SPD, Interoception, and Figuring Out Whether a Kid Is Really Injured

In my previous post I wrote about how since Stow always thinks he has broken a bone whenever he twists an ankle or stubs a toe or a finger, we have a difficult time knowing when something is actually serious. This isn't because he is trying to get attention or be melodramatic but because, thanks to sensory processing disorder (SPD), he is hypersentive to touch and also has a heightened sense of what’s going on inside his body (this sense is called interoception). Typically, we have to wait to see how he seems one or two days after any kind of injury to determine whether it requires medical attention.

After taking a baseball to the tip of his middle finger on Wednesday (you know, when I refused to go pick him up because we wanted him to make it through a whole week of school), we waited until Thursday to see how he was feeling. When he said it hurt more, and he felt like he could feel a bone moving 🤢, I called to make an appointment.*** By the time we finally saw his regular doctor, the X-ray technicians had gone home for the day, so it took another day to get the x-ray and results. Late Friday, they confirmed it was broken.

He loved that the X-ray technician told him to “give her the finger”--lol.

The orthopedic doctor's office told me they couldn’t get him in until Wednesday. An autistic kid with a hyper-elevated sense of interoception and a good dose of anxiety who now knows his finger is broken can NOT wait an additional five days to have his injury treated. Just, no.

So, today we went to the orthopedic walk-in clinic in another town and got a diagnosis and the appropriate splint. Fingers crossed that this won’t require surgery (and, yes, I’m aware of my bad pun—sometimes I just can’t help it).

Fortunately, Stow finds humor in the fact that he will be “flipping people off” for the next six weeks because I’m having less fun with this. In fact I’m about ready to never let him leave the house again, at least not unless he’s wrapped from head to toe in bubble wrap.

***If you are wondering why I didn't just take him to the ER: 1) He doesn't like change so wanted to see his usual doctor, and 2) Waiting can be really hard for autistic kids, and I didn't want to add the stress of an interminable ER wait--of course, if we thought it was an injury that required immediate attention, we would have taken him anyway, but since we had it splinted, and he wasn't in excruciating pain, we waited.

Another Call from the School Nurse

When the school nurse called today, she led with, "This time it's not his head" before proceeding to tell me that Stow suffered a jammed (and hopefully not broken) finger when a softball hit his hand during PE. Like the day of the second concussion, the call came when Ren and I were out together. Since Ren and I rarely go out together especially during the academic year, the timing of the call was unsettling. We all, the nurse included, have residual trauma from what has gone on this year.

Stow insisted on talking to me; his voice told me he was struggling to keep it together. He was sure his finger was broken and, even if it wasn't, that he needed to come home because there was no way he could focus in class. I reassured him. Told him the nurse would give him ibuprofen and ice and tape his fingers together and that I would call and check on him. He did not like this solution, but he agreed to it.

When he got home, the three middle fingers of his left hand were taped together with a small ice pack incorporated into the mix. Bless the school nurse. She knows and cares about Stow and can speak his language when he is panicking about an ailment. Stow often thinks his bones are broken, so we will wait until tomorrow before deciding about prompt care. 

Random picture of Bunny Pearl because I couldn't find any other picture would make sense with this post.

Last week, it was consecutive jolts to the head (again in PE) when the basketball came at him faster than he expected it to. Since that led to a headache and nausea, Ren picked Stow up early just to be on the safe side. Concussions and concussion recovery are tricky. 

Having an autistic kid who greatly prefers being home playing video games is also tricky. Once he gets sent home by the nurse a time or two, Stow is much more likely to think he needs to come home if he isn't feeling 100%, and with two concussions under his belt, he often isn't feeling in peak condition. Telling Stow I couldn't pick him up today was hard. I didn't know (and still don't know) if Stow's finger was (is) broken or not, but I knew he needed to stay at school if he could. We've got to get him through a full week of school.

There is no point to this post other than to say we are still here and still making our way through the confusing world of middle school for Stow. The smooth sailing we experienced from the start of school until the first concussion in late October is a distant memory. Just when he seemed to be hitting his stride again, the second concussion happened. Now we struggle to get him to school, to keep him at school, and to help him focus on his school work. He has lost a lot-- his chance to participate in his first bowling season, a band trip to Six Flags, recess, PE, band, his confidence, his memory...

Completely unrelated picture taken by Sky of a train in downtown Chicago. 

