And we're back!

Hello Blog! Long time no see!! It is crazy to me how fast time flies! I blink and BAM it's the end of September and I haven't been on here since June! 3 months have gone by and man have we been busy! I'll do my best to update as much as I can remember. I solemnly swear to get back to updating twice a month!

JUNE
There is one exciting thing that has happened in my personal life! I went back to school! I met with a counselor at Dixie State College and talked about how much school I have left to graduate with my degree in Communications. He let me know that I'm really close to graduating!! Me and Marshall set up a plan that I'll take my classes slower since I'm a full time Mom to two beautiful boys. I was going to try to push myself to graduate by May 2018, but I would have had to take 18 credits per semester! So we decided to push back my graduation a year. If all goes according to plan I'll graduate May 2019!
I took 2 summer classes in the summer and loved them! Not to be too braggy, but I got A's in both my classes! They kept me pretty busy, but I loved all the things I learned and continue to learn. The classes I took in June and the classes I'm taking right now are all online. I can submit assignments online, do homework, and be a mom all at the same time. It's great! I really liked how my classes kept me busy because it kept my mind off of how HOT and LARGE I was being pregnant during the summer.

JULY
I honestly don't remember much of what happened in July. I had school, Desmond continued to have therapy, Marshall work. The biggest event that happened at the end of July was our Calvin deciding to come to the world 3 weeks early!! This is a great story. The morning of July 27th I thought I was leaking fluid, so we called my mom and she came over to be here with Des while he finished ABA for that day. We went to labor and delivery and they checked me and I was at a 4+! The nurse said, "Man you must be in a ton of pain being at a 4+!?" Ha I was like, "Uhh....no. I haven't felt a thing!" And that was the truth. The day before I had my check with my doctor and I as barely at a 3, but now I was measuring at a 4+. They decided to send me home because I wasn't leaking fluid, but told me if I was feeling anything, even mild cramps, I should start timing them. They were worried I'd go into active labor and not even know it. Sure enough, later that afternoon, I started feeling very small cramps. I figured I probably better start timing them. The very first time I started timing these little cramps they came every 7 minutes. By the time it was 8:00 pm they were coming every 5 minutes, but I still wasn't in any kind of pain. I was still thinking, "Am I having a contraction? I mean it doesn't hurt at all!" We decided since these little cramps were consistent, I should probably go back to L&D and see if I've dilated anymore. I get there and they check me, yep I'm at a 5+ now! Even though Calvin was 3 weeks early they decided to let me stay! Everything went so smoothly! It was like a dream! They gave me my epidural, which didn't hurt at all, broke my water, then 4 hours later I was ready to push. Everyone came in and with just 2 pushes our Calvin was here! Calvin Marshall Cox was born at 4:12am on July 28th, 6lbs 15oz. I was laying there so happy to have it all over with and the next thing I hear is my mom saying, "Oh, Tay! He has your dimples!!" Yes, my sweet Calvin has the CUTEST dimples!! It was such a wonderful day and I was SO happy to not be pregnant anymore. It was just getting too hot!!

AUGUST
From what I can remember of the first bit of August was that it was really great! Marshall was able to get 4 weeks off of work. He was home helping me with the boys the entire month of August. It was so magical! Don't get me wrong, we've all had to adjust to our new addition, especially Desmond. For the most part Desmond just ignores Calvin. The only time he looks at him or seems to notice that he's there is when Calvin is screaming or upset. We did see more Autism Meltdowns in the month of August than we had in a really long time. When Desmond has a meltdown it usually is him crying a lot and becoming more and more upset. Sometimes he gets so upset that we have to put him in his swing to calm him down. I think the biggest adjustment for Des was that for the first time in his life he has to share his attention. He'd get especially upset if I was feeding Cal and he needed something. However I will say this, we had planned on Desmond's response to Calvin to be a lot worse. We were worried he'd lash out and hit him or something like that. He has not once hit Calvin. He for the most part just ignores him. As the month went on I think Desmond finally came to terms that Calvin is going to be here forever.
The whole month of August for me was rough recovering. Postpartum is not for the faint of heart. As the month went on I seemed to feel worse and worse. I was healing great, but my body just wasn't feeling well. I honestly thought I might be getting some postpartum depression or anxiety because of how crappy I was feeling. At the end of August it all came to a head when I ended up in the ER because of some abdominal pain. I thought for sure they were going to send me home and tell me that what I was feeling was anxiety or postpartum depression; like my mind had made up the stomach pain or something. (I mean when you're postpartum and your body is healing and feeling so much you assume it's all in your head...am I right?!) I was not expecting the doctor to come in and tell me that all the crappy feelings I had been feeling all month was because of my GALLBLADDER. The ultrasound that they did showed major gallstones in my gallbladder. The doctor said that I needed to have my gallbladder taken out or I'd continue to feel so crappy and like a crazy person. A part of me was relieved that it was my gallbladder and not something I had made up in my head. I was also feeling so frustrated. I wanted nothing more than for my body to heal, get back to normal. I needed to be a mom, I needed to be able to take care of my kids, especially Desmond. Desmond requires so much of me physically, emotionally, and mentally. I just couldn't believe that only 5 weeks postpartum I had to have surgery; go back to square one and re-recover. I will say this, I am so blessed to have people in my life to take care of me and to take care of my family. My little sister's father-in-law is a general surgeon. Normally I would have had to wait a whole month to be seen and then schedule the surgery out from there. I was able to talk to my sisters father-in-law and he got me in and the gallbladder removed within 2 weeks of my ER visit. With all of this craziness going on Marshall started his last semester of Nursing School and I also started my fall semester of classes.

