Tuesday, April 2, 2019

Autism Awareness



This post has been in the working for quite some time now.   I see it only fitting that I "go public" with it on World Autism Awareness Day.   I warn you, that this post is long.   I challenge you - to read it all.

While it has been a long time since I have typed in this particular blog, it is quite obvious that this blog documents a journey.   It goes all the way back to the days of infertility and here I am now with two beautiful and healthy children. 

My entire life has been around autism.   My dear friend Maevis inspired me to be a special education teacher.   In high school, I spent my free time teaching autistic individuals how to swim.   Autism is my "thing."   I once had a student tell me that they appreciate me because I "spoke autism"... and fluently!    I'm nerdy.   I like to be up on all the latest research. 

My pregnancy with Elliot was perfection.  Elliot was conceived naturally.   We used progesterone supplements during the first trimester to make sure he stayed safe.  Prior to becoming pregnant with Elliot, we were told, that we would never have a healthy son due to a heart defect on my husbands side of the family.   When we found out we were having a boy... we were completely shocked!  Really?   We had assumed Elliot was going to be Eleanor.   I remember feeling this immense feeling of pride and fear all at once.   He's supposed to be sick.   We immediately had his heart checked.   He was perfect.   And he still is.   I carried him to full term.  Actually, until week 41.5.   I gained NO WEIGHT during the pregnancy.  I didn't have GD.

Elliot hit all of his milestones on time or even ahead of time.   He smiled.  He made eye contact.  He laughed that goofy laugh we all love.   He recognized his name.   He crawled.  He walked.  He ran.   He's been talking since he was six months old (seriously) and hasn't shut up since.   He never demonstrated any learning delays at all.   Other than a slight speech problem, no "red flags" for anything... especially autism... ever came up. 

Elliot has a tremendous vocabulary.    We never believed in "baby words" for body parts and we've never "baby talked" to either of our children.   Mainly because I find it annoying.   I could say because I want my kids to know the real words... but really... if we're being honest here... it's annoying.

Unfortunately, all of the children in his life up until kindergarten were either quite younger or significantly older than him.   For example, he has a cousin that is a senior in high school.   Because of these age gaps, I anticipated some social issues with Elliot. 

I did notice that Elliot wasn't a fan of the Children's message at Church.   He didn't really like sitting up there without someone he knew.   Not really a red flag.   Just different.   And I did notice that Elliot preferred and still does prefer toys that look as they do in real life.   For example, his tractors.  He has/had no interest in plastic or flimsy tractors.   He liked realistic toys. 

When Elliot began kindergarten is when I started noticing some social issues and I found myself annoyed with myself because I was looking at him not just as my son but with my "teacher hat" on.  He struggled socially in kindergarten.   One student in particular bullied him.   Badly.   He had a very hard time understanding why someone would just randomly be mean to another person.   However, kindergarten was only a half day program.   I had asked for him to be evaluated for speech because he did have some pronunciation issues.   At the time, the school determined that his cute little pronunciations were something he would grow out of.   He was thriving academically.  I started noticing a few sensory issues with brushing teeth, preference of body products, and he was not a fan of touching any raw food.

When first grade began is when the real bells started going off for me.   I am a big fan of routine and structure and always have been.   Maybe I'm autistic, too!   Who knows.  Who cares! 

The first week of school was tough for Elliot.   He went from having a three hour school day to a seven hour school day.   He went from being at an in home daycare to school aged child care.  A lot of change was thrown at him at once and despite being prepared for it to the best of our ability (open houses and tours offered, etc) --- he struggled.   At the end of the first week of school, he had expressed a sadness over missing his kindergarten teacher.   He missed kindergarten.   Despite being able to still see his kindergarten teacher, he was still struggling with the new schedule and the new demands.   He was doing fine academically.   However, he was struggling with staying on task.  He was struggling with a full day every day.    He was having some frustrations.   Elliot was able to voice these concerns to me and we came up with some strategies to help him.   A big help was being able to have a good 35 minutes to himself (no Nora, LOL) after school when we got home.   He's allowed to go in my office and draw.  He's allowed to lay in my bed and watch a program.   He can simply just play in his room with the door close. 

When report cards came, we signed up for a parent teacher conference.   His teacher is absolutely wonderful.   As we were talking about some of his struggles, I just flat out said, "Do you think Elliot has Asperger's?   Do you think he's somewhere on the spectrum?   Something is a little... Sheldon Cooperish to me."   She was RELIEVED I said something.   By the end of the week his permission to evaluate was signed and I was in touch with the school psychologist. 

