Friday, June 01, 2012

On Asperger Syndrome: Morganne's History Part 2

Morganne at 18 Months Old in 1995
To understand this post, please go back and read Part 1 of Morganne's story.


She's BACK!
I didn't understand the how or the why, but I did know that our Morganne was back! It was like she was a princess in a fairy tale who had woken up from an evil spell. She still didn't like being pressured, and still had some catching up to do on her speech, but she was suddenly much more aware of the rest of us-- she played more with her brothers, she could look us in the eyes, she began speaking again.

Not long after her vaccinations at age 2.  (Early 1996)
Notice the food in her hand to get her to stay put. And the wary look she has.

I was humbled, though still perplexed at where our girl had been all this time. The only thing I knew about autism was from movies like "Rain Man." And that was not anything like what we'd been going through. I NEVER considered that might be the problem.

I had never heard the term "Asperger Syndrome." We simply moved forward, relieved and ecstatic for things to calm down and be "normal." I was in awe at the hope I now held for my little girl.

Photo with my family before my brother left to serve his mission. (1996)
Russell had to hold Morganne down-- she was not happy.
Lliam was 3 months old here.  (1996)
Morganne was happy because the photographer gave her a fist full of Smarties.

Meanwhile, I was expecting baby #4-- our Miss Bonny. Morganne was very excited for a baby sister! When she came to the hospital with her Daddy and brothers, she exclaimed "Just like Lliam!!!" I was astounded that she was connecting the past when she had hardly seemed to notice or care when Lliam was born. This new excitement and recognition was miraculous!

At this exact moment, Morganne was telling me "Just like Lliam!"
When Russell brought me home from the hospital, Morganne rushed out the door and pulled my bag from the car. SHE was the big sister! She did all she could to help her mama, and loved Miss Bonny so much.

Our Family in early 1999
(See that smile on Miss Morganne? That's the real deal!)
Time passed, and one day my Aunt Ann came to visit us in Provo from Arizona. As she left, she gave me a newspaper clipping that she'd cut out of her local paper. She said that the article reminded her a bit of Morganne. I thanked her brusquely, thinking, "Nothing's wrong with Morganne, NOW. But that's nice. I'll read it sometime." 

Later, I took advantage of a quiet moment after all the kids were in bed to read the article. It was about children with autism. The more I read, the more my heart pounded-- the behaviors were so familiar. The article was describing the "old Morganne" that had disappeared.

Autism.

The Internet was catching hold, and so I read online all I could on the subject. As I found out about the possible link between vaccinations and the disease, I was wracked with guilt, sobbing uncontrollably. 

Could I have done that to my baby? 

I really didn't know for sure. All I knew was that she was a different child overnight just after she turned 2 years old, right after she received her shots.

The "how" of her autism was never clear, but I was so relieved to know that none of us had imagined her difficulty. And that we were not the only family in the world who had dealt with a child changing overnight.

Morganne getting baptized at age 8 (Early 2002)
Life with Asperger's

The years rolled on, and Morganne continued to progress. But she never was the same as other kids her age. In some things, she was far beyond them. For example, she taught herself to read. She also had perfect audio recall-- she could memorize everything she heard. Her memory was astounding, too. She could remember details and events none of us had noticed or recalled.

She still could not handle being pressured in any way-- especially socially. She attended Primary at church, and loved to be around others, but she could not handle the glare of the spotlight-- any pressure to perform in front of a crowd melted her into tears. I learned more about Asperger's and about the WIDE spectrum of autism. It helped me to be more patient with her and her struggles. And it helped to share her condition with her teachers and leaders at church, all of whom were loving and supportive of Morganne and our family.

I remember when she gave her FIRST talk in Primary. She was ten years old, and was part of a class of very sweet girls who loved her fiercely. They cheered her on, smiling and encouraging her through every word. When she sat back down, her class all squealed with delight, exclaiming "Good job, Morganne!" She grinned from ear to ear, and I was so grateful! Morganne had conquered a great fear! And it was because of the love and acceptance she felt from the girls in her class.

Morganne on her 11th birthday

Sometimes, Morganne could not find the right words to say, so she would just look deeply into my eyes, willing me to understand what she needed, how she felt. This is still something she does today-- words are so elusive for her to express! But I have never had a problem understanding what her eyes are saying. Her soul speaks louder than words ever could.

Morganne also has trouble reading out loud in front of anyone-- even her family. She stutters her words; those pesky words! BUT, she can memorize ANYTHING! And when she recites what she memorizes, she does not stutter in the least!!!

Shakespeare Magic


Morganne in her first role as Olivia's maid in "Twelfth Night"

A couple years ago, we put on Shakespeare's A Midummer Night's Dream with our local homeschool group. After the auditions, I was casting the show, trying to decide between Morganne and another girl for a lead role.

I was so torn-- Morganne had stuttered a lot during her reading at the audition, but I knew what she was capable of from her tiny role the year before. (She had not only memorized her own lines, but everyone else's in the show!) 

