Michigan changed us in so many ways

So fast forward to this summer, and off we went to Kaufman Children’s Center in Michigan for the month of July.  Leaving the big boys at my parents the night we left was one of the hardest things I’ve ever done.  Knowing that I wouldn’t see them for almost a month was devastating, and I cried all the way home.  Jason drove us 22 hours to the northwest suburbs of Detroit, and then flew back home.   So it was just Charlie and me for almost three weeks.  In a small hotel room.  Me and an almost 3-year-old!!  There were days when bedtime couldn’t come fast enough.

We looked like Sanford and Son moving into the hotel in Novi, MI, which was about 20 minutes from Kaufman Children's Center.

While I expected to learn a lot at summer SPEAK with Nancy, to say it exceeded my expectations is an understatement.  Each morning, we had a 30-minute session with Nancy and a 30-minute session with one of the other fantastic SLPs at KCC.   Nancy got more out of Charlie in the first session of therapy then his home therapist would get in 3-4 sessions.  I was in awe of Nancy.  Of course, she did tell me after that session that he had “some behaviors we needed to extinguish.” I love that word!!  Behaviors like turning his head if he didn’t want to try a new sound/word or raking the toys off her table when he thought he should be done.  Kiddos do NOT get away with those behaviors in Nancy’s therapy room, and I supported her 100 percent.

Charlie and the wonderful, incredible, unbelievable Nancy Kaufman

After lunch each day, we had a 60-minute group session with the other boys in SPEAK, who were from around the country and Canada.  One thing we learned through group was that Charlie has social anxiety.  He’s such a bubbly, happy kid at home that it never dawned on me that he would hide his face when it was his turn to “talk” in group.  It took almost the entire three weeks of SPEAK before he opened up and tried to approximate sounds without major prompting from Nancy.

Group therapy was just as important for me because I got to see other boys who were like Charlie.  Even though he was clearly the most severe of the group, it was great to see where he will hopefully be at some point next year.  The other key learning from group was how normal Charlie is in his activity level.  All the parents watched group from a two-way mirror, and it was quite humorous.   Those boys wore out Nancy and the other therapists helping in group.  Our running joke was which parent was going to called out to help with their kid first.  Any boy momma can totally relateJ

The SPEAK brothers from other mothers:)

Getting to meet other parents of CAS kids was an added blessing I wasn’t expecting.  I made friends that I know I’ll have for a long time (even though they will be long distance friendships).   I call them my SPEAK sisters.  Having a child with apraxia is very isolating because no one has ever heard of it.  Most can't fathom what it's like to know your baby so desperately wants to tell you he'd like a snack, but he can't find the words.  So he does the next best thing...grunts and points.  It’s a tough road we are on, but it’s comforting to know these ladies are just a phone call/text away.  I don’t feel so alone anymore.

The next several paragraphs I’m borrowing from a blog written by my SPEAK sister Jenny.  Jenny and her son Colten are from New York and attended SPEAK with us.  She wrote the most beautiful blog about her experiences, and I could not have said it better myself.   I’ve changed some things to mirror our experience, but Jenny eloquently wrote the majority of the words. If you’d like to read Jenny’s story about her expereince in its entirety, please visit her blog at http://flowercityfashionista.blogspot.com/p/apraxia-awareness.html

Excerpt from Jenny’s blog (with changes to fit Charlie):

In addition to daily 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.  And I have been very guilty of that (as have members of our family).  Charlie’s needs are met with minimal effort and communication – mostly through gestures and grunts.  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 all the time.  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.  And believe me, she spoke a word of truth to each boy momma about her little “angel.”  Charlie and I did not get a pass on this one either!!

•   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 program’s 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 (which Charlie can clearly say when he wants an 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!  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.  Even if I use just the vowel sounds as a starting point, it's a start. Now he is able approximate simple 2-3 word sentences with lots of scripting, which brings me to the next lesson we learned…

•   Script. Script. Script.

Before we went to Michigan, no one had attempted to teach Charlie 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 phrase like  “I want,”  “Put on” and “Open door.”  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.  We had to completely change the way we communicate with him.  It is still not second nature to us, but our efforts are making a difference. 

Colten’s story and Charlie’s story are quite similar in some areas.  And even though she’s a Jersey girl and I’m a Texan, we hit it off like peas and carrots!!! Thank you Jenny for letting me borrow your wordsJ

Now it’s my turn again, so let’s jump back into scripting.  For example, when Charlie says “oo oo ah ah” and I know he wants to watch Curious George, he should be saying “I want mu ee” (monkey).”  I make him say the words and the more accurate approximation for “monkey” since George is way too hard from him right now. We need to script everything he wants to say because otherwise, he will revert back to grunts and gestures.  He still uses them, but we do our best to direct him into a “sentence” or at least his best approximation for what he wants.

I’ve had a lot of people ask how we were able to pull off me being going for almost a month.   If you know me well, I’m the cheapskate in our relationship, so Jason was adamant that he didn’t care how much it cost us.  Charlie WAS going to Michigan.  It was challenge to coordinate what the big boys were going to do, but my parents totally stepped in and took charge of Griffin and Carter.  Quite frankly, I think the boys were perfectly content with their own king-size beds, a huge playroom and a swimming pool.  And did I mention lovely cooked to order meals each night?  I think I need a couple of weeks at Camp CocoPapa myself!!

Our last day in Michigan.  We drove to Indianapolis so I could work a race the next day.                                                 Don't you love God's timing!!

The month was exhausting and expensive with the SPEAK fees, added OT sessions, hotel, gas, food, plane tickets for Jason – you get the picture. But we’d do it again in a heartbeat.  The confidence and hope Nancy gave us for Charlie’s future was worth every penny we spent.  If we could move to Michigan for a couple of years so Charlie could work with Nancy each week, I might have to get over my dislike of the cold and snow.

Once we got home on July 31, reality set back in.  We were no longer under Nancy’s wing and once again, on our own.