February 6, 2014

But He Looks Normal - Autism Misconceptions

There are stereotypes and misconceptions about everything, and autism is no difference. When most people hear the word autism their first thought is Rain Man. Even I'm guilty of misconceptions because I was uneducated. Since Nikolai's diagnosis we're forced to separate reality from fiction. Even though we're just starting this journey, we've already been met with myths and misconceptions that we've had to set straight. 

Misconception: Are you sure he's autistic? But he looks normal...

There's that word "normal" again. Exactly what do people mean when they say that? Currently there are approximately a little over 7 billion people in the world - how can anybody know what is "normal"? What is autism suppose to look like?  When Nikolai is in any environment such as daycare he looks like every other kid. He acts like every other kid - he plays, runs, draws, naps, and eats [which is his favorite & how I know he's my kid]. At this age even if you spent time with him you probably wouldn't know anything was "off". Autism doesn't have a "look". 

Misconception: So he's like Rain Man?

While it's still early, I highly doubt he is. Sorry I won't be telling you about his special talent that makes him a savant. But don't be mistaken because he's still a rockstar. Every parent thinks their child is a genius, it's in our job description. 

Misconception: Autism is a mental disorder

Autism is a biological illness that affects the brain's growth and the way it develops. Social behavior, communication and restricted and repetitive actions are the three areas that seem most affected. But there has also been studies that show people with autism also have gastro-intestinal problems, allergies, and food sensitivities. So much more can be affected than just the brain. 

Misconception: Autistic kids can't build social relationships

Autism is a spectrum disorder - meaning that there are a wide variety of capabilities. In our situation, Nikolai is able to built social relationships. It might take him a little longer to warm up to people and get involved, but once he does he has no problems. Our current babysitter brings her two kids sometimes and he enjoys playing with them and having them around. He doesn't know how to voice his frustration so sometimes he may hit, but he has social relationships. 

Misconception: Autistic people would rather be alone

False. Autistic people may not know how to approach others, but that doesn't mean they'd rather be alone. Nikolai is capable of entertaining himself in his room while we clean but he's much happier when he's around people to interact with. 

Misconception: Autism prevents people from being able to express or understand emotion

By looking at our expressions Nikolai may not understand what we are feeling (he's still too young to know for sure), but if he sees me crying, he'll bring me tissues, he dances because he knows it makes me happy, and when I get frustrated he senses that too. He has no problem expressing his emotions either. When he's happy he laughs, when he's sad he cries, when he's frustrated he'll throw a tantrum, and when he's mad he'll hit.

There are many more misconceptions out there, and I'm sure we'll run into them. It's important to remember that you can't just bundle autistic people into the same group. They are not all the same. Each person is worth getting to know, because they're oh so very worth it. 

If you've seen one kid with autism - you've seen one kid with autism.

I've realized I really do need a new camera so I can actually take decent pictures!

February 4, 2014

Normal is a dryer setting

Today is day 1. 

As I was getting my sleeping child ready for daycare a feeling of anger came over me. After the boys left the feeling was still with me, and I couldn't figure out why. I became irritated not being able to figure it out. Who was I mad at? God? Nikolai? Vanderbilt staff? My friends who all had "normal" kids? And then the feeling became stronger, but I still couldn't put my finger on it - who was I mad at? 

There are a range of emotions that a person goes through when hearing the diagnosis of Autism. What emotions they are can be as different and broad as the autism spectrum. Yesterday I had blamed myself. What had I done to cause this? Fast food during pregnancy? Vaccinating? My genes? I felt sorry for myself. I felt sorry for Nikolai. Wishing that my child could only be "normal". My baby had a problem that I couldn't fix. I spent yesterday drowning in my self pity. The select few I confided in gave me the automatic responses of "it will be okay", and "there are tons of resources" in attempt to cheer me up. But the majority couldn't relate - they didn't know what I was feeling, they hadn't been in my shoes. Just like I didn't know when I had told those same lines to friends who had kids diagnosed before me. 

Then, as I spent the morning looking through my phone of old videos and pictures I had taken over the past month or two, it dawned on me. My feeling of depression and self pity had turned into anger alright. I was beyond angry, I was pissed off. At myself.

Who was I to feel sorry for myself? I have this amazing child who teaches me something new everyday. He pats my back when I'm sick and cuddles with me to watch movies. Who gives me an unlimited number of kisses (sometimes without me even having to ask!). He runs to me when he's hurt, expecting and knowing that I can make it better. He loves me unconditionally. 