SEPTEMBER
On September 8th I had my gallbladder surgery. It went great. Of course coming out of the anesthesia was rough for me. I don't do well coming out of anesthesia. It was same day surgery so by noon I was back home and recovering on the couch. The first 3 days were rough. I felt so useless and sore. I couldn't do much but lay on the couch. I have such an amazing family. The Sunday after my surgery my mom and sister Malory came over and took care of me and my kids. They cleaned my house, did my laundry, and took such great care of me and the boys. What would I do without the support of my family? I think I'd be in the loony-bin if it wasn't for them! By the next week I was feeling almost as good as new! It's amazing to me how something as small as a gallbladder can make one feel so crappy! Looking back on the whole experience, I am so grateful to have that little sucker out of me. My body is still adjusting to not having a gallbladder, but for the most part I am back to normal.

DESMOND UPDATE 
There is our family update! That's what's been going on with me and our family for the past 3 months. However, I didn't get to update what's been going on with our Desmond. The biggest thing that has been going on is that Desmond is using words! He's talking...ish!! He has a handful of words that he uses on top of his babbling and will mimic for the most part anything we ask him to say. Some of the words he consistently says are more, drink, eat, door, and chair. He does have more words he can say, but we have to prompt him to say them. If we say, "Desmond say...." he'll for the most part try his best to say anything. Some of the words he's the best at are cheese, bye-bye, open, and Tal (That how he says Cal for Calvin). We are very hopeful that his little vocabulary will become bigger and bigger. We hope that eventually he'll start talking in sentences and be totally verbal. It's very exciting! He is also learning his alphabet, numbers, and colors in ABA. We are seeing him do really well with imitation. He is copying us verbally and physically. If we wave at him, he will wave back. If we ask for a high five, he'll give us a high five, he does the same think with knuckles! We have seen so much improvement these past 3 months in him. It truly is a miracle.

Does that mean things have been easy. Absolutely not. There are still days where Desmond is very autistic and days where he seems more "with us". There are days where we can't go outside because he gets so upset. There are days where if I take him to my mom's he will totally fall apart because he associates her house with swimming. Summer is over and he doesn't get to swim anymore. He get's so mad every time we go over to my moms because he wants to swim. It's exhausting. Every time we go over there I have to take him upstairs to calm him down because he freaks out so much. It breaks my heart that he gets so upset there. There are still some days where I grieve the loss of the life we wanted for our Desmond. I still find myself crying some nights because it can be so hard and overwhelming. There is still the giant elephant in the room of our life that we deal with everyday, "Is Calvin autistic?" I worry about this too much. I spend too much time reading about infant milestones and worrying that he's behind. He's only 9 weeks old and I'm already worrying his eye contact isn't where it needs to be. Again, it's exhausting and can be so emotionally draining.
I always go back to this, "God is in control". All of these things that I worry about, lose sleep over, cry about, I have no control in any of it. All I know is that this is the life I've been given. God has a plan for me, Marshall, Desmond and Calvin. This life was prepared for me. Even if every single plan I had for my own life doesn't happen, that's okay. I have to trust that God's plan is better. I have to trust that he wants me to be happy and wants my life to be filled with joy. I was scanning through Facebook today and this quote from President Eyring popped up and my news feed. It was a huge answer to prayer, especially with how down I've been feeling lately:

I know if I am faithful and exercise that faith that I'm never alone when things get hard. I've decided to recommit to having a more grateful heart. I need to be more aware of the wonderful things that are going on in my life, because there are many. I have a Savior that experienced everything that I'm feeling and will support me when I need Him most. I know that and I will continue to push through because "He always keeps His word." It has been the craziest, busiest 3 months of my life. Even with the crazy and the busy, it has been a wonderful 3 months. I love my 3 boys so much, they are my greatest joy. There is much to be happy about and much to look forward to. I'm so excited to see where Desmond's progress takes him. There is just so much good to come!

We're Puzzling

I'm going to keep this update short and sweet today! Not much out of the ordinary has been going on over here. Desmond is continuing to do really well in ABA and imitating in those sessions. He seems to have bouts of stubborness though. Lacey will come out and let us know that he's imitating, but she really has to push him to do it. I feel we're seeing a lot of that around home as well. We haven't seen any waving since last post, but we're hopeful that we will see more of that in time.
One thing that has changed around here is Desmond's desire to play with toys. He's actually playing with toys and wants us there while he's playing. Sometimes he just wants us there, but there have been a handful of times where he's actually wanted to play with us too. This is great progress in our eyes! He wants to interact with us! There was a time where he would just sit for hours not wanting to do anything and especially not wanting anyone to bother him. The wind has seemed to change directions in this area. His favorite toys right now are PUZZLES! Oh my heck, this kid LOVES PUZZLES!! He's getting good at them! We've got a harder 3 year old ABC puzzle that he is rocking! It's been so fun to see him play and enjoying the things he's playing with!
It's crazy to think we're getting closer and closer to a year to the date Desmond was officially diagnosed with Autism. Looking back, we've come so far and still have so far to go! What I love is that I feeling like we're moving, especially moving in the right direction!

