Happy Birthday Desmond!

We officially have a 2 year old!! I can't believe it! Where have the past 2 years gone? I knew that Desmond would most likely get fussy with all of our family at his little party (which he did) and that he probably wouldn't interact much (which he didn't), but it was nice to at least throw a little party for him and especially our families. They have been so loving and supportive this year. The least we could do is give them some pizza and a brownie!
Desmond's birthday was a little bitter sweet for me. I remember going to my nieces and nephews birthday parties. The 2nd birthday was always so fun because they KNEW it was their birthday! They could hold up their two fingers and show you how old they are, blow out their candles, open their presents, over all be excited for their special day. For Desmond it was just another day. He still isn't understanding much in the language department so we can't explain to him how special December 21st is to us. I kept thinking throughout the day, "Maybe next year." Maybe next year he'll hold up his three fingers to show us he's 3. Maybe next year he'll be able to blow out his candles by himself. Maybe next year he'll be able to open his own presents. Maybe next year we'll be able to tell him why December 21st is so special. Until then, I choose to stay hopeful.
One thing I've learned this year is that when things get hard, sometimes you have to choose to be hopeful, patient, and happy. Man, those things used to come so easy to me! To be fair, they still do for the most part. However, yesterday I definitely had to make the conscious choice to be hopeful. Hopeful for 2017 and the days to come. We have seen so many miracles this year with Desmond's progress and I am hopeful that there will be more to come. Our little Desmond amazes us every single day with the things he is able to do. There is so much good he is doing. He brings so much love into our home. He has the sweetest personality, he is so kind, and is always willing to "give us kisses".

This is a picture of us today. I was sitting on the ground and he came over and sat on my lap. He sat there cuddling with me for a solid 15 minutes. It's moments like that when I start to feel silly for all my worries and stress. I have the sweetest boy who is healthy, happy, and who loves me. That is what matters most; everything else will always be secondary. Always.  Today I feel hopeful. Hopeful for the future, hopeful for our Des, and hopeful that 2017 is going to be the best year yet!

Happy Birthday Desmond! We love you to the moon and back! 

Make It Go!!

We have some more amazing progress here on the moon! We have been working with Desmond on his sign language. He's got the signs for "food" "cup" and "more" pretty much down. We added "go" a few months ago and he FINALLY started signing for "go" on his own! Progress! Here is the video I caught of Des signing "go" the first time:

Because he's signing "go" on his own it means we can start adding in another sign! I think we're going to start pushing "all done". We also had some cards made that have pictures of all the things he does throughout the day; food, drinks, activities, things like that. What they want us to do is to put 2 cards up close to where he can touch one and get him to choose which one he wants. For example, we have a picture of Sesame Street and a picture of his swing. I'll show him the pictures and ask him which one he wants. He's grabbed at the one he wants every time so far! We are still very hopeful that with all of these communication tools combined that our little Des will HOPEFULLY start talking!!

Therapy Update

I just finished up the Thanksgiving post and realized that I hadn't given an update on how all of Desmond's therapy is going! I think the best way to describe how busy our November was is to show you my calendar on my phone.

This is my busy, busy, BUSY life!! Desmond still has ABA with Rachel twice a week, and we've added an hour with Greg (Speech Therapist) and an hour with James (Occupational/Sensory Therapist) once a week. We have seen huge strides since Desmond has started seeing James and Greg back to back once a week. Desmond seems to be signing more for what he wants, his eye contact is better (still not great, but better), and he seems to have more facial expressions too.
What James does with Desmond at each session is getting Des to do a TON of movement. A lot of this is on the swings they have there. Here is a video of what that looks like:

I'm sure you're thinking, "Stop! He's going to make him sick!!" Shockingly, because Desmond's sensory system is low registration he doesn't feel movement like the rest of us do. If anyone of us were to do the same thing we'd feel sick, dizzy, nauseous, but Desmond doesn't feel this. Movement like this is crucial for Desmond's sensory system to "wake up". He is still "in his own little world/head" most of the time. This kind of movement charges his sensory system and get's him out of his world and into ours. I know it sounds crazy, but science proves that this method is legit.
As for his sessions with Greg, we do much of the same thing but incorporate language. This video is of Greg, Marshall, and Desmond doing the same kind of spinning motion, but adding in "more". What they're doing is spinning Des, stopping him, and then getting Des to initiate that he wants to be spun again by signing "more".

