Monday, December 21, 2020

Waiting for Shiro

The last couple of posts I've made, I included a link to a GoFundMe fundraiser to raise money for a service dog. Though I usually keep the kids totally anonymous on the blog, I decided to "go public" for now so that we could tell you about this opportunity.

While I haven't talked about this as much on my blog as I used to, we continue to live with autism (surprise!). Some days that means amazing things, and some days, frankly, are very difficult. (Insert long parenthetical about how admitting some days are difficult does NOT mean I don't love my kids. As far as I am concerned, they hang the moon and NOTHING can compare to their awesomeness. That said, with autism comes a host of real challenges like anxiety, struggles in school, aggressive meltdowns, the inability to manage social situations, depression, and a whole bunch of other things. THOSE are the things that make living with autism difficult.) Struggles with language and social skills means that kids with autism constantly work very hard just to get through the day. I am not autistic, so I don't know what it is like, but I imagine it must be like living in a world with rules that don't make any sense and with people doing unexpected things and making demands that seem completely arbitrary. I also think it must be completely overwhelming for the senses. I don't know about you, but I'm pretty sure I couldn't handle that nearly as well as my kids do.

When Sky was younger, the interventions we did with OT and speech therapy seemed to help. With Stow, similar interventions have not yielded the same result. The two boys are clearly wired very differently. So, we have tried a host of different things with Stow with limited success. If you are a special needs parent, you often find yourself seeking to solve problems even when you don't know all of the variables. That has been especially true with our experience with Stow, and we are always looking for clues. 

Often the clues come from the most unlikely places. Our most recent clue came in the form of new neighbors and the sweetest dog on the planet (the neighbors are pretty great, too). The dog is a miniature bernedoodle called Winnie. She's still a pup but very well-behaved and a huge fan of our kids. The feeling seems to be mutual since every time Stow sees Winnie outside, he insists that we go say "hello" (sorry, new neighbors!). For the first month they lived here, Stow watched for Winnie like a hawk. Given that I'm a bit shy, it was awkward to constantly appear whenever the new family was outside (seriously, I'm so sorry!). One day, after a particularly hard morning, we got outside to wait for Stow's bus just as Winnie came out to do whatever it is that Winnie does in the morning. Stow, who until that point had been saying that he would absolutely NOT be going to school, locked eyes with Winnie, and his demeanor immediately changed. Clearly, Winnie was connecting with Stow in a way that people often don't.

Later that day, I posted this picture of the two of them looking at each other. A friend who has a son with autism suggested we look into getting a service dog for Stow. I responded that I HAD looked into it, and my understanding of the situation was that either Stow wouldn't be a high priority for a dog or that we couldn't afford the cost of one (they cost between $35,000 and $50,000). But, then another friend replied telling me to reach out to her directly, and soon one thing led to another, and we found ourselves on the road to getting a service dog.

One of these pups will be Stow's service dog.

We're working with an organization called Dawgs2Heal that trains and places autism service dogs. We've been selected to receive one of their 2021 trainees and are in the process of raising $10,000 to help pay for the training. 

A few weeks later, and they are all fluffier!
We learned that we will have the chance to name Stow's service dog, and miraculously everyone agreed on a name. We will call her Shiro, which a fairly common dog name in Japan. We chose it because Shiro is Momotaro’s faithful companion (in the well-known folktale), helping him on his long journey to defeat the ogres. We hope and believe that Stow's new service dog will be an equally brave, faithful, and helpful companion. Also, we already have two cats, Momo and Taro, so how could we not have a Shiro?

Momo (R) and Taro (L) have NO idea what is about to happen to them. I felt guilty, so I got them their own castle. Lol.
Lastly, I wanted to share this note that Stow left for Santa. I've included a picture, but since he struggles some with spelling, I will type it out here: "Dear Santa, I know I was bad, but I will love you if you forgive me, and please leave a note. I hope you finish your travel. PS: Love you. You are amazing. I hope you give me good luck for the dog."