Desmond doing his ABC puzzle!

Grandma Jayne got Desmond this cool stacker toy that Desmond LOVES!! He'll stack the little shapes so high!

The Imitation Game

It's amazing how things can change. One great thing about updating this blog is that in as little as a week things have completely turned around over here. My last post I was so frustrated and discouraged. Now we have so much hope for our Desmond and his future! I love writing progress posts like this because it really is SO EXCITING! Our little Desmond took some pretty significant steps in the imitation department this week! Holy cow he did! I feel like we're finally reaping the rewards of the the therapy Desmond has had this past year. I also feel like we're getting a little bit of our Desmond back, the Desmond we lost last year when he started to regress.
SHAPES: This past year Desmond has been playing with this "Shape in the Pot" game. It's this little pot that has plastic shapes that you put in it. For example if you put in a circle it will say "Circle" and it will proceed to do this for all kinds of shapes (square, triangle, rectangle, star, heart, you get it). His therapist initially started with this toy to help with his motor skills. At first Desmond really struggled putting the shapes in the pot because the little space was so small. Now he's totally got it down. Recently it's been used to help Desmond learn his shapes. What Lacey will do is she'll grab two different kind of shapes (like a circle and a square for example) and she'll put one in each hand and say, "Desmond, grab the circle". At first he really struggled even getting the concept that he was supposed to grab a shape out of her hand. They did a TON of hand over hand, meaning she would grab Desmond's hand and get him to grab the circle and then he would proceed to put it in the pot. Once he mastered grabbing the shape from her it was just a matter of repetition. Over and over and over she would grab two different shapes and try to teach him which shape was what (of course all of this is being positively reinforced if he does get it right, by a treat or a snack). Last week Lacey came out of their session and said, "Ok, you've got to come and see this!!" I came in and she explains that the last few sessions he's been consistently grabbing the shape she asks for. Sure enough, I saw it with my own eyes!! She would put one shape in each hand and say, "Desmond, grab the circle". He then grabbed the circle from her hand and put it in the pot. There were about 8 different shapes and by gum he got them all!!! I was SO PROUD!! Desmond still isn't talking so it's hard to check for understanding, but from what he's showing us he's understanding!! More importantly, he's showing us that he is learning and understanding what we're saying. For the longest time we weren't even sure if he was going to be able to understand us, follow commands, or learn because he wasn't showing any signs that he was understanding. Now we know that he is learning, understanding, and imitating!! To some this would be a very normal and simple thing that I'm sure their child has been doing for ages. For us this is HUGE!! He may be 2 and a half and SUPER BEHIND in all areas of his development, but these little steps are ENORMOUSLY AMAZING for his own personal development. In the words of President Donald Trump, "This is YUUUGE!!"
ANIMALS: Similar to what Lacey has been doing with his shapes, she has been doing with animals. Desmond has this barn animal puzzle that she's been using to try and teach him some animals. She'll grab two puzzle pieces and do the same thing she does with the shape game. She'll put one in each hand and say, "Desmond, grab the cow" and then try to get him to grab the right one and then put it in the right spot. For months and months she's been doing this. The day she had me come in to the session she mentioned that she felt like he was mastering the shapes but that the animals needed a little work. So that night I decided to see how much he knew. I grabbed a chicken and a goat and said, "Desmond, grab the goat". I kid you not, he said "Oat." and then proceeded to grab the goat from my hand and put it in the puzzle. So not only did he grab the right animal....HE SAID OAT!!!! I will say this about Desmond's autism. There are moments, just little moments when it's like Desmond doesn't have autism and he's here with us. This was one of those moments for me. It was like his autism was gone for just a moment, and my Desmond was totally there with me. Does that make sense? It's like his autism makes it so there are parts of himself that are constantly hiding. We never really see him at his 100%. But there are moments where we get glimpses of his 100%. I feel like we are getting to see more and more of him lately. It's been amazing!
WAVING: Family members, and I guess those of you who are following my blog know that a little after Desmond's birthday he had his big regression. There were things, little cute tricks, he used to do that he just stopped doing. One of those cute little tricks was waving. Desmond was totally waving "bye bye" and "hello" at 9 months old. This is one of the things he just stopped doing shortly after his 1st birthday. I remember thinking it was weird that he wouldn't wave "bye bye" when we left my Mom's house, or wave "Hello" when Marshall got home. Little did I know that it was his autism that was causing it. We got Desmond into an early intervention program at 15 months old and then diagnosed at 20 months old. We caught it really quickly, but in that short amount of time from his 1st birthday to 15 months and then 20 months he lost his ability to do so many things. Once he got assigned to Rachel for ABA the very first thing she started working on was waving. So for the past 9 months (9 MONTHS!!!!) Monday-Friday many times throughout the day Rachel, Me, and now Lacey have been trying to get this kid to wave again. There were times where I honestly thought, "Why are we doing this? We do this every single day. We can't even get him to look at us, why are we trying to get him to wave? He's never going to do it." However, those days have added up and now we are starting to see the fruits of our labors. On Saturday we were at a wedding reception with Marshall's parents. Marshall and his parents were all talking with someone and out of no where Desmond starts to wave at Marshall's dad Brad. I internally start FREAKING OUT!! So I put him on my lap and said, "Hi Desmond!" and started waving at him. And what does he do?! He waves at his Momma. I probably would have burst into tears if I wasn't surrounded by strangers. I had not seen my sweet boy wave since he was a year old. It's been a YEAR AND  HALF!! A whole year and a half trying to get Desmond to do something he had lost in his regression.  I would also like to note that earlier this week Desmond started clapping on his own for us as well. (That was another thing he lost was clapping on his own.)

