A couple of weeks ago, we finally got an official diagnosis for Alana, one of my twins. The doctor confirmed our suspicions. She definitely has Asperger Syndrome. According to the doctor, there are changes in the works in the medical community to eliminate the separation between Asperger’s Syndrome and Autism by referring to them all as Autism Spectrum Disorders. That’s just a dressed-up way of saying our family has yet another mountain to climb.
I guess the formal diagnosis shouldn’t really change much in our lives. We’ve suspected for several months and we’ve already taken steps to try to help her. We’ve eliminated red dye from her diet, learned to remove her from situations at the first sign of sensory overload, and tried different coping methods to work through the inevitable meltdowns.
But somehow, having the words written that will forever label her…well, it does change things.
Last night, I went through my nightly routine of teeth-brushing and face-washing, and then I checked on the kids. They are five and two, and I still can’t go to sleep without checking on them, making sure they’re breathing, and saying a little prayer over each of them.
I got to Alana’s bed last. I sat there on the edge to watch her sleep for a minute and give her a kiss. As I looked at her, the reality of her diagnosis hit me.
Sure, we expected it. And just like I do with my health issues (RA and Fibro), I’m constantly doing research, trying to find tips and tricks for handling this. I’ve thrown myself completely into figuring out what’s going on in her brilliant mind and helping her through her struggles. But I don’t think I’ve let my heart in on the process. And last night it learned what was happening and screamed in protest.
“THIS IS NOT THE WAY IT’S SUPPOSED TO BE FOR HER!”
She’s not supposed to have to struggle to make friends. She’s not supposed to get so anxious over a picture she’s drawing that she starts crying because she messed up and thinks other people won’t like it. She’s not supposed to have a compulsion that makes her chew the skin on her fingers until they bleed. This should NOT be happening to my child!
There are so many things that are much worse than ASD. I know that and I thank God every day for the health of all my children. But I think every parent can understand that I had a vision of how things are supposed to turn out for my kids. They’re all going to grow up and have plenty of friends, go to college, have a great career, get married to their soul mates, have beautiful healthy babies, etc. And while I know that they will ultimately forge their own destinies, I guess the common thread in what is supposed to happen is an absence of pain.
Pain is part of life.
There’s no question about that. As much as we want to protect our children from it, it’s going to happen. Our job is to be there and help them through it. And while I watched her sleep, I realized that she’s likely to be dealt much more than her fair share of pain. There seems to be new stories every day about children with autism being abused or bullied. The last few months that Alana was in daycare proved that it starts early. The four-year olds didn’t understand her anxiety and meltdowns so they would pick on her about it. It brought me to tears.
As much as I worry about her in social situations as she grows up, I am constantly amazed at the gift that Asperger Syndrome has given her. We always knew she was very smart. As I home-school her, though, I’m seeing evidence every day of just how different Alana is by comparison.
For instance, a few weeks ago, she got her Hooked on Phonics Kindergarten Level 1 book and started reading it to me. She sat for an hour and a half straight going through the last seven lessons in the book. No DVDs, just her. I feel like I’m not even needed now when we work on reading. We’ve completed one-quarter of Kindergarten and she’s reading every one syllable word she comes across.
Beyond scholastics, she understands things on a deeper level than even I do sometimes. Since our last appointment with her doctor, she and I have talked a little bit about what makes her “different” than most other kids. I told her that the symbol for Autism is a puzzle piece because we still don’t know much about it and we’re trying to fit the pieces together.
A few days later, she brought me a piece of paper with a few colored pieces glued on randomly. She said, “Mommy, this is your puzzle. Every day when we figure out something else about me you can glue on another piece until we have it all put together.” Just one of the many things that surprise me coming from a five-year old.
I admit, I had a rather weak moment last night, sitting there on Alana’s bed.
I try hard to be positive and look for the bright points. But sometimes the worry, the pain, the fear all break through and dark clouds roll in. Then, Alexis giggles while she wrinkles her cute little nose, or Avery tells a 2-year old version of a knock-knock joke, or Alana says something really profound.
Then the light comes back, reminding me of just how blessed I am and how much I have to be thankful for.
*I know that not everyone out there is a Christian and I hope that nobody will take offense to this post. My faith is a very personal thing, but it helps me get through so much. My prayer is that everyone dealing with a life crisis will find something that will bring them peace and hope, whether it’s faith in God, faith in humanity, or faith in herself.