This letter is so heartbreaking and heartwarming at the same time. Kids with autism and ADHD struggle constantly with a fear of being in trouble for "bad" behavior. One of the most moving things about peoples' positive response to our service dog fundraiser is that it has shown Stow that there are a lot of people out there who don't think he's bad at all. I would love to give him the gift of knowing we can afford the dog for Christmas. 

If you can share the GoFundMe or donate, we would be forever grateful! We hope and believe that Shiro will change Stow's life! Here's the fundraiser link again.

Friday, December 18, 2020

What Stow Wants You to Know about ASD

Seven years ago, I asked Sky to guest post on my blog so he could tell you what it is like to live with autism. He was nine years old. Stow is 9 years old now, and the post we shared then (link: What Sky Wants You to Know about ASD) could have been written by Stow now. The main difference between Sky and Stow is their preferred medium. Sky expressed himself most in art, but Stow is a video guy. He often walks around the house narrating his life and making videos for his imaginary YouTube audience. Where Sky wanted to become an artist at age 9, Stow wants to become a YouTube star. 

To be honest, I didn't notice the similarities until I came across the old guest post by Sky. But, looking at that post and comparing it to the video Stow made to show his class, it's a bit uncanny. The takeaway? Being autistic is hard and trying to "pass" as neurotypical at school takes A LOT of energy.  

Stow hopes you enjoy the video and that it teaches you something you didn't know about autism. As for me, I hate being filmed, but I'd do just about anything to help my kids feel like they have control over the stories they tell about themselves and their lives. 

Tuesday, December 15, 2020

Ten Years in the Blink of an Eye; Just Kidding, It Felt Exactly Like Ten Years

Ten years ago today, we left Falcon with my parents, loaded Sky into the car, and headed to Riley Children's Hospital in Indianapolis for a day full of testing at the Riley Child Development Center. The appointment was long in coming. For years, we suspected there was something different about Sky. He struggled to engage positively with peers and was oblivious to all the ways that he upset kids and adults alike. He didn't seem to understand what we were saying to him, even though he had an advanced vocabulary, and often he would go from sitting and playing quite calmly to darting around the room or running in circles. It wasn't until he started kindergarten, when I could see just how socially advanced his peers were, that I understood our concerns weren't just in my head. And, when he came home from school one day and begged me to help him figure out why he was not like the other kids, I finally gathered the strength to push for an evaluation.

I still have the report from that day. It's 24 pages long, and the first paragraph ends with, "[His parents] would like a better understanding of the issues which have impacted his social interactions and recommendations to promote his academic, social, and emotional success." Reading through it now, I am amazed by how much is the same for Sky, but also by how much he has changed. Because I have it here in front of me, I want to quote my favorite part. "During interview, Sky reported that his best skills are seeing in the dark and building snowmen....With regard to emotions, he reported feeling happy when Santa Claus comes, never sad, and angry when someone jokes; he believes jokes are true and when they turn out not to be true, he thinks the other person is lying, and 'I hate liars.'" My favorite part is followed by one of my least favorite parts, "His three wishes were: 1) not to be bad anymore; 2) for the Polar Express for Christmas; and 3) not to have problems so Santa will come to town." Some kids wish for video games, a cell phone, or a big stuffed animal, but kids who struggle with autism or ADHD often just wish not to get into trouble.

If you've never received one of these reports, you probably can't imagine how simultaneously heartbreaking and relieving they are. On the one hand, to know that your child has a life-long disability is earth-shattering for a parent. When you get the diagnosis, you realize that the path you thought you were on is vanishing before your eyes, and you are suddenly thrust into a whole new wilderness. But, on the other hand, to finally understand why your child can't understand what you are saying; why he suddenly runs around the room and screams; why it has always taken two adults to parent him instead of one; why everything is so damn hard all the time? To finally have the answers to those questions is life-saving. Sky's autism diagnosis saved our marriage because we finally understood that his poor behavior and his inability to be kind to others wasn't some indictment on our union or on our ability to parent together. 

