Wednesday, May 23, 2012

On Asperger Syndrome: Morganne's History Part 1

Morganne before showtime
Because I've never shared Morganne's history on my blog, I'd like to record it here, both for my readers and for posterity. She is eighteen, and would be graduating high school this year, had we done things in the typical way. But then, Morganne is not a typical senior. 

I am not recording this history to start a debate or to blame anyone but myself. I am simply trying to record my life's experiences with Morganne and write down her history for her and for our family. Please do not read more into my telling than I am trying to say. I am simply writing these experiences down as I remember them. If what I have to say offends, please forgive me and move on to read something else. Thank you! 


To understand more about Asperger's and autism, see this link

Like other mothers, I have learned much more than I ever could have imagined from my children. I seemed to get immediate lessons in patience, thanks to my sweet and special daughter, Morganne.

Sweet Baby Morganne


Life Before Autism

When Morganne was a baby, she was loving and responsive. She was a bright little one, curious and full of energy-- like most babies. She spoke at an early age and was using full sentences at about eighteen months old. She loved her little brother when he arrived and was always very concerned about "the bebe," dragging me in to check on Brennan whenever she heard him make a noise while sleeping. She was never jealous-- not even for one moment. She was a protective big sister, and was already showing lots of motherly intuition at her very young age.

She also never had temper tantrums-- she was so laid-back and patient. Sometimes, she was so content to be playing or watching movies, that she would not tell me she was hungry, and I would feed her too late. (I was a young, first-time mom-- silly and clueless!)

When Brennan was about 3 months old, we decided to move back to Idaho to be near family. For quite a few months, we stayed with my parents in their home. It was a pretty stressful time for all of us. Soon, Morganne turned two, and out of concern for her health, my mom suggested that she should go and get her vaccinations caught up. (She had received her shots on schedule when she was tiny, but I had not taken her for some time.)

We packed up little Morganne and tiny Brennan in the car and headed to our local health clinic. Something that day kept bugging me-- I couldn't explain why I was so reluctant to get Morganne her shots. I justified it as not wanting to see her in brief pain, not wishing to make her cry. And then I told myself to quit being a baby-- that getting her shots was the way to be a "good" mother. As I look back now, I can still feel the sick drop my stomach took as we waited for Morganne's turn. How I wish I could go back now, and march my little ones back out the door...

The look of distrust and betrayal on Morganne's face when she was stuck will forever remain with me, but even more clearly will I remember her screams of terror when they took Brennan back for his shots.

"NOT THE BABY!!!" she screamed. "NOT THE BABY!!!"

She threw herself uncontrollably, trying to get to the baby to stop us from taking him back. It was so unlike her, so heartbreaking. I didn't know what to do, except to continue. After all, I was being a "good" mom!!! She just didn't understand.

Later, I would find that it was me who did not understand.


A Changed Child


Almost immediately, Morganne became a different child. Because her trip to clinic coincided so closely to her two year old birthday, we all blamed "the terrible twos" on her erratic behavior.

For the first time in her life, she was throwing temper tantrums-- for HOURS every day. And she was not just screaming and crying, she was banging her head on the floor and flailing herself out of our arms and into walls. She could not calm down, and would scream herself to exhaustion.

Russell and I and my parents were overwhelmed, but again, she was two now! This was just what two-year-olds did, right? She was our first-- we had nothing to compare her to. She must just be a difficult toddler!

An interesting side story is that she had been entered into a drawing at the clinic for a t-shirt with a logo about "remember to vaccinate" or something like that. She WON. And when we gave her the shirt, she became enraged, kicking it, screaming, trying to get it as far away from her as possible. She hated it, reacting the same if ever I brought it out again. Finally, I simply threw it away.

But there were lots of clues that things weren't right. Her speech stopped almost immediately. She no longer used words, she only screamed. She stopped wanting to be snuggled. The smallest things would set her off screaming uncontrollably-- she was frustrated by anything and everything.

