It Takes a Village...

There’s an old adage that states, “It takes a village to raise a child.” Recently, I stumbled across this image that seemed even more fitting when it comes to Kellen—

                                      

I’ve touched on this before in past blog entries but the idea of having to be an advocate for my child is honestly not something that entered my thoughts as I began my parenting journey. That sounds naïve… and maybe it was. I know that if someone had asked me prior to having a child or when Kellen was an infant if I was ready to be an advocate for him, I would have whole-heartedly said yes. But, I didn’t really anticipate having to do it in the way that we are now. Yet, here we are in his fourth year, knee deep in speaking up and speaking out about this disorder that has so greatly affected our family.

                Childhood Apraxia of Speech is considered a rare disorder. In fact, it’s rare enough that a quick Google search of “how common is Childhood Apraxia of Speech” yields no real results. There’s not a lot of sound data on the numbers. I’ve read 1 in 1,000 but I’ve also read as many as 10 in 1,000. What I know more is that it when it has come to our work with Kellen, we’ve been met with a whole lot of people who have not heard of apraxia (ourselves included!) or don’t know how to help kids with apraxia. When we started Kellen in speech, we started first with Early On. They were the first ones to put the words Childhood Apraxia of Speech into our brains. Then we started private therapy on top of Early On. When he turned 3, he started therapy at our local public school but continued with private therapy. I’ve never been one to pay a whole lot of attention to insurance coverage—but once we started having to pay for private therapy, I was more aware of the lack of coverage and the amount of money we were having to pay for his speech services. While we loved the people at the private therapy place and his speech therapists were very nice, we were met with the “rarity” of his disorder causing issues. We could not find a therapist who hadn't had very little experience working with a child with apraxia. While his therapist had heard of apraxia and learned about it in school, she had not had one-on-one work with a kid like Kellen who needed very specific therapy. I struggled however with the idea of hurting feelings. I really liked his therapist as a person and I felt that she and Kellen had a good relationship. Yet, every time we walked out of there, paying a large amount of money, I felt frustrated that the therapy he had received wasn’t worthwhile. So we pulled him from private speech but kept him in the school speech twice a week.
         In September, he started speech at Silver Lake with our sweet “Miss Jess.” Kellen warmed right up to her and she jumped head first in with trying to figure out our tricky kid and what would yield the best results. She is kind and patient with him. She has been so willing to try out new things that may work best for Kellen. It’s been amazing to know she’s on his team. 

          He has continued to go to daycare 5 days a week with the woman we have loved since he was 9 months old-- "Miss Kimmie." She has been on board since the very beginning with all of his speech things. Listening to our concerns, offering her experience, encouraging Kellen every step of the way. She taught him sign language, his numbers and letters (along with so much more).  She has him participate in circle time, use his voice often, and believes in him.  Then by an off chance in November I was talking with the OT at my school about my wish to find someone to work privately with Kellen who had a lot of experience with apraxia strategies. She recommended I contact a friend of hers who did private speech and who had experience working with apraxic kids.

                This woman, lovingly referred to as "Miss Suzanne", has become the final piece in our current village of advocates. She has been an SLP for 30+ years and has  a plethora of knowledge on apraxia. In fact, she went to school with Nancy Kaufman (of the Kaufman Center who did K’s diagnosis this past summer and who is considered a leader in the Childhood Apraxia of Speech world). Dave and I feel a bit like she’s the closest thing to an expert in our small town. We began with her coming to our house for speech for an hour a week. We found though that Kellen was often distracted by the elements of our house (his room, his toys, tv, etc). She suggested we try coming to her house. This has made a huge difference!
           Twice a week, we travel 60 minutes round trip for an hour therapy session at Miss Suzanne’s. She is using a method of therapy with him called PROMPT which is well known in the apraxia world. Both of his therapists are also using the Kaufman cards with him. These are part of a speech program designed by Nancy Kaufman specifically for kiddos with Childhood Apraxia of Speech.  Kellen is set up now to possibly receive speech 5 times a week. Tuesday/Wednesday/ Thursday at school and Wednesday/Thursday at Miss Suzanne’s. Everything we know and read about Childhood Apraxia of Speech is that the best thing for kids is to have therapy frequently. We have seen him really blossom lately. He is still speaking in approximations almost all of the time. He has very few complete words and the ones that he has are very basic one syllable words (go, no). He has been working on hitting both syllables (well all syllables) of words. Often he drops syllables—most often the beginning one (oval is vul, orange is juh, Mickey is key). We also are finally hearing him put two words together- with confirmation in between... things like Boo Ky (Blue Sky). Before Gigi got sick, she was taking Kellen to speech at the school. Because it was at the school, it had to fall during school hours, which are impossible for me and often impossible for Dave with his coaching. So as of late, his school speech schedule has been inconsistent—depending on whether we can get him there or not. Prior to my parents leaving for Florida in January, they were able to pick him up from daycare and take him to the school so we could keep those days. When they return at in May, they will be able to do this again. 

