Ten Words

"Stow, I got it. Just sit down and shut up."

On the bus ride home from school on the first day of October, Stow heard these ten words from the bus aide. The exchange was observed by another aide, reported to the principal, and responded to immediately. And, in the scheme of things, in a world where so very many bad things can happen to a kid, being told to shut up can seem insignificant. Somehow, though, this became the precipitating event to what has turned out to be another challenging fall.

I was there to meet him when he got off the bus that day because Ren was still very much in the throes of his post-op recovery and couldn't handle Stow on his own. When Stow got off that day, he explained that something bad had happened to a kid and that somebody was going to get into trouble and that it was ok because another grown up had dealt with it. It took three or four tries for me to get enough of the story from Stow to understand that the something had happened to HIM. Once I felt like I had a handle on the story--he was trying to help the bus aide on his special needs bus by telling her what to do and she told him to bug off--I sent an email to his IEP team. It was probably one of the shortest messages I've ever sent an IEP team.

Stow got off the bus upset because he says the bus aide told him to "shut up" and that he was annoying. Obviously, this is highly problematic, and we’d like to get to the bottom of what’s happened and the situation on the bus.  

Thanks,
Moe

Almost immediately, I got a call from the principal. He'd heard about the incident from the aide and called me as soon as his afternoon bus duty ended; he hadn't even had time to see my email. Our conversation was short. He assured me that they would act quickly to address the situation. Stow asked to talk to him, and when he did, the principal told Stow how sorry he was that someone had treated him like that and promised that everything would be ok.

I hoped and believed that it would, but fall has always been hard for the boys, and everyone who works with Stow knows how fragile his successes can be and how quickly he can spiral.

Day 1

The next morning, the aide was still on the bus. Sometimes things don't happen as quickly as we'd like. It took the bus company some time to find and review the video of the incident and then a little longer for them to find a replacement aide for Stow's bus. It broke my heart to see him get on the bus that next morning and to see the offending aide not even greet him. 

I tried asking him if it worried him to have the aide on his bus, and more than once, he said it didn't. I am sure that it's true that he didn't think it bothered him. But, what is also true, is that starting on October 2nd and for weeks now since, he has struggled behaviorally at school. Before the bus incident, he had day after day of truly positive behavior charts. In fact, not long before the incident, we'd met with his IEP to discuss scaling back some of his supports because he was doing so well. 

Stow rides the "short bus" because he finds it hard to manage the social aspects of the "long bus." On the long bus, kids get into conflicts and the driver yells. A kid like Stow can make terrible choices in that kind of setting, and the drivers aren't usually equipped to support a kid who struggles. Ironically, the very thing we were trying to avoid by having him ride the special needs bus not only happened but also triggered every anxiety he has about getting into trouble for trying to help. He can't articulate any of this; in fact, things like this remind us of how much of what he experiences/feels sits just outside of his ability to comprehend.

It seems unfathomable that something as little as this moment of impatience and a failure to self-censor could derail a kid so, but Stow's teacher and I both keep track of his behavior (because behavior MEANS things; it ALWAYS means things), and it has steadily worsened starting with the bus incident. At this point, we find ourselves in unchartered territory given the struggles he is having at school, and though his team knows Stow well, they can't figure out how to get him back on track.

This is autism, you guys. You figure out what works, and for awhile it works. Sometimes it works so well that you feel like you've unlocked finally cleared a level in the video game called Life With Autism. And, then suddenly, the littlest thing can send you right back to the beginning. For those of you out there dealing with these kinds of challenges or worse, hang in there! We’re with you!!

A Post at 4 A.M.

They say if you've met one kid on the autism spectrum, you've met one kid on the autism spectrum. In other words, no two kids with autism present in the same way. Seven years ago (almost), as a parent of a newly diagnosed kid, I found this truth to be especially galling. Friends would introduce me to acquaintances with kids on the spectrum, but our conversations would hit one dead end after another as I tried to figure out how I could learn from their years of experience when there seemed to be so little that our kids had in common. That's how I ended up on the internet and why I started this blog. Parenting a kid with autism felt a lot like shouting out into the void.

