Family

I feel like I'm starting to settle in here on the moon! Things seem to be brighter, happier, and settled now that some time has passed. The official diagnosis is settling in and it doesn't hurt so much anymore, which feels amazing! There has been some changes this past week that I wanted to blog about and then we'll get to Desmond's ABA session.
On Tuesday Marshall's family dog died. Gunner was hit by a car. Gunner was getting pretty old, he was blind, and going deaf. He most likely didn't hear or see the car coming. It has been sad, but in the long run it was probably the best thing for Gunner. He was such a kind, sweet, chocolate Lab. We're going to miss you Gunner!

I do have some good news! I have a new niece! She is beautiful! Her name is Lyla and we are all so glad she is here! Here is me and Desmond with Lyla. Not the best picture of me, but it's cute of Des with his new cousin!

There is nothing like a newborn baby coming into the world. Lyla has brought so much love, perspective and optimism to my heart, that is for sure. While I was holding her I couldn't help but feel so grateful for the things I do have in my life; my little family, and my extended family. Welcome to the best family in the world little Lyla! We are a family who take care of each other, we're there for each other through rain or shine, thick or thin. No one will love you more than us little one!
Desmond's ABA session went okay this week. We decided that it would be best to split up the session. Instead of once a week for 2 hours, we're going to change to twice a week for one hour. Desmond does really well for the first hour, but then he starts to get cranky, moody, and starts to shut down in the second hour. We think it will be better to have more frequent/shorter sessions with Rachel. This will be better for Desmond in a lot of ways. First being, he'll get to see Rachel on a more regular basis and get used to her being here. Secondly, his attention span won't have to be completely warn out every time Rachel comes. Even if it is for just an hour, Rachel will be able to do more quality work if we shorten the time and split up the days.
I think it's going to be really good. Just as we've had to come to terms with this new life on the moon, so does Desmond. He needs to know that Rachel is going to be a very active part of our life now, and that he's going to have to put in some work too! I don't have so much fear anymore (of course I still have some) about our life here on the moon. Lyla taught me something great yesterday. Family is what is most important. If I have that, everything else will fall into place. I know it will! We'll keep chugging along, day by day, here on the moon. Overall, I would report that it has been a very positive week and I'm looking forward to the next!

You are my Sunshine

I've been feeling really grateful for this man today. This is my better half, my rock, the best decision I ever made, my hunky husband Marshall (Insert swoon here). I decided to title today's post "You are my Sunshine" because this is exactly what he's been for me as we've taken on this unplanned journey together. Saturday was a pretty crummy day having to take on the weight of Desmond's diagnosis. Marshall has been and will always continue to be my sunshine when things get dark and dreary. His ability to see the big picture, keep perspective, be patient, loving, and understanding of my feelings and emotions astounds me. How does he do it? I struggle trying to put into words everything that this man means to be. He is my everything, my person, my support, my biggest fan, and my best friend. I think it's important to remember that I'm not the only one who is apart of this journey with Desmond. Marshall has been right by my side through all of this. If anything he has been the front runner! He's working full-time, finishing up his bachelors degree, being a husband, and an amazing father. He has so much on his plate. Again, I find myself in awe of what he's able to do. He does so much to support and takes such great care of me and Des. I am forever grateful for him. I couldn't imagine going through all of this with anyone else. Because of him I know we're going to be okay. I am constantly reassured that we are going to have a beautiful life, and that's because he is going to be with me through it. 

Marsh if you're reading this, I love you so much babe. Thank you for all that you are and all you do for our little family. You are loved, appreciated, and treasured. What would I do without you?! "You are my sunshine, my only sunshine. You make me happy when skies are gray. You'll never know dear, how much I love you. Please don't take my sunshine away." Saturday was rough, Sunday was less rough, Monday was okay, but today the sun has been burning bright in my heart. Today I can conquer the world, and that's because of you. I love you Marshall! #sappyhusbandpost #sappyblogging

Autism Spectrum Disorder: Moderate Autism Type III

I've known for a while now that I'm going to have more good days than bad days here on the moon. I understand this, and have excepted it for the most part. However, I hope I never have a day like I had today ever again. Today was not a good day, it would definitely fit in the "bad day" category.

