Reach for the Stars...

"Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world."

          Hi! Welcome to my little blog. :) If you’re new to this blog (as most of you are, since this is the first time I’m publicly linking this blog), I invite you to go down to the November 23rd post and start at the beginning. It will allow you to get a better understanding of what steps we’ve taken so far to get to this point. 

          It’s been a really long time since my last post, even more than my usual 3 months in between. :) We’ve had a lot of changes since I wrote last so I will try to recap the last few months. In June, Kellen stopped speech at the school because the school year ended. We continued with private therapy however and we also set up an appointment for Kellen at the Kaufman Center for August. Dave and I both were incredibly anxious for this date. During the summer, we struggled with the feeling that his private therapy was just not the right fit for him. While his therapist was incredibly sweet, she was inexperienced. Every week we would go to therapy and I would leave feeling like we were paying a whole lot of money for what felt like not a lot of help. I often found myself leading the therapy sessions and would prompt him during the therapy more than the therapist did. She never said, but I kind of got the sense that she just wasn’t sure how to work with a kid like Kellen. Through our reading and understanding of apraxia, it is not a common disorder. It’s entirely possible for someone to be an SLP and have never worked specifically with a child with apraxia (but know what it is). I remember talking with our pediatrician last spring about just this. He said that unfortunately we live in a small town and we just don’t have the level of expertise available like a bigger city area. We kept going to speech because we felt that at least he was getting something. But here’s the thing… private speech is expensive. In August we finally decided it was ridiculous for us to continue to pay weekly for something we felt was not benefiting Kellen. We made the choice to stop private therapy for the time being and reassess after going to the Kaufman Center and school starting. 

                In August, we drove down to Detroit for his evaluation. I don’t think I would say we were nervous, but we were absolutely anxious. Childhood Apraxia of Speech was introduced into our world when he was 20 months. We had read about it and learned the “signs” of it. We had been told it was probable he had CAS by multiple people. But Nancy Kaufman is considered an expert when it comes to CAS. I think we both were just wanting to hear from her what she felt we were up against. The evaluation itself was really interesting. We went in a room with toys, games, etc. We were worried about Kellen being comfortable being in there by himself with her so she told us one of us could stay (but two in the room was too distracting for him). We decided I would stay in the room with him and Dave got to observe through the one-sided glass. I was told I could not interact with him at all and that if he tried to focus on me, to redirect him to the task. This was SUPER hard! I sat back and bit my tongue :P It was really fascinating to see what she asked him to do and witness how he acted in this new environment. At the end of the evaluation, she called Dave back in the room and sat and discussed her observations with us. None of it was alarming, but it was still hard to hear regardless. She gave us some ideas of things to do and steps to take. She also told us that it sounded like we made the right decision with stopping his private therapy and encouraged us to try and find someone who had experience with apraxia or a willingness to try strategies that are best practice for kiddos with apraxia. She also asked us to come back down with him again for a session where she could teach us some ways to work with Kellen at home. We have not done this yet but it is absolutely on our radar. We got him on the waiting list for their intensive summer speech camp for next summer as well.  She also encouraged us to start teaching him sign language. She suggested it might be a great bridge to language for him. Dave and I both walked out of the appointment incredibly overwhelmed. I started typing it all out on my phone because writing is my preferred way to process.  J We talked it over in the car as well, just trying to work through everything. We left there feeling that we finally had some sort of answer in his diagnosis and that as hard as it was to hear and know for sure, we at least also knew now how to best help him. 

                I remember after we told our families about how the appointment went, there was some, “are you guys okay?” questions and concern. It’s funny but it didn’t really “upset” me having a diagnosis (and I don’t think it did Dave either). Maybe it’s because we kind of already suspected going into it. Maybe it’s because it felt more like a relief to at least know what we were up against. But mostly, I think it’s because diagnosis or not, he was still the same kid we drove down to Detroit with. This amazing, incredible, funny, intuitive, observant, loving, BRAVE little boy. Our son. The sweet boy we are so blessed to have been given. Dave and I both have the attitude that it is what it is. A diagnosis doesn’t make him any different in our eyes. A diagnosis just gives us information on the best ways to help him grow. 