Our little family just after Lliam's birth, just 13 months after Brennan's

Morganne no longer responded to anyone when they spoke to her. She played by herself, and ignored Brennan completely. Going to Nursery, which she had loved before, was an impossibility. She would react by screaming and flailing her body when we even walked down the hall.

Just before Lliam was born, Russell and I were called into the Nursery, where we stayed with our three kids for over a year. She would go and play on her own, never interacting with anyone-- not even Russell and I. But she would not scream as long as we were there.

Morganne continued in the same state for years. We always expected and hoped she would get better, grow out of her irrational behaviors, but she never did. Any social pressure-- especially things like getting her pictures taken-- would dissolve her into a fit. We all walked on pins and needles around her, avoiding anything that would set her off.

Many family members came to me, asking if I was concerned. YES! I was worried. I knew that something was wrong, but I didn't know what to do! I started to wonder if she couldn't hear, so I tried all kinds of tests to see if it was her hearing that was "off." It wasn't-- she could hear just fine.

But she wouldn't look me in the eyes, she would never say "I love you." She would rarely smile, and when she did, it was to a void, to where no one one standing. She seemed to live in her own little world and we simply could not reach her, wherever she was.


I felt as though I had forever lost my daughter and all she could have been. I mourned, but didn't know what else to do, or where to turn for help. I had never heard nor seen of anything that gave me any clues about what to do next. So I did nothing but hope and wait and pray.

In the meantime, we were busy parents of little ones, while Russell going to school and I was trying to figure out how to be a homemaker and mother of babies that we felt prompted to bring into our family circle. I was overwhelmed by Morganne's problems and so I would not, could not, face them at the time. We were just struggling to get by.



A Glimmer of Hope

By this time, we were living in Provo, Utah. Russell was finally starting to work full time at a job that was supporting us better than before. I was pregnant with baby #4, and Lliam was talking a mile a second! He knew all his colors at age two, and was a bright and curious busy guy. One day, when he and I were having a funny conversation, I turned to see Morganne watching us, with pain in her eyes and frustration in her face. I could tell that she wondered why the baby could talk, but she, who was now five, could say so very little. That little glimmer I saw of her old self gave me hope.

My heart ached. She WAS in there, somewhere. How could I reach her? What should I do???

Finally, I screwed up my courage, and gathered up all my determination. I didn't know how to help my daughter, but I knew that God did. And I was willing to use every ounce of my faith to get her well!!!

I got on my knees and poured my heart out in the fiercest prayer I have have ever said, before or since. I pleaded with God to make my daughter well-- to let her come out of the fog she was in. I told the Lord that I was willing to give every bit of faith in my soul to work to free her from her bondage. I felt I was paying a price, making a deal. For an instant, I had seen my real daughter, and I wanted her back, oh, so much!

The Lord answered my prayer with force. I had to show him my resolve and use all my faith in her behalf. I was to ask my husband to give her a Priesthood blessing, and I was to devote all my faith into believing that she could be healed.

I was to expect a miracle.

So I tearfully explained it all to Russell. He retreated to our room to pray, and I did everything I could to believe, to remove all doubt and trepidation from my mind. I prayed mightily every instant that I waited. I KNEW God had the power to do this great thing. Now it was my turn to give God all the faith-- even if it was just a little mustard seed-- that I had.

Russell came out from praying. Morganne was strangely calm as Russell explained to her about what he was about to do. She listened, never looking at our faces, but her peaceful demeanor led us to believe she understood, somehow. She obediently sat in a chair and held perfectly still as Russell placed his hands on her head.

I don't remember much of the blessing, but I do remember that she was told that "The dark cloud would slowly be removed from her mind." It was the perfect description of her condition.

As the blessing ended, I held my breath. Morganne raised her bowed head and looked at her Daddy.

Then she came to me.

Looked me directly in the eyes.

And smiled.


Love,
Rachel

11 comments:

  1. So sweet that she smiled at you. I hope you will share more of Morgan's life. I too have a child with Asperger's Syndrome. I've come to view it as a blessing and protection instead of something horrid, but I know every child and situation is different.

