Dear Addie,
This past week we celebrated the last days of yet another Autism Awareness Month. While I’m not sure if “celebrated” is the appropriate term, nevertheless we spent an entire month doing our best to educate others and advocate for you as well as all those in our special needs community for acceptance and awareness.
Now while this month falls but once a year, it realistically is every month for families like ours.
Addie, have you heard, perhaps a time or two, that you have something called a spectrum disorder? Fancy title huh?! This is an umbrella term that “autism” is classified under. Spectrum is really just another way to say “wide range.” Autism can range from affecting people mildly to severely and everywhere in between - hence one of our favorite phrases ”if you've met one person with autism, then you've met one person with autism” no one is the same. Even the varying degrees of autism from mild, moderate, moderately severe, to severe sometimes can get confusing because you can fall in a few different categories, being severe is areas or moderate in others, the overall majority ranking from numerous detailed evaluations and testing give us these results and “titles” if you will.
I never been one for titles just so you know Ad.
Having said that, you my dear are classified as having autism on the severe end of the spectrum. Now you’re probably wondering - what does that even mean?
Well severe autism also has a couple other fancy names like low-functioning autism, classic autism, or profound autism. This classification is really just identifying autistic people with the most significant symptoms.
It’s true we have extraordinary challenges ranging from communication, to sensory difficulties, or even executing the simplest of fine motor tasks on a daily basis. To be honest with you, this week alone left me in tears multiple times and feeling quite guilty for wanting to rush through the day so we could just go to bed and give this life another chance tomorrow.
Addie there’s a lot doesn't get talked about on this journey - including the mental health and well-being of family members in special needs families. It is not unusual for a people with severe autism to require 24/7 supervision, you know so you don’t jump the fence, balance dangerously on the railing of a two-story balcony or jump in a washing machine to splash and play (just to name a few of your favorite Eval Knievel activities.) It is exhausting. Add in a very healthy dose of screaming for reasons we can’t pin point exactly and it can be a lot to deal with.
Therapies, medications, constant adaptation of our environment, research, evaluations, IEP meetings, headphones, sensory calming toys, advice - it's all never-ending.
I saw this picture online recently that said “special needs mom sleep, it’s like regular mom sleep without the sleep” - wildly accurate, especially with kids who have trouble sleeping and like to elope, no matter the hour of day.
More coffee please!
Now with all its challenges, It’s also sprinkled with us bearing witness to some of the most beautiful innocence I've ever seen. You find joy is some of the absolute simplest of things and it’s always a great reminder for our own lives.
Please always remember my dear that my frustration and exhaustion for some of our autism challenges never ever means I don’t love you, in fact it’s exactly the opposite! I want to understand, help and love you with everything I have.
On this journey there is a very common misconception that autistic individuals, especially those on the severe end of the spectrum, have a limited threshold for being taught or the ability to learn new skills - that is a lie.
It is a lot of work, and yes it may take a lot longer but you are fully capable of mastering new skills just like everyone else.
You may not be able to articulate a spontaneous conversation with someone, but you can do laundry at the young age of 8 years old.
You are a visual learner Ad, language is really hard, there is hundreds of thousands of words that make up the English language. Having to sift through pages of words in your head to hold a conversation is daunting, but the step by step process of doing wash is somewhat black and white in its regiment so it becomes easy for you.
Our journey with this spectrum disorder is surely different from most, but I’d like to think we are all the same still kind of similar in the big picture.
We have our challenges, get frustrated, scream, cry, feel defeated, heck all families I’m sure have problems communicating, but we also help each other, learn something new every single day, keep trying if we fail, love with all we have and remember that everyone (autism or not) is an active participating family member - One Team, One Dream.
Love you Ad.
Love,
Mom
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