Following the second concussion, we had to take some steps I never thought we would have to (I am being intentionally vague here for, you know, reasons). Up until the second concussion, I believed that all of the advocating and educating I was doing ensured that Stow would get the support he needs at school. I mean given all the of 504 and IEP meetings I've attended, I should be a pro, right? But after seeing the way the school handled the second concussion, it became exceedingly clear to us that the school STILL doesn't know how to effectively support and accommodate Stow. As one of his therapists put it, "They treat autism like it's a behavioral issue when they should be treating it as a developmental delay." 

I can't even count how many times Stow has been disciplined for a behavior directly tied to his poor social skills. And I also can't count the number of times I have been told that he needs to be disciplined so he will learn his lesson. Round and round and round we have gone on this as I have repeatedly explained that the lessons Stow learns from the problems in peer relationships are simply not the same as what his neurotypical classmates learn. And over and over I have asked for two things: a full-time autism specialist on staff with the school or the district and constant line of sight support for Stow. To the first request, I have been told either they can't afford to hire an autism specialist or they can't find someone to provide autism support. And in response to the request for more intentional supervision/support, that Stow is fine and doesn't want to be followed around by an adult. If these two things had been in place, we are fairly certain we wouldn't be talking about concussions right now.

Guess what happened almost immediately after I told the case worker we were working with a special education lawyer? The district hired an autism specialist who will start in the fall. And, the conversation about line of sight supervision shifted from whether he needs support to how they could provide it in ways that would be the least disruptive to his efforts to socialize appropriately with his peers. For the first time, folks on his IEP team acknowledged that THEY DON’T ENTIRELY KNOW HOW TO MEET HIS NEEDS and so want to base future decisions about his accommodations on what the autism specialist advises. OMG, you guys, I have been trying to get them to do this for YEARS.

We can't really afford a lawyer, and I don't believe in being litigious, but if the end result is better support for Stow and all of the other kids like him, then it's worth it.

Shattered

Sometimes when I sit down to do a blog post, it writes itself. Other times, the story that needs told can't find its way out of my head to the keyboard. This is the latter, so bear with me as I wrestle it to the page. And know going in that I am not going to be able to tie this up into some kind of neat parable or object lesson.

*****

The day before I flew across the country for a four-day conference, the school nurse called. I don't know if you ever get calls or emails from school, but they often start with "First, I want you to know that [child] is fine." Or, they don't. And in our case, when they don't, I know I am about to hear something that will upend my day. This call started with, "I'm really sorry, but I have bad news." I braced myself and would be lying if I said my first thought wasn't a combination of panic and the word"f#ck." Because it was.

Ren and I had just pulled into the Target parking lot to pick up things I needed for the trip, and before the nurse even told me what had happened, I knew my day was going to go sideways fast. (My motto isn't "Every day goes south in its own way." for nothing). 

Stow had gotten another concussion. This took me a minute to process. What did she mean? What did THIS mean? How could one kid be THAT unlucky? The nausea set in after I pressed for details. All she knew was that he was hit in the head in PE, but I could tell from the way she said it, that he wasn't hit in some kind of sport accident. I asked her to put Stow on the phone. Stow told me that another boy had hit him. I asked if it could have been an accident. He said, "No, he punched me in the head." 

Now, I can't tell you more than that about what happened because of a lot of reasons I can't go into.

Ren and I quickly finished our business and got to the school. Going in I told Ren I wasn't leaving until I talked to the principal or vice principal. We went to the nurse's office to find Stow, and the nurse told me the results of her concussion evaluation. Stow had all of the symptoms he'd just spent two months getting over--headache, sensitivity to light and sound, nausea, foggy thinking, and dizziness. He was terrified that the second concussion might cause permanent damage and cried when he recounted what happened. Heightened emotions are another sign of a concussion.

Ren and I waited with Stow through the end of the principals' lunch duties and a fire drill (!!  !!!!). Finally, maybe 45 minutes after we got there, the vice principal came to talk with us. I can't tell you what we discussed. I can tell you that Stow went home and to bed, and I talked to his primary care physician and then to the pediatric neurologist we now have as part of his extensive support team. They both told us to keep an eye on him and to put him back on concussion protocol. 

The next day, I flew to the conference that I just couldn't skip, and Stow missed school. He spent most of the next few days in the nurse's office trying to deal with the headaches, nausea, dizziness, and inability to concentrate. Over a week out, he still hasn't made it back to all of his classes. He had to drop out of the bowling team, and he has spent hours with therapists talking about what happened and how to deal with it. I have spent hours talking to various people about what to do.