We are excited to see what the future holds for Desmond now that he's getting speech and occupational therapy once a week. 

I've said this over and over, but once Desmond turns 2 (in 3 weeks) we will start having Rachel over Monday-Friday for 2 hours for ABA! We are SO excited for this to start! For me it means we are doing EVERYTHING we possibly can for our Desmond. ABA everyday and speech/occupational therapy once a week was what we were strongly encouraged to do when Desmond was diagnosed back in August. Soon enough we will be doing everything in our power to give Desmond the best possible chance to blossom and grow! We have much to look forward to in 2017! I don't let myself future trip often, but I have thought about what 2017 might look like for our little Desmond. How will his signing improve? Do I dare get my hopes up and hope that he might be talking? Will he be able to interact like his cousins do? Oh do I dare hope?!?!?! I have learned through this process that it is crucial that we have hope, but in turn our hope must be logical/reasonable. Again, reason tells us that most likely Desmond won't start talking (if at all) until he's closer to 4-5 years old. Reason tells us that Desmond's progresses will be in little baby steps. Reason tells us that he might never interact like his cousins do.

By small and simple things.

I constantly find myself repeating this phrase. These small and simple things we're doing will add up to something great. Do we know what that great thing will be? No. I mean it would be AMAZING if Desmond in the end started talking. However, I understand that it would be GREAT if we could get him to communicate through sign language or even through pictures on a tablet. Progress is progress, even if in the end it's not what this mother hopes for.

As for now, I am happy and I am content. There is so much good happening for our Desmond in his therapies and in our life. I will say this, "Marshall was right." He knew that we would love this new life, and I can finally say that I am starting to enjoy it. I don't think I quite LOVE all the appointments, that I have to keep my house clean for therapy sessions, and that I still feel so distant from my child sometimes; but I do LOVE those moments when my boy sits next to me on his own accord, when he makes eye contact with me for just a second or two, when he hugs Danny, or when he does his little signs. I truly do LOVE all of that. Most of all, I LOVE my boy. I love my Desmond more than I could every try to articulate, and this, THIS is what keeps me going, keeps me hoping, keeps me afloat here on the moon.

Thanksgiving

Thanksgiving is my all-time favorite holiday. I have such cherished memories of Thanksgiving. We would travel the 8-10 hours (it all depended on how many times we had to stop so Malory could go to the bathroom 😉) to Rose, Idaho to my Grandma & Grandpa Taylor's. You walk in and it smells like home. I'd run in yelling, "We're here! We're here! Grandma we're here!" I'd run for my grandma's arms and be so happy to be in them! It was always so fun to play with my cousins, make our forts in the living room, make-up plays, play mofia, and laugh.
 My grandma makes THE BEST Thanksgiving dinner. I am not exaggerating one bit! My favorite part of the dinner has always been mashed potatoes. I LOVE mashed potatoes! Some of my fondest childhood memories were with my family at grandma's during Thanksgiving. This past weekend I've had some time to reflect on all of these memories and I found myself feeling very grateful.
I have truly felt the spirit of Thanksgiving this year. I have so much to be grateful for! I am first grateful for family. I am so lucky to have SUCH an amazing family. I am also so grateful for Marshall's family. Both sides of our families have been so supportive, loving, and have been such a source of strength for us this year. They have loved us and our sweet Desmond unconditionally. I am so grateful for my Marshall for his love and support. I am grateful for my Desmond. He is the sweetest, kindest, even tempered boy. I am forever grateful that I get to be his mother.
This year we were with the Cox's and it was a blast! I made my grandma's famous yams and my first time making a pie! The meal was AMAZING! I once again ate a LOT of mashed potatoes and was VERY full. Later we played Bingo which was so fun too. There really is nothing like spending time with family and loved ones. Desmond seemed to have a good time! He mostly trotted around, laughed, and seemed to be comfortable! Desmond used to get pretty anxious when we would all gather as a family, but now he seems so comfortable. I credit this to all the therapy, especially ABA. We have noticed such a difference in Desmond and his confidence since starting ABA. He seems to have more facial expressions, laughing, smiling, eye contact, he over all just seems happier! We saw a lot of this this weekend.
Now it's officially Christmas Time!!! I can't wait! However, this means that I will soon have a 2 YEAR OLD! Come the end of December our little Dessy will be 2!! I can't believe it!

