#lightitupblue

Hello Blog!
I am truly sorry to have neglected you! April is Autism Awareness month and I've been trying to keep my social media aware, but have neglected my blog! Autism Speaks has been using the hashtag #lightitupblue to light up awareness to everyone about the ups and downs that Autism brings in hopes to spread more love and understanding to all.
I feel like there has been a lot of change since the last time I posted so I'll try to get it all in here!

ABA: We have a new therapist!! FINALLY! Her name is Lacey and we LOVE HER. Even though it was such a hassle to have lost Rachel, scared Lindsee away, but in the end it was all worth it because Lacey is just the person we need for Desmond. She has been working for the Washington School District as an ABA therapist for children on the spectrum who don't have access to therapy in their own homes. She has a ton of experience working with children on the spectrum. She seems to love Desmond and loves that he is still so young and malleable (did I just use the word malleable in a sentence?! Go me!) The best thing about Lacey is her ability to get Des to "work". There is a lot of structure in ABA and Des doesn't like structure. He doesn't like it when he has to imitate, has to show us that he understands, he prefers to just be in his own little world. She is so patient with him, but also is able to get him to show us that he's understanding more.
Don't get me wrong, getting back into our "scheduled routine" has been a challenge. Change is getting harder and harder. We had 3 solid weeks of no ABA so getting back into sitting in a chair, imitating, working, has been hard on him. He's been pretty resistant, but we are hopeful that in the coming weeks he will get back in the swing of things. To be fair, I need time to get back into our routine too! Those 3 weeks were awesome! It felt like we got a little vacation from the moon for a bit. It was nice that we could just do and be whatever we wanted. No rules, no routine, no structure, just mom and Desmond doing whatever we wanted to do. It was SO nice. But, the party always has to end some time. This momma and Des will just need a few more weeks to get back on track!

Marshall's work schedule: Woof. My wonderful hubby moved into the ICU (he's a nurse, not a patient ha!) and has been working there for almost 2 months! He's been technically "training" and only has 2 more shifts as a trainee! However....these past two weeks he's been working at night...hence the Woof. UGH!! It has been so rough on all of  us! Having him working from 6pm-6am hasn't been the worst part for me. The worst part is that he has to come home and sleep while me and Desmond are awake. Our mornings are spent trying to be as quiet as we can, but also trying to feed him breakfast, bath him, get him ready for ABA, get the house ready for ABA, get myself ready for the day. I will be so glad when he gets back on days and I know he'll be super happy about it as well. He has 2 more shifts of nights and then he'll have 10 weeks of days before he has to go back on nights! Hallelujah!

Speech and OT: I feel like we've been off of our speech and OT groove too. We've had to cancel or reschedule appointments lately because we're either out of town, sick, or one of our therapists is sick. Usually we're good about going every week, but the last month has been pretty hit or miss. I think this has effected Desmond too. In all areas we need to get back into the routine we were in before. I do feel like we've seen some great success in his sessions none the less. Particularly in OT today.

Earlier this week I was able to go up north and spend some time with my best friend and older sister Jillian. It was a MUCH needed break for me from the world of autism. One of the biggest blessings was being around her children. I can't tell you how much I loved just simply talking with them, having a conversation with them, being able to understand what they needed or what they wanted and then being able to help them. I don't get that very often here at home. It was a huge tender mercy for me to be around something "normal". Today in Desmond's OT I brought up some thoughts that I had had over my time with the Durhams. I mentioned that one thing I noticed (and I always notice it when I'm around kids Desmond's age) is how purposeful their play is. Purposeful meaning with intent. For example; Desmond's cousin Lucy is just 4 months older than Des and as they both grow older the gap between their development seems to get bigger and bigger. This of course makes sense because hello, Lucy doesn't have autism and Desmond does. I noticed that her play was very driven with purpose and made sense. Desmond's play doesn't make sense most of the time. Frankly, most of the time he's holding a ball and just running around shaking his head laughing at who knows what. I brought up this concern with James today and asked him on his opinion of Desmond's style of play and if we need to help him have more purposeful play.  His words really calmed my mommy heart and once again gave me the perspective that I need. He said, "Who says Desmond's play isn't purposeful? We have no idea what is going on in Desmond's head. For all we know he has a lot of purpose in his play, but we just aren't able to see it." He encouraged me to keep doing what we're doing. Let Desmond take the lead, let him show us how he wants to be played with, and give him opportunities to simply just be a kid. I get so caught up in the Autism World sometimes that I forget that it's not so important to focus on trying to find understanding in our Desmond. Desmond is not going to be like his other cousins (right now or maybe never). I won't be able to understand him right now like I would my other nieces and nephews...and that's okay! Lack of understanding does not mean that there is no meaning. Just because I can't understand Spanish doesn't mean that the person speaking it isn't telling me something or isn't communicating with me, I just don't understand. In a sense Desmond is communicating to us, but in his own way and that way is not wrong, it's just different. The reality is, this "miscommunication" might be here forever. So who is it that needs to adapt, ME! For some reason the light bulb just switched on for me talking through my concerns with James. In this moment of clarity and even typing it all out right now is bringing even more clarity.

Does any of this sound familiar? Trying to understand something that you can't possibly understand, trying to find answers, trying to find purpose and meaning in something that, in this life, we might never understand, but believing that it is still right, real, and true...?

FAITH

Isn't that what it all boils down to? I have felt today in this moment of clarity that everything we are going to experience with Desmond, I'm not going to fully understand or predict. However, just because I can't see it, understand it, predict it, and sometimes even feel it, does that mean it's not there? NO!! It just means that I've gotta leap. I've got to take that leap of faith not Desmond. It's me who has got to change! It's means that I need to have more faith. I understand that this realization really isn't new. I mean I go on and on about how Desmond's autism has been a trial of faith for me in all areas of my life. I guess the difference is that today I not only feel that faith reaffirmed, I feel hope. I feel that little trickle of, "I think I'm going to get it,  I think I'm starting to understand." and I will hold on to this hope for as long as I can. Today I have the faith that I can adapt and the hope that if I do adapt that I will begin to understand.  So my #lightitupblue moment for today truly is LIGHT. It is a new beam of understanding, a beam of faith, a beam of hope. Today I truly am lighting it up blue!