7.23.2014

Stockton's Story - Our Autism Adventure

Stockton's Story : 
Our Autism Adventure
     I have been wanting to write down my thoughts and feelings about Stockton for a while now.  I think I am just now ready to share.  Recently, I have had more and more conversations with friends, family, and random people in public asking questions about Stockton and Autism in general.  You guys, it's frustrating.   The newest study shows that  1 IN 68 CHILDREN have Autism.
     I will start with this - "There is no known single cause for autism spectrum disorder, but it is generally accepted that it is caused by abnormalities in brain structure or function. Brain scans show differences in the shape and structure of the brain in children with autism compared to in neurotypical children. Researchers are investigating a number of theories, including the links among heredity, genetics and medical problems." (http://www.autism-society.org/about-autism/causes/ )  NO...vaccines do NOT cause Autism.  No one knows what causes it for sure, at this point in time.  We feel helpless, but hopeful.
The definition for Autism from the Mayo Clinic's website -
     Autism spectrum disorder is a serious neurodevelopmental disorder that impairs a child's ability to communicate and interact with others. It also includes restricted repetitive behaviors, interests and activities. These issues cause significant impairment in social, occupational and other areas of functioning.  Autism spectrum disorder (ASD) is now defined by the American Psychiatric Association's Diagnosis and Statistical Manual of Mental Disorders (DSM-5) as a single disorder that includes disorders that were previously considered separate — autism, Asperger's syndrome, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified. The term "spectrum" in autism spectrum disorder refers to the wide range of symptoms and severity. Although the term "Asperger's syndrome" is no longer in the DSM, some people still use the term, which is generally thought to be at the mild end of autism spectrum disorder.
The number of children diagnosed with autism spectrum disorder is rising. It's not clear whether this is due to better detection and reporting or a real increase in the number of cases, or both.
While there is no cure for autism spectrum disorder, intensive, early treatment can make a big difference in the lives of many children.     
 
     I was absolutely beside myself the other day when we were shopping at Walmart.  Stockton was having a pretty bad tantrum and I could overhear a lady in the next isle trying to "talk" to Stockton (he was with Justin & I had Hayden).  I quickly turned the corner and said, "He has Autism."  The woman, a Walmart employee, turned to me and said, "What's that?"  Are there still people in this world who have no idea what Autism is?  I definitely had no idea how hard it was to have a child with Autism before we had Stockton, but I knew what Autism was.  We are a society that tends to not care too much about issues, diseases, ect - until they directly affect us or someone in our families.  I have thought about making business cards to hand to people when they don't know what Autism is or to give to them if they are so kind to give me a dirty look when my kid is screaming.

Here's just a little example of what happens a lot in our home.  This was tonight - July 22, 2014.  Notice that Stockton has a very hard time, he can't tell us what he wants and even bites his arm.
This is the kind of stuff I never post online because, well, it's embarrassing.  And it hurts me to watch it let alone share it with people I know.  But I'm ready to get real.  This is our life.
https://www.youtube.com/watch?v=B2TuuA5Whg0&feature=youtu.be

     Ok,  I am getting ahead of myself - I have way too many thoughts in my mind.  I will start with when Stockton was born.  We found out our first child was going to be a boy and we were SO excited.  That is an understatement.  We always felt like we were going to have a boy first and we couldn't wait for him to arrive!  I am sure if you look back on this blog, you will see how excited we were - he was going to be the first grandchild on my side and the first grandson on Justin's side.  I had a fairly normal pregnancy,  besides throwing up all the time the first 20 weeks, I really did love being pregnant.  We had waited 3 years before trying to get pregnant and were thrilled when I got pregnant literally 2 weeks after going off of birth control.  We were both working full time and Justin was working on his bachelors at ASU.  The months that went by waiting for his arrival were almost painful, I wanted to be a mom and wanted to hold him in my arms!
On June 2, 2011, after 23 hours of labor and 3 failed epidurals, I was SO glad he arrived! He weighed 7lbs11oz. Read his birth story here - Stockton's Birth Story He made me a mom and I was so in love.
