Monday, August 1, 2016

Our steps to the moon

For my own purposes I wanted to put in detail some of the behaviors we've been seeing from Des that lead us to getting him checked for Autism so that when I do look back on this I can have one of those, "Oh my gosh I forgot he used to do that! He's come so far!" moments. Future me, you're welcome!

Des has always been the easiest baby! He rarely ever cries, has been sleeping through the night since he was 4 weeks old, and has spoiled us rotten with his mellow temperament. Think of your easiest child and times that by 5, that's our sweet Dessy boy. He's so peaceful, sweet, and kind. I never thought that his easy going nature would be bad until his easy going nature turned into not interacting.

I think for me I started noticing his eye contact wasn't great as early as 6-9 months. I'd be changing his diaper, holding him, interacting with him, and I'd try to get his attention...but he always seemed to be focused on something else. I remember while I was feeding him his bottle thinking, "I wonder why he's not looking at me. He must just be in his own little world." This has been a thought  that has crossed my mind over and over again. I didn't really think anything of it because he was meeting all his other milestones; rolling over, crawling, walking. We didn't see a big change until after his first birthday. He was doing all the cute things babies do at his first birthday; saying Momma and Da-da, waving bye-bye, playing patty cake, but then he slowly stopped doing those things and started to regress. The first one I noticed was that he stopped greeting Marshall at the door when he would get home from work. Before his regression he would hear the garage door open, get so happy, and run to the door saying, "Da-Da! Da-Da! Da-Da!" Now it's like he doesn't even notice and it's Marshall who has to come to him and show him he's home. Then he stopped waving bye-bye, and we couldn't get him to play patty-cake with us. At the time I just thought he was going through a phase. Me and Marshall were both working full time, but only needed a babysitter for a few hours every week. I thought, "Maybe he just misses us...? But, some parents have to work full-time all the time. I'm sure it's something he'll grow out of."

One day I remember calling for Desmond and he didn't turn his head to even acknowledge that I was saying his name over and over and over. It crossed my mind that it was weird that he didn't know his own name, but again I found myself thinking, "He's still young, maybe that's something he'll start doing when he's closer to 18 months old." Then he started getting into everything, like 1 year old's do. I would say, "No, no, no, you can't touch that Des." and he wouldn't even look at me. I'd say things like this repeatedly and still nothing.

Trying to get Des to interact with us has always been tough. He'll be sitting playing with his toys and I'll go over to play with him. I'll sit next to him and most of the time he won't look up to see that I'm even there; he'll just keep playing. If he's playing with a puzzles (for instance) I'll put out my hand in front of his face and say something like, "Can I play with one too?" and he'll just keep on his merry way like I'm not even there. Most days I have to grab his hand and get him to hand me things or go over and grab his sweet cheeks to get him to focus on my face. And of course, the initial worry that started this rocket ship to the moon, the speech delay.

For those who don't know, we have a bit of a speech delay history on my side of the family. I didn't talk until I was 3 and my little brother didn't start talking until he was well into being 4. However there are good reasons that we were a bit slow. My older sister was chatty from the very beginning says my sweet mother. She started talking full blown sentences when she was 18 months old. Jillian was my translator for the longest time. Jill would say things like, "Tay-Tay wants a PB&J Mommy" when I was still just jabbering my own baby language. As for my little brother McKay, his story is much the same. He's a twin and my little sister Malory would do all the talking for him. I think the big difference between my situation and Desmond's is the interaction. From what my mom has told me I had my own little language, but I was very playful and interactive. I would point for the things I needed to get my needs met, but our Des doesn't do this. He doesn't point, he doesn't look at the thing you point to him, again he's just in his own little world.

I don't want this to be a, "Oh my poor baby" post, because there are a lot of really great things he is doing. He was recently tested in a lot of different skill areas for his age; things like cognitive skills, language skills, social skills, self help skills, and motor skills. His results were as follows:

  • Language: 9 months old
  • Cognitive: 12 months old
  • Social/Emotional: 12 months old
  • Self Help: 12 months old
  • Motor: 28 months old
  • Fine Motor: 28 months old

My Dessy is the motor skills champion!!! He has always been so coordinated! His ability to crawl, climb, run, throw a ball, use a fork and spoon would put all other kids his age to SHAME! He especially LOVES swimming at Grandmas! The first time we put him in a floatie he was instantly able to float and keep his balance. I was so amazed and so was everyone else there! We were all shocked at how coordinated he was in the pool and we are still amazed by the things he's able to do! We have been working on baby sign language with him for the past 4 months and he's finally signing "more". This past week was a huge victory as he's finally starting to do it on his own.
It would be very easy to get discouraged and focus on all the things he's not doing, but I can't help but rejoice in the good and be grateful for the little steps of progress that we've seen since starting this journey back in March. My focus and goal is to live for today and not worry about tomorrow. Each day we have with Des is a blessing. As my sweet mother would say, "Taylor, don't barrow trouble!" All of these things we are seeing will change, and there is so much good to come. Look out world we're coming for ya! Just one day at a time.

