Jake's Journey with Apraxia

Today Jenny Sanzo is joining us again for Part 2 of her experience with Nancy Kaufman’s SPEAK program that she and her son Colten attended this summer. If you missed Part 1, click here to read. Thank you again Jenny for taking the time to share your story with us.

In addition to Colten’s therapy and friendships made, we learned so much as parents. We were taught how to script, how to approximate, how to cue and how to implement the philosophy of errorless teaching into practice. We left with the tools and the confidence to help him reach his speech goals.

If I had to sum up the more important things we learned, I think we took away three major lessons from SPEAK and our three weeks with Nancy Kaufman at the KCC.

• Expect more because they are capable of so much more.

I think we, as parents, tend to unknowingly give our special needs kiddos a pass.  We know they struggle, so we try not to be too demanding of them.  At three, Colten doesn’t really NEED an age-appropriate vocabulary.  His needs are met with minimal effort and communication.  I’m a SAHM – I’m with him all day every day.  I know what he wants, so most of the time he doesn’t get frustrated and he really doesn’t have to try that hard.  Nancy proved to us that he is capable of so much more and that we can no longer accept “eh eh eh” or one word answers.  We were doing him a disservice.  He can imitate.  He needs to do more.  He needs to speak.  And with help, he can.  I am so thankful that Nancy is bold enough to tell parents things they don’t necessarily want to hear, but need to hear.  In a world of wishy-washy people, it is so refreshing to meet someone who speaks the truth: no sugar-coating, no BS, just the truth.

• Approximations are better than nothing.

One of the biggest criticisms of the Kaufman Speech to Language Protocol (KSLP) is that it TEACHES approximations.  In my opinion, this is the programs greatest strength.  I am not an SLP or an expert in the field by any stretch of the imagination, but to me this makes perfect sense.  Apraxic children are overwhelmed by all of the complex speech sounds needed to form words.  That’s the root of this whole disorder.  Why have them shut down because it is too hard when you can teach them to say “a-po” for apple or “buh-deh-dee” for spaghetti?  Isn’t an approximation better than “dah, dah, dah” or “eh, eh, eh,” or worse:  silence?  Typically developing children approximate all the time!  (I think I said “eff-fe-lent” instead of elephant until I was six!)  Word approximations give these kids a starting point.  Every word can be broken down to a level that a child can imitate and coming up with appropriate approximations is easy to do once you get the hang of it.  If the whole word is too tough, we break it down.  Simple as that.  Now he is able approximate entire sentences, which brings  me to the next lesson we learned…

• Script. Script. Script.

Before we went to Michigan, no one had attempted to teach Colten to say a sentence.  He didn’t really imitate well and had a very limited vocabulary.  Day one of SPEAK, Nancy had him saying pivot phrases and using telegraphic language.  “I want car.”  “Put away ball.”  “Take off shoe.” In a few weeks I was hearing:  “I don’t want that,” “My turn,” “I do.”  He could say “Paddy go Potty” and “Betty eat apple.”  Our last week in Michigan, a waitress at Champps asked Colten his name and he responded: “Col – tinnnnn.” It was the first time I heard him say his name.  I was in awe, I was in shock, and I wept tears of joy right there at the table.  Seeing his progress made me realize what was missing from his home therapy program:  scripting.  Now it is something we do all day, every day.  Steve and I had to completely change the way we communicate with him.  It is still not second nature to us, but our efforts are making a differences.  Consistency is key.  Right now, Colten can imitate simple sentences, so one word answers/requests are unacceptable.  For example,  when he says “foo” and I know he should be saying “i want doos (juice)” – I make him say the sentence and the more accurate approximation for “juice.”  Guess what?  It’s working!  He is improving every day, but we need to stay on him and push him to be his best, to speak his best.  We need to script everything he wants to say.  And one day, we won’t have to.

My advice to anyone with an apraxic child is to get yourself (and, if possible, your SLP) to a KSLP conference.  You can also submit video to Nancy to evaluate your child (for a fee) and find out if they would be a good candidate for her program.  And if you have the time, the means, and the desire:  go to Michigan!

Yes, SPEAK was expensive.  Being away for three weeks was hard to coordinate, but we loaded into our van like the Griswold’s and schlepped eight hours away to live in an apartment with no internet and a leaky air conditioning unit.  You know what though?  It was worth every penny,  every minute, and every minor inconvenience.  I feel so blessed to have had this opportunity.  It was like hitting the apraxia therapy jackpot.  To be completely honest, I didn’t want to come home.  If I could have holed up in that apartment for the next year so Colten could go to the KCC every day, I would have.  That’s how wonderful the work they do there is.  That’s how much I believe in it.  That’s why I know in my heart that we will be back.

Today Colten is speaking more and more.  Don’t get me wrong, this was not a miraculous recovery; he isn’t “cured.”  We still have a long road ahead of us with many challenges yet to face and unknown hurdles to overcome.  The difference is that now I finally feel like we are moving in the right direction.  I know we’re all going to have to work really, really hard.  I also know something that I didn’t let myself believe before:  one day he is going to be okay; he will find his voice.  I will always credit Nancy Kaufman as the woman who gave him the tools and the discipline he needed, who showed us the right path to travel; the person who gave us the most precious gift of all:  hope.

I love the song “Home” by Phillip Phillips.  As I was writing this piece, it came on iTunes and suddenly had a whole new meaning for me:  it’s my apraxia anthem; my song for Colten.  Thanks to Nancy and the KCC, I think we are on our way home.  Our three weeks in Michigan will always be the beginning of his journey toward recovery.  It was the first time I believed, against all hope and against all fear, that one day, with lots of lots of hard work, my baby will be overcome this obstacle, this challenge God has given him.  It may not be tomorrow, but one day he’s going to talk and I can not wait to hear what he has to say.

To hear “Home” by Phillip Phillips, click here.

Thank you Jenny for giving us the gift of your words today. Beautifully written.

For further information about Kaufman Children’s Center visit http://www.kidspeech.com/.

To learn more about Jenny Sanzo visit http://www.flowercityfashionista.blogspot.com/.