*****

The day the he got the concussion, Stow was wearing a brand new pair of shoes. He hasn't put them on since. He says they are bad luck. The shoes are the thing that is most noticeable on the grainy video of the incident--the only way I could find him in the crowd of students. Now they sit in our garage, something he was so excited about and is now afraid to wear.

*****

Recently I shared this blog with someone interested in a parent's perspective on raising autistic children. As we have traveled on this path, I have become much more sensitive to my position in this whole thing. I am not a victim. My kids are not broken. They do not need to be fixed. But, and this is a HUGE but, being a "neurospicy" kid in an ablest world is tough. And, watching my kids struggle through this breaks my heart in ways I didn't even know it could be broken. 

Yesterday we saw the video of what happened, and it absolutely shattered me. The incident was hard enough to watch, but what happened after is what undid me. Stow looked so absolutely alone. I could see him at a loss for what to do, searching in vain for someone who might have seen what happened and who might be able help him.

It made me never want to let him leave my side ever again.

Their journey isn't about me. I get that. But, man.

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. 

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.

Slow Learner

I know I haven't posted in awhile. After 475+ posts, it seems I no longer know what to say. I mean, I want to encourage you, to inspire you, to tell you you're not alone, to make you laugh. But, man, we're struggling right now. We have been for awhile. Way too many years into this autism journey, we still find ourselves a bit lost.

What do we do when the therapies don't quite work? When behavior gets so out of control it disrupts the whole family? When all of our skills just don't quite seem to be enough? These questions (and many more) and their seemingly unknowable solutions clatter around inside my brain, like the spinning of a thousand tiny hamster wheels.

All the hamster wheels in my head, in graph form.

I'd like to say that all these years with autism, food allergies, spine issues, and the mental health stuff have taught me how to be more "zen" about the things I can't control. But, honestly, I get through most days kicking and screaming. Trusting the process, going with the flow, adopting an attitude of acceptance, having a beginner's mind--whatever you want to call it, I'm pretty bad at it. At this point, I am convinced that all of this is meant to help me grow as a person; the problem is that I've always been a slow learner.

When the second diagnosis comes six years after the first and you find yourself once again parenting a newly-diagnosed kindergartener, you might think you have enough experience to actually know what to do next. But, no two kids are alike, autism or not. Whereas Sky broadcasted his impending meltdowns by an ever-quickening agitation that turned him into a human pinball and tumbled out in a tsunami of words, Stow has always struggled to communicate what's happening inside him. So, when the triggers come (and it appears there are many), he panics and fight or flight mode kicks in. Without going into too many details, I'll just say that it is physically and mentally exhausting to help Stow figure these things out while keeping everyone safe. It has also become more and more clear to us why the average life span for people on the spectrum is half that of the general population. The ways in which Stow can find himself in precarious situations never cease to catch us a bit off guard.

These signs around the house remind Stow of his other options.

So, at OT, we work with Stow to identify when his heart rate has quickened and his body feels out of sorts and to help him understand how his body moves through space so he's less likely to break things or run into/over people. At speech, we work with him to develop the ability to access the words he needs when his body and his brain are telling him to panic. The behavioral therapist helps Stow untangle his big and confusing emotions. Karate gives him a highly-structured environment where he can practice hearing, processing, and then doing what is instructed. His school IEP team has doubled down on support, keeping an aide close, especially in unstructured times, and switching him to the "short bus" to help relieve the social anxiety those long minutes on the bus can cause.

First day on the "short bus."

At home, we have been sticking as close as we can to the gfdf diet and striving to have as little change as possible. We've all but stopped taking trips longer than an hour and try to keep every day exactly like the last. When we do have things to do, we talk about them in advance and make sure he knows exactly what to expect.

Ren's spine pain returned a few weeks ago, along with several troubling new symptoms. Surely the meltdowns and the stress are part of the back problem, but it's a catch-22. Because, once the spine goes south, so does Ren's mood, and our routine, and the overall ability for the household to stay on an even keel. Ironies abound as I continue to learn how to support him, too.

I don't suppose I'll ever know how we ended up with our particular constellation of challenges. As a person who looks for meaning in everything (I'm a literature professor, after all), learning not to ask why and simply to embrace this chaotic mess of a life is surely the biggest and most important lesson I will ever learn. Here's hoping I "get it" sooner than later!