     I had never felt so complete.  But being a new mom, you feel like everything needs to be perfect (or at least I did).  I fed him at the first hungry cry, changed his wet diapers throughout the night so he wouldn't get a diaper rash, and loved showing him off.  Looking back, I feel like he was fairly normal.  He did have jaundice and had to be seen by the doctor every day for his first week of life and be put under the bilirubin lights...but was healthy other than that.  I was loving every minute.  To save on time, let's fast forward.
Here's a video of Stockton around 13 months - 
It is hard to believe that he use to be able to follow a simple command. 
video
     We had an amazing first year with our sweet boy.  He hit every milestone, he walked by 11 months, started talking, and by 18 months he had even used 20 words.  But, as he got older, we started to notice him doing strange things.  He started refusing food.  He had never been a fan of baby food so we went right to fruits and other finger foods...but he started only wanting crunchy foods...and pretty much every food that is unhealthy, he wanted.  He also stopped using his words.  It didn't happen over night, I would say within a few months, but all of the sudden it was like they had disappeared.  He also seemed to stop listening. He started throwing awful tantrums.  I mean throwing himself on the floor and crying for hours and hours...and hours.  Nothing seemed to soothe him.  I remember holding him and taking him for long walks.  He loved/loves being outside constantly.  I tried to always keep him happy, like any mom.  I remember my friends saying how awesome it was that my baby (for his age) would sit and watch a movie.  He would sit by himself and watch movies all day every day if we'd let him.  He also never seemed to have a sense of fear, he has definitely never been afraid of heights!
      He started to become almost obsessive about different things, and paid very close attention to details. For example, he would know when there was a string on his blanket.  He would use his pointer finger to scratch at the crevices on the walls.  He would no longer "listen" to us.  And then there was sleep.  Or the lack thereof....the sleep deprivation may have been the worst.  Stockton didn't sleep through the night until he was 14 months old.  And even when he did sleep through the night, he was going to bed at 1-2am every night.  It takes it's toll.  He went through a biting stage, he still bites himself when he's upset.  He went through a poop stage, he literally dug in his diaper and smeared it everywhere everyday for weeks.  It was rough.  Justin had just started school and I felt helpless.  He was a fun little boy, but man was he hard to handle at times.
          These three pictures make so much sense to me now.  Along with Autism, Stockton has sensory processing disorder and needs constant input.  He is always squishing himself in between the couch cushion pillows or finding a small space to crawl into.  I just always thought he was a super active, kind of quirky little boy.  He LOVED climbing, he had to be going up and down stairs, wedging himself into tiny spaces, and eating dirt all the time.  He was/is obsessed with water and swimming!  I know there was no way for us to know there was something off, because those are also all things that little kids just do.  It's super hard to distinguish what is just being a typical child and what needs attention and help.  An example of his quirkiness was when he would play with a toy phone, he wouldn't use it properly.  He would drop it behind his back.  It was funny, but super weird.  He stopped "playing" with toys and started dropping them off the edges of tables or countertops.  Every toy we bought him became an object to drop.  What else?? He ate dirt like crazy, any time he could get ahold of dirt it was being grinded by his teeth.   He loves popsicles, so so much.  I am sure I will remember more things he did and add them later.
     Here's a video of him at 19 months -
this is around when we first started to notice that things may be off. Stockton at 19 months
     So all of these jumbled thoughts and remembering what life once was and the stages that Stockton went through...what's the point? The point is my perfect baby boy has something wrong with him.  Something that didn't show at birth.  He wasn't like my friends' kids that were all born within a few months of each other.  As he got older, the comparing was becoming harder and harder to ignore, and Justin was the first one to bring up "the word." Autism.  It is disheartening to think that something is wrong with your child.  It would have been much easier to listen to everyone who told us, "he's a boy, boys develop slower than girls..." and "he's your first, he doesn't have any older siblings to follow."  Justin started looking up the signs of Autism online and I will be honest, it scared the crap out of me.  Here is a website that comes up when you google "signs of Autism." http://www.cdc.gov/ncbddd/autism/signs.html Stockton was right on for almost EVERY sign of Autism on the sight we were looking at.  Honestly I did not want to pursue this feeling that he had Autism, maybe he really was just a little strange haha.  He would grow out of it, right? The kicker for me and the main reason why I decided to take him to the pediatrician was because of his lack of eye contact.  That I couldn't ignore.  I would call his name 25 times and not once would he look at me.  I would look at Stockton and just cry.  Why? Why did he have to have something wrong with him? You have so many hopes and dreams for your baby, the unknown future is a scary thing.