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  2. Thank you for sharing! I am looking forward to reading subsequent posts about Morganne's history. Please thank her for allowing you to share her story.

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  3. Rachel,
    Thank you for sharing your precious journey. Morganne is so blessed to have a mother who was willing to turn to God,have the faith, and the courage to follow through.

    I know the struggle and the forebodings. My son reacted to his first vaccine, and I did not get it. His second the forebodings were stronger. My husband took him. His 104/105 fever that lasted days and did not respond to fever reducer got us to stop. When he was leaving on his mission he had a non-TB reaction to a TB test. They told him never again, as it was too close to the heart and next time he might not survive. We did not have the Aspergers issues. We did deal with arguing with doctors and judgement of others for our decisions in this regard. People are well meaning. But it is not and never should be their decision.

    Rachel, you are such an example!

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  4. This is a beautiful post, Rachel! Thank you for sharing it! :)

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  5. Thank you, everyone, for your kind comments! I am so grateful that Morganne is willing to let me share her story with you. She is such a wonderful example to me-- she is MY hero!

    She still has Asperger's and her story is not finished, of course. I hope you will enjoy the next part just as much. :-)

    Love,
    Rachel

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  6. Thank you for sharing- I really needed this today as I just got home from a Dr.s appointment after fighting the Dr over not vaccinating, I was feeling beat up. Now I feel better already.

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  7. Love this, Rachel! It is SO important to listen to and follow your intuition (your spirit, as well as THE spirit)! I love Morganne. She has the most beautiful and loving spirit about her every time I see her. Thanks for sharing her story!

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  8. Thanks for sharing this story. I don't know if you know this, but there is a correlation between the rise in autism and 3 different vaccines where the vaccination was derived from aborted baby tissues. Every time a new vaccine was introduced that used aborted babies, that year there was a rise in autism. It has happened 3 different times. But, even though the evidence is there and it is the only thing that has a correlation directly to the years that autism rose substantially, no one will fund the research for it because it is not politically correct. In fact, research on autism is being funded for a rise in air pollution (which there isn't) but not vaccinations and abortion.

    Anyway, I believe you 100% about the vaccine and Morganne. I think you are a great mom and a wonderful inspiration. I love reading your blogs.

    Here are a few interesting articles about abortion and vaccinations and also abortion and other products.

    http://www.lifesitenews.com/news/archive/ldn/2010/apr/10042306

    http://unitedfamiliesinternational.wordpress.com/2012/05/02/the-business-of-abortion/

    http://www.catholiceducation.org/articles/medical_ethics/me0044.html

    http://www.lifesitenews.com/blog/confused-about-the-pepsi-fetal-cell-issue-here-are-the-facts

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  9. Thank you for sharing this, Rachel. I have a 12 year old daughter with Asperger's and it is so difficult to know what to do.

    I often think of President's Faust's words:

    "How are the works of God manifest in these, our handicapped brothers and sisters? Surely they are manifested greatly in the loving care and attention given by parents, other family members, friends, and associates. The handicapped are not on trial. Those of us who live free of such limitations are the ones who are on trial.

    While those with handicaps cannot be measured in the same way as others, many of the handicapped benefit immensely from each accomplishment, no matter how small."

    Thanks again, Rachel!

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  10. Thank you for this touching story. My son has Autism, but it wasn't a dramatic change in his personality when he was immunized (that I can remember, at least).

    However, with my nearly 2 year old, every time I think of getting her shots, a voice inside of me screams NOOOO. I can't ignore it. We've opted out. I believe it's more than just overprotective momma stuff. (I also believe that my son was meant to have this challenge in his life, and that vaccines have nothing to do with his autism. This doesn't mean I don't think there could be a link!)

    I look forward to hearing more about your sweet daughter. :)

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  11. amazing Rachel. I cried at the miracle the Lord performed for your family. I truly hope to be able to be as good of a mom as you. I lack a lot of things, and one of them is not using the Lord enough in my parenting. Thanks for being such a great example!

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