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!