Order in the Chaos

During Stow's final autism evaluation last month, the doctor told me that after seeing so many families living with autism, she's come to the conclusion that parenting with autism is just like regular parenting, only magnified by about 1000. I don't know if this is true; I can only guess what it's like to parent in a family not impacted by ASD. What I do know is that life continues to be INTENSE.

Some things are actually a little better, though. The biggest improvement? After working with therapists for what feels like an eternity, we have finally managed to help Stow get the hitting under control. This doesn't mean that various forms of bodily contact aren't happening--Stow has adopted the practice of aggressive hugging when he's frustrated. Aggressive hugging consists of using his face and shoulders to push me backwards like a sumo wrestler while he simultaneously shoves his hands into my pockets and/or yanks at my shirt.  It's still not ideal, but it sure beats the months and months  of getting pummeled. Change takes time.
 

Autism isn't the only ongoing challenge at our house. It has been 7 months since Ren's last surgery, but at this point, I can't tell if we are post-op or pre-op. The back and leg pain have returned, and the shoulder pain is slowly but surely ratcheting up. In practice, that means there are days when Ren can't do much of anything, when he looks a lot like this:

Man down.

Honestly, life's not easy. It can be hard to cope with all the chaos. And, sometimes I just need to be able to control what I can control, even if it's just a little thing.

To that end, I bought these for the kids in hopes of making it easier to prep and pack three lunches EVERY. SINGLE. DAY.

Lunch boxes lined up and ready to be filled.

Thanks to these fancy insulated lunch boxes, we can now send the kids with hot food that will still be hot(tish) at lunch time. Suddenly, the tedium of the morning feels slightly less tedious. When my alarm goes off at 5 a.m. after I've been up late catching up on work or awakened in the night by Ren's cries of pain, thinking about what new thing we can put in the kids' lunches helps me face the day. I know it sounds strange, but there's something soothing in knowing that I have control over this one thing.

When I first posted pictures of the lunches on FB, friends were amazed by how fancy they seemed. To be honest, most of it is leftover dinner. Soon I started posting descriptions of all the things that were going wrong while we made these lunches--from kids not eating, to meltdowns, to insane conversations, to Ren being laid low by pain. Maybe everyone is tired of hearing about and seeing the lunches, but for now, they are order in my chaos...

Here's a photo retrospective of recent lunches. Hope you enjoy it!

Fried rice with miso soup

Gyudon (beef on rice) with egg soup

Pork cutlet with egg soup.

Chuka-don

Ginger chicken and burdock root

Curry

Oden

Ginger pork

Beef teriyaki

Potato and bacon soup

Okonomiyaki

Sukiyaki

Rolled egg with chicken nuggets

Omuraisu

Kani-tama don

Meanwhile, Sky....

The siege of 2016 continues as we wait for Tuesday to come and for Ren to have his follow-up appointment with the spine surgeon. Of course, it only feels like everything has ground to a halt. For the past two weeks, life as been full-steam ahead with work and school even if we are all still spending more time than usual cooped up together. 

All this togetherness continues to teach me stuff. A few days ago, I posted this to the Facebook page:

Something amazing happened last night. Sky barged into our room and interrupted a conversation Ren and I were having (happens all. the. time.)

Me: Wait. 

Sky: Mom, Mom, Mom, Mom. 

Me: (holds hand up to remind him he has to wait) 

Sky: (fidgeting, dying to talk, but still waiting) 

Me: (stopping my conversation because he's too distracting even if he is technically waiting) What do you want, Honey? 

Sky: Ok. First, you know when frogs are babies...? 

Me (interrupting him, exasperated): Sky, do you really need to interrupt the conversation I'm trying to have with Daddy to talk about frogs right now? (What the heck?!?! He was playing cars with Stow when I left him five minutes ago. How in the world did he get on frogs so quickly?) 

Sky (pauses, then says half to himself under his breath): Okay, that one I can save for later. (Then, looks at me, and says): Second, can we watch the fourth Harry Potter movie tonight? 

Me: (dumbfounded)

I mean, sure, he didn't need to interrupt our conversation to ask about watching a movie, either, but HE WAS ABLE TO REFRAIN FROM TELLING ME SOMETHING DESPITE THE FACT HE HAD ALREADY STARTED TO TELL ME AND HE CLEARLY WANTED TO TELL ME.

He's 11. That's the first time this has ever happened.