Some pictures of our Thanksgiving Weekend

My first attempt at making an apple pie! Let's just say the second one turned out just right 😉

Desmond in his favorite spot at Grandma Cox's.

 Me and Jenna were in charge of doing the centerpieces for the tables this year. They turned out pretty good!

 Me and my main Man!

 I made my Grandma Taylor's famous yams this year for the Cox's. They were DELICIOUS!

 My plate this year! Yes, I ate every bite!

 I caught a really precious moment with Desmond and Danny. Desmond NEVER does this. He never puts his head on your shoulder, let alone a HUG TOO! Danny got the first ever occurrence over the weekend. It was so sweet.

 So Desmond is on the right and his cousin Kellen is on the left. Desmond will be 2 in December and Kellen just turned 5. They are like the same size in this picture! Ha! Our Des is a tank!

And here they are from the front. Adorable!

Angels from Heaven

Things over here on the moon have been harder lately. I mean, it's not like anything drastic happened or like there was some huge change. I think it was just another wave of harder days. We've started hitting the therapy even harder these past few weeks. Desmond was evaluated by his new speech therapist and OT therapist last week. We got the reports back and they weren't great. It's a lot of what we already knew, but again it's hard when professionals are putting labels on what we see everyday. Desmond has a severe speech delay and is borderline nonverbal. As for his OT eval he has severe low registration tendencies. What this means is that in regards to Desmond's development he's behind and needs more interventions, more therapy, and more consistent work. So, this means weekly speech therapy and OT appointments and daily ABA therapy. There is some good news to this! The good news is, that we don't have to wait until Desmond is 2 to start speech and occupational therapy because the insurance will pay for that immediately. We are still waiting for Desmond to turn 2 so he can qualify for 2 hours of ABA everyday. Just one more month of ABA twice a day.

Honestly, all the therapy appointments can be overwhelming for me at times. If I let myself think about it too much I tend to get myself all wound up about it. This happened earlier this week and I didn't get more than 8 hours of sleep total for a few days. It would get to be time to go to bed and it's like my mind would go into hyper-drive and take me to all of my deepest worries and concerns. On my 3rd day of not getting a lot of sleep my house was a mess, I hadn't showered in 2 days (I know...gross.), and I hadn't gotten Des in the bath yet. I heard a knock at the door. I planned on ignoring it because hello, I was still in my PJ's and my house was a mess. My phone starts to ring and it's my mom telling me that her and my dad are at the door. I open the door to my loving parents who had brought me flowers and a listening ear. Marshall knew I hadn't been sleeping and that I was struggling so he got in contact with my mom and sent her to my rescue. They came through the door and I was already in tears expressing my frustrations, fears, complaints, and lack of hope. I had been feeling so overwhelmed and down trodden, focusing on all the things Desmond still wasn't able to do. 

Have I mentioned how wise and in tune with the spirit my Dad is? He looked right at me and said, "Tay, you need to get on your knees and plead with your Heavenly Father to send down angels! You are more than worthy and are entitled to the ministering of angels and the spirit of God in your home and in your heart!" The spirit hit me so hard and told me that my Dad was exactly right! I can call down angels! I can ask for peace and reassurance! I can ask for my Grandpa Orville, my brother Ian, my Grandpa Brown, my Grandma Sylvie, and anyone I needed!! 

My mom told me to get in the shower and that I did. I got out of the shower and my parents had cleaned my house! I am forever grateful for the people in my life who hold me up when I can't bare this all. Thank you Mom and Dad. That little visit meant the world to me and saved me in many ways. Thank you for your light, your love, and your shoulders to cry on. I love you to the moon and back!

Pictures and More!

Here are some of our Des!

These are the new PJs my mom got Desmond! She ordered them from England and they've got London all over them! So CUTE!

His favorite food is still beans and rice!

Dad and Des!

Desmond LOVES climbing all over us. This is a regular thing. We'll be sitting on the couch or like how Marsh is sitting on the ground and Desmond will come right over and crawl on top of us.

These are the beautiful flowers my parents came over with. The candles are ours but I thought they'd look good in the picture ;)

Marshall and I were able to get away for a day for our anniversary! Marshall's family watched Des and we were able to go to Vegas for our first get away without Desmond. It was AWESOME! We had such a great time. We also got tickets to Cirques du Soleli "KA". It was unbelievable! I have seen a few Cirques du Soleli shows, but this was Marshall's first time seeing one. Here's just a few pictures of what the stage looked like before the show started.