Like I said, these are all pretty little things that most 9 month olds have down cold. But for our Desmond these things are amazing steps in the right direction. It's not that he's doing "cute tricks" that makes this all so amazing. It's that he's finally starting to show us that he is capable of imitation. He's getting that if someone waves at him, he should wave back. He's getting that if someone claps their hands, he should clap his hands too. He's getting that if we say "Grab the cirlce" that he should grab the circle. I don't think anyone can understand how important imitation is for a child's development until you have one who doesn't imitate, and that is what our Desmond lost in his regression; his ability to imitate. He is now showing us that he can imitate, which means he is understanding, which means he can LEARN!! And what things can he start learning? For starters, we're hoping he'll start learning to talk. From what we've been told the better he is at imitating the chances that he'll be able to talk increase exponentially.

Moral of this big post: Desmond is finally playing the Imitation Game (well our version of the Imitation Game 😉) As he continues to practice, continues to play, we will see that he gets better and better at imitating. We are over the moon happy with all these huge miracles we're seeing. We are so blessed to see miracles in our daily life. We are so hopeful that there will be more miracles to report soon!

Rough Night

There are a lot of things that are hard when your child has Autism. Last night was one of those kind of nights for me. We had a rough night last night. Desmond was up about every hour crying, upset, and inconsolable. With any kind of normal 2.5 year old, I assume, you could go into their room say, "What's wrong?" and they then could express what was wrong and then you, as a parent, can fix it. I then imagine that you'd hug them and kiss them better. It seems with normal children they love that! They love being held and being told that everything is going to be alright. 

That is not our reality.

This is not what we got last night.

It started around 2:00 am, Desmond is full blown upset. I go in there, touch his sweet face, ask, "Desmond what's wrong?" He instantly pulls away from me, like my touch had hurt him. So I touch his legs and this seems to make him even more upset. I start rubbing his belly (sometimes this helps him to calm down), nope that was bad too. In my mind I think, "Okay, consoling him with touch isn't going to work." This is a red flag for me. If he is in a place where he doesn't want to be touched then there is not going to be much I can do to help him to regulate. So I decided to stay in his room. In my mind I thought, "Maybe I can just be a supportive presence. Maybe that will work." Nope. Even being in his room was a no go. It seemed like everything in my arsenal of "Motherly Instincts" was totally and completely wrong. I felt so helpless, so useless, so horribly inadequate. I tried Sesame Street, I tried his swing, I tried spinning him around, I tried everything, nothing worked.

Marshall comes in and suggests we leave Desmond alone, give him a break. Not one of my best moments, I over react and got mad. Pregnancy does not bring the best out of me in these moments. In my mind, "I was only trying to help." "I was just trying to be his Mom, just trying to make things better for him." The one person, my partner in crime, was just trying to help and I made it worse. It didn't take too long for me to go back in our room, apologize for taking my feelings out on him, and then expressing how I was really feeling. Eventually Desmond did regulate himself, eventually he did fall back asleep. Even though he was up about every hour after that we chose to let him regulate himself. This seemed to be the right thing to do. Every time I went in there it just made things worse.

Being an autism mom really sucks sometimes.

Last night was hard because I wanted so desperately to mother my sweet boy. I wanted so desperately to just have something normal. I wanted to be the one to make things better. I wanted to be the one to console him, hug him, kiss him. I wanted to do all the things that my own mother did for me to make me feel better when things got hard. I wanted to be able to talk things out with him, wipe away his tears, and fix whatever was bothering him. I wanted all of this so desperately last night. Alas, this is not going to be my lot in life. This is not going to be my reality.

So what's the positive outlook? What's the silver lining? This time, I don't have one. I think the only thing I do have is that it's okay that I don't have it all figured out. It's okay that I don't feel like a good mom sometimes. It's okay to feel inadequate, useless, and helpless in these moments. It's okay to have bad nights. It's okay to have bad days. I think that's just the nature of the beast. Autism is a beast! It makes it so my sweet boy can't communicate his needs, his feelings, can't control all the sensory input around him. It makes life tough on him especially. Last night was one rough night, and I'm sure there will be more to come. My hope is that when these nights come I'll be able to handle them A LOT better then I did last night!

