Caitlin's Journey

I have been thinking and thinking and thinking about blogging about Caitlin's journey...and haven't quite figured out how to begin in...so today I was inspired to just start somewhere!!!

Caitlin has been struggling with speech since birth.  She never babbled.  At 6 months, she had tubes placed in her ears and we were told she should begin babbling within 2 weeks.  Nothing till 12 months!  At 12 months she was just beginning to babble so we had her evaluted for speech, but she didn't qualify.  At 18 months, she still had no words so we had her re-evaluted for speech and she qualified.  We began speech with her once a week for 6 months and saw NO progress.  It was frustrating to say the least.  At 6 months, we had a 6 month follow-up where I was prepared to complain about how it's not enough and she's not getting the help she needs....but the conversation quickly turned. 

Caitlin's speech therapist said she suspected Caitlin had Childhood Apraxia of Speech (CAS).  I had never heard of this...and I have my master's in Early Childhood Special Education.  Well, you can imagine how long I was up that night reading and reading and reading about it.  For the first time in 2 years, I felt like someone finally figured Miss Caitlin out!  Everything I read was like reading Caitlin's story!  I knew instantly that her speech therapist was onto something.

Apraxia is a really hard thing to explain. In fact, I'm part of an online support group and a local support group for moms of children with apraxia and it's probably the number one question..How do you explain it?  Basically it's a neurological disorder in which the brain and the lips are not insync.  So the child knows what she wants to say, but her mouth doesn't make the connection.  It's very similar to adults who have had a stroke (I know it's sounds scary that way, but it's a good comparision) because they lose their ability to talk and they need to be taught it all over again.  Caitlin is the same.  She knows everything she wants to say, but her mouth isn't able to make the shape/sound.  So we have to teach her to make every sound...and it takes a lot of practice!  One comparision her therapist made was to cars.  She said most kids' speech is like an automatic car...they just hear something and say it.  But Caitlin's speech is like a stick shift car.  She has to learn each sound...and put them together. She can't get to 3rd gear without getting to 2nd gear...and she has to get all these gears together to get to 4th or 5th gear.  But with practice, it becomes easier and easier. 

Caitlin hasn't been officially diagnosed with anything yet because in IL, you don't need a diagnosis until you are 3 because from birth to 3 is covered by Early Intervention (which Caitlin is in now).  We are not sure if/when she will be diagnosed.  She may never need a diagnosis...we shall see.  However, in January her speech therapist began a program for children with Apraxia with Caitlin (It's called the Kaufman Protocol...I will blog about it soon).  Caitlin receives speech 2 times a week for 45 minutes.  She's been following this program for 2 months now, and we've seen more progress in these 2 months than all 6 months of speech prior. 

I have been wanted to share about Caitlin's journey...but more importantly to document Caitlin's journey for ourselves.  I wasn't sure how to begin, but I found a great blog http://jakes-journey-apraxia.com/ and I was inspired.  So every Wednesday, I am going to blog about Caitlin's journey. I will discuss where she's at, what's working for her, and what's not.  My hope is that I will be able to one day show Caitlin how hard she worked and what a strong, smart, special girl she is!  So Wednesday will begin our updates on Caitlin!