Halloween and more!

Happy Halloween from our little Elmo!

Our Pumpkin Patch this year!

We had a wonderful Halloween this year! We went trick-or-treating with Marshall's family, which included pushing Desmond in his little wagon. Desmond is still not talking so me and Marsh took turns saying "trick-or-treat". He's still at that age where he looks little enough that no one asked why he didn't say "trick-or-treat" himself, which I very much appreciated. I'm sure that's what our next Halloween will be, but I'm grateful we could put it off for one more year. After trick-or-treating we went over to my parents house and got to see all of my family in their costumes. Over all, it was a very fun Halloween. I think Des had a good time. He didn't have much candy, but did have lots of his favorite popcorn!

Therapy is still going well, slowly but surely. I've got to keep reminding myself that my little Des isn't even 2 yet. Our chances are good that he probably won't start talking until he's closer to 4-5, if at all. It's hard when you see children Desmond's age, sometimes younger and they're talking, interacting, saying all their animal noises, saying "twick-o-tweet", and Des is still baby babbling. I try no to dwell on it, but come to find out, around holidays it gets a little harder to get these thoughts out of my mind. This weekend has been a great distraction though.

My sister and her sweet family are down for the weekend for her and her husband's birthdays. (Yes they have the same birthday, yes they're adorable!) We were able to go see my other sister in "Oklahoma" and it was wonderful! It's amazing what family time can do to heal this Autism Mom's heart. Tonight we'll be celebrating Jill and Ray's birthday with Durangos! Yum! Desmond will get beans and rice (his all time favorite food!). 

The rest of the weekend will be full of family and fun! My little niece Lyla will be getting blessed tomorrow. My favorite thing in the world is being able to spend time with my family!

I Promise We're Still Here!

I've been blog slacking over here! I usually try to post something at least once a week, but I've missed 2 weeks now! Let me try to get up to speed here:

The weekend of October 7th we went up to my sister Jillian's for her oldest sons baptism. It was such a special weekend. We were able to celebrate Matthew turning 8 and support him in his baptism. His baptism was so sweet. One of the highlights for me was when Matthew was receiving the gift of the Holy Ghost. After the blessing Matthew went around and hugged each and every person in the circle. He has one of the biggest, sweetest, most tender hearts I know. I think we were all in tears by the end of it, I know I was. I blame Jillian for this! We were all singing the closing song, "Families can be Together Forever" and Jillian grabbed my hand. I just started to ball!! I was filled with gratitude for my family and that I get to have them forever.
This particular weekend was full of tender mercies and miracles. I'll share just a couple more moments. The Saturday night of Matthews baptism we were all hanging out downstairs in Jill's basement and Desmond came up to me, out of no where, and did the sign for "food" ALL ON HIS OWN. I freaked out! I said, "Are you signing for food?! Are you hungry?!" and he did it again! I started freaking out even more! "Mom!! He's signing for "food" on his own!!", I yelled. I ran upstairs and grabbed a string cheese, went downstairs and gave Desmond some food!!!!!!!!!!!!!!!!!!!!!!!! Marshall wasn't there, so I called him full of tears telling him the miracle I had just witnessed. This was the first time Desmond had signed something on his own without any help or prompting! It was amazing!
My last story of this weekend was when we were over at my Uncle Wades and Aunt Sue's. My cousin just got home from serving a LDS mission and it was his homecoming. We were all over at their home, hanging out when Desmond started to have a meltdown. I think it was an accumulation of being over stimulated, nap time, and being somewhere unfamiliar. We took him to one of their back rooms so he could have some alone time, but he seemed to be getting more and more wound up. I did what our Occupational Therapist had told me to do.  I started spinning Desmond around. I was making myself sick with how much spinning we were doing, but it worked. Desmond calmed down and we were able to get him in his car seat for the ride home. Even though we had calmed Des down, I was about to have my own meltdown. I could feel the tears coming to my eyes as we finally got him to calm down. I started to feel, "Why Heavenly Father? Why? Why does Desmond have Autism? He can't talk to me and tell me what's wrong. He won't let me hold him, hug him, or comfort him. The only thing that comforts him is spinning and it's making me SICK!" These were just a few of my thoughts as I was trying not to totally come apart in front of my whole extended family and a bunch of strangers. As I finished putting Desmond in his car seat I turn around to go back inside and there is my Uncle Wade. He must have seen the look on my face or something (I can't keep anything from my Uncle Wade!). He came straight over asking if everything was okay. I just started to cry! My Uncle Wade grabbed me in a huge hug and I immediately felt so much better. He was a giant answer to prayer for me that day. All the questions I had been pleading to Heavenly Father in that moment of stress were answered by my Uncle Wade. He told me that everything was going to be okay, that Desmond was sent to me and Marshall for a very specific reason. He told me I was a great mother and that he knew I was doing the best I could. In my moment of desperation, my Heavenly Father sent over my Uncle Wade. I am so grateful for my family, for the gospel, and that I get to be with these amazing people forever. I can't imagine having to go through all of this without my family.