We got the report back from Autism Therapy Services that Desmond is officially diagnosed. He has Autism Spectrum Disorder: Moderate Autism Type III. It's not like this is anything new, or anything we haven't heard, but it is official. My baby is officially autistic. There's something about seeing it on paper, reading it on an official form, it just broke my heart. I understand that it could definitely be worse, he doesn't have cancer, he doesn't need life threatening surgery, but I still feel this weight of grief! It's so hard when a professional in the field of autism confirms what you see everyday, and then labels it. Autism.
Marshall has said that the hardest part for him with all of this is not being able to talk with Desmond, know what he's thinking, teach him new words, things like that. For me, it's been the unknown. It's been like walking in a dark tunnel with no flashlight, no moon, no light at the end of the tunnel, just darkness; hoping that if you keep taking one step forward that you won't fall in a pit full of man eating spiders. It also feels like the life I thought we'd have is slipping through my hands like sand. I'm desperately trying to keep a hold of it, but the more I try to grab the more it slips through my fingers. Will Desmond ever talk? What will it look like when he starts school? Is he going to be able to make friends? Will he be that boy who sits alone at school because he's different? I could easily be filled with so much sorrow just getting caught up in those trains of thought. Even in this mist of darkness, sadness, disappointment, I can hold on to one thing. My testimony.
I know that there is a God. I know that He knows all things and has a plan for me. I know that I may never understand why Desmond has autism, but He does. I kept thinking over and over today how grateful I was for my faith, because I wouldn't like to imagine going through this trial without it. I know that it's okay to have really bad days like today. I know it's heart breaking that Desmond has autism. I also know that it's going to be okay. I know this because in the storm of uncertainty that I have felt the past 6 months, the only thing I have been able to hold on to in the sand of my life right now, is my Rock, my Redeemer. I know that Jesus Christ loves me and has felt my sorrow. I know that He has felt my pain. I know that He would not give me a trial that I could not endure. I know He would not give me a trial and then leave me alone. He will be by my side, my Marshall, my family, my friends, they will all be here to support me and will make my burdens light.
We will find joy in this journey; maybe not today, and that's okay. I may have more questions, doubts, fears than I do happiness, answers, and determination right now. What I do have is more important; Marshall, Desmond, family, faith, and a Savior. I am so grateful that this is what I have now, and I know everything else will come.

Crazy Week and Hoping for the Better

I feel like this week was really long! A lot seemed to happen this week on the moon; one of them being this:

I wouldn't suggest to anyone when trying to open a stubborn lid to use a kitchen knife to pry it open. (Insert eye-roll here) This cut landed me 5 stitches and it's made being a Mommy a bit difficult here on the moon. Marshall has been amazing though. He's been picking up my slack and helping me out a bunch this week!
Desmond had his ABA session yesterday and a session with his sensory therapist the day before. It was a lot of the same this week, doing activities that get him to interact. Rachel brought a bubble machine this week and Desmond LOVED IT!!! That is going to be a great reward for him! I think the biggest news of this weeks is Des is consistently signing for "more" and is signing without any kind of prompt from us! YES!!! VICTORY!! Now that he's able to do this on his own, we can move on to other signs like "food", "drink", "up", "down", "all done", things like that! We're hoping to see more signing from him in the future.
On a low note...for whatever reason, Desmond was WIDE AWAKE at midnight last night. He then proceeded to be WIDE AWAKE until 6:00 am this morning! Needless to say, yesterday was the longest night of my life! When things like this happen I can't help but think, "Is his autism getting worse?" I mean you hear the horror stories from mothers whose autistic children don't sleep at night. Is that going to be Des? I know I can't expect the worst after just one bad night, but I can't help it sometimes. It's hard to separate "normal behavior" from "is this a symptom of autism" sometimes. Whenever he does something out of the ordinary I can't help but think, "Is this normal?" "Should he be doing that?"
I know we had one miserable night, but I'm hoping tonight will be better. We hope for the better! Because sometimes that's all you can do...that and taking a big nap. Those together have always done wonders for me!

Small and Simple Things

Today we had our second ABA Therapy session AND Desmond's first Speech Therapy session! We had double trouble without the trouble today. It made for a long day, but over all both sessions went really well.

