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!

Our steps to the moon

For my own purposes I wanted to put in detail some of the behaviors we've been seeing from Des that lead us to getting him checked for Autism so that when I do look back on this I can have one of those, "Oh my gosh I forgot he used to do that! He's come so far!" moments. Future me, you're welcome!

Des has always been the easiest baby! He rarely ever cries, has been sleeping through the night since he was 4 weeks old, and has spoiled us rotten with his mellow temperament. Think of your easiest child and times that by 5, that's our sweet Dessy boy. He's so peaceful, sweet, and kind. I never thought that his easy going nature would be bad until his easy going nature turned into not interacting.

I think for me I started noticing his eye contact wasn't great as early as 6-9 months. I'd be changing his diaper, holding him, interacting with him, and I'd try to get his attention...but he always seemed to be focused on something else. I remember while I was feeding him his bottle thinking, "I wonder why he's not looking at me. He must just be in his own little world." This has been a thought  that has crossed my mind over and over again. I didn't really think anything of it because he was meeting all his other milestones; rolling over, crawling, walking. We didn't see a big change until after his first birthday. He was doing all the cute things babies do at his first birthday; saying Momma and Da-da, waving bye-bye, playing patty cake, but then he slowly stopped doing those things and started to regress. The first one I noticed was that he stopped greeting Marshall at the door when he would get home from work. Before his regression he would hear the garage door open, get so happy, and run to the door saying, "Da-Da! Da-Da! Da-Da!" Now it's like he doesn't even notice and it's Marshall who has to come to him and show him he's home. Then he stopped waving bye-bye, and we couldn't get him to play patty-cake with us. At the time I just thought he was going through a phase. Me and Marshall were both working full time, but only needed a babysitter for a few hours every week. I thought, "Maybe he just misses us...? But, some parents have to work full-time all the time. I'm sure it's something he'll grow out of."

One day I remember calling for Desmond and he didn't turn his head to even acknowledge that I was saying his name over and over and over. It crossed my mind that it was weird that he didn't know his own name, but again I found myself thinking, "He's still young, maybe that's something he'll start doing when he's closer to 18 months old." Then he started getting into everything, like 1 year old's do. I would say, "No, no, no, you can't touch that Des." and he wouldn't even look at me. I'd say things like this repeatedly and still nothing.

Trying to get Des to interact with us has always been tough. He'll be sitting playing with his toys and I'll go over to play with him. I'll sit next to him and most of the time he won't look up to see that I'm even there; he'll just keep playing. If he's playing with a puzzles (for instance) I'll put out my hand in front of his face and say something like, "Can I play with one too?" and he'll just keep on his merry way like I'm not even there. Most days I have to grab his hand and get him to hand me things or go over and grab his sweet cheeks to get him to focus on my face. And of course, the initial worry that started this rocket ship to the moon, the speech delay.

For those who don't know, we have a bit of a speech delay history on my side of the family. I didn't talk until I was 3 and my little brother didn't start talking until he was well into being 4. However there are good reasons that we were a bit slow. My older sister was chatty from the very beginning says my sweet mother. She started talking full blown sentences when she was 18 months old. Jillian was my translator for the longest time. Jill would say things like, "Tay-Tay wants a PB&J Mommy" when I was still just jabbering my own baby language. As for my little brother McKay, his story is much the same. He's a twin and my little sister Malory would do all the talking for him. I think the big difference between my situation and Desmond's is the interaction. From what my mom has told me I had my own little language, but I was very playful and interactive. I would point for the things I needed to get my needs met, but our Des doesn't do this. He doesn't point, he doesn't look at the thing you point to him, again he's just in his own little world.

I don't want this to be a, "Oh my poor baby" post, because there are a lot of really great things he is doing. He was recently tested in a lot of different skill areas for his age; things like cognitive skills, language skills, social skills, self help skills, and motor skills. His results were as follows:

• Language: 9 months old
• Cognitive: 12 months old
• Social/Emotional: 12 months old
• Self Help: 12 months old
• Motor: 28 months old
• Fine Motor: 28 months old

My Dessy is the motor skills champion!!! He has always been so coordinated! His ability to crawl, climb, run, throw a ball, use a fork and spoon would put all other kids his age to SHAME! He especially LOVES swimming at Grandmas! The first time we put him in a floatie he was instantly able to float and keep his balance. I was so amazed and so was everyone else there! We were all shocked at how coordinated he was in the pool and we are still amazed by the things he's able to do! We have been working on baby sign language with him for the past 4 months and he's finally signing "more". This past week was a huge victory as he's finally starting to do it on his own.
It would be very easy to get discouraged and focus on all the things he's not doing, but I can't help but rejoice in the good and be grateful for the little steps of progress that we've seen since starting this journey back in March. My focus and goal is to live for today and not worry about tomorrow. Each day we have with Des is a blessing. As my sweet mother would say, "Taylor, don't barrow trouble!" All of these things we are seeing will change, and there is so much good to come. Look out world we're coming for ya! Just one day at a time.

