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

               

“So there’s this boy. He kinda stole my heart. He calls me Mom.”

     Greetings my humble blog followers. :) As you can see, I continue my brilliant trend of writing a post every 3 months or so… not incredibly effective but what I manage to find time for right now.

         Kellen has made some really nice gains since I wrote last. It’s funny, in a moment where I was feeling defeat over how slow progress has been, I came back to this blog and reread my words. I read how many approximations/words he had in January and realized just how many new ones he has gained since then. I think this writing piece will be huge for me in that way. It is so incredibly easy for me to get caught up in how far behind we are instead of looking at how far forward we’ve come. Already we know that this is a journey we must just blindly navigate through. It can be so hard when you look around and everyone else seems to be speeding past you. Anyone who tells you they don’t compare their child to others is a saint (or a liar). It is impossible not to. Just today, while dropping Kellen off at daycare, I listened to a little one two years younger than he is saying words he does not yet have. Two years younger! I cried on my way to work for my little boy who watched me through the window, thinking of that sweet voice that is trapped in him. I dream of hearing the words of his heart; to know what he’s thinking or wondering as he’s observing the cars driving by or the birds outside. He will be 3 ½ next month. I dream of hearing him say, “I love you.” Except… you know that old adage, actions speak louder than words? Absolutely, undeniably true. I have living, breathing proof in the blue-eyed, towheaded boy who walks beside me. Without ever hearing those words, I know undoubtedly that he loves me.

             So what is life like for us now? Kellen continues to have speech therapy 2 days a week. We are not yet sure what we will do once summer hits. Last summer he did speech twice a week at the private speech therapy place he attends. He will lose his school speech over the summer so as of now, he will only go once a week. This, we know is not enough… but we run into a road block with insurance (and cost). Everything I have read about Childhood Apraxia of Speech is that kids do best with intensive therapy. Our insurance only covers 30 visits a year (and only those 30 once our deductible is met of course). This means that they believe that once a week, 7 months of the year is enough. I have always been pretty blind to the understanding of insurance; yet all of the sudden I find myself feeling angry about it. How can they define what is best for my child? How can they define that all speech needs are the same? It’s like trying to cram a square peg into a round hole! So… if we continue with speech this summer and up it to 2 days a week, then we will run out of our allotted visits. I have actually looked into hiring someone privately to come to our house and work with him once a week and just paying them cash; that may still be the route we take. As of  my last count, he has about 65 approximations/words. MOST of what he uses are approximations. If you’re like me, and your child isn’t in speech, you may not know what this means. Approximations are the beginnings of language. They are parts of words. So saying “ba” for ball or “bu” for bus.  99% of Kellen’s words are approximations. One thing that makes us continue to believe that he is battling Childhood Apraxia of Speech (CAS) is that many of his approximations involve dropping the beginning of words. This is atypical language development. So for example, his word for orange is “juh” and his word for oval is “vul.” He also continues to only speak one clear “word” at a time. When he speaks in greater length, you cannot understand him at all. It all sounds like complete jargon (but he uses great expression and often will use hand gestures too! :)). He does an excellent job of communicating nonverbally. An example is if he wants a snack, he will go to the kitchen and point to the cupboard. If this does not get my attention, he will make a closed mouth sound to go with it. If this does not work, he will come directly to me, point again and make a sound. If I still choose to ignore him, he will try and grab my hand and take me over there or try to push me from behind (if I’m sitting) as if to say- please come help me.

      Another big gain for us is that he has started imitating more. It used to be that I would ask him, “can you say…” and he would shake his head no or just refuse to try. Now, he is trying new sounds. This is really great to see. There are letter sounds that he struggles more with (r, l, v, w, y, to name some off the top of my head) and many of his vowel sounds are over-generalized; we hear the schwa vowel sound more often that others (bu – is used for bubble, bus, boat,  etc) . He can produce most vowel sounds in isolation but within the context of trying to produce a word, they sometimes get lost. He continues to use some signs to communicate as well, but most definitely uses nonverbal signals as his main form of communication. He is quiet, often (though not as much as he used to be). We know that his receptive language is strong. He can identify his colors, his shapes, some of his letters :), he can follow directions, remembers where things are, knows what objects/people are and do (in general) but his expressive language continues to be way behind.

