Wednesday, December 17, 2014

Progress and Autism

I seriously just typed the majority of a post entitled "Progress" and then accidentally deleted it.

So when you haven't updated your blog in a year and a half, you would think a basic overview would be needed. I would love to do a big ole update, but I'm tired. Recapping the last 18 months would only add to my fatigue. So for now suffice it to say that life these passed several months has been wonderfully hard. There has to be a better word than 'hard'. Just know that I am using it in the truest sense of the word.
Life has been hard.
However,it has not been void of great joy and triumph. It's ironic just how closely and seamlessly joy and sorrow, struggle and triumph are intertwined. One only magnifies the other. Such is life.
I have avoided this blog except to receive updates about others' families.  This blog is so incomplete. My children are no longer the babies pictured in the sidebar. Their legs are longer (even Jack's) and bows in Ellie Kate's hair are a thing of the past. Sigh. This blog has been a reminder that life goes on whether or not I record it's happenings.
I have so much regret in not having written about our day to day lives.
Birthdays have taken place.
Milestones have been reached.
There's just something that happens as life takes it's course. We aren't given timeouts or do overs.
I have a rather extensive list of unpublished, unfinished posts. The hardest thing for me to do is sit down and systematically write out my thoughts. That requires acknowledging all that's taking or has taken place in my life. So instead of trying to bring anyone up to speed, I'm just going to write. It's therapeutic and needed. Here I go...

 He stood at the top of the stairs and got everyone's attention .  I was walking up behind him. I watched as the room full of smiling, family faces turned at the command of his little six year old voice. With all eyes on him,he began having a meltdown complete with loud yelling. I did what I knew to do. I scooped Emmett up in my arms. He used to be lighter,but in that moment my mommy adrenaline was pumping. I took him into the sunroom away from everyone. Ross met me there. We spoke words of reassurance to Emmett. He soon retreated in his mind to a movie. I don't know which one. He does this often. Quoting lines and acting out parts. I think it soothes him. I decided to go and get my Mom who is better known as his "Nana". He loves her. And just like that he seemed okay.

The scene would replay itself later. He would fall to the floor and yell. I would once again take him to a different room. There I would just hold him. I would then press my face next to his and pray. I would allow the warm tears to trickle down as I thanked God for the gift of Emmett. I would simply ask The Lord to help him. I would want to stay in the room and just cry,but this was Thanksgiving day and we needed to return and visit with family.
So after Emmett calmed down,I returned to the living room. He went to the adjoining kitchen. There he darted or paced back and forth,back and forth while flapping his hands. He was stemming.  It's his way of self soothing. Typically I would try to pull him out of these odd behaviors and try to make him be fully present. But today I knew that he was overstimulated. He was out of his routine and surrounded by a lot of people so I gave him a break. I let him retreat into a world that only Emmett knows.
We've been on this journey with autism for a few years now. I've described it as unwrapping the gift of my son. He is so precious and amazing. He is a sweet, affectionate child. As my Grandfather recently stated," If he could really talk,I think we'd find out that he's smarter than all of us."
While Emmett is verbal, he often speaks in scripted tones and quotes phrases from movies. He has a serious love for the alphabet and the book Chicka Chicka Boom Boom.  It overwhelms me to write about him, because like any child he is complex. 
Days like Thanksgiving take me back. Those days take me back to an uncomfortable place. A place where meltdowns were the norm and recovering from them took many more agonizing minutes.  It's in statements like the former that I have to stop and have a realization.
Progress has been made.

There is this thing about me that drives me crazy. I've known it about myself for some time and it's never served me well. I am an all or nothing person. The thing is that in the world of autism progress comes incrementally and often I don't even stop to recognize improvements as they are taking place. 
There is an account of Christ in the book of John that I heard before Emmett was born. It takes place in chapter 9.
As He went along, He saw a man blind from birth. His disciples asked Him, "Rabbi, who sinned, this man or his parents, that he was born blind?"
I love Jesus' response in verses three and four..."Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life."
I can recall the first time that I ever heard the concern of autism with Emmett. I was in a restaurant. I didn't fall apart there, but you can bet that the car ride home was tearful. In my mommy mind I had failed my blonde haired, blue eyed boy.  I was eight months pregnant with our third blessing and here I was unfit to be the mother to my first two children.
As Emmett's mom, I needed this uninvited visitor of autism to be my fault. It was an unknown, scary invader. I needed someone or something to blame. I felt that the responsibility needed to rest squarely on my already weighed down shoulders. Oh how I wish John 9:1-4 had been my first thought.

The Lord in His goodness has shown me a different view of autism. 
You see all the times that Emmett makes noises or has a meltdown and is just different, well, those moments point me back to Christ. I have no one else nor anywhere else to look except to my Savior.  Autism shows me my need for my Lord time and time again.
God has a purpose in Emmett.  He is not less than. He is exactly as he is meant to be.
I do not always understand the struggle. I definitely do not always appreciate the struggle.
In the midst of pain and hardship, I'm tempted to just throw up my hands in surrender to the struggle itself.  God likes when I throw up my hands, but He knows that my need is to be in full surrender to Him.  I do not have to understand what we have been or are walking through. I do have to trust Him and His good purpose in it all.
I rarely get this right.
My thankfulness comes in the knowing that He has been and continues to be patient with me. 
I often pray with Mark 9:24 in mind. A father brings his son to Jesus to be healed and says..."But if you can do anything, take pity on us and help us."
"'If you can'?" said Jesus. " Everything is possible for him who believes."
Verse 24...Immediately the boy's father exclaimed, "I do believe; help me overcome my unbelief!"

I see myself in that boy's father. I see myself in his raw, honest statement that expresses belief and the lack thereof all the while pleading with Jesus to remedy the latter.
I want to get this right. I truly do.
There is a richness in struggle. I hate it and love it all at the same time. It causes a turmoil. It churns and changes. It brings tears that accompany joy and tears that accompany sorrow. brings progress. Progress that cannot always be measured or felt, but that is present nonetheless.


holly said...

Thank you so much for this. You are such a gifted writer, and in know you don't have time to do it more, but you should try!!! You sure brought some comfort to me. Not a mommy of a child with autism, but a mommy. It's a hard job and we all need encouragement. Xoxo-Holly

Donna said...

Such a beautiful, heartfelt post. You do have a gift for words and I hope you will blog more. Thanks so much for sharing the good and the hard. Love you!

Linda said...

What a beautifully written, heart touching post. Thank you so much for sharing.

Autumn said...

Thank you for the reminder that our children are perfect as is..

Shana Moton said...

what a beautifully painted picture of living real before a very real God. Love you, Amy. thank you for sharing your life.