After Alexis’ diagnosis I think I sat in a world of denial. I hope to discuss some of the emotions I have gone through in the last 2 years of her life towards the end of this blog.
Right now though, I would like to talk about some of the behaviors my little one has that make her who she is. I also want to explain what autism is to us and our family.
Even to this day I will see a specific characteristic in Alexis and it is almost like a light bulb goes off and I think… there it is… thats what it is…”That is autism”.
I think most people have a misconception of what Autism is and even to this day I get a lot of eye rolling from friends and family who either don’t want to accept that she is a child with autism OR they simply don’t believe in it. The amount of times I have personally heard “she just needs more discipline” or “if she acted like that with me; I would put a stop to it real quick” or even “you just spoil her too much”. At one point in my life, even just a few short months ago all the back to the beginning days into her diagnosis; I would simply nod my head and even say “you’re probably right, I do spoil her rotten”. At that time I simply didn’t know enough about autism to come back at them with anything intelligent. To be honest with you I was extremely ignorant to autism and what it actually meant. I believe most of our world is, and that is sad because it is a very common struggle for our kids these days.
In 2014 the CDC released a statistic that identified 1 in 68 children (1 in 42 boys and 1 in 189 girls) as having autism spectrum disorder (ASD). That is an astonishing number of children in our country today who struggle with many of the same things Alexis does.
I think the misconception and the denial most people face is due to the outward appearance and behavior Alexis has. When she has one of her “meltdowns” (that is the term we – along with the school have decided to classify her most emotional times as) it is easy to assume it as a tantrum. I see it all the time, people look at me and roll their eyes, and I hear from their mouths “she needs to get control of her daughter”. What these strangers who know nothing about my daughter and even FAMILY do not see and what no one even sees or feels – is what Alexis is feeling on the inside. certain situations she literally feels pain. Pain from sounds (sensory overload), lights being too loud, Noises piercing her ears and yes, sometimes it’s a melt down due to being unable to work through her frustrations.
The biggest struggle for Alexis currently is being in public and the most common place we are in public is when we go grocery shopping or any type of department store. Alexis has yet to learn when is the appropriate time to act silly, hyper and playful. This is typical of any child 5 years old, but with Alexis – all the lights, all the people, all the different noises and all the different things she looks at completely overwhelm her. I would imagine it is something like a kaleidoscope of figures and something like what I have posted below.
All of the different things she feels, sees and senses become too much for her brain to analyze and the only way she reacts is by making her own type of noises, movements and distractions.
Giving her “the look” which I can easily do to my 9 year old and she instantly stops what she is doing – does not work. She sees my face smiling, sad, angry and it doesn’t connect to her brain to know what emotion I am feeling. To her, every expression on my face is the same. I must talk her through how I’m feeling and explain to her that she cannot act the way she is.
It is so hard for me to pin point all the challenges we have with Alexis because what goes on in our life has become our normal. I would imagine if someone came into our home for longer than a few days in a row, they would certainly be able to point out more specific things, but to list them all for you myself seems impossible. To make it the easiest and not draw out a big explanation, here are a few of the amazing fun, unique and interesting things that make Alexis who she is.
She can become consumed with a particular activity she is doing and drown out the world around her. Typically this happens when she is on her Ipad or when she is playing with her action figures, building blocks, marbles or magnets. It is almost like tunnel vision, she cannot hear or see anything else going on around her, therefore she is consumed with what she is doing and why I think she has such an amazing imagination.
Her biggest reaction she has to every particular situation is laughter and acting silly. Like I stated above, she doesn’t completely understand others emotions by body language or facial expressions so her way of handling this is to act silly, make loud noises and to get very close to the person she is around.
She is extremely loving and affectionate to whom she chooses to be.
School is very challenging for her due to the amount of people she is around, the lights, the noises and the best way for her to release the pain and uncomfortable feelings she is feeling is commonly by moving her legs, arms, whole body, humming, singing and jumping. When she is going through a rough time in her day she has found that making loud screaming noises is a form of comfort.
She has an extremely high tolerance for pain.
She has yet to build any friendship, but we are working on teaching her to play with children instead of parallel to them.
I have found that she has successful transitioned into social situation by mimicking her older sister. More times than not I will see Alexis’ movement mirrored from what I have seen and heard Jaylin (her sister) do. It can be something as simple as putting her hands on her hips when she is mad to saying the same exact thing as Jaylin and following her around as if they were attached at the hip.
Last but not least – she just wants to have friends and be a kid like everyone else.