At the risk of going on too long in a Facebook post, I didn't describe the singing of the heavenly hosts that echoed through my head in that moment when Sky actually restrained himself. I also didn't go into excruciating detail about all the times he starts any conversation as soon as he steps into the room never taking a moment to assess whether people there are busy or talking or sleeping. He is getting better at things we've been working on, and we do have a long way to go. But, I wrote that post because I realized that with the chaos of parenting three kids while also nursing a spouse through his fifth spine surgery, I sometimes forget to celebrate these moments that highlight how Sky is slowly but surely coming into his own.

Sky (b. 2004 -   )
"Untitled," 2015
Mixed media
Courtesy of the artist (found under the seat of the car. And, for what it's worth, the egg fell from the carton....)

A few days before this post, as I wrote an e-mail to a mom with a recently diagnosed three year-old, I realized that it's getting harder and harder to remember just how much we didn't know five years ago when Sky was first diagnosed. Don't get me wrong. It can still be a challenge to manage some of the sensory and social skill challenges that are a part of our everyday lives. But, as I was explaining to this mom about OT, PT, speech, ABA, IEPs, and the benefits some folks experience with dietary changes, I suddenly felt very grateful for just how far we've come and for all the many people who've walked with us on this journey.

I ended my e-mail with this reminder. It's something I've told myself a lot over the past five years, but I'm not sure I really believed my own advice until recently: 

I know this is all probably overwhelming, but my biggest advice is this: Don't panic. Take it one step at a time. Gradually implement therapies and/or dietary changes as you are able to handle them. Never feel bad about not doing enough soon enough. You'll keep learning and figuring things out as you go. Do what you can when you can. You are your child's biggest and most important advocate. That can feel like a lot of pressure, but as long as you are taking care of yourself and doing what you can as you can, you will get there.

I Feel Like This

This morning, I snuck into the shower for about 7 minutes while the kids were finishing breakfast and getting ready for the bus. When I got out, I found this:

Sky had folded it into an airplane and slid it under the door. I threw it away (since I am always finding airplanes lying around but never notes folded into airplanes). Fortunately, Sky persisted until I saw it.

And it kind of blew my mind.

We are making progress. It's slow and it's usually ugly, but we are definitely getting somewhere.

This Totally Made My Day

This is Jack. He's the son/grandson/nephew of old friends of mine. He's also nonverbal and autistic. His parents hadn't heard him produce language unprompted in the more than seven years since he stopped talking (when he was one). Earlier this week, they heard him repeating this phrase and thought it was just gibberish. And, then they listened closer and realized he was singing Katy Perry's "Roar." How awesome is that?

I don't know about you, but Jack has totally made me a Katy Perry fan.

Oh, and if anyone happens to know KP, please introduce her to Jack!

Follow-up 11/15/13:

Jack's story has made it's way to the national news. Still no word from Katy Perry, though.

Click here for the article about Jack on Today.com.

What I Hate About Moving, Part I Have No Idea...

Okay, so I totally did not mean to leave you hanging. Ren is fine, aside from the random facial swelling that comes and goes and always responds to Benadryl. Is anyone else married to someone who has allergic reactions to major changes? I'd feel better if you said you were.

Since my last post, we packed, I lectured for two days at a seminar miles from home, we packed some more, and, then, we moved. So, here we are, and I've managed to let several perfectly good blog posts pass me by in the process.

I think I'll try to pick up where I left off: what I hate about moving. The biggest thing I hate about moving is change. As a kid, I wept at the end of each school year. I mean, how could anything ever be as awesome as Mr. Mills' fifth-grade homeroom? (For the record, I was right about fifth grade. My sixth-grade class was full of delinquents who did things like remove bricks from the bathroom wall during restroom break. Do you know how excruciatingly boring  it is to sit through an entire afternoon of rebukes and explanations as to why such behavior is inappropriate?) Turns out Ren also stinks at change, so you can imagine what sort of children we've spawned.

Sky's last speech appointment, which was also his last visit to the children's therapy center that has been a second home to us post diagnosis, did not go well. I'm sugar coating here. A more appropriate description would be that it was one of the most hellish 45-minutes I've ever spent. Ever. The therapist wanted to spend ten minutes creating social stories for the move before shifting into free play (in celebration of Sky's last day there). He would have nothing of it. Instead of 10 minutes of work followed by 35 minutes of play, we had 45 full minutes of meltdown, which included but was not limited to the following: screaming, crying, fleeing, kicking, knocking over chairs, and yelling at the therapist. It was awesome. And by awesome, I mean, utterly heartbreaking. For everyone.

