Jake's Journey with Apraxia

“Two are better off than one, because together they can work more effectively. If one of them falls down, the other can help him up…. Two people can resist an attack that would defeat one person alone. A rope made of three cords is hard to break.” – Derived from Ecclesiastes 4:9-12

When I started this blog back in December of 2011, I didn’t expect to develop such a strong online support group. I also didn’t expect that I would “click” with a handful of apraxia mamas  just as I had done with my “real life” BFFs. I didn’t expect for real friendships to form. Jenny Sanzo is one of those girls that I connected with and even though I am clueless in fashion, I still enjoy reading her blog “The Flower City Fashionista.” Jenny, if you ever want to travel down here to the South and do a fashion makeover, I’m your girl. 🙂

Jenny’s son, Colten, is three years old and has apraxia. This summer she and Colten went to Nancy Kaufman’s three-week SPEAK program. This will be a two-part series, so be sure to also visit again on Thursday of this week. Thank you Jenny for your kind words & encouragement and also for taking the time to share your experience with us.

Hi Jake’s Journey readers!  I am thrilled to have the opportunity to share my experience at Nancy Kaufman’s summer SPEAK program with all of you.  I have been a reader of Jake’s Journey for quite some time now and I want to give a huge thank you to Tori for sharing her apraxia journey with all of us.  I am also a blogger and mother of a precious little boy with apraxia, but I could never write about our struggles and victories as we fight our daily battle against this disorder.  I write about shoes, makeup, fashion, general lifestyle pieces, most with their share of snark and self-deprecation, but rarely do I open up about the daily challenges of living with apraxia.  My blog is my escape, it allows me to think about something else: something frivolous and fun. I am in awe of what a wonderful mother Tori is; how she is constantly researching and working to help her adorable little man find his voice and then after all that effort, all the blood, sweat and tears, she is selfless enough to share it with all of us.  Her blog is such a help and support for so many other mamas out there with little ones with special needs. Kudos to you, Tori.  You are a great mama, a wonderful writer, and I am honored you asked me to share my family’s SPEAK experience with your readers.

First I’d like to give you some background on my own “little man.”  Colten was three in May and is the happiest little boy you could ever meet.  He loves to run, play with his cars and trains, and hug his baby brother.  He is a social butterfly, who adores the company of other children.  He is sensitive, kind, independent, and stubborn.  He looks like any other curly topped preschooler only every day my sweet little Colten struggles to speak.  Every word, every sound, every thought, requires extreme effort and concentration.  Colten, like Jake, has childhood apraxia of speech (CAS).

I started to worry when he was one.  He wasn’t babbling.  He would vocalize, but no real speech sounds.  Autism runs in our family, so my husband and I were looking for all the warning signs.  We waited to see if he was social, made eye contact, spoke his first words.  He said “mama” at 11 months, but that was it.  Over the next six months he acquired “dada”, “ba” for “ball,” and “ha” for “hot.”  Our pediatrician told us not to worry, that he was a boy, that he was social and smart.  I referred him to Early Intervention anyway.  He was evaluated and did not qualify for services.  I am still angry at myself for not asking for a second opinion or paying for private therapy.  When I go back and read the report now, I find it to be grossly inaccurate, but at the time I think I just desperately wanted to believe that everything was okay, that I was being overly cautious, and that the teacher in me knew too much.

Four months later, when he had made no progress in his language development, I requested another evaluation.  Colten was re-evaluated at 22 months and qualified for Early Intervention services at the 18 month benchmarks.  I had lost four months of therapy.  He started getting speech twice a week for 30 minutes just before his second birthday.  Therapy didn’t look very productive, but I wasn’t a SLP so I decided to trust the system and the “professionals.”  In six months he had reached none of his language goals and gained one word:  “car.”

So there we were with completely ineffective therapy, a 2 1/2 year old with 5 words and an army of friends, family, and doctors telling us he would be fine.  We’d hear that no one knew any “normal” kids who couldn’t talk and that one day we wouldn’t be able to shut him up.  Despite all their reassurances, we couldn’t escape the gnawing feeling that something was wrong, really wrong.  It was right around this time that my husband Steve had a conversation with the SLP at his school (he is a high school assistant principal) about Colten and our concerns.  After a 20 minute conversation she told him that even though she hadn’t met Colten, he sounded like he may have something called “Apraxia.”  Steve called me to tell me what she thought.  I had never heard of apraxia, so I googled it (naturally) and proceeded to break down as I scoured CASANA’s website, apraxia mommy blogs, and YouTube videos.

In my research, I came across Nancy Kaufman and Kaufman Children’s Center in West Bloomfield Michigan.  I saw that she was scheduled to speak in Syracuse in the spring and registered myself and my husband for the conference.  Over the next six months we hired two private  SLPs in addition to our Early Intervention therapist, who proved to be completely ineffective.  I should have let her go after one week, but sadly you don’t know what you don’t know and hindsight really is 20/20.

In March, Steve and I attended “Children Who Struggle To Speak:  The Kaufman Speech To Language Protocol” led by Nancy Kaufman.  After an hour we knew two things:  1.  Colten was not getting the type of therapy he needed.  2.  If anyone could help Colten find his voice it was Nancy.  We had to get him accepted to summer SPEAK.  We had to get to Michigan.  The clock was ticking and time was not on our side.

I was persistent (annoying) and tenacious (stalker-like): e-mailing Nancy, sending in videos, calling Diane at the KCC and when a spot opened up, Colten was one of twelve children accepted into the program.

In July, we packed up our family.  Mommy, Daddy, Colten, and 6 month old Cooper  headed to Michigan with hopeful hearts and open minds.  We moved into a furnished apartment across the street from the KCC and hunkered down for three weeks.  Summer SPEAK was everything we hoped for and more.  It completely exceeded our expectations.  It was, by far, the best decision we have made as parents.  In three short weeks, our son went from 50-100 word approximations to imitating simple sentences.

There is too much to even put into words.

Every day Colten had two 30 minute private sessions (one with Nancy and one with another SLP at the KCC) and one hour of group.  The one-on-one therapy was awesome.  Nancy is AMAZING and every single one of her therapists exudes knowledge, is clearly an expert in their field, and works with such a high level of integrity, caring, and heart.  You can’t help but feel like they love your kids from the moment they meet them.  The KCC truly is a special place.

Group therapy was just as invaluable.  The social component was huge for Colten.  He had never met anyone his own age who struggled to speak.  I think it did wonders for his confidence.  He met other precious little boys who were like him and not like him.  He got to answer questions without feeling embarrassed, he got to sing with Lisa Barnett, the wonderful music therapist there, and he had the opportunity to grow in a safe and unthreatening environment.  He made friends that are irreplaceable (and his mommy did too).  What a blessing to meet other mothers who are on the same (but different) journey.  It’s a bond we’ll always have because of our sweet boys.  I know I made friends that will be mine for life.

In addition to Colten’s therapy and friendships made, we learned so much as parents …

Tune in on Thursday this week to hear about the rest of Jenny’s trip to the Kaufman Center and the three major lessons that she and her family took away from their experience. Jenny Sanzo blogs at http://www.flowercityfashionista.blogspot.com/.