In February, Stow received an autism spectrum disorder diagnosis, too. While I wasn't surprised given all the ways he has struggled and the various developmental delays that he continues to wrestle, I also wasn't sure I believed it. I mean, Stow's behavior and struggles seemed to look very little like Sky's. In fact, despite the fact that Stow showed various delays, his issues didn't present themselves enough like the autism we knew to convince us to seek out a formal diagnosis. And, presumably, we should know better. We're already autism parents. In February, when we went to the neurologist, we weren't looking for or expecting ASD. But, that's what we got.

Since then, I've started to see it. It looks SO different than Sky's, but I am pretty sure it's there. Currently, we're in the process of getting a second opinion in the form of a very thorough evaluation at one of the leading autism centers in the country, which will help us better understand all that is going on. Will they also diagnose Stow with autism? I don't know. I do know that they have already diagnosed him with a significant expressive and receptive language disorder. And, the sensory processing disorder continues to "stick." Early next year, he will get the final phase of the eval done, and I suppose then we will KNOW. But, do we ever really know? And, does it really matter? I suppose the diagnosis changes nothing. The struggles he has will continue to be the struggles he has, and second-opinion diagnosis or not, we will continue to work with him to manage those struggles in the best way we know how.

So, what's my point? Actually, none of the stuff above is my point, really (Sorry! I'm working on little sleep). My point is that this is hard. It's hard for all the ways I've talked about before--the meltdowns, the inflexibility, the unpredictability, the chaos, the interventions, the therapy appointments. And, it's also really hard because it takes a long time to figure out what is going on, and even as we are trying to figure it out, we still have to go to the mat for our kids and push back against teachers, strangers, and often even friends and family who don't understand.

For the first four years of Sky's school life, we had him in a private school (the best of our options at the time) that did not offer special education services. Every single day, (EVERY! SINGLE! DAY!) I was at the school talking to his teachers about one issue or another. Once he got the diagnosis, I had the words for what I was trying to tell them, but even though I was still learning what it all meant myself, I advocated for him daily and made sure they understood why he did what he did and accommodated him accordingly. Then, I got the job I have now, and we moved to an area with excellent public schools, and for the first time as an autism parent, I got to see what the right amount of accommodation by teachers who understood ASD could do. You can read posts here, here, and here (not to mention here and here and here and here and here) about the struggles we had with Sky in school back then. And, you can notice that I rarely talk about school any more. When schools handle special needs right, there's not much to write about. Stow does a lot of the same things Sky did in school at the same age, and because the teachers and the principal know how to handle it, I don't have to explain to them about sensory seeking behavior and poor social skills and intentionality. There are 7 people on Stow's IEP team who "get it," and just like that, my life is 1000 times easier than it could have been.

But, there are still a lot of people who don't get it, and I'd like to be able to tell you that I don't care about them anymore. On some level, I guess, I am so deep into parenting kids with autism, that I'm oblivious to the stares and the judgment of strangers who can't believe I "let" my kid hit me or that I give my careening pre-teen a device to calm him down despite the fact he's being "a baby." What still bugs me, though, is when people who know us question our reality. After all these years, I still have friends and relatives (some of them quite "close")*** that believe our kids' issues lie squarely in our failure as parents because we just don't discipline our children well enough. There are still people who know us well (enough to know better) who question why we need to make accommodations--things like not trying to do too much in a day or keeping a pretty steady routine or sticking as closely as possible to dietary restrictions--and who assume it's because we have raised three fragile (entitled? selfish?) snowflakes. I don't know, you guys; this sh*t is hard enough already. Wouldn't it be heavenly if we had lives full of people we love and care for who care for us and love us where we are and for who we are? These days, I'm working hard to see if I can't make that happen for my family and for myself. And, to be honest, I think, maybe, this might be the biggest challenge on this journey.