When I wrote about my miscarriages and TTC journey, it was the hardest piece I’d ever written. What I left out, though, was the behind the scenes issues. The emotions that I’m still ashamed of feeling. That probably sounds stupid. I mean, you can’t help how you feel about things so why feel shame? Well, it’s been six years and I still do, so I guess I can’t answer that.
When Jordan and I decided to start trying to get pregnant, we didn’t broadcast it, but we also didn’t hide it when people asked. And people did ask. We’d been married over a year at that point, and apparently that’s the time that everyone from your grandma to the cashier at the grocery store deems you ready to have a child. But when we realized we would need a little help expanding our family, we clamped our mouths shut. Our families and closest friends were the only people who knew what we were going through. But when we got that first positive test, we told everyone! I’ve never been the best at keeping my feelings under wraps and we were thrilled.
A few days before I got that positive test, my sister-in-law gave me the news that her sister-in-law was pregnant. I was pretty discouraged at that time thinking that the round of Clomid I had just finished had not worked. But here was this girl (who I love dearly, BTW) who had become pregnant accidentally. It hardly seemed fair.
But then I found out that the Clomid had actually done its job and all was right with the world again. I could be happy for my sister-in-law sister-in-law-in-law sister-in friend, if a little worried for her. After all, my faith had always dictated that “everything happens for a reason.” But then it all changed.
During the few days that encompassed the fateful ultrasound experience and gut-wrenching D&C, I lost more than my baby. I lost my faith.
I left the hospital a bitter, heartbroken person that I no longer recognized. I was angry at the world. I was angry at God. I didn’t go to church. I didn’t pray. I didn’t even sing; something that has always been my solace. For three months I was in this dark pit. Every time someone who didn’t know would ask about the pregnancy and we had to break the news again, I sank further.
At that time, I worked for an agency that provided low-income housing. It seemed like every other day I encountered another woman who was expecting yet another child that she couldn’t afford. All these women around me were getting pregnant so easily, some while actively trying to prevent it, and having the healthy babies that I wanted so badly. I couldn’t understand why I was being treated so unfairly. I couldn’t bring myself to go to the baby shower for my brother-in-law’s sister. Every time I saw a pregnant woman I would cry.
It kills me to finally admit those things. There are very few people in this world that I’ve told about that dark time. I still feel guilty for being so angry. But if my first miscarriage caused me to lose my faith, my second one brought me back.
My second miscarriage happened on a Saturday morning. I was in the ER for a few hours then sent home. The next day at our church was Youth Sunday. I hadn’t been to church in three months at that point, but Jordan’s best friend, David, was delivering the message that day, so I insisted on being there. Not many people at church had known I was pregnant that time, so we didn’t really have to talk about the loss.
Something happened that Sunday morning, though. The youth members all did a great job with their testimonies, prayers, and music. David delivered a beautiful message. And then the youth sang a song to tie it all together – Here I Am Lord. I had heard the song a hundred times before. I had sung it about half that many times. But that day, I actually listened to it. It suddenly spoke to my heart in a way I had never felt before. Thank God we were sitting in the balcony so the whole congregation didn’t see me burst into tears.
I suddenly was at peace. After being angry for so long, it was an incredible feeling to let go of it. In that moment I knew that, like Abraham and Sarah, we would eventually have a child. And that there was a reason for my losses. I knew that it was going to fall to me at some point to support others going through it.
I was able to do just that several months later when my best friend had her first miscarriage. I’ve reached out to others as well – old high school friends on Facebook, a friend at church, etc. It’s what I hope to accomplish by contributing to this site. It also sort of paved the way for me to do the same thing as soon as I was diagnosed with Rheumatoid Arthritis in 2008. Since then I’ve found myself in something of an online support network of people living with chronic illness. Without that moment of clarity, I’m convinced I would still be that bitter person. I’m sure that the RA diagnosis would have been much worse than it was, emotionally speaking. I honestly don’t know how I would have made it through either of my full-term pregnancies, much less through a certainty of life-long pain, had I not had that renewal of faith.
I didn’t tell anyone about what happened to me that day until a few months ago when Jordan and I had the privilege to see David ordained. I figured that was probably the right time to tell him about the impact he had on me that Sunday so long ago. Today, my relationship with God is the most important thing to me. Through Him, I can do anything. There are days when I just need a nudge and there are days when I’m forced to ask Him to carry me. And I’ve come to realize that everything truly does happen for a reason, even if that reason isn’t revealed during this earthly life. But the choices we make when facing hardship will usually go a long way to reaching that revelation.
“But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.” ~ Isaiah 40:31