ABA
We got a few more of our questions answered today about Desmond and where we go from here. Moral of the, "Where do we go from here?" question is that getting Desmond back on track is going to be a slow process with a lot of repetition. For example, today we did a lot of, what they call, imitation. The therapist would do something, like stacking Lego's, and then tried to get Des to do the same thing. After each imitation she would then give Des a reward for imitating (like blowing bubbles, watching Sesame Street, playing games on the iPad). She would limit the time he got to be rewarded though. She would set a timer on her phone for a minute or so. Once it went off she would put the reward away and it was time to work again. She explained to us that she does this so that when he hears the bell go off that he knows the reward time is over and it's time to go back to work. She also spent a lot of time just playing with him. This is what we're going to see a lot of moving forward; a lot of small things that hopefully add up and move us forward. One thing that was nice to see today was Desmond signing for "more". We have been working on the sign for "more" for about 4 months now and he's finally getting it! He signed for "more" a bunch while she was working with him! It's the little things right? Des was up at 6:00 this morning so by the end of the session he was getting tired. We decided to put him down for his nap early. He got about an hour and a half nap and then it was time to start Speech Therapy.

Speech Therapy
Speech Therapy went really well today. It went just as I expected it to. Like most first appointments, the majority of the session gets eaten up by explaining Desmond's history. We spent most of the time explaining Desmond's behaviors, his speech delay, his hearing exams, and our road that lead us to start ABA. It was nice because the Speech Therapist actually has a daughter who is autistic so we didn't have to explain in detail what we have been seeing. She completely understood because she has dealt with it firsthand. The last bit of the session was dedicated to what we can be doing to help Des with his language. I'm trying to think of a simple way to explain what she wants us to do...but I'm coming up with nothing. Bare with me and I'll try to explain the best I can what she wants us to do. Basically she wants us to get him to "share". "Share" meaning, 'steal the things he's playing with to get him to look at you'. I know that sounds rude, but let me explain. The example she used was Desmond's sippy-cup. He was drinking out of it and she grabbed it from him (of course nicely), put it up to her cheek and said, "cup" and gave it right back to him. What we're trying to do here is to get him to look at the object, put it up near our mouth so that he will look at our lips, put a name to the object, in hopes that he'll start paying attention to our lips and the words we're saying. There is probably a WAY simpler way of explaining this, but this is the best I can do. Imagine for a moment if you were playing intently with something and someone took it from you. You'd turn your head, look at the person, and be like "What the heck?!". We hope Des will do this too. In therapy terms, this is interaction. Interaction is the KEY to getting Desmond to start talking. Of course, just like with ABA, this is going to be a slow process. The hope with consistency, patients (on my end), and daily baby steps we'll start to see some progress down the road.

4 months ago we started teaching Desmond how to sign for "more" and now we're seeing the fruits of our labors. I think this is how our journey is going to be in the long run. This scripture comes to mind, "Now ye may suppose that this is foolishness in me; but behold I say unto you, that by small and simple things are great things brought to pass; and small means in many instances doth confound the wise."-Alma 37:6
I may not understand the small steps that Desmond is going to take, but I am sure that as the days start adding up that "great things" will come to pass in our little family. I may not be able to see our future, and the unknown can be scary, but I know God is in control. I know that He loves me and I know He loves my Desmond. I know that if I lean on and follow His understanding that someday these small and simple things will turn into something great. Baby steps.

One small step for man, one giant leap for mankind...