Forty-five minutes is forty-five minutes. And the therapist had other appointments, so the session ended with me sitting on the floor holding Sky in a bear hug to help calm him. Of course, before we left, both the therapist and I reminded Sky that sometimes his choices (in this case, adamant refusal to do what he's told) lead to unpleasant consequences (in this case, the worst ending to anything ever). After all of the positive experiences we've had there, it was a crappy way to end. It made me cry. But that's the thing about moving: there never seems to be enough time to lament your losses.

Ninety minutes later, I was on the road to my lecturing gig. By the end of my two-hour drive, I had a sinus infection. Because, of course I did. This ensured that all of us were sick just in time for the move that took place the day after I got back from my trip. If you're wondering why I scheduled the move right after a three-day business trip, you obviously don't know me at all.

Of course, part of the problem was that the movers started loading the truck a day earlier than planned. Between the removal of a couch and two love seats (which we sold) and the sudden invasion of strange men who insisted on putting all of our things into boxes, the kids lost it very early in the moving process. Fortunately, numerous friends swept in to help. They took the kids to play, helped pack boxes, kept me supplied with Diet Coke, drove our trash away, and treated us to our favorite Thai carry-out for lunch. On the second day of the move, two friends even showed up at 6:30 in the morning to help with the final packing push before the movers arrived. Thanks to the help of many, we survived the move.

*****

Okay, since I have no idea how to properly end this post, I'll leave you with a picture.

How do you keep a kid from freaking out during a move? Lots and lots of Scribblenauts. That, and giving him something to do. Here, he's guarding the truck while the movers are at lunch. Potential thieves don't realize they could steal every single thing from under his nose and he'd never realize it.

Maybe it's fitting that I don't know how to end this. You know in the movies when they disintegrate something into a million tiny particles and shoot it across the room/town/world/galaxy before it's reconstituted somewhere else? And you know how sometimes in the process of putting all the pieces together, some of them get scrambled, wreaking all sorts of havoc? Well, moving is a lot like that for me. I guess I should just be happy I managed to write anything at all.

What I Hate About Moving, Part 2: Packing with Children

You'd think since we've moved so many times with children that we'd have some kind of system figured out by now. We don't. Maybe we should try to quit moving when one of the kids is a toddler. Everyone knows that a toddler's goal in life is to create as much chaos as humanly possible in any given second.

When Sky was a toddler, he managed to lock all of the suitcases and change the combinations. It took us a full day to get them open again. When Pink P was a toddler, she liked to unpack whatever we packed which resulted in the entire family nearly missing the last possible bus to Narita Airport for our flight back to the U.S. In the end, a friend, one of the other moms from Sky's preschool at the time, had to run with us, dragging along part of our stuff all while carrying a baby strapped to her back. Incidentally, not long after that, we lost touch with that friend, and I can't help but think she dumped us when she realized how just disorganized and incompetent we really are. For the record, she's never moved with a toddler.

This time around, Stow is our toddler, and his game is climbing into Every. Single. Box. I. Try. To. Pack.

Don't let that pensive look fool you. He's probably contemplating the various ways he could take over the world.

Ooo, Mommy's winter clothes sure are comfortable.

Sure, it's cute. But, here's the thing. When there's a baby in your box, not much else fits. And when the baby gets out of the box, he likes to take whatever he discovered there with him. And, sometimes he even likes to destroy the box. Problem is, when he's not in one of my boxes, he's up to something even more dastardly--like climbing onto the stool in the kitchen to reach the drink sitting on the back of the counter and pouring it all over himself when trying to look inside and then running through the house yelling, "Yucky, Mommy!" drawing me from the room where I'm packing and tricking me into thinking that the yellow "yuck" on his shirt is potty (even though I'd just changed his diaper) when it's really watered-down green tea.

So, yeah, packing with toddlers, not so fun.

But it's nothing like trying to help my ASD kid navigate another big change. Just recently, Sky seems to have realized we are going to move. The speech therapist, bless her heart, thought that with a month to go, now would be a good time to start working through various scenarios for moving to a new place and meeting new friends. It makes sense, only, when you give Sky an entire month to anticipate something, it never goes well. During the session, she tried to get Sky to think about some of the challenges that he might encounter when we move. Nothing doing. Apparently, he spent their entire 45-minute session repeating, "I don't want to talk about this. I don't have to talk about this. My mom said I could use the computer" (for the record so not true). He fidgeted. He refused to make eye contact. He became belligerent. And, he managed not to answer a single one of the therapist's questions.