Since that weekend we have had quite a few appointments for Desmond. Most recently he was evaluated for more speech therapy and it went well. The speech therapist said that there are a lot of things that Desmond isn't doing, but that there are a lot of things that he IS doing well. He explained that Desmond's ability to "show" us what he wants is a good sign. For example, if Desmond wants us to fill up his sippy cup, he'll hand it to us. Or if he wants something he'll take our hands and take us to where he wants us to go. He then went on to say that it's important that we teach Desmond the importance of using language to get what he wants or needs. As the session went on, a lot of what he did was trying to get Des to "show" him what he wanted through play. He had a race car set that he was trying to get Desmond to "show" him that he wanted the cars to "go".
We continue to work on Desmond signing for "more", "food", and now "go". Desmond does a good job signing for these things, but is now using the sign for "food" for everything he wants. If we say, "Des do you want more?" he'll do the sign for "food". Things like that. We're now trying to get him to understand that each sign means something different.

Last week we went to this new "all abilities" park with Marshall's family and it was AWESOME! This is us on the train that goes around the park. Des really seemed to like it!

This is something Des has been doing for a while now, but I wanted to put up. Ha! He consistently sleeps like this. Blanket over his face, no Desmond in sight. It's hilarious!

And now, we're up to date!

Miracles on the Moon

Lots of exciting things happening here on the moon people! We had a great week this week! Desmond's ABA therapy went great on Monday, but the highlight of the week for me was when we went to Dr. Arch who is a geneticist here in town. We initially made this appointment back in June, but she is so popular here in southern Utah that she was booked out until October. I now understand why everyone wants to have her evaluate their child for autism because she was amazing!
She started the appointment asking a lot about Desmond's history, what we've been seeing since he turned 1 (His regression, eye contact, speech delay, ABR hearing screening, stimming, all of it!). She then started asking me about mine and Marshall's medical histories and our families histories. For example, how many brothers and sister we had, their medical histories, our parents medical histories, our nieces and nephews medical histories, are there any signs of autism in your family, cancer, genetic disorders, things like this. She was especially interested in my side of the family because my Dad was adopted. She asked if we knew anything about his biological parents or their medical histories. She was also interested in Marshall's sister McKenna. She was diagnosed with leukemia when she was 2. She wants to do some further genetic testing, but we'll come back for that.
It was great to get a geneticist view on autism and how it is linked to our genes. She then proceeded to check Desmond for things like a brain tumor and some genetic diseases that give off signs of autism. She then concluded and ruled out any kind of cancer or genetic disease and started to play with Desmond. Desmond definitely showed his colors. He didn't play with her much, didn't seem interested in the toys either, and kept going to the corner to play with the computer cords. She kept trying to get him to interact, and so did I. She then told me that she too believes that Desmond is autistic.
This kind of news gets easier and easier to hear! Which is a huge relief! She then began to ask how much therapy Des is doing since he was diagnosed in August. I told her that we were only able to do 2 hours of ABA a week because we're having to pay out of pocket for it. She looked at me so confused and expressed her concern that he wasn't getting enough therapy. I then explained to her that our insurance wouldn't cover any ABA until he was 2 and then our policy wouldn't cover any of the Speech Therapy or Occupational Therapy that he needs. She then said, "This is unacceptable! If he doesn't start having ABA every day, Speech therapy once a week, and Occupational therapy once a week this will be detrimental to his development!" She then began the process of helping us appeal our insurance so that everything Desmond needs will be covered.
I left that appointment so grateful for Dr. Arch. She was advocating for us like no one else in the medical field had. Now we're taking the steps to appeal! It was an over all amazing appointment. Of course it's disappointing to have another professional diagnose your child with autism, but this time was different. This time we had someone who cared enough about us and our son to help us get the FULL support and help that he needs.