A part of me was afraid that some of the kids or parents in the group would think I was favoring my child over someone else. It was extremely hard to know what to do. But as I prayed for guidance, the Holy Spirit very clearly told me that Morganne needed and deserved the part! So I cast her as Hermia, one of the four lovers in the show.

She did a PHENOMENAL job! She never stuttered one word. She had every line and every entrance memorized and perfected. Her leaders and friends, both from class and from our ward congregation were astounded when they saw her perform! It was another miracle, a huge blessing for us all.

Morganne as Hermia, with her Lysander

All Grown Up

Over the years, I have learned so much from Morganne! I am a VERY verbal person, and so I have not always been as patient or understanding as I could or should have been of Morganne and her needs. But she continues to be patient with me and my limitations.

Morganne still hates to be pressured into anything she is not ready for. And we have all learned to respect and honor who she is, without trying to get her to be anything other than Miss Morganne. She has a very calming, quiet spirit about her. She is patient and quiet, loving and tolerant. She loves to cook, to read, and to write in her journal every night. She wants nothing more out of life than to be a wife and mother.

She knows the scriptures better than anyone I have ever known-- she still has an incredible mastery of memorizing. If we need a scripture reference, or need to be reminded about what someone said or did in the past, we just go to Morganne and she can tell us exactly what we need to know.

Morganne loves to be HOME, surrounded by those who love and understand her. And she loves to be around her peers, though she doesn't say much, or really knows how to be an intimate friend with someone. But that does not bother her-- she loves everyone she comes in contact with.

And we love her, oh, so much. I am so grateful and humbled that I get to be her mother!

So while Morganne will not be marching down an aisle with a cap and gown this spring, and will not be leaving us to attend college any time soon, she is doing exactly what the Lord has in mind for her today.

And I am so very proud.

(I love you, Miss Morgie!)

Love,
Mom

8 comments:

  1. So nice to have such a happy ending. My sister's son has been diagnosed with autism and people at church are giving her such a hard time. She should read this. It is so hard to see the end from the very difficult beginning.

    ReplyDelete
  2. This is so lovely and full of hope. Thank you.

    ReplyDelete
  3. Beautiful Morganne. And a beautiful story of faith and the courage to never give up.

    ReplyDelete
  4. What a difficult thing to go through, but it sounds like she's come such a long way! I have a brother who might be on the spectrum somewhere though he's never been tested in any way. My mom had to work with him a lot when he was a little kid and he would do things like start screaming and freaking out when he was in a large group of people. He just graduated from high school though and has $14,000 of scholarships for music which he's incredible at! He's definitely quirky, but he's got some amazing gifts that balance that out. Your daughter sounds like such a wonderful girl.
    I hope you don't beat yourself up thinking you caused her difficulty by taking her in for shots. I can't imagine how hard that would be to feel like it was all my fault. You are an amazing mother and you've obviously done wonderfully with her all these years! I'm sure you've read up more on Asperger's and Autism that I have- but have you read some of the newer studies about how they are finding indicators of brain changes in children as young as 6 months old? Those children don't show signs of autism until much later, but it sounds like there may be changes happening a lot earlier that you couldn't have any control over.
    Anyway, you are amazing and your daughter sounds like such a neat girl. Obviously she was meant to be in such a loving family where she would get the compassion she needed to thrive.

    ReplyDelete
  5. Thank you so much. Especialy for this post. I have been reading your blog for a while and enjoi it so much. I live in Estonia...far from US, but I am so thankful for the internet:)
    I have a 11 year old son who is also aspy and we are praying and pondering that should we turn for help to specialist. (My Visiting teacher is saying to me that if you dont have a diagnose from specialist then you dont have it...)Did your family ever had some kind of therapy or medical assistent? Your daughter story remainds me so much of my sons. It really gives me some hope.
    Thank you! Maila

    ReplyDelete
  6. Hello, Maila!

    We just BARELY got a diagnosis for our daughter, since our bishop recommended that she should be evaluated before putting in her mission papers. We were right-- she is on the autism spectrum.

    The diagnoses for these diseases consists entirely of answering questionnaires. It was pretty easy and straight-forward. If you cannot afford to go to the Church's Family Services, I would ask your bishop for assistance.

    I never felt that an "official" diagnosis was important, but now that we have it, I feel vindicated and satisfied to know that I'm not a bad mother, that I can trust my mother-instincts, and that my daughter has thrived even without professional help.

    I *do* wish that I had looked more seriously into speech therapy, since she has a stutter that may affect her missionary service, but otherwise I don't know that anything would have made a difference.

    I hope this helps. Our family recently watched the movie "The Singing Revolution" about Estonia's struggle for freedom, and we were all very moved. What a wonderful people!

    HUGS,
    Rachel

    ReplyDelete

I will not approve any comments that are rude, negative, or disrespectful. Thanks for being civil! :-)