***For the record, if you're reading this blog, I am probably not talking about you. There are many people who struggle to know how to help or what to say, but they are trying and we know they are trying. Trying means a lot to us!

The Big Day

Today was a big day.

Today Sky graduated from his IEP.* The path to diagnosis and then from getting the diagnosis to obtaining help at school was long and arduous, so I admit that part of me hesitated when Sky's case worker suggested we schedule an exit meeting. Six years ago, when I had to fight tenaciously for months just to get support for him at school, I never imagined a time would come when he would no longer need that support.

I mean...

I still remember being told he couldn't participate in the school field trips unless I could take off work to go with him since his teachers didn't feel like they could handle him. 

I remember the little boy who repeatedly got in trouble for taking things literally and misunderstanding every single shade of gray. 

I remember the preschooler who missed the bulk of the teacher's instructions because he didn't know she was talking to him or couldn't process what she was saying. 

I remember the notes from Sky's first formal school evaluation that elucidated in excruciating (yet somehow humorous) detail how he mimicked the sounds of various explosions throughout instruction time, clearly disturbing the children  around him even as he kept on task. 

I remember how that same evaluation described the way that he jumped up during class and ran around his chair three times before sitting back down again. 

I remember the kindergartner who climbed over backs and stepped on fingers during circle time in order to pick up something the teacher dropped so he could return it to her, not realizing he'd hurt three of his classmates in his effort to help. 

I remember the boy who never made it through PE or recess without bumping into other kids or knocking someone over.  

I remember when he perseverated** to the point of making his classmate cry, 

I remember the kid who couldn't go to the bathroom without disrupting the entire hallway as he listened to his voice reverberate off the tile floors and the metal stalls. 

I remember creating social stories about how to walk through the classroom to turn in a paper without wreaking seven kinds of havoc as he made his way from his desk to the teacher's. 

I remember worrying, I mean really worrying, that Sky's autism would forever prevent him from demonstrating the brilliance we knew was in there but that was so often hidden by all the other stuff. 

I remember the hundreds (maybe even thousands) of times other kids accusingly announced to me this, that, or the other wrong that Sky had done. 

I remember how terribly hard it was to send Sky to school each day knowing full well he wasn't equipped to handle all the world would throw at him.

Sky's artwork, hanging in the hallway at school

 I remember that kid very, very well. But, that's not who Sky is now.

The Sky who exited his IEP today is the king of clever jokes and spot on physical humor. 

He's a self-advocate who appropriately seeks guidance when he doesn't understand instruction or when he fears he didn't quite get what he should be doing. 

He's an artist respected by his peers for his immense creativity. 

He's an amazing story teller. 

He's an avid reader.

He works comfortably in large and small groups. 

He's an all-A student in honors classes. 

He's a kid would can control his sound effects and take turns in class discussion without perseverating on particular points or concerns. 

He's a budding pianist. 

He's a good friend who has a small group of close pals but who seems to be known and well-liked by many.

In short, Sky is a kid who no longer needs an IEP. So, for Sky, today was no big deal. Aside from the fact that his mom and dad brought him to school early so they could meet with some of his teachers, his principal, and the other folks on his IEP team, this day was pretty much like every other day. Sky did what he always does--he went to classes and hung with friends; he worked hard and lived large.

Another piece hanging in a display case at school.

Today might not have been a big day for Sky, but it was a huge one for me. Because, today I had to learn how to willingly let go of something for which I'd fought so hard. I had to tell myself that these are the fruits of Sky's hard work, and that we should cherish them. I had to remind myself that, though Sky still struggles, he is doing fabulously, and he will be fine. I had to acknowledge that this is a journey to destinations unknown and that that's ok.

I had to trust the process.

None of this comes easily for me, but I am learning, and I will be forever grateful for the all of the therapists and teachers and friends who have helped me figure things out along the way. Today is a big day. It's a good day. But, I suspect it is only one of many great days to come.

