House of Krause

This question seems to come up from time to time. I’ve certainly questioned if this is a possibility myself.  Oh, wouldn’t it be great if tomorrow this was suddenly resolved. Unfortunately, this is not the case. True Apraxia of speech is lifelong and does not disappear on it’s own. The good news is with appropriate help and treatment most children with CAS can learn to speak clearly.

When Luke was initially diagnosed some one explained things to me in a way that really made a lot of sense.  They said to think of the brain as a spider web, connections running in all different directions. If one part of the web is broken or disconnected, there is usually another pathway that can be used to get to the same place. It may take longer. It will take help, but you can get there.  That was a great way for me to visualize the situation. It still really bothered me though to think that forever Luke will have to think about that secondary pathway to speak.  This was inaccurate thinking on my part because if Luke learns to speak using a secondary pathway, isn’t that a first pathway for him?  He would never know any difference.  Does this make any sense? Anyhow, I’ve been doing some research on the toddler brain, it is an AMAZING thing. I have a better understanding of why early intervention is so important.

Seventy-five percent of the total brain growth occurs between one to three years. By the age of three, a toddler’s brain has formed about 1,000 trillion (not a million or even a billion, a TRILLION) pathways or synapses ­ about twice as many as we have. The toddler’s brain is super dense and primed for learning. When a pathway is used repeatedly, it becomes permanent; a pathway used infrequently is lost. This goes along with the old saying, use it or lose it! This is actually true.

You can see in this picture the density at age seven compared to age fifteen. At fifteen many connections have already  diminished. Of course we can continue to learn throughout life. It is just not as easy as in those early formidable years. Especially when it comes to speaking. It is very difficult to correct patterns that have been set in and repeated year after year.

Some people thought I was over reacting when Luke was very young and I was really starting to worry and question things. Even the doctor brushed me off.  I am so glad I moved ahead with my intuition. He is now a year and a half into therapy and still has a long way to go. When I look at some of his early videos I think, my gosh, he’s just a baby! And he was. This has given him the greatest chance of success with language. If you think something is wrong what do you have to lose by pursuing evaluations and seeking help?

About this time a year ago I attended the most valuable seminar in regards to Apraxia. Nancy Kaufman has been treating children with CAS for over 25 years. The seminar is designed for speech therapist but is also open to parents. Her methods are the reason my son has a voice today.  Nancy Kaufman is once again lecturing through out the country. If  you have the opportunity to attend her workshop you will have a wealth of practical ways to really help your child! I’m encouraging you to GO, GO, GO! LOCATIONS

I find my self a bit confused. I started blogging to relate and talk to other people about their childrens struggles with Apraxia.  It started as a way to express my feelings, get out my emotions, tell our story and try to help other people. Now I am stumped because I wonder just how honest I can be. I do not blog to put on a show. Can I continue to pour out my emotions about how this feels? Right now it does not feel so good. I don’t feel so positive. I feel sad. Sad because I can not fix this for my son. It breaks my heart into a million pieces to watch him studder and grope for words when he’s really worked up about something. It feels terrible to hold him in my arms while he melts  because he understands every word I am saying but I have no idea what he is saying back(and he knows it). Things the average three year old does not even give a second thought about. Wonderful carefree words just slide out of the mouth. For Luke and other children with Apraxia this is the greatest struggle. How frustrating this must feel. I see some changes happening with Luke. I know it is not him, it is his struggle that is changing him. It’s much easier to just tell a friendly face “GO!” then to explain how school was. It’s easier to just scream “NO!” then to tell your sister you want her to please stop because she’s bothering you. I have spent the day replaying in my mind, the little quivering voice who told me last night, ” I talk, but I no talk.” Luke feels no pressure with me, most everyone else equals PRESSURE! Questions require an answer. Answers are hard to come up with. This is a tricky fight.  Luke has really come  a long way, no doubt about that. But there are still those days and those times that are really rough. He is getting older now, he is understanding so much more. We have a long road ahead of us. I guess  sometimes I just want to take off the gloves and get out of the fight.