Miracle Worker

It's amazing to me how much can happen in the span of 3 weeks. We have seen some pretty major steps in the right direction and we owe it all to our new ABA therapist Lacey. She is a miracle worker! She really is! We have seen such improvement in our Desmond since she's been coming to our home.
Here are a few things we've been seeing these past few weeks in Desmond since the last update:

Talking: The past 3 weeks it seems like Desmond has been a lot more vocal! He's still mostly baby babbling, but he's added some new noises. He's added the "S" sound and the "H" sound lately. It's so funny because when he babbles that way it really sounds like he's a snake or speaking Parseltounge (the snake language in Harry Potter). "Hasha-Hassa" is an example of the parseltounge he speaks ha! I need to catch him doing it on video because it is seriously so adorable when he does it!
In ABA Lacey has specifically been working on Desmond vocalizing for the things he needs or wants; which is amazing because it's starting to pay off. This past week she's been able to get him to say "ma" for more, "swa" for swing, and "up" for when he wants to get in his swing. As the weeks go on we're starting to see him verbalize more consistantly!! It's very exciting! We're trying to keep our hopes realistic all the same. It seems that we're heading in the right direction when it comes to Desmond's speech and we couldn't be happier.
Imitation: We have also seen some pretty exciting things from our Desmond in the imitation area too. He is consistently giving us and others "high five"! It's so fun to see him doing this not just with us, but with family too. In our experience he usually does these tricks in ABA for about a month before we see them at home, then about a month of him doing it at home and he'll start showing others like family. Lacey has told us that in his sessions he's started clapping on his own and waving on his own! We are hopeful that with some time we will start seeing this at home and with more time he will start sharing these tricks with others.

From what Lacey has told us his sessions have been going really well and that he seems to be getting better and better everyday! Of course, some days are better than others, but over all we are seeing steps forward! We truly credit all of this amazing work to Lacey. What would we do without her? She has been such a huge blessing in our lives. She's only been with us for about a month and we're already seeing so much growth in our Desmond. We can't wait to see what future months look like with her!

#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!

The Ramblings of this Autism Mommy

Call it what you will, ramblings, worries, pregnancy brain, whatever; this Autism Mommy has got to get it off her chest.

I've always found such comfort in writing my feelings down; whether on paper or in a word document. Writing in a journal has always been a big part of my life. I've written books and books filled with my thoughts and feelings over the years. One of the biggest reasons I even started this blog was to have a safe place that I could put my thoughts and feelings out in the universe, and hopefully off of my mind. Today is the day where I've got to write some of my worries down in hopes that they'll ease my heart.

I have such a love hate relationship with the internet when it comes to the world of Autism. Today was the first day that I actually sat down and read the recent studies on 'Siblings with Autism'. Now that we're having a boy it makes this subject all too real for me. I don't know what it is about today, but it just hit me like a brick that we have a very good chance of having a second ASD child, especially since we're having a boy. All the research I did today had a consistent percentage; 26%. We have a 26% chance of our boy having Autism, and we are at an increased risk because our first born has Autism.
There are so many feelings I have knowing this; fear, guilt, anxiety, stress, frustration, anger, pressure, responsibility, mostly fear and guilt. Fear of the unknown is a real thing. We have no idea if this little boy kicking me all day has autism. Will he develop it in the womb? Do we have the genetic markers? Or is it environmental? Is there something I'm doing, eating, using right now that is giving our little boy autism right now? Why isn't there a specific reason for what causes Autism? Why do I feel so entitled to these answers? Then there's the guilt. I do feel guilty that I don't want another child with Autism, and I know I shouldn't feel that way. I love our sweet Desmond just the same with or without autism. I love him so much and would do anything for him, but then there's the guilt that I wish more for him. What is he going to be like when he gets close to pre-school and then kindergarten age? Are we doing everything we can to help him beat the odds? Is all the therapy we're doing going to be enough? But why am I so intent on trying to make him into something he just might not be capable of? Will this be the same for our next son?

So much worry. So much fear. So many unanswered questions. 

What now?

Right now my answer is to keep on keepin' on. Right now I am going to put my boy to bed and hope that he sleeps through the night. I'll pick up the house since it's easier to clean when you don't have a toddler messing things up as you go. I'm going to snuggle up to my hubby and hope that I can get some sleep too. I'll lie in bed still in hopes that our little boy will kick me and punch me good, letting me know he's there and loves me too. I'll do all of this because that's all I can do. All I can do is to do my best in the area's of my life I can control. I can control my choices, I can control my attitude, I can control the type of person I'm trying to be.  In a sea of uncertainty all  I can do is my best and try to except that my best is enough. I love my husband, I love my Desmond, I love this sweet boy in my belly, I love them all more than I could ever try to describe. 

Now I will go put my Desmond to sleep. I will sing him his favorite song 'Twinkle, Twinkle, Little Star"....

Twinkle, Twinkle, Little Star

How I wonder what you are.

Up above the world so high,

Like a diamond in the sky.

Twinkle, Twinkle, Little Star,

How I wonder what you are.

How I wonder what you are my little boy...

ABA, Wherefore Art Thou ABA?!

