Tonight is a vent...I am just tired. I am emotionally drained, phsyically drained, and just need a moment to let it go and remind myself more than anyone that God has this...there is a plan. I just struggle to find it right now. After I write, I tend to feel better, able to put things in perspective, and regain the momentum I need to keep going.
Last I had written, we were getting things lined up with Babies Can't Wait, Georgia's Early Intervention program. Kaycie qualified for speech and physical therapy. Since our intake with them, things have progressed...downhill. They wanted to hold off on therapies until she was more significantly delayed. Really? What part of early intervention means "let's wait until they are so far behind, they can't catch up?" Under the federal IDEA Act, she qualifies automatically for services because of her diagnosis. They agreed to services because I think I am a pain in their butt, and they are trying to placate me...I was told there is 1 speech therapist in the county and she is very busy, so would we like music therapy instead. I told them I would try it, but in the back of my head I was thinking, "That is like telling me my child needs physical therapy, but do you want speech therapy instead?" Come on. And then I was told they would come once a month...seriously...once a month?! I can get my own degree in speech therapy by the time they have worked with her enough to make a difference.
Good news is that we did get things in place with Georgia PINES, and we have our first session tomorrow. They plan on coming weekly at this point. The kicker is that they are not therapists and promise to work with the therapists that we use to reinforce what she is learning in speech therapy....ummm. We will see how tomorrow goes. They will, however, work with us on the sign language portion of things.
Earlier today I said forget it, and called our insurance company to see how private therapy works. This only to be told that speech therapy is only covered for people who have been injured or have acquired a speech delay that can be resolved within 60 days. I called multiple times, Matt was looking up coverage codes, and I was finally told point blank, no. Since Kaycie was born with hearing loss, she will never qualify for speech therapy....the one place that I know has experience with her hearing loss is upwards of 200 dollars for 30 minutes of work...per week. I haven't even touched the physical therapy part of it that was recommended. I don't have the energy.
We are now getting creative, and I may be able to at least get some resources to help us help her. I don't need someone to do all the work for me...we need someone who can show us how to help her. I have no background in early speech, but I am a teacher. I don't know what "good" therapy looks like with an 8 month old to be the judge if she is getting it or not. Maybe I just need to go ahead and get my own speech therapy degree...I mean we all know I love school, right? I have also done a lot of digging and have talked to some advocates in Georgia that are trying to make a change in the early intervention system because it is so flawed.
All of that said...let me give a quick update on how Kaycie is really doing since her hearing aids were put in about 2.5 weeks ago. We don't really know :) She does seem to hear more, she does not seem to hear every thing. She still cannot localize sounds she does hear. She does not like wearing her right aid, which is her worse ear...we do not know why. It may be because it is bigger and more easily accessible as a toy, it may be because she was hearing nothing out of that ear and it overwhelms her already sensitive senses, it may mean that she is just messing with us because she can :) We are trying to figure out a balance between making her keep them in and giving her "sensory breaks". She yanks at it more when she gets tired, so every night before bed, I let her play without them, so she can wind down. She does get tired faster these days, and takes more naps...she has to work to filter all of the new sounds. However, we don't want to keep them out too much because she won't pick up on language.
That said, the past few weeks we have, for the first time since she was born, gone to church and taken the kids out to dinner without incident! Huge deal around here! We have gone to North Point Community Church for years and volunteered in Waumba Land (the baby-preschool) until Kaycie was born. We have not been back to church since then. Kaycie can be the sweetest baby in the world, but she has a temper. When she decides to use it, it can be stressful to even the most experienced of baby carers (That isn't a word, but you get it). She gets overwhelmed and it can be very difficult to calm her.When we got there, they placed her in a room of experienced adults who took awesome care of her...we even went back the next week :) I think Matt and I were both on the edge of tears when we picked her up at the END of the service instead of the middle. She is getting there. I think it is a combonation of her learning to cope and us learning to satisfy her. Never a dull day for sure.
The biggest news of the week, however, is Kaycie's new sound. She is a loud baby girl. She talks a lot...and very loudly. I need to get a video. Everyone we see thinks she is upset...she isn't. She just yells with a smile. However, she doesn't use any consonant sounds, which is typical since she couldn't hear them for 7 months. Saturday night as I got up to feed her in the middle of the night (no sleeping through the night anymore for this girl, she likes to eat every 3 hours again), I laid her back in her crib after feeding her an got a repetitive dadadada sound...totally new! She was proud too...she grinned the whole time. I think she knew she was making a consonant sound and it was new! It took everything I had in me not to wake the rest of the house up to listen to her!
God has this...I have faith that we will find our path, but gosh, there are some days that I feel like I am blindly navigating it. I make phone calls, not really knowing what I am asking for anymore. I say prayers, not really knowing what I seek. I don't think I have ever been so tired. All the while, I have never felt so strong...maybe that doesn't make sense, but with each failed attempt, I gain knowledge. With each let down, I gain hope. With each moment, I have to remind myself that my family is doing this right now for a reason. I don't believe it is simply so that my daughter can hear, or learn to speak. There is a bigger purpose. I don't know what that is yet...I still feel like we are missing a bigger part of the picture. But we are getting closer each day, and that gives me hope. All of the rest is just technicalities on our journey.
See, I already feel a little better...maybe I can sleep now :) Or maybe not...someone is hungry.
