Letter #4 Making A Brighter Blue: Schedules & Autism Awareness

The Fourth Letter

Dear New Parents,

     You probably know that today is World Autism Awareness Day. I am guessing that this is one of the first that you have had since your child was diagnosed, or perhaps you have been suspicious about your child possibly being on the autism spectrum and so you are reading all the information out there a bit more closely. 

     What you'll find on autism awareness can be confusing, with mixed messages thrown here and there: Autism needs a Cure, Autism is just another way the brain is wired, Autism is a list of deficits and obstacles to over come, Autism does not need to be " fixed" it is how we are made...and on and on. 

     My ten year old, Sage, asked me today if we are going to the Autism Awareness Day at school tonight. The funny thing is that I haven't received anything from the school that such a thing exists. All I heard was that the kids were supposed to all wear blue today.

      Then, I remembered, that last year they had a big to-do over it, with the local police and fire department joining in for safety awareness. Sage just figured since it happened on April 2 last year, it would happen again this year-- even if no one tells you about it. I thought, "How appropriate on World Autism Awareness Day, that he make the school aware of their "mistake"." You can't have it just this once in Sage's world.

     In Sages brand of autism, schedules dictate everything...not people. Well, there is a hierarchy:  in the absence of a schedule, the person in authority would dictate.  But if it comes down to a duel between the two, the schedule will reign victorious. 

     It's one of the funny things about autism. It can easily become a problem with some things that he is more rigid over, but the older he get, the less rigid he is becoming. That is a good and a bad thing.  It is hard when he ties himself to a self-made schedule, but it also comes in handy because in some ways, autism can make things easier.  

     Such as, when you want to make bedtime earlier. All I had to do was put it on the nightly schedule! The schedule said, "Bedtime at 8:30pm" and so that was when bedtime was. End of story.  

     I even heard of one boy with autism, who ran away, but left his self-made schedule written out on the table. He wrote on his schedule: "lunch", and then next was "grocery store".  Well, lunch was over, so the police when to the grocery store and sure enough, they found him walking home from the store, just like the schedule said! (I am guessing that they taught him to add,"ask an adult" before "grocery store" when he got home.)

     A schedule is like magic.

     My Stevie (he will be 8 in nine days!) will be very upset at school if they don't put "bus" at the end of his schedule. If it is there, then he does great.

     When Stevie was working on keeping his shirt and pants unrolled during meals (he rolls them up to drink so that nothing will spill on his clothes and make them wet.  You can imagine that this is not socially acceptable in a school classroom!  However, it is better than completely disrobing like he used to do :)  the OT thought to put it on the schedule to keep clothes down. Sure enough, no problem! He kept it down because it was on the schedule.  He had done this for 3 years and no one could convince him not to do it!  No one, but a schedule...

     Autism can seem scary, hard and dark when people focus on the deficits and behavioral difficulties sometimes present in autism. I could focus on what Stevie's behavior would be like, if he was just told to keep his clothes down and then he was made to do it. It would not be pretty; I would rather he just eat naked than see him that upset. But by focusing on the good things, autism is much brighter. 

     This wonderfully bright side is what I have been thinking of today.  With it being "Light it up Blue for Autism Awareness" Day, I have been thinking about blue and it's many shades. Some blues are dark and some bright. I think it only appropriate that it be a brilliant blue, as it would be when seen through the light of Jesus.

     When we stop trying to define autism by the negatives, and instead look to the scriptures to define the people with autism--the same way we should define ourselves--then we get a much clearer and brighter picture.  

     We are all valuable to God. All of us are works of art in His eyes. All of us are loved so intensely that Jesus came down to earth to live among us, experience human life, and then die for us so we could have a relationship with Him, forever.

     Now, that is proof that God thinks more highly of us and our children, and all people with any disability, than we can ever comprehend.

     His love is deeper than the deepest ocean.

     And that is what I would like the world to be aware of today. That we are all the same in the grand scheme of things; in the eyes of God.

     There are some people who look at my boys with autism and instead of the "that's so sad" look, or the "how do you do it" look as if it is a bad thing, they marvel at the wonders of Gods creativity in creating them. That is an awesome thing.

They are aware.  I want to see more if that: people who understand the differences in our kids with autism, and know that God is much more creative than merely making people from a cookie cutter mold like society wants. God is an artist.  

     Children with autism are different, with different needs, different abilities...but when we can look at them and see God in them, and praise God for his amazing art when he made them the way he did, and gave them to us to raise, then we too, will be aware.

We will be aware of the gifts.
We will be aware of the Giver.
We will be aware of the grace.

     We may be neuro-diverse, but we are all equally masterpieces crafted by the God of the Universe.  

Until next time,

Merri

 

A Valentine: Lessons From Sweet Pea Beauty, Part 2

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I remember when the twins were just about one year old.  They were playing together in the living room, and I was thinking about how shockingly beautiful they are to me.

"God, you made them perfect! They are just beautiful!"

"Yes they are, I made them exactly as I intended them to be. And that is how I see you, too."

Struck profoundly by His words to me, and the understanding that I was smack in the presence of a Holy God, I tucked those words in the "do not forget" folder of my heart and sat, processing what He said.

I did not know how God was using those words. But He was, as He crafted together His story; forever enchaining the soon-to-be past to the future.

 

About a year and a half later, we recognized Sage's autism.

God reminded me of his words, "I made them exactly as I intended them to be. They are perfect." And I was  reminded that God is Holy. He doesn't make mistakes. God knew Sage has autism all along. It was only a surprise to me.

Sage's autism is not an oversight by God; it an essential part of His master plan.

It was a hard word-pill to swallow, to let dwell in me and become flesh. To become part of me.

But when a Holy God speaks truth to a heart, that heart is bent toward it until captured.

 

God taught me to see the beauty in autism over the years.  He also has taught me to see myself and others in the the same way. He sees every part of us and says it's good.  He created us, and said it is "very good" (Genesis 1:31)

Many times he calls us the Apple of His eye. He passionately pursues us.

Sure, He knows all we do: all our faults, the cellulite in our souls. Still He looks at us and says we are beautiful...more beautiful.

In the words of the King in the story Snoodlerella (by VeggieTales):

I treasure you deeply you're lovely my child.

I think you're beautiful. There's nothing about you I don't truly love.

Of course it is true every word that I say.

Daughter, I am the king and I made you that way.

I delight in your beauty you're wonderfully made.

I knew you before Earth's foundation was laid.

 

In More Beautiful, Sweet Pea says, "What I thought were imperfections make a world God calls complete"

So often autism is seen as an "imperfection". But God does not.

So often we see ourselves as imperfect, but God does not.

God uses what the world sees as "imperfections" and blends it into his story making it a masterpiece.

 

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Happy Valentines Day everyone!