     So, what to do? Besides talking to people who have kids with Autism (if you know any), you have to start with the pediatrician.  Summer 2013: I was super nervous about that appointment.  When I called to make the appointment, I remember the receptionist asking me what he was coming in for.  I answered very clearly, "we think he may have Autism."  Gulp.  We certainly HOPED he didn't, but it wouldn't hurt to have him evaluated.  We took him to his appointment and I was in tears explaining to his pediatrician how hard of a child he was.  I just kept saying, "being a mom should not be this hard."  I know being a mom is a hard job, but this kid is SOOO difficult, that and we had already done some research on Autism.  So, to my surprise, the pediatrician just kept telling me that he seemed like a normal kid and to keep an eye on him.  What does that even mean anyhow? I felt happy that he thought he was "normal," but deep down I knew.  I was the one with him all day every day.  I knew.  I am so glad that I decided to push.  I made another appointment maybe a week or two after his first.   Again, I had to "plead" my case...I didn't know what else to do.  I told him again about all of his behaviors and he then said that if I wanted to get him evaluated for Autism that he would need to see a Developmental Pediatrician.  I had never heard of that kind of a doctor but told him that we would like the referral sent.  What is awesome is that they sent the referral right away.  What is NOT awesome, is that the Dr we were referred to at Phoenix Children's Hospital was booked out a year. A YEAR.  What in the world?!?! In the meantime we decided to get in touch with Early Intervention and they evaluated him and started speech therapy and occupational therapy.  They said Early Intervention is key, but it's hard to get some of the services you need until they are diagnosed...which is kind of hard to do when the wait lists are so long, unless you have the money to private pay for a Dr to evaluate and diagnose.  Frustrating.
     Anyways, right after we started Early Intervention we moved to Glendale because Justin was starting dental school.  AND we also found out I was pregnant again.  Excitement for this new baby, but the fear that I wouldn't be able to give Stockton the help and attention he demanded scared me.  One day at a time.  Justin started school and I was left home, more emotional than ever because of the pregnancy, and in a new city where I didn't have many close friends.  Stockton continued speech and OT in our home once a week and I continued calling Phoenix Children's every month to try to get him in sooner.  Finally, I got him an appointment! I may or may not have cried on the phone.  And it was 3 months earlier than the "year" mark of when we got the referral.  He saw Dr Trevino in January 2014 and was diagnosed with Autism.  She is an amazing Dr and we are SO lucky that we were able to get Stockton in to see her.  She was very thorough and got down to business.  I don't feel like she left anything out.  I left that appointment feeling completely overwhelmed and depressed.  Happy that he was finally diagnosed, no more, "We think he has Autism."  It was real.
     This was my "to do list" after leaving that appointment : make regular pediatrician appointment for prior auths, obtain genetics ordered blood work, fill out and return GARS questionnaires, call every 2 weeks for follow up appointment (they were booked again for his 6month follow up), schedule Audiology appointment, schedule ST Feeding evaluation, schedule eye exam, schedule dental appointment with special needs pediatric dentist, set up physical therapy eval, email all forms/orders to support coordinator, apply for ALTCS (long term care which provides funding for Respite/Habilitation), apply to Jump Start Program at SARRC.  I was overwhelmed, but determined to do everything.  I had SOOOO much support from family and friends, that was equally as overwhelming.  The countless texts, phone calls, and Facebook messages were heartfelt and everyone's kind words were comforting.  People really do care, they may not fully understand, but they do care.  I remember not wanting to see anyone for a few days, it was like I needed to mourn by myself.  Pajamas were my best friends, and make up wasn't happening.  A few days later, I posted about his diagnosis...although we had know for a long time something wasn't right, it was still hard to swallow.  I decided that I would rather have people know what we were going through, then to try to hold it in and keep it a secret.