Who was I to feel sorry for Nikolai? Sorry for what reason? Being an amazing kid? Overcoming new obstacles everyday? Learning new skills? Having dance parties to his favorite songs? Being a happy kid? Nikolai doesn't need anybody to feel sorry for him. He doesn't need anybody raining on his parade. He'll be just fine, and if I know my kid probably better than that. 

Who was I to use the word "normal" when describing my kid? Or any kid for that matter. Just as I wouldn't accept society's definition of "beautiful" when it came to women, I wasn't going to accept the term "normal" and make my child feel like there was something wrong with him. 

I realized that my child isn't "broken" - he doesn't need to be fixed. There's nothing wrong with him - he IS normal. He simply needs encouragement and sometimes adjustment to his routines in order to help him be successful. I won't focus on what he can't do but rather what he can

I woke up this morning ashamed at myself. Because while my child has never failed to love me unconditionally, for a brief 15 hours I had failed him. These past 24 hours have been nothing short of a whirlwind. And while it's true - things have and will continue to change, one thing has not. I am my sons voice, biggest supporter, and advocate.

My conclusions: 

  • If I don't understand Autism and educate myself on the matter,  then I can't expect others to.
  • The world "normal" is deleted from my vocabulary, there is no such thing as "normal"
  • Autism does not define anybody, including Nikolai. It is simply a character trait of theirs.
  • I refuse to let Nikolai use his diagnosis as a crutch or excuse for things. My dreams and expectations of him have not changed because of this diagnosis, only the way we might approach and accomplish them.
  • I don't need to protect Nikolai from the world, if anything I need to protect the world from Nikolai. He's a force to be reckoned with and nothing will stop him.
  • Our parenting techniques and approaches might change but our love for him will not.
  • While I dread questions being asked about Autism and Nikolai, questions are better than pretending he doesn't exist - with questions comes education.
  • When he comes storming in from daycare running to give me my hug and kiss, I'll be there with open arms. Never again will I fail him or think there is something wrong with him. My love for him is unconditional.

  • February 3, 2014

    A New Journey

    The Kennedy Center

    Back Story
    In December, I chose to have Nikolai evaluated by early intervention programs. While he understood a lot, his speech was limited to his favorite (and only) word "ow". The first program was EDIS (military's early intervention program) who decided that he might have displayed some signs of autism, but he didn't meet their requirements. The only other program was TSEI  (Tennessee State Early Intervention) and I hoped he would receive services. They were very quick to get his information and schedule a time to come screen him, but once again he didn't qualify. Either a delay of 40% is needed in one area or 25% delay in two areas is needed. The fact that he didn't speak wasn't 40% because he understood directions and words too well. My mind still not put at ease, my pediatrician recommended that I get in touch with a woman who was in charge of The Tadpole Project, and an appointment was set up for Feb 3rd.

    At 7:45am we all hit the road for the 45 minute trip to the Vanderbilt Kennedy Center. Nikolai was in for 3 hours of testing and Mark and I were hoping to finally get some answers. The first part of the process was observing Nikolai's developmental skills - could he copy what they did, did he know how to string a bead, how he played with a ball, and other milestones that are usually met by his peers. While he was doing that we went in another room to complete an interview. As the questions were being asked I found myself hesitant to answer, as if I was subconsciously battling between answering honestly and giving what I thought was the "correct" answers; what would make him "normal". After a short break we all sat in a room while Nikolai once again played, completing tasks that were being scored. As I sat back and watched my brain was in a haze. I couldn't fully complete a thought before the next one started. I watched helplessly as my son was partaking in a test I knew he would "fail". Once play time was done they left to score once again, and we waited for what felt like a lifetime. 

    When the women entered the room again, one began talking. First about his developmental and motor skills, which were currently at a 17/18 month level. From the moment I processed that sentence my heart sank, I knew what was coming next. As she told me that his speech is on a 9 month level I felt my face get hot, and knew that tears I wouldn't be able to stop were streaming down. I only picked up every other word or so as she continued to talk. Nikolai. Qualifies. Autism. But in that moment that was all I needed to hear. They gave us a folder of information I couldn't bring myself to open, and explained that if we wanted to participate in the program they would arrange another day to bring him back and get him assigned to a group. I had went numb long before the end and I simply nodded, thanking them for their time. The 45 minute ride back home was one filled with nonstop tears. The rest of the night a blur, my body and brain automatically completing the rest of the daily routines. And before I know it my brain shuts down, refusing the think anymore.