                In September, Kellen started speech at school twice a week. We made the choice to not put him in preschool yet, but because he has an IEP, he still qualifies to receive speech at his home school. Dave’s mom continues to be able to pick him up from daycare twice a week and take him back to the school for speech. This in itself has been so wonderful. We are so lucky that 1, she is able and willing to do this, and 2, that the SLP at the school was able to coordinate her schedule enough to accommodate for this. As a teacher, I KNOW how tricky scheduling can be and we are so grateful that he is able to get the services he needs at a time that works best for him. He is in daycare five days a week with his phenomenal daycare provider. She continues to be a constant supporter of Kellen and of us. She works so hard with him and he has learned so much from him. Again… have I told you how lucky we are?!

                We have been super happy with how his speech is going so far. The SLP at the school is awesome. She has helped make him a communication book that has pictures of people, places, foods, activities. He can use this book then to help convey his wants/needs when he doesn’t have the vocabulary to do so. This is such a cool step for him! It is really hard for me to not be directly involved in his speech in some way. In the past, I was taking him to his private sessions and sitting in on them. I don’t like that I’m not able to do this anymore, truth be told, because so often those speech sessions were learning opportunities for ME on ways to help at home or strategies to use. However, I know this is the norm. :)

 

                Our fall has started out as a great one. Random proud moment. He mastered the two-wheeled scooter this August. I remember our neighbor boy (who is nine) being shocked at how quickly Kellen got it for being so young. I had no idea about developmental levels with regards to this, but I did know it takes a lot to impress the little boy next door. So I consulted my friend Google which said that most kids master the two wheel scooter at age 5. It sounds really silly, but honestly, Kellen is behind in a lot of ways… it was pretty exciting to feel like he was on the more advanced end of something. He loves zipping around on the thing… his balance is exceptional and he has no fear on it! :)

                We have been seeing some really nice growth in his speech. He continues to make great advances in his willingness to imitate. He is always trying out new sounds and copying things he hears. This is huge. He is still speaking in approximations and 99.9% of the time they are one word. His speech is pretty much not intelligible to anyone who doesn’t work with him or interact with him often. But he’s making sounds, and he’s making progress. This is huge and all we can ask for. He has even put two or more approximations together in an attempt to make a sentence. Again, they sound like nothing to most people—but we know what he’s trying to say. For example, when re-telling a story he will say, “Ssss! Puh! Doh! Ksh!”—which in our world translates as, “Thomas! Percy! Oh no! (they) crashed!” These steps, which seem so small and inconsequential to most, are huge, mountain moving moments for us. We also had the opportunity recently to speak one-on-one with a family who have a son who has apraxia. Their son is now 17 and applying to college. It was so meaningful to share their experiences, to hear yes, that sounds just like our son. I read often about people’s experiences with CAS, I’m part of a facebook group that has been very supporting… but it was so helpful to talk to someone first hand and hear not only that they know what we’re going through but also that he has overcome this challenge and is doing great things. 

                I can see how easy it could be to get down-hearted. Sometimes I have moments where I get sad for Kellen. We were at the farm market the other day and he was riding on a tractor. A boy came up to him and said, “Hey I want to ride that.” Kellen just looked at him and the boy waited expectantly for K to respond. When he didn’t, the boy looked puzzled and walked away. I wanted to push in… to explain to the boy… but I realized that I cannot save Kellen from all these situations. So I stood back, watching to see how he navigated it, ready to swoop in if needed. I get sad sometimes in the silence… the car rides especially. I know he’s observing, I know he’s thinking. I find myself wondering… what’s he wondering about? I try to talk to him anyway, to point things out, to ask questions he cannot verbally answer. Truthfully, it can be difficult sometimes to try and carry on a one-sided conversation. I have moments of self-doubt, where I think to myself I’m not doing this right. I’m not helping enough, talking enough, working with him enough. But you know what? I don’t doubt that Kellen knows we love him. I also know with absolute certainty, that he knows he is safe with me and with us. That’s all I can hope for. I want my son to know he is loved, to know he is valued, and know he is safe. Are there days where we don’t work enough with him or push enough? Absolutely. Are there days where we allow too much time watching Thomas and eating goldfish? Undoubtedly. But we love that little boy more than anything in the world. We will get through this. I have no doubt about it. I’m trying to be realistic in my expectations… this is not going to be a quick journey, and it’s not going to be easy. He is going to struggle, we all are. He is going to get frustrated, we all will. He is also going to succeed and achieve so much. He is so loved and he has such a strong foundation of people supporting him. He reminds me every day to slow down, to observe more, to think more, to give time, to laugh, to love, and to have constant faith. 

We got this kid, we got this.<3 <3 <3