______________________________________________

* IEP stands for Individualized Education Plan. It is "a written document that's developed for each public school child who is eligible for special education. The IEP is created through a team effort and reviewed at least once a year. Before an IEP can be written, your child must be eligible for special education. By federal law, a multidisciplinary team must determine that (1) she's a child with a disability, and (2) she requires special education and related services to benefit from general education program." (Definition taken from: http://www.greatschools.org/gk/articles/what-is-an-iep/)

** Perseverate: to repeat something insistently or redundantly; the continuation of something (such as a word or an idea) usually to an exceptional degree or beyond a desired point (definitions taken from dictionary.com and Merriam-Webster).

Orientation

Sky starts middle school today, so yesterday we visited the new building to get his schedule and to meet with his peer buddies. This was our second visit. We met the social worker and got the lay of the land back in May in an effort to prevent Sky from obsessing about middle school all summer. PSA: If you have an ASD kid who's prone to worrying, DON'T let him read the Diary of a Wimpy Kid series. Like ever. I mean, they should slap a warning label on those books or something. Our visit last May helped, but it didn't totally erase the gloom and doom Sky expected from middle school thanks to Gregory and company. In an effort to survive the summer, we had not to talk about middle school AT ALL.

The whole orientation process was supposed to take about an hour. We were at the school for a brutal two and a half hours (during which time, I am pretty sure I lived about seven lifetimes). And, I was reminded, again, why we make so much effort to lay the groundwork for Sky. I mean, he is doing so, so, so well in so, so, so many ways, but he still has some pretty intractable struggles. Change is HARD. Dealing with the unexpected is STRESSFUL. Having all of the newness of middle school before you with Diary of a Wimpy Kid as your point of reference? IMPOSSIBLE. (You think I'm overdoing it with the caps? This is me showing restraint.)

We started in the library with about 20 other students. After long, awkward minutes of waiting, we were joined by several "peer buddies" who had been trained to walk their peer partners around the school as a way to help ease their transition. I'm pretty sure their training didn't cover what to do if their charge became catatonic with fear, though. Because, that's what happened. The wait was just long enough for Sky to become completely unhinged. Too many kids he didn't know. Too much tension. By the time Sky was joined by his sixth-grade and a seventh-grade peer buddies, he was a wreck.

Bless their hearts, the two boys were so earnest in their attempts to give Sky the low-down on middle school. Sky could have none of it. His anxiety was so severe, he never made eye contact and never managed more than a mono-syllabic whisper in response to their questions--if he answered them at all. As they tried to walk him through his schedule, he hung back, desperate to flee. The entire time, he mumbled under his breath various combinations of the following: "I can't believe you are making me do this. I am not ready for middle school. I have no idea what they are saying. How am I supposed to remember everything?  I want to leave. Right now!!"

I knew he wanted nothing more than to be back home, and I really wished I could have made that happen for him. But, I also knew that if we didn't get through the orientation, he'd have a horrible time his first day.  The entire tour, Sky remained steadfastly determined to get the heck out of there. I don't know that I've ever seen him so petrified, so robbed of his ability to communicate, but we soldiered on--all four of us feeling pretty miserable.

As soon as we could, we politely excused ourselves from Sky's buddies with a vague plan for the boys to meet him again on the first day. Our next stop was the assistant principal's office where we needed to figure out a schedule problem and request a locker relocation from the middle of a locker bay to a quieter and easier to manage end spot. Sky remained petrified. He couldn't speak. He couldn't make eye contact. I could see tears hovering in the corners of his eyes.

Asst Principal: "Welcome to middle school! Are you excited?" 

Sky: "...." 

Asst Principal: "How was your summer? Did you do anything interesting?" 

Sky: "...." 

Asst Principal: "I went to the Grand Canyon." 

Sky: "...."

Eventually, he quit trying to make small talk with Sky and looked to me for the lowdown. We talked briefly about Sky's anxiety and the best methods to address any issues that might arise during the year. Then he got to work; not only did he immediately solve Sky's schedule and locker issues, he also reached out to Sky's case worker to let her know we were at the school and that Sky was near DEFCON 1.

