Apraxia, Now What?
If you are anything like me, your child’s diagnosis with Childhood Apraxia of Speech (CAS) was not a surprise. In fact, you may have known your child had Apraxia before anyone else. You may have been searching, pushing, and pleading for a professional to give you the correct diagnosis. Or maybe this is the first time you’ve ever heard the word Apraxia. Whichever the case, you are now looking for any information you can get your hands on. You have come to right place!
When my daughter was first diagnosed with CAS, I looked everywhere for some sort of list of what to do next. I couldn’t find one, so here is the list that I would have liked to have found when I was in your shoes:
- Your child needs individual speech therapy. If your child has been diagnosed with CAS, he or she is most likely already in speech therapy. However, if your child is receiving group sessions, he or she needs to be receiving individual sessions. CAS is a rare disorder and no two children with CAS are exactly alike. My daughter has severe trouble with vowels. She neutralizes everything. She couldn’t produce the long e sound until she was 3 ½ and had had nearly two years of speech therapy. Yet the long e sound may be the only sound your child produces. They both still have CAS but they need individual therapy tailored to their specific needs.
- Your child needs frequent therapy, probably as often as 3-5 times a week. The limited research that has been done on CAS show that children with CAS need 81% more therapy than a child with the more common phonological disorder to achieve the same results (Functional treatment outcomes for young children with motor-speech disorders by Thomas Campbell in Clinical Management of Motor Speech Disorders A.J. Caruso and E.A. Strand 1999).
- Your child needs appropriate speech therapy: either the Kaufman Speech to Language Protocol (Kaufman SLP) or Prompt Method. Your child may respond to one better than the other. Make sure that your speech therapist is trained in at least one of these methods. If not, no matter how much you like your speech therapist, find one who is.
- Buy the book The Late Talker by Dr. Marilyn C. Agin, Lisa Geng, and Malcolm Nicholl. Read it cover to cover. While I personally may not agree with everything in the book, it is a fantastic resource, and quite honestly the only book I’ve found written about CAS.
- There are two national organizations dedicated to CAS:
Visit their sites or join them on Facebook.
Take a deep breath. While I can’t promise you that your child will be able to speak perfectly one day, I can promise you this: It will get better. With the appropriate therapy your child will most definitely be able to communicate better than he or she can today. I can promise you this!
Now let’s talk about you. Whether or not you suspected your child had CAS, this is still a huge shock. Whether it happens immediately or a little later, you will go through a mourning period. You are grieving the life you thought that you had and the child you thought you had. Remember you still have that same child. Your child is not CAS. While CAS seems all consuming now, with hard work and a little bit of luck, someday you and others will see your child’s diagnosis as just one of many of your child’s characteristics. If asked to describe your child, CAS will not be the first thing out of your mouth. Your child’s personality will blossom! You still have the same child you had yesterday. CAS is an explanation not a definition.
Here are the phases of grieving according to experts:
You won’t necessarily go through these stages in order nor will you grieve for a specific amount of time. There is no time table and each person is different. Even now, nearly three years after my daughter’s diagnosis, specific events can again bring my grief to a head. But it gets easier. The grief that originally lasted days and weeks now only lasts a fleeting moment and then I’m able to move on. You will be able to as well.
If your grief is lasting longer than you would like, or you are finding yourself unable to function, please seek help from a professional. There is nothing to be ashamed of and your child needs you, functioning and capable, in their corner. Get the help you need so that you can help your child.