Mini-Series Week 4

For the month of November, I am going to try at least once a week to relate to you something about autism that I am thankful for.

For my final mini-series entry, I am thankful that autism has brought us gratitude. It's partly due to a shift in priorities, but it's due largely to newly found humility. Autism has laid bare our strengths, our weaknesses, our fears, and our hopes. Seeing life in that new light has compelled us to gratitude more than ever. Some days it's hard to be truly grateful, but overall, I am more grateful for all of my blessings, in even the smallest details of my life. As a family, we appreciate each other more, we enjoy the little moments more, we see better how blessed we are in our circumstances, and we have come to a richer understanding of God's hand in our lives. My heart has truly been softened and changed to be more grateful, even in the most turbulent times.

Mini-Series Week 3

image LDS.org

For the month of November, I am going to try at least once a week to relate to you something about autism that I am thankful for.

Last week was a bit of a crazy one, so I'll be sure to add one more entry for this series on Sunday.

Today I am grateful that autism has taught me about love. Through autism, my love for myself, my family, and even total strangers has been tested and eventually strengthened. I've seen what unconditional love can do for me and others around me: from giving me strength I thought was beyond my reach, to softening hearts and opening minds. Bug has taught me what unconditional love looks like, because that's the love he gives each of us. I also feel that I have a deeper, though still incomplete, understanding of what God feels for me. Everything I feel for Bug, all I see in him and hope for him, is a small sample of what God feels for each and every one of us. That is a priceless lesson that I will always be grateful for.

Mini-Series Week 2

For the month of November, I am going to try at least once a week to relate to you something about autism that I am thankful for.

This week, I am grateful that autism has taught me about priorities. Parenting is always a game of "pick your battles", but I feel like that's amplified with autism. Do I really care if Bug is dressed nicely for church with a white shirt and khakis, or is it more important that he happily puts on jeans and a t-shirt and actually goes to church? Would I rather have a clean kitchen, or let Bug splash water all over because he needs the sensory input?

My change of attitude about priorities has extended beyond the minor things like outfits and cleanliness, though. I've learned the value of connecting with my kids over connecting to anything else; the value of celebrating every single success and step in the right direction, no matter how small. I don't have lofty goals or dreams for my kids - instead I just want them to be happy and find what brings them joy, not me. In short, autism has showed me what truly matters in the long-run.

November Mini-Series

lds.org

I've been trying to be more grateful lately, and just more positive overall. I'm struggling a little with applying that to autism. I'll be completely honest: sometimes I hate autism. It's hard to see Bug be limited by something totally out of our control. I tend to see autism as a vehicle for opportunities to learn and grow, but have difficulty being thankful that autism itself is a part of our lives. That's a narrow differentiation, but I get stuck on it anyway. 

So, for the month of November, I am going to try at least once a week to relate to you something about autism that I am thankful for. 

Today, I want to start with compassion. Because autism is a "hidden" disability, or something you can't tell someone has just by looking at them, I've learned not to make quick judgments about people. To anyone we pass while we're out and about, Bug physically looks like an average preschooler. Strangers don't know about his sensory issues and his feeding difficulties, or his astounding memorization skills. Just like they can't understand Bug and all his weaknesses and strengths by looking at him, I can't understand everything about a person by one, or even several, meetings. That's why I am trying now more than ever to try and be compassionate and understanding to others around me. Like the saying goes, "Be kind, for everyone you meet is fighting a hard battle" (to which I'd like to add something about how everyone has super powers to help in their battles too). It's something I've always known on principle, but autism has taught me to truly understand and live it.

One Year

Wikimedia Commons

One year ago today, Bug was officially diagnosed with autism.

We weren't surprised. I remember clearly a Sunday months earlier when, instead of participating in church services, we were watching Bug walk laps around the church gym. We were reviewing the few words he had in his vocabulary in preparation to see his pediatrician and talk about the (little) progress he'd made in his development. It was then we both realized that separately, we thought that he might be on the autism spectrum. But that didn't make the day of diagnosis any easier.

I think I didn't anticipate how hard that day would be. I expected I would cry, but I didn't expect to hardly be able to talk about it out loud for a few days. Though we were somewhat prepared for what was coming, you can't ever prepare for the emotions that follow an official, life-changing diagnosis. We resolved to do whatever it took to make sure Bug got the best care we could provide. We spent weeks looking for houses and jobs in states with mandated insurance coverage for autism treatment. We researched everything we could about autism and potential treatments and potential challenges. All of the unknowns threatened to become overwhelming. In one day, our lives turned upside-down.

The first thing I learned after diagnosis was about love. No matter who I chose to share the news with, I just felt love from everyone. There was no judgement, no disbelief, no tension. I remember clearly everyone we told said some variation of, "We love Bug and all of you. We want to support you and help however we can." If you were one of these people, thank you. Everyone's support meant (means) the world to us.

We also quickly learned that although the diagnosis was difficult, it was absolutely worth it. Fear and stigma can surround any diagnosis, especially an "invisible" or psychological one. Believe me, we were plenty fearful about what life would be like for Bug with a diagnosis forever being attached to him. That diagnosis, and sharing it, has been nothing but helpful. We have been guaranteed help and protections under the law. Caregivers have an idea of what to expect and what treatment may work, all because of the diagnosis. 