August 19, 2016

Today was our first session with Desmond's new therapist and it went really well. I don't know what I was expecting, I think the worst. This whole week I was thinking, "She's going to come in and tell me all the horrible things I've been doing as his mother and that we need to change everything!" I tend to do that. I tend to think of the WORST possible scenario. There is a positive to this way of thinking though, it never ends up being THAT bad. This was the case today.
She came for 2 hours and mostly spent time playing with Desmond. She wanted to spend the time getting him comfortable with her being there. We spent most of the time trying to get him to play with us. This is sometimes difficult. He's not the type of kid who will sit down and play for long periods of time. He prefers to run around and be active. With that being said, he did okay playing with us. There were quite a few times where I had to grab him and bring him back, but over all he did well.
I think the biggest miracle is that he seemed to really like Rachel! He interacted with her a few times and didn't seem to mind that she was there. Desmond doesn't usually warm up to strangers, but he did with her. I was SO GRATEFUL!
Our game plan for now is to have her come once a week and then once Desmond turns 2 we'll hit it hard and have her come every day. I don't know much of what is to come, but she explained it a little to me. A lot of what ABA is, is choice/reward. She asked a lot of questions about what he loves and what would be good rewards for him. She said we'll start by getting him a little work station, a place in his room where he knows it's where he "works". The first thing we'll need to get him to do is to stay in the room and stay in the chair. If he does that he'll get a reward, like he'll get to take a 5 minute Sesame Street break (Desmond LOVES Sesame Street) or get a treat, something like that. Once we get him to understand his "work time" we'll move on to things like eye contact, imitation, social interactions, and language.
Today may have been just a little step for Desmond, but it was a huge step for me. I was so worried about having a stranger come into our home and judging me as a mother (I know, a totally stupid thought). This was not the case, at all. This process is going to be tiny steps of faith and I know sometimes huge steps of faith. I feel like a lot of this has been stepping into the dark HOPING that it will all work. Hoping that the future will be Desmond talking, Desmond interacting, Desmond looking at us. I hope these little steps lead us in this direction. But, until then we're going to have to really lean on our faith and keep hoping for the best.

Bear Lake

We just had an AMAZING time at Bear Lake with Marshall's side of the family! To be honest it was the perfect little get away from reality that I know I definitely needed! We left on Friday August 5th and drove about 6 hours up to Logan. Desmond has always been such a good traveler and this trip was no different. We stayed with Marshall's brother Colton and his sweet wife Jenna. We spent Saturday and Sunday with them playing Michigan Rummi and watching the Rio Olympics. The rest of Marshall's family got to Logan Saturday night and we left for Bear Lake Sunday afternoon.

This is where we stayed while we were at Bear Lake. Isn't it beautiful?! There were plenty of rooms, beds, and bunk beds. There was even this cool little cave that went under the slide and then connected into the master bedroom. It was SO nice! This barn was just 20 minutes away from the beach. We were able to watch the Olympics, play Quiplash, cook meals, and spend quality time together. Probably my favorite thing we did here was play "drunk waiter". It's when you spin in a circle until you're dizzy then try to walk a tray of cups across the living room. Needless to say, we all fell over immediately, some more than others.

Monday we got all of our beach gear together and headed for the lake!

Desmond LOVED the lake, and that's an understatement. He is our little swimmer fish and loves the water. Once we got his floaty on he dashed for the water and kept running through it. The great thing about Bear Lake is that the water is shallow at the shore line and keeps at that level for a while. It was like a giant kiddie pool for Des! He kept splashing, running, and playing in the water. He especially loved it when the waves would hit him. He would laugh and laugh as each one came closer and then hit him. He's started doing this thing when he runs where he lifts his knees up really high! It's so funny to watch, especially when he was running through the water.

While we were there I was able to catch some pictures of Des 'stimming'. For those who don't know what stimming is here is the definition: "Self-stimulatory behavior, also known as stimming. A repetition of physical movements, sounds, or repetitive movement of objects common in individuals with developmental disabilities, but most prevalent in people with autistic spectrum disorders." We started noticing Des doing this pretty early on. When he gets really excited, happy, or upset he'll start flapping his arms, then he'll clench his fist, go a little rigid, starts opening his mouth really wide, and then he'll start shaking his body. He had a bit of a cluster of these when he was sitting with his cousins playing in the water. I think he just got really excited, but he did about 5 or more rounds of stimming that just puts that pit in my stomach full of worry. I think to someone on the outside you'd think that what he is doing looks pretty cute. I don't blame anyone who says, "Oh, Des is being so cute! Look what he's doing!" I mean for the longest time I thought it was pretty cute too, until I came to realize what it actually was and what it meant.

We were also able to do some fishing, Des got to throw some rocks into the pond, play in the park near the barn, and we went to the lake again the next day. We had an absolute blast this trip and were so grateful for the time we were able to spend with family. My heart was filled to the brim with gratitude for family and the love that we felt for each other. There were a few times this trip that I teared up because of how grateful I felt for my in-laws and the support they've given us. I feel truly blessed to be apart of this amazing family. Desmond has the best Grandma, Grandpa, Aunts, Uncles, and cousins. We loved our time at Bear Lake and can't wait to go again someday! Hopefully some day soon!