Things over here have been a little off schedule. We had our new therapist Lynsee here last week for 3 sessions, but then last week Ericka (our Autism adviser (of sorts)) let us know that Lynsee felt like being an ABA therapist wasn't the right fit for her....yeeeeaaahhh.
These are my frustrations:
1- Did we scare her off?! Was there something I said? Was there something that Desmond did? Why?!? I mean don't get me wrong, the sessions we had with her were a bit rough. Des kept running out and not wanting to interact with her. So maybe that scared her off?
2- We were then told that we could have a substitute come and do Desmond's sessions, but that in the long run it would be better for Desmond to have someone who is going to be sticking around. So we decided that we would go that course and wait for someone to get trained. Now it's the waiting game. Desmond hasn't had any ABA therapy for over a week. Don't get me wrong, the break has been nice. I do worry though when he doesn't have these sessions he desperately needs.
3- How long are we going to be waiting for?
Luckily our OT and speech therapist are GREAT! We told them a few of our frustrations about our situation and they told us that it's pretty normal for ABA therapists to have high turn over. Our chances of having a consistent ABA therapist is going to be slim. This was good information for me to know because I assumed that whoever would be coming to our home would be the same person for years to come.
Moral of the story, ABA is on hold for the unknown future. I'm trying to focus on the positives through this frustrating turn of events.
1- I don't have to worry about my house being super clean.
2- Desmond gets some free time in the mornings, which means I get free time too.
3- Heavenly Father is aware of our life, our situation, and our frustrations. It will all work out in the end.
That's what I keep coming to, it will all work out in the end. Whatever that end may be, it will be okay. So now we wait, we wait to see who will be the next person to come into our home. We pray this person will be the perfect fit for our Des!

March Updates

We've had some changes here on the moon! One being we finally officially announced a little secret we've been keeping-

We are expecting another boy in our little family this August! I am totally out numbered and couldn't be happier about it! We do realize that with this news comes some worries. We were told at our appointment the "statistics" we have on possibly having another child with autism. Our chances would have been significantly lower if we were having a girl. Now that we know we're having a boy we have a 1 in 3 chance that this little boy might have autism too. Yes, the numbers aren't great, but we're hopeful. The one positive we can take from this is: We are more prepared this time around. We know the warning signs, we know what to look for, the moment we see anything remotely looking like autism we can catch it even sooner. My attitude on "the numbers" is, we'll cross that bridge if/when we get there. I'm not going to lose sleep over something that "might happen". If it happens, then we can start worrying about it. Until then, I'm only going to lose sleep over this massive belly I'm growing.

As for our first little boy, he's doing great! Growing and growing and growing!! Our little boy isn't so little anymore! He may have just turned 2 but he is in 3T clothes and 4T pajamas!!! He is our tall husky boy! He still loves Sesame Street, snacks, and chicken nuggets. Trying new foods is still a challenge, but we're hoping this will turn around in the future.
His therapy life is much the same, expect for ABA. Desmond's ABA therapist Rachel has had some health problems and has chosen to be at home to focus on her health. This means we had to say goodbye to Rachel this week, but got to say hello to Lynsee. Lynsee is Desmond's new therapist and she is great. This week was a struggle for Desmond though. Change is hard, but we're hopeful that he'll be able to adjust to having Lynsee here.
Another change in the ABA world is that Desmond is now doing ABA full time. He has ABA for 3 hours Monday-Friday. Desmond is still doing an hour of speech and OT each week as well. So grand total, Desmond is doing 17 hours of therapy every week. We are a busy bunch over here!!
Speech and OT have been going really well lately. Desmond had a really great speech session this past week. We are still really pushing for him to vocalize what he wants. In this session he was able to consistently vocalize when he wanted something. Greg uses food quite a bit to keep Desmond motivated. For example, Greg will show Desmond a cracker and Desmond can't have it unless he vocalizes for it. It takes some time for Desmond to understand that he needs to vocalize, but once he gets it he starts vocalizing. Once he vocalizes something Greg will hand the cracker to Desmond, reinforcing the objective "You vocalize, you get what you want". Again, the end goal is getting Desmond to understand that his voice has power, meaning, and purpose.
OT is going really great too. In the beginning Desmond didn't seem to show much interest in any of the toys or gym equipment. He wouldn't laugh, smile, or show any kind of indication that he was having a good time. This past sessions he was laughing, smiling, showing a lot more emotion. I know this probably doesn't seem like a big deal, but for us it is a BIG DEAL. Desmond's autism doesn't allow him to show much emotion. At home and in these sessions we have been seeing a lot more of his fun personality because he IS laughing more,smiling more, playing more, interacting more!

Even though there seems to be so much change going on over here, we have much to be grateful for. I'm so grateful that Desmond gets a little brother. In my heart of hearts I hope this next one doesn't have autism. I think what Desmond is going to need so desperately in the future is a friend; a little boy who will love him unconditionally. What better friend can one have than a sibling. I was lucky enough to be a little sister to my older sister Jillian. I know from personal experience how amazing it can be to have a sibling that is your best friend. I'm hoping that Desmond will have a similar relationship with his little brother that I had with my Jillie. I hope this little boy can be a support to Desmond and be that little unconditional friend he will need in the future. We are thrilled to be growing our family and can't wait to meet this little guy!

