Things are going to be a little different this week on Flower City Fashionista.
With May being Better Speech and Hearing Month and Wednesday being Apraxia Awareness Day, I decided I would take the opportunity to share a snippet of my life as not just a fashion and lifestyle blogger, but as the mother of a precious little boy with apraxia. If you are a regular around these parts, you’ll know that I write about shoes, makeup, fashion, and 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. (Some of you might not even know that I have a son with CAS).
This week there will be no trend forecasts, no splurges or steals, no #ootds – this week, I’m sharing our apraxia story with you and I’m starting from the beginning.
This was the first time I ever wrote about our family’s struggles with apraxia. This post originally appeared on Jake’s Journey to be a Little Man in August of 2012:
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, 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 6 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” lead 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 a 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. 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 they don’t necessarily want to hear, but need to hear. In a word 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.
This Wednesday, May 14 is Apraxia Awareness Day – please consider wearing blue for kids like Colten.
Every child deserves a voice – and raising awareness is the first step.