The worst part, of course, is that now the move is squarely on Sky's radar. So, he's flipped out. It's not like this is new news to him, but now it's real news. The lack of structure is palpable and nerves have set in. And it's not pretty. He spends a lot of his time bouncing around like a pinball with no friction to slow it down.

Three and a half weeks to go. Heaven help us.

Epic Summer Saga 3: How Can Video Games Lead to Meltdown? Let Me Count the Ways

Any parent to boys, especially boys with Asperger-ish tendencies, knows that video games can be a blessing and a curse. Nothing short cuts sensory overload and anxiety-induced meltdowns quite like a screen full of computer graphics. Then again, nothing can trigger a meltdown quite like my kid's obsession with games like Mine Craft.  Just over a week ago, Sky got an upgrade on Mine Craft. Things have been hellish ever since. Here's a list of meltdown triggers since then:

1. Four words: revert to factory settings

The day after Sky got his upgrade, his Kindle Fire inexplicably uninstalled itself. Apparently Sky had no idea something like this could happen. How could technology fail him so? Oh, the horror! Oh, the injustice! Oh. My. Gosh. I've never seem him meltdown so quickly and so thoroughly as he did when he turned on his Kindle to discover a black screen.  The apps, the books, the everything? Gone. Pfft. Vanished without a trace. And he was inconsolable. In the end, I had to promise him a day of unlimited play time once the Kindle was fixed (thus setting myself up for the next major cause for meltdown...) just to keep him from hyperventilating.

2.  Kindle Free Time

Do you guys know about this app? You pay $3 a month, and then you get access to tons of free kids books, games, apps and movies. More importantly, though, you get the ability to set usage time limits. We love it. Sky, not so much. Sky's Kindle is set to allow unlimited access to books, but his app usage is limited to an hour a day in the summer. Ironically, we thought putting Free Time onto Sky's Kindle would help eliminate the constant negotiations we endured when he played the DS.

Ah, nope. According to Sky, using Kindle Free time = torture. He even polls his friends to see if their parents are as mean as we are. According to Sky NONE of his friends have limits set on their gaming. This may actually be true. I've asked several and only found one other parent who seems to have some means of controlling how much her kid games.  Maybe those kids don't get as obsessed with games as mine. Maybe their parents don't care how much time they spend glued to a screen. I'm not sure, but I do know that Sky thinks we must be the meanest, most strict parents in like ever.

Major meltdown number two came when I told Sky he could only play for three hours the day after Ren fixed the Kindle instead of the initial all day I'd originally promised. See, I figured it would take  Ren a couple of days to get it fixed, but actually, it only took an hour. So, the next morning, when I gave the Kindle back to Sky, I explained that he would get three hours instead of the usual one since he'd missed play time the day before. Silly me thinking he'd adjust to the change, thinking he meant it when he said he understood why the daily limit was (an incredibly generous) three hours. Silly me, when I was shocked by his meltdown.

3. Taking Away the Device

After two consecutive days of meltdown, on the third day, I suggested that he take a break from his Kindle.

Meltdown.

I mean, I didn't even have the chance to talk him through the pros of giving it up for a day or two. Ren and I were headed out of town, and I knew I couldn't leave a highly meltdown-prone Sky with my parents. But, I also couldn't give in and give him his Kindle after such bad behavior the days before. So, I told him he could play his DS a little.

And, he played non-stop pretty much the entire time we were gone.  I don't know about you, but when I leave my kids with someone else, I don't expect them to strictly enforce all of our rules, especially the ones about how the kids spend their free time. So, by the time we got back, Sky had played DS for hours and hours.  I suppose this wouldn't have been a big deal, except that it was Father's Day.

4. Father's Day Cards

Ren and I spent Father's Day weekend driving to our new city to close on our new house. Six hours each way, with a house closing, house cleaning, and construction preparation sandwiched in between. When we finally got home, it was 8:30 and time for the kids to go to bed. Sky didn't even realize we'd returned because he was so obsessed by his DS. But, as soon as I was able to get him away from his game, he realized that he hadn't finished the Father's Day card he'd started making hours before.

Meltdown.

How could we have gotten home so soon? Why didn't Big Sissy make him stop playing his game? Why didn't someone remind him to color it? Why, oh why, was Father's Day ruined by this ill-fated turn of events?

The cover of the Father's Day card Sky didn't finish. It's a super hero with a vacuum, and really, I can't think of a better homage to Ren than this.

By the time we got him through the Great Father's Day Meltdown of 2013, I was convinced that everything had the potential to cause video-game-related meltdowns. This made me more determined than ever to get him away from his games for awhile.

