Jake's Journey with Apraxia

And the Friends We Met Along the Way

I have said it before in this blog, and I will say it again … Knowledge is power. I pray for a day when medical professionals know the ins and outs of apraxia so that kids with this diagnosis can find their voices sooner. Until we know what causes it and how to treat it, we’re just a bunch of worried parents sitting in speech therapy waiting rooms, struggling to find the time and energy to give our kids our best at home, reading everything we can get our hands on, trying nutritional supplements, and all the while just waiting for something remarkable to happen.

A few weeks ago, I learned of CASANA’s Research Registry and I started working towards completing it. Although it took a little time, I am now done.

First off, what is this research registry all about? According to CASANA’s site …

The Registry is a list of as many individuals with Childhood Apraxia of Speech (CAS) as possible, containing information about each child’s health and developmental history. Once data is collected and enough children are registered, this list eventually will enable authorized researchers to find possible subjects for research projects and offer families an opportunity to participate in research, if they chose. Finally, the Registry will allow researchers to examine trends and data about groups of our children with apraxia over time.

Joining the registry will help us unite families with researchers. Joining the registry does not mean that your child has to participate in any specific research study. Rather, the registry provides you and your family an easy way to learn about studies for which your child may be qualified. Also, providing information on various aspects regarding your child, such as age of diagnosis, speech characteristics, and history, will enable us to learn more about what happens over time to children diagnosed with CAS. 

What do you need to know before you begin filling out this online registry? The site says it will take 60-90 minutes to complete and it took me the full hour and a half. The good news is, you can save your information and go back a few times if you need to.  If you have not already filled out this information, I just wanted to share my own experience, which will hopefully save you a few precious mama minutes.

Before you begin, gather the following information: your child’s baby book, any newborn hospital records, and all speech assessments. Also, before you fire up your computer, I would recommend reading through those speech assessments and highlighting any special information. Additionally, get your child’s current height and weight.

The following things stumped me and caused me to go searching through documents or calculating on scrap paper:

  • Apgar scores when born (on Newborn Admission/Resuscitation Record form hospital)
  • Age in months of early milestones (sitting, walking, crawling)
  • I couldn’t recall details from Jake’s Early Vocal & Verbal Behavior. I only remember that he was a quiet baby. Daddy or grandparents might be good sources to ask since most of us mamas are in survival mode during that first year of life.
  • Bottle feeding duration in weeks during the first six months.
  • What speech problems specifically led your child to be diagnosed with apraxia?
  • How many minutes per month is your child seen by a SLP?
If you have not already filled out this registry, please take the time to do so. It is our responsibility as parents to provide researchers with as much information as possible so that hopefully kids and parents in the future won’t have to wade through the muddy waters that we’re currently in. It may take some time out of your day, but it is worth it. The more we know about this disorder, the better.

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