I also recorded a little miracle for you to watch! 

We've been working really hard to get this little guy to sign for "food" and here it is! He's still mostly imitating me (behind the camera I'm signing for "food" to get him to do it), but at least he's getting it! The end goal with getting Desmond to sign is to get him to do it all by himself. An example of that would be him walking up to me and signing for food, showing that he wants to eat. Little by little we're seeing the fruits of out labors! Miracles are around us everyone, we just have to be able to see them in the smallest of things.

Temple Grandin

We watched the most inspirational movie that has me on cloud 9! It's the story of an autistic woman named Temple Grandin and her road to success. I laughed, I cried, I loved this movie! I ended up watching it twice in the last 2 days! The first time by myself and the second time with Marshall. It's currently on Amazon Prime! If you're reading this now and want to watch an amazing movie, stream "Temple Grandin"!!
This movie gives you the unique opportunity to look through the eyes of someone who is autistic. You get to learn how Temple thinks, feels, and responds to the world around her. If anything, it gave me the opportunity to see the world how our Desmond might be seeing it. It gave me so much hope and courage to push through these difficult times. I had many "favorite parts" in this movie, but I couldn't help but connect with Temple's mother. Her sweet mother never gave up on Temple. Temple's mother kept pushing her to be the best version of herself, and understood that Temple would be different but not LESS. I could go on and on about how much I loved this movie!
It also reassured me that we are on the right path for helping our Des. Even though we don't know what the future holds, we do know that if we keep at it that we will see results. Even if those results mean that, like Temple, Desmond might be socially awkward, might not fit in, but he could talk, and learn, and have a brilliant mind. Like Temple, he could go on to do amazing things to help our world. That is my hope, that is my prayer. I know there might be a lot of things my Desmond might not be capable of, but I hope that he will have a meaningful life. I hope that he will be able to talk, that he'll be able to learn, and contribute to this beautiful world; just like Temple did.

We've had a really great week over all. Desmond is doing so well with his ABA twice a week for an hour. He also had a speech therapy session today that went really well. Kerry (Desmond's Speech Therapist) brought this awesome ball game. It is a game that shoots balls out and Desmond loved it. It gave Kerry the control of how the game was played, so Des had to be the one to initiate by signing for "ball" before she would let him play with it. Of course he got a little frustrated having to initiate each time, but we did get him to sign for "ball". The hope is that with a lot of repetition and positive enforcing that "ball" will stick in his little mind and we'll start seeing him signing for it more. We've also been working on the sign for "food" and "cup". We've seen him sign for "food" a couple of times. Whether it was a flook or not, we'll take it! Also, Desmond seems to be back on his regular sleep schedule! Hallelujah! For most of the month of August Desmond was getting up at weird hours of the night. Now he's back to sleeping through the night, which has been great for me and Marsh!
Over all we have much to be grateful for! We're seeing little improvements here and there. Eye contact, interactions, and little moments where he signs are the highlights of our days. They're few and far between, but they make all our doubts and fears immediately fall away. We celebrate these tiny moments and count them as huge victories! We love our sweet little boy and look forward to the future! Like Temple's mother said; our boy may be different but he is not less. We love him so much and can't wait to see what he is capable of!

 Our Des LOVES beans and rice....

 Oreos...

and playing at the park.

21 Months of Joy

Desmond is 21 today! Well, 21 months old. I woke up today feeling so grateful to have this little guy in my life. He brings so much joy into everything. He has been such a happy boy this week, especially during his ABA sessions. I usually don't participate in his ABA sessions. Des seems to be more distracted if I'm in there with him. I'll be sitting on the couch listening in on what they're doing and out of no where I'll hear laughing or a "Good job Desmond!" Desmond is really growing to love working with Rachel and loves how he gets to "play". He seems to be doing better and better as the days move on.
I can't believe that in 3 months time I will have a 2 year old. Where does the time go? I am forever grateful for my little Desmond. My life is filled to the brim with joy because of him. I sure love you Dessy, to the moon and back!

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!