Wedding Bells

We had a great weekend! My brother got married to his one true love! It was seriously such a special day. They were married in the St. George, Utah LDS temple. The sealing was one of the most spiritual sealings I've been to. The spirit was so strong in that room. I think my favorite part was that all of my siblings (minus the youngest 2) got to be there. All my favorite people in one room, there to support and celebrate Mckay and his sweet bride Kayla.
I am constantly reminded of how well Desmond seems to be doing lately. He was great this weekend for the wedding. He did great at the luncheon and lasted for at least half of the reception. He used to get so overwhelmed around strangers and especially in crowds. This weekend he seemed to be more at ease. Marshall got some pretty awesome pictures of Desmond at the reception and I was able to catch a few good ones too.

I caught such a sweet moment in this picture! Desmond reached over and held Marshall's hand all on his own. So cute!!

Desmond's favorite thing to do, run around everywhere!

As for an update on all of Desmond's therapy...I would say, same old-same old. I don't really have anything new or exciting to report. We are still working on imitation, vocalization, and checking for understanding. I will say this, my sweet Desmond has been pretty cuddly lately! There will be times throughout the day that he'll just come and sit on my lap.
Recently we transitioned Desmond from his crib to a toddler bed. It has gone surprisingly well! I thought for sure it would take him some serious time to adjust, but it only took him a few days to adjust! We are so lucky to have our sweet boy in our home. He continues to amaze us everyday!

Zombie Apocalypse

We are all a bunch of Zombies over here on the moon. Desmond is teething his last molars (Dun, dun, duuuun). Because of this NONE of us are getting the sleep we need. Last night was the worst so far, which has officially turned us all into Zombies. We are crossing our fingers in hopes that tonight will be better!!

Our Little Zombie

Oh, if only he was sleeping like this through the night!!!

We have had a few neat experiences this week and there was one specifically that I wanted to share. We were up at my in-laws for Sunday dinner and it was getting towards the end of the night and Des really wanted to go home. He kept tugging at me, whining, taking me to the stairs, all of his little indicators that he wants to go home. We've really been trying to get him to verbally ask for what he wants, really any kind of babbling will do (since he doesn't speak any words). I was sitting on the couch and I kept telling him "Desmond, we can go home if you ask! Say bye, bye" I kept saying this over and over and over for a solid 15 minutes. I mean I would have taken any kind of verbal response; ma-ma, da-da, na-na, those are his typical noises. I kept at it though, trying to get him to say anything. Finally he came up to me, looked at me and whispered, "ba-ba". Whether it was an intentional effort to say "bye-bye" or not I said, "Good job Des! We can absolutely go bye-bye!!!"  I grabbed all of our stuff, told everyone we had to go now and that I'd explain later why we had to go so suddenly! It was really amazing! Like I said, whether it was a total flook or whether he was intentionally saying "bye-bye", whatever it was we'll take it for what it is! VICTORY!!

We have had some great therapy sessions this week too. Desmond seems to be doing more things on his own during ABA. His speech sessions seems to be more productive. Usually we sit in on Desmond's speech sessions, but the last 2 times we've sat outside and I think this has made all the difference. He seems to be able to focus better when we're not in there. Over all we are happy with how these past 2 weeks have been for our Desmond...minus the fact that he might be going from Zombie to full blown Vampire....Oh I hope he sleeps tonight!! We are definitely celebrating the little victories we see with our sweet boy. Progress is progress, and we will take it!

Back in the Saddle Again

Desmond is officially off his little "therapy break" and is back in the therapy saddle! We started back up on Monday with a bang! It was definitely a Manic Monday. Our Monday went like this:

9:00-12:00 ABA with Rachel

12:00-1:00 Lunch

1:00-3:00 Nap Time for Des and ME

4:00-6:00 OT and Speech Therapy

Needless to say, Monday was a long day for this Momma. Desmond did great though! He made it through the day with no meltdowns and no tears! That is a win in my book!

ABA:  ABA has been going well these past few days. Des has been doing good transitioning to 3 hours Monday-Wednesday. They split up his session into two parts; 9-10:30, take a little break, and then back at it until noon. We are still working on imitation. Imitation is the key to getting Des into our world. So they do a lot of Rachel showing Des how to do something and then his job is to imitate what he has been shown to do. This can be done with toys, with signing, with gesturing, really anything. Rachel told us today that Desmond still has a long way to go in this area. Of course we're seeing improvements, but in the area of imitation Desmond is still VERY behind. What I get from this is, we're doing exactly what we're supposed to be doing...it's just going to take time. As he gets going, doing more and more ABA (The end game is to get him able to do 3 hours Monday-Friday) we will see more progress. However, with the positive outcome is always that lurking "other outcome". When all is said and done....we have NO IDEA (yet) how severe his Autism is and where he will lie on the spectrum. I take heart in the fact that for now, we're doing all we can do and that is enough.

OT:  In the world of Occupational Therapy, Desmond rocks! OT is still a lot of getting Desmond to move in extreme ways. We are still doing a lot of swinging (that would make any normal human being vomit!), messy play, spinning, running around, going up and down stairs, all of it. Desmond LOVES OT!! I mean who wouldn't just love getting to play in a giant gym for a whole hour? I think Desmond loves OT so much because he gets to just play. Nothing is really required of him like in ABA and Speech, which requires a little work on his part.