Here were my thoughts I wrote down :
This week has been one of ups and downs, happiness, and heartache. I debate posting things so personal to me because I don't want to come off as complaining...but many have asked questions, and we are grateful for all of your love and support. Life isn't meant to be easy. We are sent special spirits to help us learn and grow, and in my case, I believe, to teach me tons of love, patience, and understanding. On Monday, after a long year of waiting to see the developmental pediatrician, Stockton was finally diagnosed with Autism. It hurts to even write that word because it has been such a hard year with him and we now have a "label." I fear for his future, but am hopeful for his future. We are lucky to finally have a diagnosis so that he can get all the additional therapies that will help him in this journey. I do not want Autism to define us, it doesn't. He is still my baby and I will be his advocate. I posted an article a few days ago that a mom wrote about her trials in this life. It was exactly what I needed to hear. She said in regards to her son diagnosed with Autism, "this is not my trial in life, it is his." I am here to help Stockton through this trial in his life and am beyond blessed to have him choose me to be his mom.
Lots and lots of therapy and appointments happened over those next 6 months...and a few weeks ago we were back in Dr Trevino's office for his 6 month follow up.  I beamed talking to her about all of the things I had accomplished.  Almost everything was checked off of Stockton's "to do list" in his binder.  I really pride myself on keeping everything organized.  (I do not know how moms with special needs kids work, it is a full time job.)  We were able to get into SARRC's Jump Start Program, which was amazing.  I highly recommend that program for anyone who's child was recently diagnosed.  They are a wealth of knowledge.  http://www.autismcenter.org
Check out SARRC's website, they are amazing.  I will be forever thankful for people who are passionate about helping those in need, specifically those with special needs kids. 
(6month check up with Dr Trevino)
(Last day of Jump Start
Stockton's sister was born, Hayden Olivia. (she is now 3 months
This is our last picture as a family of 3.  I checked in to the hospital that morning and had Hayden on April 12, 2014.  Stockton has had a hard time adjusting, but overall handled her pretty well.  He basically ignores her, which is better than the alternative.  I think he feels as though she is just in the way.  The only times he gets upset is if he wants Justin to hold him while he is holding Hayden.
     Not going to lie, it breaks my heart that I can't get a good picture of my kids together.  I swoon over other people's kids in the hospital holding their new baby brother or sister...it is THE sweetest thing ever.  I tried taking Stockton to Hayden's newborn shoot but he freaked out anytime I took him near her.  I wish so bad that I could get a good picture of them together.  This is as good as it got in the hospital when he came to visit with my parents.
     This is the cutest.  I had to wait until he fell asleep on the couch late one night to lay Hayden next to Stockton.  Maybe one day he will want to lay by her when he's awake :)  I pray that they will learn and grow together, and hope that they will be good friends.