Thankfully, finally, on day five, Sky agreed he needed put his devices away** for the day. And, we had a great day, a great one!


**TODAY'S PSA: Apparently, one must say "put them away" and NOT "put them into time out." Even though these are the exact same thing in practice, one phrase causes meltdowns and the other does not.


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Epic Summer Saga, Part 2 - It Was the Best of Times, It Was the Worst of Times

"Sky hit Emma in the face." 

I didn't expect to be confronted outside the door of performing arts camp by the rather large and not terribly friendly father of one of the girls in Sky's group. We know Emma from school, and church, and swim class, and just about everywhere else kids their age  hang out. So I knew there had to be more to the story.

"Did you hit her?" I asked Sky.

"Yeah because she hit me," he replied morosely. In the background Emma whined a "nuh-uuuuuh."

"Can you tell me what happened?" I continued, ignoring her protestations, trying to keep my focus on him. 

One thing I've learned about Sky is that after years of having people not understand his language processing issues, he's used to not being heard. So, it's important to give him the space and time he needs to tell his side of the story.

"I had my elbows on the back of her chair doing this (mimics bouncing up and down) and she slapped my arms, so I did this  (mimics returning a slap/pushing her hand away) and accidentally hit her in the face." 

He obviously felt bad about it and was worried I wouldn't believe him (he gets that from people a lot, even though he's one of the most honest people you will ever meet).

Since I know Sky never hits people on purpose (except  his sister--that's another story), and since I know Emma has a history of trying to get her classmates into trouble, I was pretty sure Sky was telling the truth. I also knew that neither Emma or her father was likely to believe this to be the case. So, I loudly reminded Sky to be careful and told both kids to work on keeping their hands to themselves. 

Then we walked away.

I'm not sure what Emma's dad hoped to gain from his fairly aggressive "communication" style. And, really, I don't care. All I can ever do in a case like that is listen to my kid and help him make the best behavioral choices possible. But, to tell you the truth, the whole incident thrilled me because, you guys, Sky stood up for himself and explained what had happened in a timely and appropriate manner.

It was freaking amazing!

Giddy from such clear progress, my bubble quickly burst a few minutes later when Sky announced, "I don't like theater camp. They're mean there." 

My experience with Sky tells me that when he doesn't like something, it's indicative of one of two things: 1) someone is being mean to him, or 2) he doesn't understand what's going on. Problem is, a lot of times, he can't quite identify and articulate the problem. 

Still, I had to try, so I asked, "Why, what happened?"

"They're mean."

"All of them?"

"No."

"Who?"

"The staff. She keeps pulling me by the arm even though I don't understand what she said. It hurts." (Now, I could've freaked out right here. Believe me, it crossed my mind. It's bad enough people tend to assume Sky is being a pain in the a**, but I hate it when they treat him meanly. Still, I knew if I freaked out here, I wouldn't get to the bottom of what was going on, so I kept asking questions.)

"So, just one person,  right?"

"Yeah."

"Do you know her name?"

"No, but she's one of the younger ones." (Ugh, does anyone else have this problem? He's terrible with names!)

"Did you tell her you don't like it when she does that?"

"No."

"You have to tell her you don't like it. And also that you don't understand what she's saying. Then if she still does it, you have to tell the person in charge."

Here's the thing. I can't always be there. I wish I could. I wish I could tell people to stop being idiots and to embrace difference and to teach their kids not to be jerks. But, I can't. What I can do is teach Sky how to find his voice and the words he can use to advocate for himself.

So, we went over it a few times. He was nervous, but the next day, when he signed in a camp, he told the woman in charge: "There's a staff. I don't know her name. But she doesn't know I can't understand her, and she gets mad and pulls me by the arm. It hurts, and I don't like it. Can you tell her not to do it?"

And, by gosh, they did. 

And fast.

*****

By now, you're probably thinking we've got this all figured out. You may even be worried I'm going to run out of blog topics. Have no fear, because four days after these two amazing communication feats, I had to take Sky out of tennis lessons. He was so overwhelmed by all the new people and the various types of sensory input that he spent the entire hour walking around the court fiddling with tennis balls. He rolled them. He kicked them. He bounced them. He tried to stand on them. In fact, he did everything but hit them with a tennis racket. There are times to persist, and there are times to cut your losses, and when he almost got hit in the head by someone else's racket (which he never saw) for the third time, I knew it was time to walk away.

Maybe next year.

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