Wednesday, May 23, 2018

Living Shameless

It was a gray and gloomy morning, but I was putting on a brave face. I grabbed an umbrella and sunglasses. One for the predicted rain and the other so I could avoid eye contact and hide my tear-filled eyes. As I walked through the gate to the local Special Olympics and looked around, I figured out why the day felt heavy to me. It took me back to years ago and conversations of potty training and new words that I felt awkwardly left out of. It reminded me of meetings in concrete rooms and recited lists of delays that strangers had noted in my child after spending an hour with him. It reminded me of the first handflap. Strangely, it occurred during his first ever psychological evaluation and directly in front of a two-way mirror  with scrutinizing professionals looking on from the other side. It reminded me of all those moments and so many more. The hard, ugly meetings, and doctor appointments, and evals and diagnosis. I felt that morning like I didn't belong. No, my child is not "typical" but he is lots and lots of other awesome things. It's an odd situation to find yourself in a crowd of people, surrounded by noise and life and yet feeling alone and lost.  I felt almost out of body, looking out at the other folks who probably felt alot like me. Our kids, our loved ones break the mold. It is impossible not to feel the tension of being different than the rest, different but not less, even though we feel comfortable and confident (ish) in our daily living of our lives.  That particular morning, I felt the weight of being different. 

This weekend, I heard a sermon that really put it all together for me. What I was feeling, what I was experiencing was a sense of shame. Our pastor described shame as different than guilt. He defined it as more like a label that we put on ourselves, maybe because of something we've done or maybe something done to us, or maybe just life and it's circumstances. The thing about shame is that we can't remove that label on our own once we put it there. It sticks and we live it until we find a replacement. We need people to share it with. We need to shed some truth, some hope on it. We need to let God take it from us, and lift up our eyes to Him and his glory. God is always faithful to teach me new things everyday and that morning at the Special Olympics,  he helped me to look up and I saw a few things that changed my perspective. I saw the sun peeking out and drying up the the ugly. I saw the familiar and perfect faces of my mom and dad. They were both sporting their "team G" shirts and my dad had his ever -present camcorder. Last, I saw G coming in with the other athletes. He was holding a sign and ran excitedly over to meet me at the fence line. His smile, the smiles of the others around him and the cheers of the people who love them the most, reminded me that different really is not less, and we all belong wherever we are planted. We can find others to love us through life.  I wasn't alone, none of us are. We can find hope in the everyday blessing of our all-the-time God. I will not feel shame, or alone, but I will proudly wear the label of "autism mom" as will many others. We are different and so are kids but they are special in more ways than what you think. They love and they live in amazing ways and we get to do it alongside them.  This label is not shameful or lonely. It is beautiful and perfect. It is a part of me, a part of us, and it suits us just fine! None of us know how to live the life we are given but my prayer is that we find a way to do it well. No life is "typical" or comfortable all of the time but it is all we get and I am grateful to live mine with my tribe. 

I texted my husband that morning when I felt sad and pulled down by the load of it all and I needed a lifeline. Once again, God shows me things in new ways everyday and that morning he used text messaging! Ryan reminded me that G isn't the only thing in our life that makes us different. There are times when we feel or have felt out of place because of our beliefs, because of our choices, because of our life circumstances. Sometimes being different is right and worthy. His words, his insight. they helped me to refocus. If given the choice, I wouldn't change any of it. The hard, the easy, the "non typical"-I wouldn't want another life or to go back make different choices. I am who I am because of my beliefs, my choices, my life's circumstances. Can it be lonely and heavy? Absolutely. Can it be beautiful and inspiring? Everyday. All of us have things that make us feel unworthy in some way. It could be a decision you regret or, maybe, don't regret. It could be something you did or had done to you. It might be inherited or passed down to you, something that is a part of your DNA. I recently read in 1 John 1:7, "But if we walk in the light, as he is in the light, we have fellowship with one another, and the blood of Jesus, his son, purifies us from all sin." The Light removes the darkness and brings us all together in fellowship, sharing and living together. It heals and binds us and lights our way. As I looked back over this crowd of moms and dads and caretakers, I want to find all their eyes and remind them that their babies, their sons and daughters and students, were all made in the image of an incredible, loving, and powerful God. Every single one of them. I wanted to tell them that He never makes a mistake and that he has perfect, purposeful plans for each and everyone of us. I wanted to tell them and myself that we aren't alone but we are exceptionally blessed. So, I smiled my secret smile, put my umbrella down, took my glasses off, and breathed deep. The breath of living a full and different life without shame.

