After leaving the meeting, I was tempted to just go home and have a good cry while researching what I could find about Asperger's Syndrome, but went ahead to work out. I figured maybe the exercise would help me balance the mental and emotional stress, and better enable me to hear the Father's voice over the noise of my own confusion and uncertainty. I am so glad I walked into that gym.
As soon as I got there, I bumped into a friend. As soon as she asked me "how are you?" the dam burst. Well, almost. I held it together enough to not drawn attention to myself, but began to tell her what had just happened at the IEP meeting. I said, "I'm not sure if you've ever heard of this, it has a strange name, but I think my daughter might have Asperger's Syndrome." I couldn't believe what she said next. "Oh yeah, I know all about it. In fact my mom has worked with kids with Asperger's Syndrome for years. I'm sure she'd love to talk with you." And right there, the journey to understanding my child better truly began.
From that conversation, God continued to lead me to people who either work with those who have Asperger's, to those who have Asperger's themselves. It was like they came out of hiding and into my life! I began devouring books and blogs and everything I could find so that I could learn everything I could learn. One thing led to another and we were able to find a psychologist to work with us, do some additional testing, and discover her diagnosis. I learned that girls with Asperger's are often not diagnosed until adolescence and even adulthood because it manifests itself so differently in girls than in boys.
As I began to understand better, I was beginning to get to know my Macey so much better. This has been SUCH a gift to our whole family! We have learned not to take things she says or does so personally. We realize she isn't being difficult when she says, "Turn that down, it hurts my ears," or when she insists on wearing comfortable clothes. It hasn't made life completely easy--not at all--but it has increased our peace and our appreciation for the unique ways the Creator chooses to fashion each and every one of us.
In June, Macey and I were headed somewhere by ourselves. Anyone who knows her knows that one of her major requests from me is that she have alone time with just me. She's been this way since she was very young, and continues to want this still. So, as we were riding along together, talking, she told me that she had done a project at school on the meaning of her name. She said she had a really hard time finding the meaning for "Macey." She asked me if I knew what it meant.
I can't begin to describe to you how significant that question was or the moments that followed. You see, Macey wasn't my first choice for her name. It was her dad's choice. I wasn't crazy about it at first, but it grew on me once I learned that one of the meanings for this name is "Pearl." Her dad was a jeweler at the time, and I thought that was pretty. On that warm day, driving along the road, talking to Macey, I realized that this was God's chosen name for Macey.
I asked her if she knew how pearls develop. When she said no, I began to tell her. "Macey, pearls don't just happen. Pearls take a lot of time--years even, for the most precious ones. A pearl develops in the secret, dark place inside of an oyster, and only when that oyster has had something outside of it--an irritation of some kind--enter into it. As that oyster just does what it was created to do--respond to the irritation--a coating is created over that piece of sand or whatever got into it, and over time, a beautiful, valuable pearl is created." She liked that story. And then it hit me. And I said, "Macey, I believe that God wanted you to know that He is writing your pearl story. I believe that long ago, He knew you were going to deal with more irritations than the rest of us. I think He wanted your name to be significant so that you would remember that every time you deal with something that bothers or upsets you--something that other people don't seem to be affected by--God is developing a beautiful, rare, priceless and wonderful pearl right inside of you. And maybe people don't see it right now, but one day, in His perfect timing, people are going to get to see that Pearl that He is creating in you right now."
She loved that. I loved that. We were both in tears. My child who thinks in pictures-- because her God didn't create her broken, just different, and designed her to think in pictures--was given a name that had a symbol attached to it: a Pearl.
Later that same day I gave her a simple little necklace with a pearl inside the pendant. It's kind of hidden inside, so you have to know it's there to see it. I gave it to her and told her she could wear it or hang it up somewhere or put it where she could be reminded that her Heavenly Father is writing her pearl story each and every day.
Later that day, I saw her wearing it. And I've rarely seen her without it since.
Soon after, something happened that really upset her. She was confused by someone's tone and facial expression. We talked about it for a few minutes and then she said, "Do you think this is part of my pearl story?" And I was so happy to say, "Absolutely, sweet girl, I do."
It's only been about two months since I used the term Asperger's Syndrome with Macey. I just felt that nudge of the Spirit that said, "It's time." I drew a picture of the Autism spectrum and explained some of the things I had learned. I wasn't sure how she would respond, but I wanted her to hear it from me, and not from anyone else. I knew, no matter how she responded, she would take it from me better than anyone else. It's just the way things are between us. Her response melted my heart. She said, "You mean that my brain doesn't work like other people's brains, and that it has some parts that might seem broken, but that God could use this in a really good way?" I wanted to jump up and do a happy dance. She got it. She doesn't have a defective or broken brain, her brain just works differently than mine does. Who knows, perhaps mine is the one that has the broken parts.
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As we continue this journey, I'm confident I'll share more about what I learn from my children, and how God uses Asperger's Syndrome specifically, in our family's journey. God seems to use my children more than any other relationship to help me embrace the truth that He really does love us all..."Equally, but uniquely," as my friend John Lynch has so eloquently said.
Thank you for your patience over this past week and I've shared just a glimpse into what this past year has held for me. I covet your prayers for wisdom in leading, not only a ministry to women, but in ministry first and foremost right here at home. Thank you!
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These "Pearl Story" posts were originally posted about a year ago. Since then, God has walked with us through another dark valley. He continues to bring healing and wholeness to our hearts as He reveals His gracious nature and trustworthy character to us --even through those experiences we wouldn't wish on any other soul. God is good. As a friend of mine says, "Life is hard. God is good. Don't confuse the two." Even when we don't understand His ways, we can fully trust His character.
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| Isn't she beautiful? :-) |
Shelley,
ReplyDeleteThank you so much for re-sharing this. I wasn't a follower until earlier this year. Macey is gorgeous, and even what I can't see, on the inside, I know is just beautiful! I wonder if she is at all interested in theater--acting. Or if she works with her hands at all and would enjoy making props or working on sets. Theater requires people to work together for a common purpose, on a set schedule. I know only you would know if she would be enriched by that... it's just a thought. God bless! :-] Dori
Thank you so much for your comment, Dori. :-) Macey is in Technical Theater this year and looking forward to getting into some acting as well as time goes by. You are right on the money--this is what we've thought as well.
ReplyDeleteThanks again, and have a blessed day!