[Guest Post] Autism Awareness: Different... Not Less

This is For.the.Love's first guest post, and I am SO excited to be able to share it. 

I got my first sister when I was 19 years old. My brother fell in love with Alexandria Davis in 2007, and the rest of us quickly followed suit. I am so blessed to have this woman in my life! Alex is an incredible and loving wife, a remarkably patient and devoted mother, an amazing sister and a true friend.

Since my nephew's diagnosis, Autism Awareness has become very dear to our family. I am so happy to be able to offer my brother and sister-in-law my platform to share their experience. I am so proud of them and their willingness to openly share their new adventure. Nixon is amazing and his Autism makes him even more amazing. We are all so proud of who he is.

I have known about Autism since I was in high school. I remember meeting my Uncle’s best friend and her daughters (one of which has Autism) when I was in 9th grade. That was the first time I really remember hearing about Autism and got to see up close and personal just what Autism looked like. Years later I started babysitting for a family who had a gorgeous little girl who was later diagnosed with Autism. I had seen it, I had read about it in Child Development classes, and I thought I had a pretty good idea of exactly what Autism looked like. What I didn’t realize was how different Autism looks on different people. What I didn’t realize was how vast the Autism Spectrum truly is, and how it affects the whole family, not just the child with Autism. 

Nixon Gregory was born on May 10th 2013. He was chubby, squishy, had a full head of jet black hair, and he was perfect.  It seemed like I was pregnant for half my life, so I was excited and relieved just to have him with us. The day after he was born, we found out he had a pretty severe bacterial infection and had to be placed in the NICU at CHOC (Children’s Hospital Orange County) for 10 days on antibiotics. After the 10 days were up, we got sent home with a perfectly healthy adorable baby boy. 

From the day he was born he was one colicky baby. Most days it felt like the only time he stopped screaming was to eat and sleep. All the tricks in the book would only work temporarily for Nixon, and then he would be back to screaming. Finally around 12 weeks it started to get better, and then he started cutting his first two teeth. It seemed like I would never get rid of the permanent bags under my eyes, and I was right. He was healthy, gaining weight and growing appropriately, and we had moments every day when he would give me a tiny smile or giggle, and it would power me through the rest of the day. I was constantly worried that Nixon wasn’t sitting up, or smiling, or engaging with Jason and I, but all my family and friends would help put my crazy-first-time-mom mind at ease.  

When Nixon was 6 months old he had a developmental check back at CHOC (they do this with all of their NICU babies) and he had some minor developmental delays, but was still on the low end of normal, so they said they weren’t too concerned about it, and gave me some hand outs of developmental milestones from 0-36 months.  I practiced peek-a-boo, getting him to babble at me, or even show interest in toys.  Around 8 months Jason and I really started to wonder about Nixon when he still wasn’t playing with us, still wasn’t making any sound (except giggles and crying), and still wasn’t crawling.  We started researching early signs of Autism around this time, and the biggest “red flag” for Autism is lack of eye contact.  Nixon had, and still has, pretty good eye contact so we weren’t sure if it was Autism, or maybe something else. Maybe we really were just paranoid, first time parents. Maybe it’s something we were doing, or not doing, at home. Maybe if we just practiced peek-a-boo a little more, or did more outside activities. Maybe if we pushed him a little harder, he’d get it. I can’t even count the number of times we have heard, “all children develop differently” or, “boys just take a little longer” and it’s 100% true, but as parents, our gut was saying otherwise, and the word Autism was stuck in the back of our minds all the time.

At 12 months old, I voiced concerns about Nixon’s development to our pediatrician at the time, and she brushed them off, pointing out that Nixon had great eye contact and reminding me that boys typically take longer to start talking than girls and that he was just taking his sweet time with walking. I was frustrated, and again felt like I was just being crazy, so I brushed it off. 

Fast forward to 18 months, I voiced concerns yet again to Nixon’s pediatrician about how the only change in 6 months had been that he was now walking, and babbling “mama.” It didn’t necessarily mean Mom, it was just his general word for everything; food, movie, hold me, etc.  She said that she wasn’t really concerned, but if I was, to make sure to bring this all up at his 18 month developmental check back with CHOC the next week. 

When we got to CHOC, each of the specialists that saw Nixon almost immediately started taking notes, and before I could voice my concerns about Nixon’s development, they were asking me questions and giving me questionnaires to fill out. I knew these questionnaires were Autism screening questions from all of my paranoid research over the last year, but nobody said a word about it. Nobody wanted to drop the "A" bomb.  When his evaluation was over, they told me that Nixon was “severely delayed” in all areas of development. They gave me a packet of numbers to call and referrals to get started on immediately. It seemed like so much to take in all at once. I was upset, overwhelmed by all the information, relieved, and feeling a little defensive. I remember telling my family that I thought that was a harsh judgment since they only saw him for a short time, and that I knew he had delays, but I didn’t think they were "severe" as the doctors were saying.  Part of me was offended that the doctors were telling me that my child was not “perfect,” and part of me was relieved that someone else was concerned about the same things that Jason and I were concerned about. 

