Journey

I woke up this morning thinking about my 3-year old and his ongoing journey with apraxia (childhood apraxia of speech). As we continue on this unknown path, we don't know where we're headed. As an organizer and planner, this is so hard for me. Every day we are learning something new about his disorder and about him. We have many questions. What additional therapy might he need? Are we doing enough? What will life be like in 1 year or 5 years?

If you're not familiar with CAS, it's a motor speech disorder. Children with it have problem saying sounds and ultimately words. It's not because their muscles are weak, but somehow the brain has a problem getting the thoughts to come out. Like the lips, tongue, and jaw can't move in the proper sequence or sometimes not even at all. It's as if every word or utterance takes a tremendous amount of thought. Speaking is extremely difficult. At 3 years old, our son has never said mom, cannot say his name or share any of his thoughts. He has found ways to communicate through American Sign Language or his own gestures and sounds and through this we are discovering just how amazing he is.

I've reached out through the on-line forums and found some connections but there are times where I feel alone and want to talk about what we are going through. I decided today would be the day that I start a blog as a way to share the things we are doing, how we are feeling, and connect with others who are going through some of the same things.


So here's to a journey with an amazing little boy.


“One of the hardest things in life is having words in your heart that you can't utter.”

-James Earl Jones