Reporting from the Moon

     I've always loved the saying, "I love you to the moon and back". I had  no idea it came from the children's book "Guess how much I love you" by Sam McBratney until I was serving a LDS mission in the North East of England. At the end of each letter I wrote home I always finished it by writing, "I love you to the moon and back". At the time I really did feel like I was on the moon! You wouldn't think that one would feel that way in England, but I definitely felt like I "wasn't in Kansas anymore". I was thousands of miles away from home, my family, and the SUN! I grew up in the most beautiful place on earth, Saint George Utah. I think for most home is always beautiful, but I'm partial to mine. It has beautiful red rock everywhere so you're most likely to get red sand in your shoes than anything else. However, it is a desert and yes (you guessed it) it gets hotter than Hades here. As you can imagine it was a huge change for me to live in England. Don't get me wrong, it was BEAUTIFUL! Green, wet, humid, and very cold; the complete opposite of Saint George. I guess what I'm getting at is that I never thought I'd miss my home environment when getting ready to serve in England for a year and a half. My time in England were some of the best in my life, but it had to come to an end. In March of 2013 I came back to my home and family. It was like I had never left. My time in England seems like a dream looking back, but it was a time when I grew and changed for the better. My time in England certainly prepared me for my next phase of life. I like to call this phase Marshall.
     Marshall is my husband and the best thing to happen to me. We've been friends since we were 13 years old. Our story is a cute one, but I'll save that story for another day. We were married and shortly there after we got pregnant with our little boy Desmond. Having a child changes you and it changes your life completely! "I love you to the moon and back" never rang truer until the day Des got here. As life does, it has it's ups and downs. Our world turned a bit upside down the day I took Des in for his 15 month well check-up. Our doctor was asking me routine questions and then asked me how many words Des was saying. I kind of laughed a bit and explained that he was barley saying Mom and Dad, if even that. He asked me to explain what I meant. I said something like, "He'll gabber like babies do, do-do, da-da, ma-ma, na-na, but I don't feel like he's calling me Mom or Marshall Dad, I think he's still just babbling." He then asked me if I ever thought Des was deaf. The question kind of surprised me, because I had. I then voiced that I did sometimes because he never responds to his name. I then showed the doctor what I meant. Cute Des was just happily playing with some toys in the room when I said, "Des....Desmond....Dessy...Desmond." I then said, "See! That's weird right?!", thinking that his response would be, "Oh don't worry Taylor, that's completely normal for his age."
                                                                         I was wrong. Very wrong.
     The atmosphere in the room changed, shifted. This is when our doctor started to ask me more and more questions, "Did he pass his infant hearing exam?" "How does he do socially?" "How's his eye contact?" "How does he interact with others?" "When he plays with toys does he do anything odd with them?" I answered them the best I could, but I could feel the worry forming in my gut and quickly moving up to my eyes as I started to tear up. He then explained that we needed to rule out whether he was hearing like he should, and if that was the case we need to be open to the possibility that he might be Autistic.
                                                                                           Autistic.
     It hit me like a ton of bricks. Autistic?! No he can't be, could he? I always figured he was just more like me, I mean I didn't start talking until I was 3! Maybe he's just taking his time? Maybe he really is not hearing like he should? Are you sure he should be talking? This wasn't the end to all the questions and thoughts that still to this day tend to keep me up at night. Our story that we had envisioned for our life came to a close that day, and a new one was just beginning.
    These 4 months since that day have been full of doctor appointments, referrals, interventions, more appointments, and worry. We ruled out his hearing, started working with an Occupational Therapist, but by his 18 month Well Exam we were right where we were at 15 months with more questions, but still no answers. We were then referred to an Autism Specialist. My worries coming true. Things hadn't gotten better, and from what the testing showed, my 18-month-old's language skills were still at 9 months, cognitive skills were still at 12 months, social skills at 12 months. In the blink of an eye our life was changing and it was getting scarier. It was like all of our plans and dreams were gone and now we have to start something completely new. This is when this thought occurred to me:
                                                                                      I'm on the moon.
    This train of logic started to form from an article a friend had me read when we had first been told that Des might be Autistic. The article is called "Welcome to Holland". It's a beautiful article describing how life is when your child has special needs. What I'm about to say next will make a lot more sense if you read it! Here it is:

     I knew that starting soon we would no longer be on the "earth" we had planned for. I knew that now we were heading for the moon. I think everyone, at least once in their life, starts to picture what their life will be like; dreams, hopes, goals, desires, and you start making mental plans on how you make this life a reality. These thoughts especially form when you start your family. You start thinking about family vacations, teaching your son how to fish, hunt, how to throw a ball, how things will be when he starts to play sports, goes to school, all of it. We never thought that our reality would include Autism and it's landed us in a foreign land. We don't speak the language, we don't understand the customs, and the culture....it's so much different than home. The saying, "I love you to the moon and back" has completely changed for me. My love for Desmond has landed me on the moon and the plan was that this love would go back, but it hasn't. We're still on the moon and we might never come back.
     These thoughts lead us to where we are now. Today my little boy, my sweet Des became eligible to start Autism Spectrum Disorder therapy . My baby is Autistic. Which means we have landed on the moon and start our journey in this foreign land. With all this being said, I can't help but feel optimistic, hopeful, and grateful. I'm eternally grateful for my sweet Marshall and the opportunity to start this journey with my partner in crime, my best friend. I'm grateful for family and the support system we have here. I'm grateful to live in a time where my Des has access to all the help and interventions he needs to be successful. I'm hopeful for the future and our adventures on the moon. For all we know we might come back from the moon! The hope is with early intervention therapy and a lot of hard work that Des will be able to blossom, start talking, start interacting, and be all caught up by the time he starts school. However, I know that this might not be our reality. We might have to stay on the moon, and that's okay.
     I find so much peace in knowing that there is a God, I have a Savior, and He has a plan for me, Marshall, and Desmond. I know that He loves me and has given me Desmond for a very specific reason and will prepare a way for our life to be full of love, adventure, happiness, and joy. Just like I felt like I was on the moon when serving my mission in England, I soon with time felt at home and grew to love the home I had created in England. I know this will be the same entering the world of Autism.  For now, I love my sweet boy to the moon and will continue to use this blog as a way to report our findings, adventures, journey, and experiences here in this foreign land of Autism, or as I'll be calling it:
                                                                                               The Moon.