     One of my biggest fears for Kellen is just the fact that his inability to communicate effectively means that he can’t fully get his needs/wants relayed to others. For example, most 3 year olds can say to another child who has just taken his toy away, “hey give that back, that's mine!” Kellen cannot. This breaks my heart. We were swimming the other day and he was playing with a rubber duck in the water. Another little boy swam over and just took it right out of his hands. Kellen just looked at him and let him take it. It was like, well what else can I do to let him know that’s mine? Of course I stepped in, but I can’t always be there. I don’t want to be this helicopter type mom but I also don’t want my sweet, loving, kind little boy to get taken advantage of because he can’t communicate. As of now our plan is to send him to preschool next year two days a week (but we have to tackle potty training with him first…). I truly believe it will be good for him; the social aspect (right now he is in daycare full time but there are only a handful of kids… but his daycare teacher is AMAZING), the ability to get speech services possibly even twice a week there… but I worry about him holding his own with his peers. He is a very easy-going kid. I worry about not knowing what goes on during his school day because he can’t fully tell me when he gets home what he did. These things are on my brain already and I just have to tell myself- that is still several months away… we will tackle that hurdle when we get there.

      Tomorrow is Apraxia Awareness Day. We actually do not yet have a formal Childhood Apraxia of Speech diagnosis. Yet, we have been told by multiple people (OT, SLPs) that this is likely where we will end up; it has just been hard up until more recently because he is so young and because he had so few words. We have talked about taking Kellen downstate this summer to do a more comprehensive evaluation and get a complete diagnosis. Over the last two years, apraxia, a word which I had never heard, has now become a part of my vernacular. It has become a disorder that has become very close to my heart. We struggled with whether to do anything for Apraxia Awareness Day or not; but we have decided that part of our responsibility to Kellen is to help spread awareness. Tomorrow is the first real step toward doing this. I hope that by initiating conversation about our struggles, others may also share theirs or we may be reminded to practice patience and tolerance. I am a sea of quotes in this post but apraxia’s silent existence is a reminder to me (and will hopefully be a reminder to others) of that age old saying, “Be kind. Everyone you meet is fighting a battle you know nothing about.” We are so extremely proud of our little warrior and so extremely proud to be members of his army.The biggest thing is that apraxia does not define Kellen. There are a million adjectives I could use to describe this unbelievable little boy, but that is not one of them. While we know this may be a long journey to him finding his voice, we feel blessed that this is all we're facing and feel blessed because God gave us this amazing child for a reason. We are learning so much from him and I am closer to him than I think ever possible. I am so incredibly in-tuned to him because I spend my days reading his nonverbal cues, reading his heart. 

      As per also my usual, this post has gotten exceedingly long. So now, I will end this post with a few videos. If you’re like me (curious/nosy without meaning harm :)), you may be wondering well what does apraxia sound like? Below is what it sounds like to us. Both of these videos are probably 6 months (or more) old but you can get a general idea. One with some specific approximations being targeted and the other with his free talk (jargon sounding). It's amazing re watching the approximations video now and seeing how far he has come. Also as per my usual, I thank you again. Thank you for walking beside us through this and supporting our precious boy. Thank you for talking to others about apraxia and for remembering its existence when you see a seemingly “normal” child screeching, squawking, or acting up. Thank you most of all for loving our family and being the people we want to share our story with. <3

Long Overdue: Time is a Thief I Would Rob

      I’ve been thinking a lot about time lately. All along as a parent, I’ve found myself wishing time would slow down. Wishing those little newborn sounds would last a little longer, those first smiles hang on a bit more, those milestones of crawling and walking to not come so quickly, to savor and soak up every little ounce of cuddling and snuggling I can. Except, lately… I’ve been thinking the opposite on time. A small part of me wishes time would speed up… just for a short while. I just need a peek in our future; to see our sweet boy in school, laughing, doing well, TALKING with his peers… and then I think I could be just fine with where we’re at right now. But that unknown- that uncertainty of if/when he’ll get there, what it’ll be like for him, what other struggles he might face… pretty much eat me up more than I should admit. And then I get annoyed with myself and tell myself to get over it. I have to remind myself sometimes to be grateful for this blessing- that he is teaching me so much about myself, about people, and life.