                See what I mean about having a village though? Beyond Dave and me, Kellen has incredible support in two exceptional therapists who work hard every session to get our boy’s voice heard. We feel so extremely grateful to have found these two women. We know without a doubt, that someday when we look back on this season of our lives, both Miss Jess and Miss Suzanne will stand out as pivotal people in Kellen’s journey. Beyond our SLPs, we have an amazing village of advocates supporting Kellen and us. Family and friends who celebrate the victories with us (no matter how small they may seem), and who offer support and a shoulder when we find ourselves frustrated, worried, or disheartened. We have so many people surrounding Kellen and supporting him through this time it brings tears to my eyes.

             It is tough. It is tough trying to schedule therapy and make time to practice at home as often as we need to when all you want to do is play outside or watch Mickey Mouse Clubhouse. It is tough when you see other kids his age carrying on full conversations and he cannot. It is tough when other kids ask why he can’t talk. It is frustrating. It is frustrating when he cries, whines, gets mad. It is frustrating because in the moment it is easy to forget why he may be crying, whining, or feeling angry. He does not have the typical way to navigate through his feelings. He cannot say I am upset because you made me stop playing that game and I wanted to keep playing. He doesn’t know how to share those emotions and so they come out in tears or in anger.  It is even sad sometimes. Mostly because none of us want to think about or see our sweet boy struggle. It is sad when he gets upset because we don’t understand what he wants—it breaks my heart to see him cry/point/and make a sound and I have no idea what he is saying or wants. We end up doing a lot of “oh yeah?” “Wow!” kind of comments in response to those things we aren’t sure about… it makes me sad to not know what his little mind is thinking about. 

               It is also joyful. I could be wrong, but I feel like we celebrate so much more and find more in the little moments because life is harder for Kellen. It is this constant feeling of triumph over hardships. It is remembering to talk about anything and everything, even if he isn’t talking back. He’s listening. It is about being completely connected and in tune with another human being. While it is so difficult because others cannot understand Kellen, I am so grateful that I usually can. It is about understanding the power of actions and gestures. And now, it is about awareness. It is about helping others understand what our world and the world of those working to overcome CAS is like. We have an unending amount of support from our village of advocates to help us. We are working on a few greater ways we can help raise awareness as well. I know that more than we ever expected, we need to be a voice for our sweet boy. We are so proud of how far he has come. If you knew him two years ago, you know how silent he was. Now he is imitating and trying sounds all the time. He seems invested in language and understands its importance. Every time he has success making his point known and his voice heard, he grows more confident in his ability. It is so wonderful to see. Below are a couple of videos. One of a speech session and one of him “reading” a book aloud. While to those who don’t know him well he seems remarkably behind, Dave and I (and those who know him) are in awe of how far he has come. We are so proud of the steps he is taking every day to find his voice. “Parthood is about raising and celebrating the child you have, not the child you thought you’d have. It’s about understanding that your child is exactly the person they are supposed to be. And, if you’re lucky, they might be the teacher who turns you into the person you’re supposed to be.” – The Water Giver