Reporting from the Moon

     I've always loved the saying, "I love you to the moon and back". I had  no idea it came from the children's book "Guess how much I love you" by Sam McBratney until I was serving a LDS mission in the North East of England. At the end of each letter I wrote home I always finished it by writing, "I love you to the moon and back". At the time I really did feel like I was on the moon! You wouldn't think that one would feel that way in England, but I definitely felt like I "wasn't in Kansas anymore". I was thousands of miles away from home, my family, and the SUN! I grew up in the most beautiful place on earth, Saint George Utah. I think for most home is always beautiful, but I'm partial to mine. It has beautiful red rock everywhere so you're most likely to get red sand in your shoes than anything else. However, it is a desert and yes (you guessed it) it gets hotter than Hades here. As you can imagine it was a huge change for me to live in England. Don't get me wrong, it was BEAUTIFUL! Green, wet, humid, and very cold; the complete opposite of Saint George. I guess what I'm getting at is that I never thought I'd miss my home environment when getting ready to serve in England for a year and a half. My time in England were some of the best in my life, but it had to come to an end. In March of 2013 I came back to my home and family. It was like I had never left. My time in England seems like a dream looking back, but it was a time when I grew and changed for the better. My time in England certainly prepared me for my next phase of life. I like to call this phase Marshall.
     Marshall is my husband and the best thing to happen to me. We've been friends since we were 13 years old. Our story is a cute one, but I'll save that story for another day. We were married and shortly there after we got pregnant with our little boy Desmond. Having a child changes you and it changes your life completely! "I love you to the moon and back" never rang truer until the day Des got here. As life does, it has it's ups and downs. Our world turned a bit upside down the day I took Des in for his 15 month well check-up. Our doctor was asking me routine questions and then asked me how many words Des was saying. I kind of laughed a bit and explained that he was barley saying Mom and Dad, if even that. He asked me to explain what I meant. I said something like, "He'll gabber like babies do, do-do, da-da, ma-ma, na-na, but I don't feel like he's calling me Mom or Marshall Dad, I think he's still just babbling." He then asked me if I ever thought Des was deaf. The question kind of surprised me, because I had. I then voiced that I did sometimes because he never responds to his name. I then showed the doctor what I meant. Cute Des was just happily playing with some toys in the room when I said, "Des....Desmond....Dessy...Desmond." I then said, "See! That's weird right?!", thinking that his response would be, "Oh don't worry Taylor, that's completely normal for his age."
                                                                         I was wrong. Very wrong.
     The atmosphere in the room changed, shifted. This is when our doctor started to ask me more and more questions, "Did he pass his infant hearing exam?" "How does he do socially?" "How's his eye contact?" "How does he interact with others?" "When he plays with toys does he do anything odd with them?" I answered them the best I could, but I could feel the worry forming in my gut and quickly moving up to my eyes as I started to tear up. He then explained that we needed to rule out whether he was hearing like he should, and if that was the case we need to be open to the possibility that he might be Autistic.
                                                                                           Autistic.
     It hit me like a ton of bricks. Autistic?! No he can't be, could he? I always figured he was just more like me, I mean I didn't start talking until I was 3! Maybe he's just taking his time? Maybe he really is not hearing like he should? Are you sure he should be talking? This wasn't the end to all the questions and thoughts that still to this day tend to keep me up at night. Our story that we had envisioned for our life came to a close that day, and a new one was just beginning.
    These 4 months since that day have been full of doctor appointments, referrals, interventions, more appointments, and worry. We ruled out his hearing, started working with an Occupational Therapist, but by his 18 month Well Exam we were right where we were at 15 months with more questions, but still no answers. We were then referred to an Autism Specialist. My worries coming true. Things hadn't gotten better, and from what the testing showed, my 18-month-old's language skills were still at 9 months, cognitive skills were still at 12 months, social skills at 12 months. In the blink of an eye our life was changing and it was getting scarier. It was like all of our plans and dreams were gone and now we have to start something completely new. This is when this thought occurred to me:
                                                                                      I'm on the moon.
    This train of logic started to form from an article a friend had me read when we had first been told that Des might be Autistic. The article is called "Welcome to Holland". It's a beautiful article describing how life is when your child has special needs. What I'm about to say next will make a lot more sense if you read it! Here it is:

     I knew that starting soon we would no longer be on the "earth" we had planned for. I knew that now we were heading for the moon. I think everyone, at least once in their life, starts to picture what their life will be like; dreams, hopes, goals, desires, and you start making mental plans on how you make this life a reality. These thoughts especially form when you start your family. You start thinking about family vacations, teaching your son how to fish, hunt, how to throw a ball, how things will be when he starts to play sports, goes to school, all of it. We never thought that our reality would include Autism and it's landed us in a foreign land. We don't speak the language, we don't understand the customs, and the culture....it's so much different than home. The saying, "I love you to the moon and back" has completely changed for me. My love for Desmond has landed me on the moon and the plan was that this love would go back, but it hasn't. We're still on the moon and we might never come back.
     These thoughts lead us to where we are now. Today my little boy, my sweet Des became eligible to start Autism Spectrum Disorder therapy . My baby is Autistic. Which means we have landed on the moon and start our journey in this foreign land. With all this being said, I can't help but feel optimistic, hopeful, and grateful. I'm eternally grateful for my sweet Marshall and the opportunity to start this journey with my partner in crime, my best friend. I'm grateful for family and the support system we have here. I'm grateful to live in a time where my Des has access to all the help and interventions he needs to be successful. I'm hopeful for the future and our adventures on the moon. For all we know we might come back from the moon! The hope is with early intervention therapy and a lot of hard work that Des will be able to blossom, start talking, start interacting, and be all caught up by the time he starts school. However, I know that this might not be our reality. We might have to stay on the moon, and that's okay.
     I find so much peace in knowing that there is a God, I have a Savior, and He has a plan for me, Marshall, and Desmond. I know that He loves me and has given me Desmond for a very specific reason and will prepare a way for our life to be full of love, adventure, happiness, and joy. Just like I felt like I was on the moon when serving my mission in England, I soon with time felt at home and grew to love the home I had created in England. I know this will be the same entering the world of Autism.  For now, I love my sweet boy to the moon and will continue to use this blog as a way to report our findings, adventures, journey, and experiences here in this foreign land of Autism, or as I'll be calling it:
                                                                                               The Moon.