Autism from a Mom's Perspective: Part 1-Defining Autism

 

I’m not one for sharing my personals, especially something like this, but I feel confident that this is something I need to share.  Understand this is not something I try to hide.  I am not in denial.  I am certainly not ashamed.  I choose not to make a big spectacle about it because people are very ignorant and sometimes inconsiderate.  Not intentionally, of course.  Just ignorant, not knowing, unaware.  Their intentions are good, but their words, unwelcomed advice, and stares are hurtful.

This is my very personal story about my son, Paxton, my absolute joy of my heart!  Paxton was diagnosed with autism and sensory processing disorder at the young age of 2 on December 18, 2013.  April is Autism Awareness month.  I feel in my heart that I need to do my part this month to help raise awareness, not just for my son but for the other millions of children that have autism.  Would you please take the time to read my series of blogs this month about how autism affects my family and become autism aware? 

In this first blog, I will define autism.   Next week I will answer questions that are frequently asked to me like how I found out Paxton had autism and my thoughts on the great vaccine debate.  Then saving the best for last I will present “Autism through Pictures.”  My good friend, Missy, of Missy Moore Photography, is helping me show you the day in the life of Paxton and how autism affects his ways of learning, seeing, tasting, and living life. 

Thank you in advance for your support, and keeping an open mind.

AUTISM DEFINED SERIES 1 OF 3: WHAT IS IT?

Let me give you a short and to-the-point definition of what autism is and then I will go into depth what autism is for MY FAMILY in my own “Mandi” terms.

According to the Autism Society of the Heartland:

Autism is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a "spectrum disorder" that affects individuals differently and to varying degrees. There is no known single cause of autism, but increased awareness and funding can help families today.

In Mandi terms, in my day-to-day experiences over the last year and a half, autism is defined as being a term for those that learn very differently and communicate differently than the majority of the population and are therefore given a label.

I will be 100% honest in saying I really didn’t have a clue what autism was until my son was diagnosed.  I was ignorant.  And I did not realize how ignorant most of society is about autism until my son was diagnosed.  To save you from your ignorance, the same ignorance I had, let me show you what autism is and tell you what it is not.  Although each person, autistic or not, is different and they all learn differently and at different speeds…

·         Autism does NOT mean one is mentally retarded.  Please do not use that word anymore.

·         Autism does NOT mean one is “slow” or “not all there.”  They may be delayed in certain developmental milestones, but hey!  What’s the rush?!  There is a difference, folks.  My son may not be able to communicate in a way you understand, but I assure you he understands a lot more than he is able to verbally communicate.

·        Autism does NOT necessarily mean one is disabled physically, mentally, and certainly not spiritually. 

·        Autism does NOT mean one needs a pity party.  My kid is not dying or suffering. Neither am I!  No need to give me big, googley eyes or try to find words. 

·        Autism does NOT mean one is weird.  You are weird.  I am weird.  We are all weird in our own way.  Just because someone is a little different or may have a unique quirk, don’t label them as having autism.

Read all the books you want, but you cannot even begin to comprehend autism unless you parent a child who has autism.  You cannot begin to comprehend autism unless you live with it daily. Understand I am Paxton’s advocate.  I will always stick up for my boy.  I will always speak for my boy until/if/when he has his own voice to speak up for himself.  Again, I know people’s intentions are kind, but their words and looks are hurtful. 

That being said, a little warning of things NOT to say to parents of autistic children:

·        Anything that has to do with essential oils – Your stupid oils will not help or treat the symptoms of autism.  Sorry to burst your oily bubble.

·        Your dietary advice – Although I truly believe in the gut-brain connection, your diet will not help or treat the symptoms of autism.  General mood or behavior?  Sure.  Maybe.  But not autism.

·        I do not want to hear about your friend’s cousin’s little boy that has autism.  I understand you are trying to relate, but please don’t categorize or label people with autism like they are a breed of dog.  There is a saying “If you’ve met one person with autism, that’s it.  You’ve just met one person with autism.”  In other words, people with autism are unique in their own way.  Just like non-autistic people are unique in their own way.

·        Please, please, please, I beg you.  Do NOT try to compare your normal-developing child’s behavior to my child’s behavior.  Every kid has their quirks.  Every kid has their ups and downs.  Every kid has their tantrums.  Do not try to make me feel better as if every kid has the meltdowns like my child.  Forgive me if I don’t feel sorry for you because your 2-3 year old isn’t potty trained yet.  It will be years before my son is potty trained.  Forgive me if I don’t feel sorry for you because your toddler won’t eat vegetables because I am going to celebrate the day I can get my kid to try a tiny bite of greasy, gluten-licious pizza without gagging and crying.

That is autism defined; what autism is and is not.  Let me liven up this mood by defining MY Paxton. 

Defining Paxton

 

Paxton is a ton of fun!  He is a hilarious, very silly little boy.  He makes me laugh until I cry.  His laugh is the most contagious and anyone will tell you the same.  He loves stickers, circles, fans, and the color green.  He loves music and likes to sing.  Two of his favorite books are Goodnight Moon and Brown Bear, Brown Bear, What Do You See.  His favorite movie is Disney’s “Planes.”  He loves to jump, swim, swing, slide, climb and be outside.  His most favoritest thing of all is airplanes!  Airplanes and helicopters.  He can’t get enough of them!  Paxton is an awesome big brother and loves to love on his little brother.

I love my little boy with my whole heart.  Some days, some weeks are very difficult.  Sometimes I just cry out to the Lord and ask him to please, please help my little boy overcome his frustrations.  I ask Him to help ME because I am at a loss.  You know what, though?  I love Paxton just as he is.  There is not one thing I would change about my little boy, quirks and all.  I do wish some of those frustrations would just go away, but every person on this earth has something they are dealing with.  It’s called life.  The God I serve does not make mistakes.  The God I serve made Paxton just the way he is for a reason.  The God I serve chose Paxton for me and me for Paxton.  And that is an honor in and of itself.

"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:14