Sunday, April 1, 2018

Welcome to Our World

It is April folks, and around here that means lots of things, baseball season starts, spring is springing up (or at least we hope!), and, a special one for us, AUTISM awareness month. Ryan and I were reflecting just the other day on how different our life is than what we thought it would be. Let me transparent, we didn't know much about autism and we didn't have a plan for it affecting our world. We figured we did not fit the at-risk group and so we were good. We think about my pregnancy and we wonder when and how and why. We look back now at baby pictures of G and we don't see an autistic baby. Then toddlerhood, that's where the seed of suspicion took root in my mama heart. He had a crazy high pain tolerance. He was too easy. He didn't throw fits (those were the days!) He didn't talk and didn't care to. He had a couple sensory issues, nothing major but we wondered. I made our own referrals and sought our own answers and I refused to not smile for my boy. I cried silent tears, in my car, over laundry, always by myself. I educated myself without google or webmd but, instead with real people in waiting rooms and books that told real life stories and professionals and experts who saw the good, despite the hard. We decided to talk about it and not hide it or cover it. We were open and honest and "ok". Gradually, our circle became educated and aware and accepting. We laugh now that what we didn't expect became, in some way, how we would be defined. We are an Autistm Family. We wear our blue and we light up our world with G as our guide. Two of the people most affected by autism in our world are not Ryan and I, but our older boys. Parker and Carter are advocates of something that is so much bigger than them. They are G's biggest fans and the most accepting and awesome brothers that he could ever have. They really don't remember life before autism. They were just little when we spent hours waiting for G to finish therapy and they often have worked along side us and his therapists to help G reach his next milestone. They laugh with him and help him and they keep Ryan and I sane in the midst of the insane. They hurt when he hurts and they have to sacrifice and serve in ways that we could never have prepared them for. They are compassionate and kind and two of the most important people in Garrett's life and ours. So this blog, kicking off a month of autism awareness, is written mostly by them, from their point of view. 

Recently, the older boys and I read a book that was written by an nonverbal autistic child. It was an easy read and it consisted of  questions about autistic behaviors and common misconceptions, followed by answers from the mind of an individual with autism. It was funny and enlightening and we really enjoyed it. Because of it, I decided to give my older boys a list of questions about autism, how it affects their lives, how they see it, and have them answer from their perspective. Here are their answers...

1. How would you define autism?  Autism is a learning disability that makes G act and think differently than other people. I’ve never heard of a cure, but I have heard that they can diagnose people earlier now.

        I think autism is a thing where you aren’t crazy or anything but that you just have a different way of approaching things which sometimes looks different or weird.

2. What is the best part about having brother with autism?  The best part about having a brother with autism is that he can be super funny sometimes and I never forget a movie quote with him repeating them all the time.
     We get to have cool things in our house like egg chairs, swing chairs, and cool fidgets. Also, we get to do special things like fun club, stepping stones, and sometimes we get to go bowling.

3. What is the worst part about having a brother with autism?  Sometimes people think that I have autism like G. Other times people will tell me that my brother is weird and I kind of get offended.

     The worst part about having a brother with autism is that while he is funny it can sometimes get annoying and he is a little weird to some of my friends.

4. Why do you think G does some of the things that he does (ex. stims, repeats, dislikes babies, etc)?  I think G does stuff-stims because he gets a little overexcited and does that to calm him down. I think G dislikes babies because they are loud and messy, and he finds that very annoying.
     I think he does stuff-stims, repeats, dislikes babies, etc. because he is comfortable repeating movie lines. He does stuff- stims because it calms him down when he gets excited. He dislikes babies because they are loud, they cry, and they do things that G thinks are strange.

5. What do you think is the hardest part for G in living with autism?  The hardest thing for G to do with autism is learning. It is just hard for him.
     I think the hardest thing for G about living with autism is that sometimes he doesn’t understand what people are saying to him and that can make his life a little harder

6. Has Garrett's autism ever embarrassed you?  When I was younger I never used to think G was very weird. I mean he went to a special school and had a bunch of sensory things, but it never bothered me at all, or at least until other kids started meeting G. I swear in my second-grade year I explained autism 20 times and it started to become a conscious thing. But then G got older and all my friends think he is the funniest kid ever.
     G has never really embarrassed me because all my friends know that he is a little bit different.

7. How has autism made you or your family stronger? Autism has made are family appreciate one another better than other families I think.
     I think autism has made our family stronger because it has shown us that sometimes different is a good thing and that we should always treat people with kindness and respect.

8. What are your best and worst memories with G? One of my best memories with G is when he first started to go to school and he met all these other kids and he loved his teachers. One of my worst memories with G is when he had trouble in his second-grade year and we had issues with getting it switched. It all turned out ok, but it was kinda worrisome. 
     My best memory with G was when he asked Parker’s foot doctor the internet password was and said he had no idea. Then G said they needed to work on their internet connection. My worst memory with G was when one time he was clapping, jumping, and making his noise and I heard this kid say, I wonder whose brother he is, I bet he is weird.

9. What hopes, dreams, or fears do you have for G when he grows up? I hope that somebody will not be afraid to take G in as a person as well as an employee. I am afraid that somebody will not take G in because they think he will mess up.   
     I hope and dream that when G gets older he does whatever makes him happy and excels. I fear that some people will turn G away because they fear he will not do well at what they need done.

10. What do you love about G? I love G because he has given me many things in life that no one else has he is just a great person to be around.
     I love G because he makes us laugh all the time.

These boys....Life is full of worries and what ifs and tough times. There are no guarantees or plans or sure things. My boys, though so young and wild and far from perfect, remind me that there is hope and that some surprises are exactly what you never knew you always needed. All 3 of my boys are brave and smart and good. It is a challenge to live with autism, for the individual with the diagnosis and for their loved ones, but it is a worthy, strengthening challenge.  My hope for all my boys is that they always take life as an opportunity to grow and learn and love and, that they are always there for each other, laughing and loving all the while, lighting up the world around them.