What happens next, after you get the diagnosis is almost as disorienting as the diagnosis itself. In our case, we received a detailed report of how autism impacts Sky, but we didn't also get a manual about what to do about it. Sure, there were suggestions and explanations of what some of these things meant, but there was not suddenly a case manager at my elbow to help me navigate a complex and generally user-unfriendly system to try to get him services. What you quickly learn is that many pediatricians have very little experience in dealing with autism, and the services you can get are disjointed and with incredibly long waitlists. After Stow was diagnosed three years ago, I kind of knew what I was doing, and I STILL couldn't consistently get him the services he needed. One time, in the SAME DAY, after I'd waited for months to hear from both places, I got a phone call from one place telling me that they thought his needs were too "severe" for them to help and then from a different place telling me that he was too "mild" to receive their services. Another time, after being on a waitlist for a year, I was told that he couldn't he treated there because his SECONDARY insurance didn't cover it. I pointed out that his primary insurance did, but apparently we were already disqualified. Anyway, you get the point.

Ten years ago today, when we walked out into the crisp December sunshine, after a long day of questionnaires and testing followed by a 45-minute comprehensive information dump by the person who was overseeing Sky's evaluation, the world felt the same but also entirely different. I called my parents because they were the only people I knew to call. Then I called my sister who had experience working with special needs kids. She mentioned 504s and IEPs, but she might as well have been speaking a foreign language. My sweet, precocious boy was the same one who walked into Riley that morning. The only thing that had changed was that I now had the monumental task of figuring out what the diagnosis (and all that came with it) meant. 

That night, The Temple Grandin Story happened to be on TV. Somehow Ren had heard about it and thought we should watch it. The timing couldn't have been better. Watching that movie, I understood Sky's sensory issues and distraction in ways I hadn't before. I also understood why he insisted on being squeezed. Most importantly, though, I realized for the first time that we were not alone, and that what we were seeing with Sky was not singularly ours to manage. 

That first night, and many nights after, I lay awake in bed wondering how I would ever figure out what Sky needed and how to get it. But, I also quickly realized that the only way forward was one step at a time. This is the greatest lesson being a parent to autistic kids has taught me; I don't always have to know how to help my kids. I just have to stick in there and keep trying. Eventually they will find their way.

I've written many blog posts, including ones 2 and 9 years after this first autism diagnosis. I suspect I have often thought I knew what I was talking about when I offered advice or insight on what it's like to parent or live with someone who has autism. The longer I am an autism parent, though, the more I am only sure of this: autism can be hard, but it's not impossible, and the best thing we can do as parents is to keep advocating for and supporting our kids. Each of my boys is vastly different. Each struggles due to their autism in very specific (and largely not overlapping) ways. We deal with the struggles as they come. Sometimes they waylay us for weeks or months or years. Other times, the simplest statement or adjustment in how we do or say something can do the trick. I suppose in that way, autism really is like a puzzle. 

So, I want to tell you that no matter what, you're doing great, Mama. You're doing amazing, my autistic friend. You're much appreciated, autism ally. And, to all of you occupational, speech, and behavioral therapists, thank you! Everyone, keep it up! Autism can be hard, but it doesn't have to stop us from a life filled with joy and adventure.

Thursday, December 10, 2020

Happy Birthday, Falcon!

The fiercest girl I know is turning 13 this week. We used to call her Pink on this blog, but she has stretched well beyond the limits of such a diminutive name. I asked her what she wanted to be called instead, and she said, "Falcon, no, Dragon!" and then settled on Falcon, so that is what I shall call her.

One of Falcon's dragons.
When I found out Falcon was going to be a girl, I have to admit that I panicked a bit. What if she liked pink, and princesses, and ballet? What if she wanted to play with dolls and have tea parties? Boys I could understand, but girls? I wasn't so sure. 

