#lightitupblue

Hello Blog!
I am truly sorry to have neglected you! April is Autism Awareness month and I've been trying to keep my social media aware, but have neglected my blog! Autism Speaks has been using the hashtag #lightitupblue to light up awareness to everyone about the ups and downs that Autism brings in hopes to spread more love and understanding to all.
I feel like there has been a lot of change since the last time I posted so I'll try to get it all in here!

ABA: We have a new therapist!! FINALLY! Her name is Lacey and we LOVE HER. Even though it was such a hassle to have lost Rachel, scared Lindsee away, but in the end it was all worth it because Lacey is just the person we need for Desmond. She has been working for the Washington School District as an ABA therapist for children on the spectrum who don't have access to therapy in their own homes. She has a ton of experience working with children on the spectrum. She seems to love Desmond and loves that he is still so young and malleable (did I just use the word malleable in a sentence?! Go me!) The best thing about Lacey is her ability to get Des to "work". There is a lot of structure in ABA and Des doesn't like structure. He doesn't like it when he has to imitate, has to show us that he understands, he prefers to just be in his own little world. She is so patient with him, but also is able to get him to show us that he's understanding more.
Don't get me wrong, getting back into our "scheduled routine" has been a challenge. Change is getting harder and harder. We had 3 solid weeks of no ABA so getting back into sitting in a chair, imitating, working, has been hard on him. He's been pretty resistant, but we are hopeful that in the coming weeks he will get back in the swing of things. To be fair, I need time to get back into our routine too! Those 3 weeks were awesome! It felt like we got a little vacation from the moon for a bit. It was nice that we could just do and be whatever we wanted. No rules, no routine, no structure, just mom and Desmond doing whatever we wanted to do. It was SO nice. But, the party always has to end some time. This momma and Des will just need a few more weeks to get back on track!

Marshall's work schedule: Woof. My wonderful hubby moved into the ICU (he's a nurse, not a patient ha!) and has been working there for almost 2 months! He's been technically "training" and only has 2 more shifts as a trainee! However....these past two weeks he's been working at night...hence the Woof. UGH!! It has been so rough on all of  us! Having him working from 6pm-6am hasn't been the worst part for me. The worst part is that he has to come home and sleep while me and Desmond are awake. Our mornings are spent trying to be as quiet as we can, but also trying to feed him breakfast, bath him, get him ready for ABA, get the house ready for ABA, get myself ready for the day. I will be so glad when he gets back on days and I know he'll be super happy about it as well. He has 2 more shifts of nights and then he'll have 10 weeks of days before he has to go back on nights! Hallelujah!

Speech and OT: I feel like we've been off of our speech and OT groove too. We've had to cancel or reschedule appointments lately because we're either out of town, sick, or one of our therapists is sick. Usually we're good about going every week, but the last month has been pretty hit or miss. I think this has effected Desmond too. In all areas we need to get back into the routine we were in before. I do feel like we've seen some great success in his sessions none the less. Particularly in OT today.

Earlier this week I was able to go up north and spend some time with my best friend and older sister Jillian. It was a MUCH needed break for me from the world of autism. One of the biggest blessings was being around her children. I can't tell you how much I loved just simply talking with them, having a conversation with them, being able to understand what they needed or what they wanted and then being able to help them. I don't get that very often here at home. It was a huge tender mercy for me to be around something "normal". Today in Desmond's OT I brought up some thoughts that I had had over my time with the Durhams. I mentioned that one thing I noticed (and I always notice it when I'm around kids Desmond's age) is how purposeful their play is. Purposeful meaning with intent. For example; Desmond's cousin Lucy is just 4 months older than Des and as they both grow older the gap between their development seems to get bigger and bigger. This of course makes sense because hello, Lucy doesn't have autism and Desmond does. I noticed that her play was very driven with purpose and made sense. Desmond's play doesn't make sense most of the time. Frankly, most of the time he's holding a ball and just running around shaking his head laughing at who knows what. I brought up this concern with James today and asked him on his opinion of Desmond's style of play and if we need to help him have more purposeful play.  His words really calmed my mommy heart and once again gave me the perspective that I need. He said, "Who says Desmond's play isn't purposeful? We have no idea what is going on in Desmond's head. For all we know he has a lot of purpose in his play, but we just aren't able to see it." He encouraged me to keep doing what we're doing. Let Desmond take the lead, let him show us how he wants to be played with, and give him opportunities to simply just be a kid. I get so caught up in the Autism World sometimes that I forget that it's not so important to focus on trying to find understanding in our Desmond. Desmond is not going to be like his other cousins (right now or maybe never). I won't be able to understand him right now like I would my other nieces and nephews...and that's okay! Lack of understanding does not mean that there is no meaning. Just because I can't understand Spanish doesn't mean that the person speaking it isn't telling me something or isn't communicating with me, I just don't understand. In a sense Desmond is communicating to us, but in his own way and that way is not wrong, it's just different. The reality is, this "miscommunication" might be here forever. So who is it that needs to adapt, ME! For some reason the light bulb just switched on for me talking through my concerns with James. In this moment of clarity and even typing it all out right now is bringing even more clarity.

Does any of this sound familiar? Trying to understand something that you can't possibly understand, trying to find answers, trying to find purpose and meaning in something that, in this life, we might never understand, but believing that it is still right, real, and true...?

FAITH

Isn't that what it all boils down to? I have felt today in this moment of clarity that everything we are going to experience with Desmond, I'm not going to fully understand or predict. However, just because I can't see it, understand it, predict it, and sometimes even feel it, does that mean it's not there? NO!! It just means that I've gotta leap. I've got to take that leap of faith not Desmond. It's me who has got to change! It's means that I need to have more faith. I understand that this realization really isn't new. I mean I go on and on about how Desmond's autism has been a trial of faith for me in all areas of my life. I guess the difference is that today I not only feel that faith reaffirmed, I feel hope. I feel that little trickle of, "I think I'm going to get it,  I think I'm starting to understand." and I will hold on to this hope for as long as I can. Today I have the faith that I can adapt and the hope that if I do adapt that I will begin to understand.  So my #lightitupblue moment for today truly is LIGHT. It is a new beam of understanding, a beam of faith, a beam of hope. Today I truly am lighting it up blue!

The Ramblings of this Autism Mommy

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

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

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

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

What now?

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

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

Twinkle, Twinkle, Little Star

How I wonder what you are.

Up above the world so high,

Like a diamond in the sky.

Twinkle, Twinkle, Little Star,

How I wonder what you are.

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

ABA, Wherefore Art Thou ABA?!

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

March Updates

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

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

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

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

Wedding Bells

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

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

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

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

Zombie Apocalypse

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

Our Little Zombie

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

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

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

Back in the Saddle Again

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

9:00-12:00 ABA with Rachel

12:00-1:00 Lunch

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

4:00-6:00 OT and Speech Therapy

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

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

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

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

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