SPEECH: Out of the 3 I feel we see Desmond struggle the most in speech. I think the reason for this is because speech is his biggest deficit with imitation closely behind. Desmond is still in the 6-9 month range for his language. In therapy our approach has changed a bit. Last year we focused a lot on teaching Desmond sign language and getting him to imitate/use those signs. We have seen miracles in this area. There are a handful of signs that we use to communicate with Des, but he continues to struggle with being the first to initiate those signs without being prompted first. We know he knows them, but he doesn't use them on his own. For this reason, we're making some changes to his therapy sessions. We'll still use and teach Desmond sign language, but we're switching our focus from sign language to verbal communication. This means that we're going to be doing a lot of what we do in ABA, but put that towards language. Let me explain better! In ABA (I think I've said this before) the basis of what they do is reward and reinforcement based. It's a horrible analogy, but it's much like training a pet. Using Desmond as an example in his session on Monday: Our therapist would give Desmond a treat (veggie straw) every time he used any kind of vocalization to show that he wanted a treat. Last year we would use treats (or reinforcers) if he signed for what he wanted. Now we're trying to get Des to understand that if he uses his voice (even if it's just a grunt, moan, cry, gibberish) that he get's what he wants. Just like when you're trying to get your dog to roll over, you give them a little treat when they do to reinforce the "good behavior". I know it's horrible to compare my child to training a dog. I know it is. However, his brain is wired much like an animals brain. So what do we do, we do what works and hope it continues to work.

Moral of the story for this week (at least from this Momma's perspective) we've got a long way to go. And I say this with all the hope I have in my heart. After talking to Rachel today I got a bit of a "reality check", which I think is good. Our Desmond is 2 years old. We have only just started this journey and we are in it for the LONG hall. For today I will celebrate the victories of today and hope for the victories to come. Just because we're behind today doesn't mean we're going to be behind forever. We will continue to move forward. Slowly, but surely, moving forward.

Merry Christmas and a Happy New Year!

Merry Christmas and a Happy New Year everyone! I have been in full blown break mode and have neglected my blog! I'll do my best to remember all the details of our amazing break! It was truly amazing for so many reasons.
Shortly after Desmond's birthday we all got the nasty cold that was going around. I started the sick train, then Desmond hopped on, then Marshall finished our sick train. We were all feeling better around Christmas time though! However we did ring in the New Year sick once again.
Christmas was really great! We spent the morning at our house opening up presents and then went to church with my family. The whole service was Christmas music, it was beautiful. My little sister and her husband were able to sing and it was one of the highlights of my Christmas. After sacrament meeting we went up to Marshall's parents house and spent some time there. We're so lucky to have both grown up in the same area. It makes holidays so great because we get to see everyone. Around dinner time we went back to my parents house for Christmas dinner. It was SO delicious!!
Christmas with Desmond this year I made a mental note to stay off of social media. It's just too hard when you see your friends children who are Desmond's age understanding and experiencing Christmas. It's so hard to explain. I am so happy that they are growing, developing, hitting milestones, it's never been a jealousy thing; I would never want them to not have their normal life. It's just hard when your life isn't that. My hope is that some day the ache will ease in this area for me. I also hope that there will be a day where we can participate in the "magic of Christmas" with Desmond.
I will say this though, when you're child doesn't understand Santa, elves, reindeer, the "magic" part of Christmas, it is a lot easier to focus on the true meaning of Christmas. Christ. I spent most of Christmas thinking about the Savior and His Atonement for me and especially Desmond. Most of my years on this Earth (when it comes to the Atonement), I've mainly focused on the "over coming sin" part of the Atonement. This past year the 2nd part of the Atonement has come to mean more and more to me. Not only did my Savior suffer in the Garden of Gethsemane for the sins of the world, died on the cross, but 3 days later He was resurrected and received His immortal body. As I focused on the birth of our Savior this holiday season, my thoughts constantly returned to this. In this life Desmond may not experience a "typical" mortal experience because of how his temporal brain is wired. However, because of Christ someday my boy will get his immortal body. 

Alma 40:23 "The soul shall be restored to the body, and the body to the soul; yea, and every limb and joint shall be restored to its body; yea, even a hair of the head shall not be lost; but all things shall be restored to their proper and perfect frame."

This is what Christmas meant to me this year and what helped me "endure to the end" of 2016. I think I can speak for Marshall in this area; 2016 was so hard for us. The roller coaster ride of getting to Desmond being diagnosed and then that in turn changing our life forever was so hard. We were so happy to see 2016 go. We are so looking forward to 2017 and what it has to offer. We are well aware that things will stay hard. My life this year will consist of 17+ hours of therapy every week and being Desmond's support in that. I will be a wife, a mother, and I will do my best to help Desmond meet his milestones. I am confident that this year is going to be better because Christ was born and because He lives.

Philippians 4:13 "I can do all things in Christ which strengtheneth me."

Article of Faith 3 "We believe that through the Atonement of Christ, all mankind may be saved, by obedience to the laws and ordinances of the Gospel."

I have so much to hope for and so much to be faithful to because of these promises. If I keep the laws, commandments, and covenants I have made, I am promised that I can do all things. I am promised that my little family will be together forever. I am promised that my little Desmond will get his perfect body. This is the only way I'm able to step out of 2016 and into 2017 ready to take it on. 

The only way is Christ. Here we come 2017!