        I haven’t written like I had planned but I hope over time I will find time to post more openly and write more frequently. For me, as his mama, one big thing I want for him is a greater understanding for others of what Kellen is experiencing. Like I wrote before, prior to Kellen, I had no idea what Childhood Apraxia of Speech was. I don’t think a lot of people know a lot about it. I’d like to try and help change awareness and understanding. I fear the judging. I fear it because I know how real it is. I know how many people were giving me the side eye yesterday as Kellen screeched/screamed when his ski boot fell off. I know because I would have done it…I HAVE done it. To the outsider, he can appear like a child whose parents need to get him under control. To us, we know that screeching/screaming is his way of telling us something is wrong, he is mad/upset/scared/frustrated. Maybe if there was more awareness and a greater understanding of things like Childhood Apraxia of Speech, there would be less judging and more compassion. Being a mom sure is a tough gig.

        One of the biggest things I struggle with lately is over-thinking things. Actually that’s a lie… this is not a NEW struggle for me J ha. But for example… Kellen laying in the snow crying/screeching yesterday after skiing- is he crying because he’s frustrated he can’t communicate what he wants/needs? Is he crying because he’s a 3 year old and that’s how they roll? Or is he crying because there’s something else greater going on? Covering his ears when he’s mad (a new thing that just started two weeks ago)… normal? apraxia related? something else? It drives me crazy the mind games I play with myself. I wish I could get myself to not be so hyper focused on it sometimes. Because then- I look at him now- as he’s dancing along with Daniel Tiger, shooting hoops in the living room and signing “more” to me with regards to the cheezits he’s currently eating out of a toy pan and I think… he’s fine, he’s perfect, he’s wonderful.

      Because he turned three on January 2^nd (speaking of time… how did that happen?!), we had a re-eval with a new speech person from the ISD as well as the woman who has been working with him through Early On. He qualifies to receive speech at the elementary school because he is of school age. However, we’re not ready for him to be in preschool quite yet (a whole other post on this). Thankfully, my mother-in-law works at the school which is his home school and she is awesome. She committed to going to get him from daycare (about a mile from the school) at 2:15 and bringing him back to school for speech at 2:30-3 once a week. Did I mention she’s amazing?  So he is now getting speech twice a week—once at the school and once at the private therapy place. I actually think it’s nice he’s getting it from two different styles of SLPs and two different settings. CTC (private) is very play based and very much led by Kellen. The school speech is more structured, more specific sound practice followed by some game/activity time.

We did have an ENT appointment around Thanksgiving per Early On’s recommendation but that was a disaster. The ENT was a total jerk and blew us off. He literally looked in Kellen’s ears once each ear for 2 seconds and called it good. He then said, he’s a boy, he’s an only child, or you know, there is always autism. I cried all afternoon after that appointment (and the SLPs that have worked with him- 3, the OT who worked with him, and our pediatrician have no autism concerns). Again, a time where I was holding onto a sliver of hope that maybe just maybe there was an “easy fix” to something that is something I fear unfortunately is going to be a long battle for our sweet boy.

Currently Kellen has about 20 approximations (“words”) in his repertoire- many of which sound the same but he uses in correct context. Ma, Da, bu (bus), bu-bu (school bus), bu (buns = butt :) ), du (duck), a sound that is like an exaggerated pucker for truck, bu-bu (bubble), puh (help), doh (no), yah, da (dog), dar (star), a sound like shaw (Chauncey), ba (ball), bo (boat), puh-puh (purple), pah (stop), coo (thank you), doh (tractor), plus one animal sound (owl), a siren sound, and uses sign language for more, eat, please, cat, dog, horse, help, and more. He also has a very large collection of meaningful gestures, all of which help him get a point across when he cannot with words. Oh yeah and he can screech/scream/whine with the best of them too. :)  Other “normal” mouth things he can’t do but should be able to developmentally are blow bubbles or stick out his tongue when prompted. He JUST figured out how to blow air out to do things like play a harmonica.  This is certainly growth since we first started speech- but it has been exceedingly slow. I think sometimes you think (well okay I did) that once we started speech, that things would just start clicking. I also think a small part of me thought that maybe magically once we hit three things would just start clicking. Neither of these is the case. His SLP said to me once, he’s just going to be a kid that this is a marathon for- not a sprint. They don’t feel at this time that his speech won’t ever come – that he will sometime acquire language- we just don’t really have an idea of when. That’s where that whole look into the future thing would be great. :)

         As is my usual, this is getting longer than intended so I shall end this for now. Thanks for reading, thanks for learning along with us, and remember as you see that child screeching in a grocery cart, that maybe he/she isn’t just being a bratty toddler, but rather he/she can’t use their words. Thanks for walking this journey beside us and for loving our amazing little man alongside us. 

                                                                                                                                      <3,

                                                                                                                                       Sarah