Where we are today : Summer 2014
Now that Stockton turned 3 and I was able to get him approved for ALTCS, he is able to do speech and OT in clinic.  I really like it, he still has a meltdown every time we get there, but I think he will be able to work through it in time.  Transitions are hard.  We were finally able to get him on a medication to help him sleep.  This has made nights a little easier.  We tried the whole Melatonin route and it just wasn't for us.  It would knock him out pretty quick, but he would be awake a few hours later.  Anyways, we are happy with what he is on now.  He is also starting preschool in a few weeks and I am SO excited for that!  I can not wait to see how much he is able to learn and grow.  As of right now, the only words he says are "Go Go" "Agum" and "MaMaMaMa"
(his first dentist appointment)
      Before, I was always embarrassed to take him anywhere.  He has always had a very hard time going anywhere...screams, throws himself on the ground, and basically just wants to do what he wants to do.  Doctors offices and schools for some reason seem to set him off the most.  He is usually crying from the second we walk into the doctor's office until the second we leave.  Waiting rooms are my WORST nightmare.  But I am learning that this is our kid, it's who he is.  He has Autism and people need to accept that he is not a normal child nor can he "behave" like society thinks kids should be behave in public.  We certainly want these behaviors to get better, which is why we are doing every therapy possible to help him get to a point where he is comfortable in different settings and surroundings.  It is still very difficult to take him anywhere, so one of us usually stays at home with him.  But I am learning to not care what others think.   Those who glare at us need to learn to be compassionate, understanding, and know that we are doing our best.  It is hard with Autism because he physically appears fine.  He looks like a healthy normal child, but is actually very developmentally behind.  Sometimes I refer to him as my 3 year old 9 month old :) He still wears diapers, can not dress or feed himself, and he can not talk or communicate his needs or wants to us.  I'd be frustrated all the time too :/
     If I had time to explain to people in the store, I would.  Try to understand that what we are working on with Stockton is different than a normal child.  For example, we were taught from SARRC to essentially ignore his "bad" behaviors.  When we go grocery shopping and he freaks out and is having a tantrum, we simply have to ignore it.  This is socially unacceptable.  But try to understand that he is not just being a brat, and that if we were to simply remove him from the situation to avoid stares, then we would be backtracking.  He would get what he wants, and in turn will keep throwing himself on the store floor because it works...he would learn that we would remove him every time he does this.  Backwards? Kind of, but it does makes sense and it is just one of the everyday things we have to work on.
     I know we have a long road ahead.  It's a long and slow uphill battle.  One day at a time.  Sometimes I am angry.  Somedays I am completely out of it and don't do much but sit on the couch and try not to think too much.  But I have learned so much from him.  I have learned to be understanding of others.  I have learned that everyone has something in their life that is a struggle for them.  I am trying to learn better patience and acceptance of everyone around me.  I know that things happen for a reason and I know he was sent to us for a reason.  
     One thing that always pops into my head is, "no one understands."  I really feel this way somedays.  Justin gets it, but he's not home all the time.  It has been really helpful for me to realize that there are others who understand what we are going through.  No two situations or children are the same, but other parents with kids on the spectrum do know how you feel.  There are great online support groups, even if all you use them for is to vent.  I never wanted to become a "crazy Autism mom" and have that be all I talk about all the time.  Even though it is my life, I don't think Autism defines us.  Stockton is just my baby who happens to have Autism.  Justin is also constantly reminding me that "All we can do is all we can do."  We do all that we can for him and hope for the best, what else can you do? Heavenly Father hears our prayers and I know he is aware of us.  Stockton is so loved.

     The only advice I really have for others starting on this journey : decide for yourself what you will implement.  You will research so many ideas...and hear them from others.  You need to do x amount of hours of ABA Therapy/Hab every week, you should try this essential oil, you need to try brushing, you need to give them this supplement, you need to have them allergy tested, ect...........and the list goes on.  The therapists are great, but it is YOUR child and YOUR life.  You have to take all of their ideas and weed them out... what will work best for you and your child? What do you believe to be most effective?  Don't let anyone pressure you into feeling like you are doing it wrong or not doing enough.  Your best is enough.  You know your kid better than anyone.  That - and love them unconditionally, obviously.  I need to take my own advice, but try not to get so overwhelmed or stressed out that you don't just play with them.  I want Stockton to still be a kid, I don't want him to be working ALL the time.  So when you see him with his iPad, it's because it makes him happy, and that makes me happy. (Haha, that or I needed to distract him from Justin leaving the house)
     I pray every night that my perfect baby boy will be able to talk to me.  I want to hear his voice.  I want to teach him and have him communicate his thoughts and feelings.  I know that this is a hard trial, but Justin and I both believe that if not in this life, then the next.  We will be able to talk to him and have him talk to us.  We love him so much and are hopeful for the future.  I know how extremely blessed we are that he is healthy.  We are lucky to be his parents and to be able to have children.  There is a LOT to be thankful for.  Thank you so much to all of our family and friends.  We could not do this without you, especially our parents.  You are always there for us and Stockton loves both of his Grandpas just as much, if not more, than he does us. Autism sucks, but Stockton is awesome.  I hope that I can help anyone going through the same trial as we are.  We are looking forward to doing our first Autism walk this fall, love you Stockton Vance.

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