The next couple of months are a blur of appointments, 30 page surveys, and so many evaluations.  Since Nixon was “flagged” at such a young age, a surge of services began for him almost right away.  Within a few weeks he was being evaluated for occupational therapy, speach therapy, and behavioral therapy. He started all three maybe a month after he was evaluated, and we never looked back.  

How grateful we are now that he got such early intervention. Within a few months, he was starting to talk, he was able to sit down and attend a task for 1-2 minutes at a time, and his motor skills were slowly beginning to improve. We were so pleased that we were seeing results, and that our boy was coming along so quickly. At the beginning, it was stressful having so many new places to be, not having all the free time in the world to play the way we wanted, go wherever we wanted any time we wanted.  But looking back, those days were somehow easier. Maybe because it seemed like it was just a temporary phase in our lives and that it would eventually end. We thought, maybe Nixon just needed a little jump start with speech and fine motor skills, and we would move on. The thought of Autism was still lingering in the back of our minds, but we didn’t really grasp what it would mean for us.

The last year has been one wild ride. I remember his first behavioral therapy evaluation so clearly.  They observed Nixon and asked me questions for almost two hours, and when it was finally over, they told me that Nixon displayed a lot of “red flag” or “Autistic-like behaviors,” but that being only 19 months old at the time it could really go either way. The Behavioral Therapist told me that in the next year/ year and a half we could see these behaviors completely drop off, but that new ones would likely pop up.  She said that the most characteristic signs of Autism, like lack of eye contact, were not apparent in Nixon, but that other signs were. The results came back 50/50, so we really knew nothing more when we left than we had already known going in. Legally speaking, because Nixon didn’t have an official diagnosis, none of his therapists could say specifically that we were working on some of his “Autistic-like behaviors.” The A-word was this horrible secret that nobody could talk about. They would say things like, “with kids like Nixon…” my personal favorite, or “this is something that we find useful with kids on the spectrum.”  It drove me crazy, but at least we were getting him the help he needed to improve and grow.  We spent over a year in this obnoxious limbo of knowing, but not really knowing. Diagnosis isn’t done until, at least, 2 years old and the rings of fire you have to jump through to get a referral for a specialist who does Autism diagnosis are endless! Not-to-mention the 6-12 month waiting list you get on just to be seen. It was mayhem. But somehow we made it to the pediatric neurologist when Nixon was 2 years and 8 months.

On January 18th 2016 Nixon was diagnosed with Autism Spectrum Disorder, and classified as High Functioning. Jason and I were more than prepared to hear the words, and almost relieved when the words finally came out of the sweet neurologist’s mouth. Something we had known, for what seemed like forever was now official. We had the words, on paper, and we could finally move on, and have a clearer picture of what the future would be like for us. 

High Functioning or Mild Autism can be tricky, because in most ways these people seem so typical, but the struggles they do have can be absolutely crippling. We have heard the sound of shock in people’s voices when we have told them that Nixon has Autism so many times already, and I’m sure it will only continue to happen. We will likely hear, “But he looks/seems so normal” or, “REALLY???” for the rest of our lives. 

Nixon has a combination of symptoms. He has difficulty with loud noises, and he is constantly jumping, spinning, or throwing himself into things to satisfy his sensory needs. He has poor fine motor skills and is very clumsy, but he has an amazing vocabulary and constantly improving communication skills. He even regulates his emotions better than some neurotypical kids his age.

  Autism is so specific to each individual affected by it, and a lot of people have no idea what High Functioning Autism can look like. Unfortunately, a lot of children with High Functioning/ Mild Autism are mistaken for poorly behaved, rude or weird, but there’s a lot more going on than you may see on the outside. 

Autism Awareness month is all about spreading awareness about ALL kinds of Autism. Autism is not a one size fits all diagnosis; it is fluid and ever-changing and, one thing I know for sure, is that Autism can be a beautiful thing too. Nixon’s brain works in the most remarkable ways, ways that typical minds don’t, ways that we may never fully understand, but I know that Nixon will do amazing things. This journey through Autism may be a constant battle, but I wouldn’t change it. 

-Alexandria Garrett

For more information about High Functioning Autism and what it may look like:

 http://www.myaspergerschild.com/2013/04/list-of-symptoms-for-high-functioning.html