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!
Last week, we went to Disney World! A few months ago Brian and I were talking about investing in making family memories. We have gone on a few trips with our extended families on both sides, but we had never as our own little family planned and gone on our own extended vacation (more than two nights). It always seems like a "waste" of money to go on vacation, but we had read an article by C.J. Mahaney (I think that's who it was) on investing in creating positive family memories and bonding time and the indefinite value that brings and it got us excited about the idea of doing it ourselves. So, after a stressful Thanksgiving, it was definitely time to have a fun trip on the horizon. We decided to surprise our kids with a Christmas present trip to Disney World! I think we were just as excited as they were. We also invited along the grandparents and we were even more excited when both sets could come with us for part of the trip. After we had planned the vacation, my tumor and the surprise surgery came about and it seemed for a while that the trip would have to be cancelled, BUT GOD opened up a quick appointment and surgery date so ended up having enough recovery time to still be able to go. Praise God! With all of the flu going around and unpredictable weather, I was nervous that our careful planning would be spoiled, but that wasn't the case at all. We were all healthy, grandparents included, and the weather was absolutely amazing. All this to say, we had an amazing time and definitely felt it was a worthwhile investment in our family. The kids were on cloud nine the entire time and still talk about it like it was a dream and Brian and I now deem it as our favorite family trip. It was such a special time for our family and something we all will always remember. I see more "investments" happening in the future...
The pictures are a bit out of order, but it is a pain to reorganize, so I'll just comment on them as they are. This is our first view of the castle on our first night. It really is it's own "world".
The first ride we went on was the safari in Animal Kingdom. Those are hippos in the background.
Abby insisted on going on Expedition Everest with me, which was crazy, because it is a bit of a scary ride. Her face in this picture says it all, although she claims that she liked it, but doesn't want to do it again. :)
We did A LOT of meeting characters, as the kids were very in to it. We met every princess except for Tiana and the kids autograph books are full! Here's Levi with Ariel. He even got a kiss!
Abby's turn with her favorite princess.
This was actually the second Sleeping Beauty (Princess Aurora) that Abby met.
The castle all lit up.
We had lunch in Epcot with five of the princesses, Belle being one.
Snow White, of course.
The princesses had all the kids do a princess parade where they walked and waived. Abby brought along Pascal.
The first Cinderella we met.
The first Sleeping Beauty we met. I don't think Abby noticed the difference. :)
Rapunzel! Abby really had hoped to be able to meet her and it was worth the wait.
This is from dinner the first night. Levi loved meeting all of the characters. It was so cute.
Kenai and Baloo from Jungle Book.
Chip and Dale
The first princess Abby met, Pocahontas. Jonah was confused why her skin wasn't darker. :) Maybe they should give Pocahontas a spray tan.
One of the Donalds they met.
Levi in line to meet Goofy and Pluto, the first characters he met.
Nice pants Goofy!
Can you see DiVine in this picture?
Mulan
They kids really did so well, even though the days were tiring. We rented a double stroller and I was glad we did! Abby needed breaks sometimes too.
A big moment for Levi, meeting Lightening McQueen and his very favorite, Mater.
At the Lego store. Abby's pose cracked me up.
Levi had one roller coaster that he was tall enough for, Barnstormer, and he LOVED it. We went on it three times and he giggled and squealed every time. It is one of my favorite memories from the trip.
I love this pic of my loves on the Teacups with me.
Meeting Merida! This was our longest line of the trip, but it had to be done in Abby's opinion.
Our second Cinderella.
We also met some Disney Jr. characters. Here's Handy Manny.
June from Little Einsteins.
Jake from Jake and the Neverland Pirates.
All of the kids got tattoos. Levi of course chose Mater.
My personal favorites, Phineas and Ferb. That show cracks me up. I think they were Jonah's favorites too.
The Green Army Guy was fun to meet, except he wouldn't smile! :)
Abby, Levi, and Grandpa got to play parts in Storytime with Belle. Grandpa was the Knight.
Here they are with Belle #2.
We went to the car stunt show at Hollywood Studios and to our surprise Lightening McQueen was in part of it! It was fun because he actually drove around. I wish they had a Mater!
The last day there for us the Grandparents were gone and we ate at Chef Mickeys. We met Goofy again.
And Pluto, who Abby said is soooo soft.
Donald again.
This was our view from our table at the restaurant. We were the only ones in the restaurant with this view and it really was magical!
Minnie!
And Levi's very very favorite of all and the last character we met, Mickey. Jonah liked meeting him a lot too. It really was perfect to eat there on the last day.
Riding the Magic Carpets (formerly known by Jonah as the magic blankie ride) while Abby waited in line to meet...
Jasmine and Aladdin. This guy really was a perfect Aladdin. They were pretty funny too.
We ended up trip by watching the Wishes fireworks show at the Magic Kingdom. It was really beautiful and the perfect ending to our trip. The kids were in awe.
They showed a 10 minute movie on the castle and it was incredible! I think it was the coolest thing we saw on the trip in my opinion. I have a clip of it below. This picture is when they projected to make the castle look like a castle in Brave.
I absolutely love this picture of Jonah. It captures how excited they all were. So fun!!
The last ride we went of was A Small World. Levi, the thrill seeker, was raising his hands to add to the drama.
What a fun vacation! We are so thankful that we had the opportunity to go and already cherish the memories.