In her earliest years, I did my best to limit her exposure to all the girly-fied clothes and toys, but she still came home from daycare wanting to wear sparkly shoes and live in a castle. It wasn't that I thought those things were bad so much as I simply worried that I wouldn't be able to relate to a kid who liked them. Looking back, I know how stupid I was. As a parent, I can do whatever I can to try to ensure the kids have access a wide range of ideas and beliefs and they will still pick and choose what makes the most sense to them based on a whole bunch of different influences, some of which I simply can't control.

So, I let Falcon wear princess dresses and sparkly shoes, and she accumulated so many pink things over the first several years of her life, it looked like a unicorn had barfed in her closet. Once, when she was 3 or 4, she tried to get me to buy her duct tape and feminine pads because both were pink, and it didn't matter WHAT they were used for. Lucky for both of us, I put my foot down when she wanted to paint her room in our new house pink (we went with pale yellow) because eventually, she stopped liking pink. She stopped liking it so much that if an article of clothes or a notebook cover or anything else has even a hint of it, she will refuse it on the spot.

When you're a "neurotypical" kid coming after an older sibling with autism, life can be challenging. For years, poor Falcon couldn't cry when she was hurt or upset because it would trigger her brother Sky, making it nearly impossible for us to comfort her. On her birthday, Sky would become so anxious and dysregulated, that he would insist on "helping" her open her presents and then "showing her how to use her toys" before she even had a chance to play with them. Often she had to sit and patiently wait for him to finish playing with her new toys before she could try them. She spent much of her early years catering to her older brother's needs--sitting in waiting rooms at therapy sessions and ALWAYS playing what he wanted to play exactly how he wanted to play it because he had so little capacity for flexibility.

Then along came Stow, who bookended her with even more autism, and before any of us could catch our breath, Ren's spine went south.

Last winter, when Ren was still recovering from spine surgery number seven, I tried to get the kids to help me put out the Christmas lights. Before he could even get out the door, Sky started obsessing about all the things we might do wrong, got overwhelmed, and shut himself in his room to play computer games. Meanwhile, Stow came outside with a shovel in his hand and started digging small holes in the yard. But, Falcon? Falcon was there steady and ready to help. I told her I was sorry that this was how things were, but looking at her and thinking about all the ways she has stepped up over the years, I knew that we could build one hell of a matriarchy, the two of us.

More Falcon art.

Falcon is fierce because when Stow has a meltdown, she runs toward him and not away from him, even though we've asked her a thousand times to focus on protecting herself. She runs toward him because she knows she can help calm him in a way no one else can.

And more...

Falcon is fierce because she never, ever backs down on what she believes is right, and she will go to the mat for a friend or even for someone she doesn't know all that well if she thinks they need a hand.

But, maybe most of all, Falcon is fierce because she is the most empathetic and sensitive person I know, and instead of trying to hide her feelings or toughen up, she continues to look for ways to be herself and express those feelings. Lately, that has meant that she writes and illustrates the most fantastic stories about warrior girls who go on amazing journeys to save the weak and mistreated. Her empathy reaches beyond humans--I've never met a cat or dog or horse that didn't immediately love and respond positively to her. 

Most mornings I come out to find Falcon reading or writing surrounded by the cats.

Falcon is fierce, and to me, she's also just a little bit magical. In our world of concrete, black and white thinkers who can sometimes take language way too literally or just a little bit wrong, Falcon has a knack for knowing the very thing I will think is funny. We have a long list of past moments with the boys that we remind each other of when things are a bit too intense around here. The other day, for example, out of the blue, Stow said, "My balls reflect better than anyone else in my whole class." Needless to say, it took us a minute to figure out that he was talking about his awesome goalie skills in soccer (He meant to say, "I deflect balls better than anyone else in my class.") Sometimes she just has to say a single word, and we're both rolling on the floor. Falcon also always mixes the pancake or waffle batter on the weekends, comes up with more baking and craft schemes than I ever could, and is the first cheerful face I see every morning. I honestly don't think I could be luckier.

As you're going about your business this week, please send some positive vibes for this amazing girl so she has an amazing birthday free of brotherly meltdowns!

Falcon's picture of Stow's favorite panda.