Autism Awareness 2014

OUR JOURNEY

Last year at this time one of my Facebook friends was campaigning for her friends to Light it up Blue for her son who had recently been diagnosed with Autism. We were at the top of the ski slope that has been our autism journey. James had received his referral from the pediatrician to be evaluated by the schools but we wouldn't find out that he is on the autism spectrum until the end of October, about six months later.

By the time we were given James' diagnosis we were fully prepared for it. Or at least as prepared as you can be. I was expecting it.

Throughout this past year we have also been addressing a relatively severe speech delay in our younger son, Liam. The organization providing his evaluation and services prefers to start with a few months of intervention before conducting the standardized autism diagnostic test. I have been concerned that Liam might also be displaying some characteristics that are consistent with autism but -- whether to avoid providing a diagnosis that they weren't qualified to make or because they didn't actually see it -- the therapists that he sees have not expressed concerns regarding him being on the spectrum.

Recently we made the decision to start seeing a Developmental Pediatrician, a specialist that we see in addition to our normal pediatrician, who can diagnose developmental delays, help us know how to advocate for our kids in the school system, prescribe medications if the kids wind up needing them for ADHD or insomnia in the future, and this doctor would help provide some continuity for the kids when it come to therapies and delays that need long-term monitoring.

James had his appointment at the beginning of March. We confirmed Autism and something that is basically a pre-cursor to ADHD. Later in the month Liam had his appointment. The doctor diagnosed Liam as being on the spectrum as well.

Honestly we were a little caught off guard. I suspected that she'd find something, but there are so many things he does that are not typical of ASD (Autism Spectrum Disorder) that I really thought there would be some other thing that I'd never heard of. Or that he'd be just outside the spectrum. She basically said that there are things he does that are very "spectrum-y" and other things he does that are very "not spectrum-y" and that we might look back in five years and wonder why we had given him that diagnosis. But right now the diagnosis fits and it should help us get the help and resources that we need to keep him on the right track.

RESPONSES:

And here's the thing. When people hear "Autism" they tend to forget that autism is a spectrum and that kids can fall all across the spectrum. So we often get one of two responses.

The first: "I'm so sorry!" and offers of prayers for healing. And our lives have changed. This is hard. But my kids don't have a disease. If you are a praying person, I beg for prayers that I would have patience and creativity. That there would be peace. And sleep. And good food. That we would have wisdom and discernment as we make choices about therapies and schools. That we would be wise as we navigate IEP meetings and advocating for our kids. My kids just see and hear and feel the world differently than I do and sometimes it's hard for me to know which words to use and which battles to fight. When to discipline and which methods will work. What do they understand (even if James can recite the rules, does he really understand them; and just because Liam can't speak isn't it possible that he understands more than he can say)? When should the day be child-directed and when should it be parent-directed (if my kids always got to chose we'd probably watch tv all day). I honestly don't feel like there's anything "wrong" with my kids, they're just "different" and its up to me and Nathan to figure out how to relate to them so that they can navigate life. Sometimes that's hard.

The second response we get: "But they seem normal". I think when most people say this the sub-text is likely, "help me understand." But I have my own baggage. And while on this journey I've had people tell me (not in so many words) that when I was seeking an evaluation for James that I was trying to avoid taking responsibility for parenting him. This is pretty common for parents of autistic and sensory processing disorder kids. So please do us a favor and say what you mean. If that's, "I don't know very much about autism, can you help me see what you see?" or "I'm not sure what the warning signs of autism are. I can't discern a difference between your child and my child, could my child have autism, too?" Not that I would be diagnosing anyone, but that could be a starting point for a conversation about what it's like to parent kids who are on the spectrum. That way I know that you at least have a foundation for beginning to understand why I turn down invitations to just about anything if its during a time that Nathan is working or traveling (I'll tell you now--my kids don't understand normal safety precautions, they'll grab a knife off the counter to play with or spray themselves with roach spray if they can reach it or put batteries in their mouths; when I'm at home I have a general sense of when I can relax and what I need to worry about but when we're out of our house I'm on high-alert all the time and even then, depending on the setting, I just can't handle it without help from another adult). But if what's really in your heart when you say that they seem so normal is "you're deluding yourself and your kids are manipulating you," then please just don't say anything at all. Instead, observe our kids and how we interact with them. Talk to them and play with them. Take on a learning posture (green line on the Entry Posture Diagram for all you STIMers out there!).

AUTISM AWARENESS

Sometimes I think a movement that promotes "Autism Awareness" can do more harm than good. I wouldn't say that autism is something that needs to be "eradicated" not the way something like Tuberculosis or Polio or even Miscarriage and Still birth do. An "awareness" movement doesn't always promote understanding; it often promotes fear. There's a large group of people who have autism or asperger's who are trying to be adults and they're trying to make friends and get jobs. This kind of "awareness" often isolates adults and makes them feel broken.

On the other hand, I think that parents should be aware of the warning signs of autism. We should be aware that our children or our family members may be affected. And we should be aware that not everyone who is diagnosed with "autism" will look or act the same way. Early intervention is important. Ongoing research is required. But instead of "curing" these kids, I think we need to learn the language they're speaking. I've been thinking lately that my approach to my kids might be similar to the approach other parents who have adopted young kids from other countries take. So many times there is a reason or a trigger for their meltdowns and I have to come put myself in their shoes to figure it out. I have to find new ways of saying things so that they'll understand. I feel like we don't speak the same language and every day I'm faced with a decision: do I railroad them and force them to obey because I'm bigger and stronger or will I attempt to speak their language and learn from them so that we can work from trust and understanding?

