Keeping it Real

    If you know me very well, hopefully you consider me to be someone who keeps things real. I don't mean that in a prideful way, but in more of a "here I am, take me or leave me" kind of way. An example, I now have a very lovely scar on the right side of my head/neck that is rather exposed when I wear my hair in a ponytail. I don't like it and I wish it was much less prominent than it is, but I don't have the time, energy or care to cover it and pretend like the surgery never happened. It did, I have a scar, and take it or leave it this is my neck now. (Scarfs do come in handy when I'm having moments of feeling self-conscious, however). So, on that note, things have been harder here with Levi lately, particularly for me, and I'd like to ask for some prayer if you happen to think of us. I posted a video a few weeks ago of him pointing out the window and telling me a story that I never did figure out. Well, this is pretty much a daily occurrence here lately. I can't tell you how hard it is to be a mom and have a child so desperately trying to communicate something to you and feel like you of all people should be able to understand what he's saying, but not be able to. He tells me stories, comes and asks for things, tells me jokes, but it all is done using one or two vowel sounds. He knows exactly what he's saying, but his mouth isn't able to form the words. It's heartbreaking, really. Particularly as his mom. So, if you think of it, pray for me and us in this area.

    As things have gotten harder with him, I have gotten more concerned and am becoming more aggressive with how to help him. After some resistance that I don't feel it's probably helpful to go into detail about, I have finally found a path to have Levi evaluated for an augmentative communication device. The hospital that we take him to twice a week for therapy agreed that it would be very helpful for him to have. This does not mean that we are giving up with him speaking, but more accepting the reality that there is a long road ahead of us. There are a few key benefits of him having the device. 1) It will keep him communicating. I really am afraid of Levi withdrawing more and more out of frustration from not being understand. When no one understands you, soon enough we all would quit trying. Having him be able to communicate in a way that he is understood would be so amazing for him. It brings me to tears to think of all the things he has in there to say that I've never heard! I can't wait to get to know Levi in a whole new way!!! 2) He will be able to hear the sounds of the things he's saying. There are some sounds he knows that doesn't use, and I'm hoping and praying that by using a device to say "dada" he himself with remember, oh, I could say that! and use the sounds he has. Speaking is very hard for him, so I think he's gotten a bit lazy from using sounds that he can do just because of the challenge. Hopefully when he sees the power that these words will have for him, he will be more motivated to try harder. 3) The outside world will be able to understand him. People aren't really sure what to do with Levi. He talks to people all of the time, but they either end up looking to me, or get embarrassed and turn away, or tell him they're sorry, they just don't understand him. I'm hoping this will keep him interacting with the world and keep people interacting back with him! (On a side note, if you are one of these people in this situation, talk back to him. If he's pointing at a picture, name and discuss what he's looking at. If he's pointing out the window, discuss back what you see. If he seems like he's asking for help, ask him to show you what he wants. I know it's a bit awkward sometimes, but hopefully knowing how to respond will make it less awkward.) Praise God, we have found out that our insurance will cover a device for him 100% (they can cost up to $7000!) and this coming Monday he will be able to play with some of the options out there and hopefully we can get a feel for which direction to go. There are literally dozens of devices to choose from, so praying the right one for him becomes obvious!  I will explain more about the device once we have one chosen.

I cannot look at this picture without laughing. :)

    A few other things I'm working towards doing for us is getting us as a family into a community where we are able to relate. About a month ago I started calling around to try and connect with people in the area who also had Apraxic kids. After a week of phone calls calling the national Apraxia association, local special education non-profits, school district case workers, and asking speech therapists, I came out with zero contacts in our area. The only person who knew of anyone in our area with anything close to Apraxia is his speech therapist at the hospital, but he knew of no group or community to become involved in. However, a few weeks ago I was able to track down a national Apraxia social group on facebook and through that, connect with a few parents in the area. It was amazing! We are actually going to get together this Saturday night with all of our kids and I am so excited to be able to interact with other families on a similar road, to compare notes and be able to see other kids with Apraxia in action. I am even more excited for Levi to be able to go up and "talk" to these other kids and not feel out of place. Perhaps he will even feel understood.
   Ok, so, thus endeth my blog counseling session. I feel like it's important to say, not only for me to be able to look back on, but also for the other people out there who maybe stumble upon this and are in a similar situation. Hopefully it's also helpful for those who just care and love our family and are looking for specific ways to pray. We appreciate your prayers and support! This road isn't the easiest, but Levi is so very worth it!