And because this is how God works.... I laughed when I learned that Maeve was the name of the school psychologist.   It reminded my of my sweet Maevis.   My childhood pal on the spectrum.   God is a trickster.   For realz.

As a special education teacher, I know the "rules" and I know the "lingo."   I went all out with Elliot's testing.   I wanted full evaluations done.  Everything.  The works.   With extra data sprinkled on top.  I also knew that this was going to take some time.   Possibly more than the 60 days the law affords.   I also knew that this was going to be overwhelming for Elliot, and I wanted to make sure that a relationship was formed first and also that there were breaks for him so as not to be completely defeated.   I gave the school psychologist his full medical record in addition to providing four pages of typed feedback.   This is my kid.   Something was off.   I wasn't messing around.

February 1st is when I was told that he definitely qualified for special education services as a student with high functioning autism.   I cried.   I don't even know why I cried.    But I did.   I cried.  A lot.

I soon realized that I wasn't worried about Elliot.   I was worried about how other people would see Elliot.   I'm not a fan of labels and I just knew (and know) that there are struggles coming.   But then, the more I thought about it, I had a "DUH!" moment.   It doesn't matter.   Elliot could be purple with five arms and he'd have struggles.   It doesn't matter what Elliot "has" --- he's going to have struggles and it's my job to love him through it.

His IEP meeting was quite lovely.    Not even kidding.   Maeve was kind enough to provide the reports to me ahead of time.   We had great discussion about Elliot.   My little genius.   We agreed that he would benefit from speech and social skills.   It was made very clear that he is not learning disabled.   No where close.    We talked at length about what kinds of SDI's would benefit him.   We set reasonable goals.   I felt like his IEP was a true team effort. 

His classroom teacher is amazing.   She made a "star chart" for him.   His first goal was to hit ten stars.   He mastered that goal.   His second goal was to hit 15 stars.   He mastered that goal this past week.  He is presently working towards a goal of 18 stars and he has been at 17 stars so far this week.

Elliot is far from non-verbal.   It was tough for us to decide if we would tell him he "has autism" because we don't want him all up in his head about it.   I finally sat him down and explained to him about his IEP and what it means and what autism means.   We also had a very good discussion about a classroom rule I have for my students which I now will be passing down to him.    We do not and we will not ever allow our circumstance to be our excuse.   He is not to every "play the autism card" or "use the IEP excuse." and at his young age of seven, he understands this. 

You're probably wondering where Elliot struggles.   I was thinking about posting that but I'm not going to do that.   It's my belief that people need to be judged by the content of their character.  Their integrity.   Not their deficits.   Elliot has them.   And guess what... you do too.

What I can tell you about my son is this...

  • he is and always will be the love of my life
  • he is a fighter just like his mama.   Goals have been set for him, he's processed them, and he's already knocking them out of the park
  • he's caring, he has a huge (and healthy heart)
  • he loves to learn
  • he is especially strong in math and really enjoys science
  • he's a book lover
  • he loves corny jokes
  • he's a builder
  • he thinks in pictures
  • he understands sarcasm
  • he believes in kindness
  • he has hugs that an army could get lost in
  • his big brown eyes are deep and genuine
  • he tells me about his dreams almost every single day
  • he is happiest in nature
  • he's met one friend this year and it brings me great joy
  • he has a toothless smile that can make your day
  • he celebrates his success
  • he acknowledges his failures
  • his hands fit perfectly in mine
  • he is an artist
  • he is a visual thinker and hands on learner
  • he never forgets (blessing and curse)
  • he's working hard at being the best Elliot he can be
  • he is not allowing his circumstance to be his excuse
  • he has made me a better woman since the day I knew he was coming
  • he is going to change the ****ing world.... just watch
  • he relies on and trusts in God
  • he is doing the best he can

It's funny, really.   When we were going through infertility and having miscarriages on the regular... some people would make that age old stupid comment of, "Everything happens for a reason."   I prefer saying, "God is going to use this!" --- it has all come full circle now for me.   

I fell in love with Autism when I met Maevis.    
I fell more in love with Autism when I started teaching for PASD.
I fell in love with my son when I first saw his tiny heart beat flicker on a screen.   
I fell even harder when I held him for the first time.   

And now God has used me through it all.... he has chosen this remarkable young man (who happens to have a few quirks) to be my SON.  He has chosen me to be his Mommy.   And I promise you all this... he is going to change the ****ing world.   He already has changed mine.   

Well played, Lord.   Well played.   

Elliot Walter Geib, you are a Child of God... who happens to have this thing called Autism.  And I love you to the moon and back, forever and ever Amen!  

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