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6 And I was led by the Spirit, not knowingbeforehand the things which I should do.

7 Nevertheless I went forth...

1st Nephi Chapter 4:6-7

"Make sure they remember joy yesterday, experience joy today, and anticipate joy tomorrow."


Motherhood Mission Statement

To provide a loving environment that is centered around God and His commandments while effectively teaching my children to love, honor, and respect all Men no matter the race, creed, or background.

Click on Nolen's name to hear our amazing journey through autism.

Thursday, November 29, 2012

Therapy

Writing this post must mean I have hope. 

A few months ago, Stephen and I started noticing some very odd behavior from Nolen.  Let me take you back to June.  Nolen was saying "Mama", "Dada", "Ball", and "Apple".  Probably a few more words but I really can't remember them now.  We went on an awesome family vacation, bought a house, then moved.  I was so wrapped up in moving and sorting and organizing that I missed something important.  Nolen.  He was starting to disappear.  By the time I noticed it was October.  Three months.
I had lost him. 
If you have read my blog,  you probably already know that Nolen stopped sleeping through the night at 6 months of age.  I tried various things to get him to sleep through the night.  Actually, I tried anything anyone recommended.  He, and I, have not had a full night of sleep in over a year and a half. 
In October I noticed Nolen was doing a funny shake.  He had done this funny shake since he was 6 months old but had sort of stopped at 12 months but then started doing it again in October.  He was 20 months old.  Nolen also started spinning. A Lot.  All the time.  Everywhere. Always. He started turning his cars over and just watching his tires spin around and around.  He stopped interacting with all of us.  He no longer made eye contact.  He stopped speaking. Completely.  No babbling. Nothing. Silence. 
I could not believe my eyes.  I was watching my son disappear.  He cried all the time.  He banged his head on the ground and did his funny body shake most of the day.  We no longer existed to him. 
I NO LONGER EXISTED TO HIM! 
I started to wonder if this was just a phase.  I looked back at videos of Edward when he was 21 months and he was saying all the letters of the alphabet.  He knew every color.  He was counting to 5.  Then I figured I had ignored Nolen and I needed to spend more time with him.  The first week of October I spent my entire day with him.  It did help, but not much.  He couldn't focus on anything. 
My parents came up for a quick weekend visit.  They noticed the change too. 
I cried.
I had secretly hoped that only I noticed this stuff and that I could change him.  Susan, Stephen's Mom, came for a visit.  She noticed.
I cried, again.
I really could no longer ignore what I was seeing.  I was watching a perfectly normal functioning little boy turn in to an alien.  Someone or something completely foreign to me.  I did not know what to do.
Thankfully, at that time, I was in the right place.  The exact right place.  Singing in the Opera with me, was a Speech Pathologist.  I passively mentioned to her that my Son was not talking.  She said I should have him evaluated.  She gave me the information. 
To be honest, I didn't do anything with the information for two weeks.  I was still hopeful that I was wrong.  But deep in my heart, I knew I was right.  I called Alta Mira and made an appointment for Nolen to be evaluated.
I remember telling the evaluator that it was OK to laugh in my face and tell me I was a paranoid mother who had read in to the hype of Autism.  By this time, I had read so many articles and watched a hundred YouTube videos that I was become an expert on seeing the signs. 
Nolen did them all.
I was still hopeful.  Alta Mira came the week before Thanksgiving.  They delivered a devastating blow.  Nolen is most likely Autistic.  He shows every sign.  He is an extremely picky eater, he spins, he bangs his head on the ground, he doesn't respond to his name anymore, he can't sleep, he doesn't deal well with transitions, the list goes on.  Alta Mira does not diagnose; however, they have worked with enough children to see the signs clear as day.  Nolen never made eye contact with them.  I can't even be sure he had made eye contact with me since July.
My heart sank again, as if it could get any lower. I began crying every time I saw a healthy 2 year old talking clearly to their parents.  I became jealous.  I began to hate myself for not noticing earlier. I was so crazy with jealousy, I couldn't look at other children.  That included my own son, Edward.  He suddenly seemed like a genius to me.  The devastation I felt is incomprehensible.  I suddenly could understand how my parents felt as each of us were (and are) handed trials that they can not control.  I understand, now, a tenth of how our Heavenly Father must feel as he watches us face trials that are life altering. 
I felt helpless.  Will Nolen be able to go to school?  Will he be able to communicate?  Will he serve a mission?  Will he be baptised?  Will he get married and have a  family?  Will he become a doctor?  Suddenly, all of these options were closed.  Or possibilities that he would never obtain.
As a parent, we secretly have ideas for our children that we hope they will achieve.  We have a path that we want them to go down because it is "ideal".   We want their lives to be as easy as possible with small learning trials that will allow them to become sympathetic to others while enhancing their lives with true blessings. Am I the only one who has this secret desire?
Alta Mira came back a week later to discuss treatment for Nolen.  The first thing suggested was "squeezing" or giving him a bear hug.  The moment they left, I started squeezing him.  All day.  Every time I say him, I squeezed him.  I started using sign language.  I asked him many questions. I forced him to make eye contact.  I squeezed some more.  My family came for Thanksgiving and they squeezed him.  A lot. 
Today was Nolen's first real therapy session.
Nolen made eye contact.  Nolen tried to say his ABC's.  Nolen mimicked their sign language.  Nolen interacted with them.  It was as if he was back to himself.  The power of touch is truly amazing.  The only thing different that I did was squeeze him. 
The therapist mentioned that they hadn't seen a child respond that quickly to therapy (that I did) so fast.  They began to question if he was or is Autistic at all.  He certainly has a Sensory Perception Disorder; however, that may be all. 
My fasting and praying (along with my family) seems to have made the biggest difference.  We still have a long road and a real diagnosis ahead; however, my hopes are coming back out of the burned ashes I smothered last week.  Nolen may never be "normal"; however, he is extremely brilliant and is learning.  The last two months have helped my testimony of our Savior grow tremendously.  I am so grateful to have my life.  Both my children are healthy, talented, and brilliant.  Nolen is different and I know we are on the road to recovery.

6 comments:

Anonymous said...

I love you Julie!
- Nikki

Kayla said...

Awe, Julie. A mother's greatest fear. I am grateful that his therapy is bringing him back to you. Lots of love. And I know you are stong enough, capable enough, and patient enough for this.

megs said...

I loved reading this, and felt for you so strongly. You are such a caring, loving, passionate and strong mom. I love that you are seeing him come back to you, and love that squeezing is bringing him back. I hate how powerless we feel as parents, and how we second guess ourselves and wonder if our best wasn't enough or should have been more. We do what we can when we can, and I'm so happy your children are blessed to have you as their mom. All of us are still people even as we become parents, and we are all flawed, complicated and dealing with our own struggles the best that we can, and overcoming them knowing we are responsible for these little lives we love so much.

{HUGS}

Tiffany said...

I'm so sorry to hear about this! I have heard of changing diets for kids with autism (like taking our additives and such) but I'm guessing you've probably looked into EVERYTHING! If you ever want to hang out (like we've always said we would :) ), give me a call!

Heidi said...

I have no words, Jules. I am in shock and I really feel for you. I am praying for God to give you strength and praying for Nolen. Love and hugs to your whole family!

Paul and Aliisa said...

I haven't been online for awhile with the move and all, but I am going to keep you guys in our prayers. I hope that your prayers are being answered and you will get as much help as possible. I hope you will be strong and remember how blessed you are. Loves.