As silly as it may sound, a diagnosis has been like a call number for a library book. Remember the Dewey Decimal System? The first three numbers always indicate a broad topic. Like language or history or philosophy. Within that topic, the books vary between more specific subject matter, length, and reading level, but they are all related. Bug's call number starts with "autism", and although that doesn't tell you everything about him, it helps give a general understanding of what to expect with him.

We still face plenty of challenges and unknowns. But I can't help thinking about the difference a year has made. Bug tells us about what's going on around him, he shows interest in his peers, his diet has improved dramatically, and we can do things as a family we never imagined we'd be able to do again - everything from going to specific stores and eating out at a restaurant to trying completely new experiences. Discouragement is no stranger, but looking at the bigger picture and every little bit of progress gives us renewed hope. The past year has been a rollercoaster, but rollercoasters are still fun, aren't they?

On "Amazing"

lds.org

We're all admirers. We see people and all the wonderful things they do, especially on social media, and admire them different ways. We may admire someone's decorating skills, another's dedication to a hobby, and yet another person's musical talent. You might find yourself thinking, "She's amazing!"

What about other parents? What makes you admire someone in their parenting skills and declare them, whether you keep it to yourself or express it out loud, "amazing"?

Before I ever had children, I thought all parents with special needs children were amazing. After Bug was born and I quickly learned what a challenge parenting is, that cemented by belief.

Then...I realized I was one of those parents. But even though I found myself as part of that amazing-special-needs-parent-group, I didn't feel amazing. Honestly, much of the time, I felt lousy. I wasn't as patient as I should be. I was still learning all about autism and Bug's specific needs. I thought that because I had a special needs child, I must be amazing, and since I didn't feel that I was, I was doing something wrong - or worse, I didn't deserve him.

My thinking was backwards: exceptional children aren't exclusively born to amazing people. Exceptional children are born to ordinary people, and over time, those ordinary people become amazing. That same principle applies to any hardship or challenge. You aren't given trials because you can overcome them with ease; but because through them, you can improve and learn and grow in ways you could not otherwise (this post is particularly relevant).

It's easy to determine someone's amazingness (however you want to define it) by the challenges they face, if only because we have no idea what we would do if faced with those challenges ourselves. But over the last year, I have tried instead to appreciate people's efforts not by the challenges and trials they face, but by what they do with them. Let's not get into the habit of defining people by their circumstances, but instead by their unique traits that help them make the best they can of any situation in which they might find themselves. I believe it's safe to say that most people are honestly doing the best they know how every single day, in every situation - which makes us all amazing!

Being Open

lds.org

I've been thinking lately about our openness in regard to Bug's autism. Although we kept his process of diagnosis to only people we were very close to, we shared the news of his official autism diagnosis within weeks of it being made. We told our families, our friends, our coworkers, our church congregation...pretty much everyone we saw on a regular basis. We didn't discuss this choice much, but we were in total agreement that it was what we wanted to do.

Not everyone chooses to share a medical, developmental, genetic, or other diagnosis with everyone they know. And that is completely valid - it is a personal choice. I would just like to share our reasoning behind sharing with the world that Bug has autism.

It's fairly obvious that there's something different about Bug. A few people outside of our families told me that they always knew he had some kind of difficulty. Bug's delays weren't obvious to us, due to him being our first child, but the more time we spent around other children, the more we could tell he just wasn't like them. So, we shared Bug's diagnosis both for our and others' sake. 

For us, sharing the diagnosis would mean more compassion from others, and an understanding that Bug's differences aren't anyone's fault or failing. For others, a specific diagnosis makes interaction with Bug easier: they can draw on what they know about autism to help him out and be more patient with him. This mutual understanding was important to us, particularly in a church setting, where kids are generally expected to be well-behaved and quiet - and he wasn't! He also has teachers at church who have been able to help him enjoy his time there better now that they know his individual difficulties.

Some people may think that sharing a diagnosis is the same as trying to excuse behavior. We don't feel that way. We still hold Bug to behavior standards and if things get out of hand, we remove him from a situation, where possible. Others may feel that sharing a diagnosis isn't really our choice to make, but his, when he's older. Once again, we don't fully agree with that. When (if) he's on his own when he is older, that will be up to him. But for now, we'd rather let people know why he's so different from other kids, and autism is such a big part of our daily lives, that it's better to give a word to everything that's going on.

Aside from any practical reasons, we just felt we should share our world of autism with everyone around us. We took a big leap of faith in both sharing the news, and continuing to share our experiences with autism - what if people look down on Bug or us as parents? What if we know people who think autism isn't real? What if they think we are just looking for attention? All of our fears were really for nothing - we have been met with only kindness, compassion, patience, and love this past year. Our act of faith was met with an outpouring of blessings. Though our burdens haven't been lifted, we have many people helping us bear them. The support given to us helps us more than we can express.

Just as Bug has been teaching us as parents about patience, faith, Christlike love, and empathy, we are hopeful that by being open about his autism, he has been teaching so many others around him those same lessons. That alone is, to us, reason enough to share our journey with autism with the world.