And, suddenly I was reminded of why I love this district so much. As Sky broke down at his locker, frustrated by binders that barely fit, overwhelmed by the all the new information, and scared of the unknown (How would he find his classes? Who would be in them with him? What was he supposed to take to every class? How could he possibly survive middle school?), his case worker, Ms. Hart, dropped by to say "hi." 

Within minutes, she addressed all of Sky's worries. One by one, she gave him concrete and easy-to-manage strategies. She introduced him to the PE teacher, walked him through the PE locker room, showed him her locker key in case he couldn't get his open on the first day, showed him how to hold the locker just so when it sticks, promised to walk him to each and every class if needed, and tracked down a copy of the school emergency map so Sky could visualize his schedule.

Sky's map.

Sky went from 120 straight minutes of being on the verge of tears--unable to speak or make eye contact--to being able to smile and laugh again. The transformation was striking. By the time we left two and a half agonizing hours after we'd arrived, Sky thought just maybe he could make this whole middle school thing work. And, by the time he got on the bus this morning, he'd memorized his locker number, his combination, and the way to all of his classes. In fact, I'm pretty sure he'll be the most prepared kid in the whole school!

It's hard to be a parent when your kid struggles. You have to push them through things when they don't know how to get through it on their own. When they fall apart, the balance between supporting them and making sure they are learning the skills they need to make it in the world without you seems impossible to calculate. Having good social workers and special ed case workers has made school an entirely different experience for us. They get Sky. They get that he doesn't need a lot of support, but the support he needs is pretty important to his success. Being in a school district that understands this has had a hugely positive impact on Sky's world. And, it's made my world a lot more manageable, too.

And, so, we live to fight another day. Now we just need to survive puberty!

In Which an Old Post Reminds Me of Some Eternal Truths

Today Facebook took me back to this day in history in 2009. That was the day when Sky's private preschool sent home a note telling us that he couldn't go on the school field trip to choose a Christmas tree unless I, his mother, accompanied him. The school, which was closely tied to the college where I was teaching, knew that I worked full time. They also knew that Sky's dad was our stay-at-home parent. Surely, no one was stupid enough to put something so sexist and potentially racist in writing, I thought. This was the question I asked my FB friends in the post that popped up on my wall today.

To try to understand what the note could possibly mean, I scheduled an appointment to talk with the head of the school. Surprisingly, she actually WAS being both sexist and racist. She didn't realize it, of course. But when she said, "Sky might just respond better to you on the trip than he does to his dad" and "Sometimes we feel like we can't communicate as clearly with Ren as we can with you," I tried to imagine a situation in which she would send a note to a family telling them their child couldn't go unless his dad would take the day off accompany him or a situation in which she would tell any other family in the school that communication was difficult. I couldn't imagine it, though. We were being triply marginalized--for having a difficult child, for being a non-stay-at-home-mom family, and for (some of us) not speaking English as well as a native speaker--and it broke my heart.

Sky was my first kid, so it took me a little longer than it should have to realize that private school was not the place for him. I really wanted it to work and felt more upset about taking him out of the chaotic, child-driven, project-oriented school than I ever should have. This was pre-diagnosis, though, so I try to cut myself some slack. Learning how to parent any child takes time, and it takes just a little longer if your kid is on the autism spectrum.

Facebook's time hop reminded me to tell you this: It will be okay. Go with your gut. If a place doesn't seem right for your child, it probably isn't, no matter how good it looks on paper. The road is long, and it can seem daunting at times; just take things one step at a time, and eventually you'll find yourself some place pretty darn good.

Today, six years later, Sky is thriving in a public school a few miles from our house. His teachers and IEP support team are Ah-Mazing. Not only is he mainstreamed in honors classes, but he loves going to school. Most importantly, though, he has friends and a true sense that his quirkiness is A-OK because there are people around (usually hiding so far back into the wings that he can't even see them) who understand where he's coming from and accept him just as he is.

