.