Ultimately, their brains are physiologically different than ours. But their value as human beings is no less.

WAYS TO HELP

Most of the time I'm not sure how to ask for help. But here are two practical ways that you can start, 1) Wear blue on April 2 in support of James and Liam and the journey that our family is on, take a picture and tag Nathan or myself when you post it on Facebook or Instagram and give it the hashtag, #TheStoryofJamesandLiam, 2) Ask me about them. If there are things that they do you don't understand, ask me. I'm passionate about helping people understand them because they are pretty great kids and very misunderstood.
If you really want to go the extra mile in support of our family, you might consider supporting Nathan financially as he works in Campus Ministry with InterVarsity Christian Fellowship and he raises all of his salary and operating budget. We're working toward getting him fully-funded so that we're closer to being financially free for me to stay at home. Go to this website for more information on how to do that: http://www.intervarsity.org/donate/to/nathan_white

Thanks y'all, we couldn't do this without you!

Days of Amazing Grace: Lent

We didn't observe Lent in the church that I grew up in. In fact, I remember being in a meeting in Wright Place on ECU's campus with my InterVarsity Staff leader and (I'm a little embarrassed to admit this) commenting that someone had a smudge on their forehead on Ash Wednesday... I was very unfamiliar with traditions surrounding Lent and Easter. All I knew was that my church, in the Christian and Missionary Alliance, did a sunrise service every year on Easter Sunday.

I think once in college I gave up sodas or something for Lent but I really had no concept of why I was giving something up or what was the point of the tradition. To be honest with you I'm still largely unfamiliar with church traditions and the history of Lent. Last year our family observed the Daniel Fast during the last three weeks of Lent, on invitation from our church. The leadership of the church invited the whole church family to participate in the fast and petition The Lord for an answer, breakthrough, or miracle. I personally entered the fast wanting to submit to The Lord my need to justify myself to others. I often seek to justify my actions, motives, and abilities to others and my hope during the fast, was that I would be able to submit to The Lord and allow him to justify me.

My hopes and expectations for the fast would not come to fruition. I got pregnant the day before the fast started and miscarried our baby four days before the fast was meant to be broken. In the last year I have come face to face with the emptiness of my faith and how dependent I was on the miracle at the eleventh hour to prove that the God I serve is good, powerful, and loves me.

I recently read a book, One Thousand Gifts, it was a gift from a close friend who knew that I was unlikely to purchase the book myself but, having read the book, she also knew how helpful it would be for me to read. On the third page of text she says,

Really, when you bury a child--or when you just simply get up every day and live life raw-- you murmur the question soundlessly. No one hears. Can there be a good God? A God who graces with good gifts when a crib lies empty through long nights, and bugs burrow through coffins? Where is God, really? How can he be good when babies die, and marriages implode, and dreams blow away, dust in the wind? . . . Where hides this joy of The Lord, this God who fills the earth with good things, and how do I fully live when life is full of hurt? How do I wake up to joy and grace and beauty and all that is the fullest life when I must stay numb to losses and crushed dreams and all that empties me out?

Ann Voskamp, the author, was asking all of the questions that have been burning in my heart. The rest of the book details her journey of joy. Her friend challenged her to record one thousand gifts, one thousand gifts from The Lord. This book of gratitude has been so restorative for me.

You see in the midst of the deepest, sharpest pain that I've ever experienced, I'm the kind of person who cannot believe that there is a "why?" behind it all. I refuse to believe that there was some good that came out of this pain that made the loss of two babies worth it. I believe that bad things happen to good people. Eventually, bad things happen to just about all people. I know that The Lord is so great a redeemer that he can take even the worst thing I've ever experienced and transform it into something beautiful but I'm unwilling to believe that he would cause that pain for the sake of that good. For the past year, I've felt stuck in that place, unwilling to acknowledge any good that might have come from my pain for fear that others would look, triumphant, exclaiming, "well look at that, there's your answer, Michal, that's why you lost two babies in miscarriage." And if someone actually said something to that effect, it would be very difficult for me to respond kindly.

But Voskamp makes a point. "Who deserves any grace? . . . Why doesn't anyone ask that question? Why are we allowed two [grace days]? Why lavished with three? A whole string of grace days?" And so, my perspective has changed. Now I can say that I am thankful for the marks that Samuel and Cora left on my heart. I am thankful for the time I had with each of them, for the blob-like ultrasound picture I have of Cora that only means anything to Nathan and me. I'm thankful that The Lord allowed my house-of-cards faith to be knocked over so that it could be re-built on a truer foundation. I'm thankful that he has been at work in my heart even as I have remained in pain and bitterness and anger. I'm thankful that he has been patient with me in the midst of my stubbornness.

Lent begins tomorrow and my family will be entering into a time of pain and memory. It has been one year since we lost Samuel and March 18th would've been Cora's due date. There's no way that we'll be able to escape the reminders of the past year. So I felt like this year required a less traditional approach to Lent for me; as our church begins to talk about Lent and Easter, I will choose to engage in a different way. Instead of giving something up for forty days, I'm planning to give thanks for forty days. Each day I'm going to deliberately look for 10-15 gifts and record them in my journal. They can be small and repeatable, like Liam's giggles or sweet-fort-making-moments with James. The point is that I'm looking to the gift-giver and thanking him, everyday for the blessings he gives because they are so many. One day of grace is a blessing. Two? Amazing.