Brand New Kicks!

Today I took Calvin to get his braces fitted for his feet. This has been a little bit of a work in progress so I'm glad that they're here and that we can take some big steps in the right direction!
        It wasn't until we moved to Texas that we were told he had low muscle tone, but I had suspected that something was wrong for a long time. He wasn't sitting up on his own until he was almost 11 months, and he wasn't walking independently until almost 20 months. When he did start walking, it was very hard for him and he could only manage several very fast, clumsy steps at a time, and then he would fall down. His gait was awkward and he honestly looked like he was drunk. This is kind of normal for new walkers, but after a while it should go away and it never did. When we lived in Boise I had mentioned several times to our physical therapist that I was concerned about his lack of balance, and how delayed he was with sitting and walking, but she brushed it off and said his lack of balance and coordination was probably due to his ears. It still didn't sounds right to me, but what did I know? His inner ears are completely deformed, so I didn't doubt it.
      After we moved to Texas and things finally calmed down, Calvin wasn't walking any better. I was a little frustrated but we had so many other things to worry about that it didn't take a priority for me. Then I got him enrolled in the Early Childhood Intervention Program here in Texas. It's very similar to the Infant and Toddler Program for the state of Idaho. They both service children with developmental delays due to Blindness, Deafness, and other disabilities.
       On the first day of our assessment, the intake coordinator came with a physical therapist. I was really annoyed by this. His need for the program wasn't because of a physical delay or deformity, but because of his hearing loss. I didn't think that a physical therapist would be able to accurately assess his hearing and need for intervention.
       It turned out that George is a good man and competent ECI Team member. Calvin really likes him and especially his backpack, where he always hides a sucker for him to find. On the first visit, George noticed Calvin's drunken sailor gait within 5 minutes and went to work on him. He told me that Calvin has very low muscle tone and that it's actually affecting his bone development. His feet and ankles were turned in so far he was walking on the outside edge of his big toes and that's about it. I told him he had poor balance because of his ears, and he very gently told me that no, that's not why he had poor balance. He laid Calvin on his back and lifted his legs up and let them fall. His legs fell apart in a perfect split with his ankles to the floor and it didn't even phase Calvin. He said he has poor balance and walking skills because his muscles aren't able to communicate that he's falling, or not supported.
      He also lifted up Calvin's shirt and asked if I had ever noticed that his rib cage flared out. I said YES! I had pointed that out several times to anyone who would listen and everyone said, "it's probably fine. It will change as he grows." What's happening is that his abdominal muscles aren't strong enough to hold his rib cage in a nice contour, so they're flaring out. The treatment for this is that we have to tape those muscles in position to support his rib cage until they are strong enough to do the job on their own. He does NOT like the tape, not even if I let him scribble on it (that usually works for band aids).
         So, we went and got fitted for braces, we tape him up and we work hard! We do physical therapy every day, in addition to signing and speech therapy. It makes for a busy day and a tired baby. It's a challenge to continue to find ways to make it fun and seem like play, but Calvin is usually a good sport about it. I was so excited that we were able to get his braces in CUBS gear!! Maybe his next set will be the Saints? Either way, watch out! He's already busy enough. When those braces come off he's going to be running faster than I can catch him!

Speechless

Today was Calvin's first Speech Therapy session since his processor was replaced. Calvin has previously had therapy, but due to moving, my work schedule and implant issues, it has been spotty at best. Now that everything has calmed down, we are hitting it hard. Twice a week we are in clinic at The Speech Emporium in Cypress ( I hate the name of that place, it sounds so cheap and does not at all reflect the level of professionalism that we are given).

Because of the inconsistency that we've had before, I didn't expect a big response from Calvin today. However, what we got left me speechless.

The first amazing thing that happened is that when we were all quiet for a moment, Calvin turned and looked at the clock and then pointed to it. I hadn't even noticed it ticking, but he did. I was so surprised that he could hear something so quiet. It was such a good affirmation that his implant really is working and that he can hear again.

As we worked with the speech therapist, we started with his ling sounds. Those are simple sounds like 'oo' 'aahh' 'buh buh buh' 'eeee' and 'mmmmm'. Usually Miss Jennifer will hold a toy to Calvin's ear and motion that he needs to listen. She covers her mouth with a hand, and then when she has made the sound,  and he hears it, he can drop the toy in the bucket. He hasn't really alerted to any sounds made by human voice yet, so I wasn't expecting a response. But when she made the 'ooo' sound, not only did Calvin's face light up, but he dropped the toy in the bucket and said, "ooo". That is the FIRST TIME he has ever made a sound other than "mum mum mum mum" (That's an instictive sound. He didn't make it because it had any meaning to it, it was because he can feel the vibrations on his lips). I was so taken aback and surprised that I started crying. I didn't expect a response at all. Usually I take pictures or video tape his important sessions, but I didn't expect him to start articulating sound today- especially after having such a long break getting his implant working again.

It sounds like such a little thing to hear a kiddo say "ooo" but to me it's priceless. Calvin's deaf voice is becoming pretty pronounced. While his implant wasn't working, he started making more instinctive, gutteral sounds. Some of them were more gurgling, and some are just hard to describe. Usually I laugh at them with him because they sound cute, and they're fun for him to make. They're sounds that feel good on his lips and tickle his throat. Then there are his sounds of frustration and anger. Usually it's just a VERY loud "uh uh uh uh uh" sound over and over again. When he can't find the sign language to tell me what he wants, or no matter what I sign back to him or show him or try to help him, and none of it satisfies him- this is the sound he makes. I've accepted that this is a part of him, and for the most part I can handle it. But there are times when it really does break my heart. It makes me sad when I hear other kiddos his age who are starting to voice. It makes me sad when were in public and he's mad and makes that sound and every parent within ear shot gives me a horrible look. It makes me sad when I am tired, and get frustrated with him for it. It's not his fault and it makes me feel terrible for being frustrated, but it's our reality.

I am grateful for the efforts that we've made to learn ASL. Even though we are working so hard to help Calvin use hearing and speech, I never want him to be in an environment where he doesn't have a voice, weather its spoken or visual language. I read a study once that stated the statistics of Deaf children who were sexually abused. It was staggering. I never want Calvin to feel like he can't tell someone if he's being hurt, no matter what environment he is in. I will do whatever it takes to give him a voice, and the ability to advocate for himself. I prefer to be the one who is left speechless at what a wonder this little man is.