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!

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!