Fender Bender

You know what's at the top of the "101 Things a Mom Doesn't Want to Hear on the First Day of School" list? Well, pretty much anything that comes directly from the principal, and especially anything that has to do with bus/car collisions.  (For the record no one was hurt and Sky thought the extra time sitting on the bus was a great way to make new friends and  "memorize the inside of the bus").

When Sky's principal called me just 90 minutes into the new school year, it didn't help my nerves. I mean, I was already a bit anxious for the kids --getting ready for a new school year takes mental, physical, and social work (as you probably remember from past posts here, here, and here). The new school supplies, shoes, and haircuts are the easy part.

For Pink, a new school year means contacting the principal who puts me in touch with her new teacher so we can talk at length about the various contingencies necessary for avoiding unwanted peanut exposure in the classroom. It also means making a special trip to meet the school nurse to make sure she has all the appropriate paperwork and protocols in place. And, of course, these conversations force me to think realistically about all that could possibly go wrong with my severely allergic child in a school full of peanut butter eaters (okay, so they don't ALL eat peanut butter, but it sure feels like it when I start to think about what could happen if someone touches my kid with peanut butter on his/her hands). In case you're wondering, this is why I maintain a healthy sense of denial about Pink's allergies (while also keeping an epipen handy, of course.) The start of school means working through all of my anxieties about Pink's allergies. I get that forcing kids to eat their peanut butter at home is inconvenient and unfair, but it sure would help lower my stress level if they did.

Meanwhile, for Sky preparing for the new school year is an ongoing process. Before the last school year ended, Sky worked through social stories with his speech therapist and visited his fourth-grade school building with a group of his peers. For weeks, we've talked about the new school building, his new teachers, the new principal, and his new bus route. We've brainstormed about what to do if kids are mean or call him weird. All summer (except for when we were in Japan), Sky had weekly hippotherapy and behavioral therapy sessions. Sky works ceaselessly to fit himself into the neurotypical world around him; sometimes his hard work pays off, and sometimes it doesn't.

Every year, in the days before school starts, we set time aside for me and Sky to meet with Sky's new teacher. For a kid with difficulties processing social cues and transitioning into new environments, meeting with the teacher and talking about his concerns ahead of time always helps. It's different with each teacher, of course, but this year, Sky's new teacher met with him for nearly an hour, taking a break from her final preparations to tell him about the classroom, to answer his questions, and to help him start to understand the routines of fourth grade. We also established the best means of home-school communication and discussed how we would handle any concerns about his IEP, incidents of bullying, or any other issue that might arise (and believe me when I tell you there's no limit to the kinds of "issues" Sky can have in school). Sky left that meeting feeling excited and ready for fourth grade (and I left wondering how many other parents spend so much time with their kids' teachers before the first bell on the first day has even had a chance to ring).

Then, there's Stow.

Believe it or not, the baby started preschool--the early childhood program at the local elementary school to be precise. I actually thought I'd handle this transition fine. I mean, Stow has been receiving therapies since he was 1, and the early childhood program in our town is known to be the best around. All of our transition and IEP meetings went great, and I am sure he's where he needs to be. In other words, I didn't do much of anything to prepare Stow for the first day (except get his haircut and buy him some shoes) because I knew he was ready.

But, I didn't really realize that I wasn't.

Not long after Sky and Pink's bus pulled away, Stow's little preschool one came. He climbed right on, plopped down in a seat and waited patiently for the driver to click his seat belt into place. I don't know if he realized he was going alone (though I guess he probably did since he's seen his big brother and sister get on the bus hundreds of times), but I do know that he was grinning ear to ear as the bus pulled away.

And, much to my surprise, I totally lost it. I am so NOT sentimental. I have no idea why I cried. I suppose it had something to do with the expression of eager anticipation on Stow's face as the bus drove away.  My realization that my little guy who doesn't talk a lot was going off into the great big world on his own didn't help. Then, there was the realization that my baby isn't really a baby any more, and there's not a darn thing I can do to get a single minute back. Not one.

See, my kids? My kids, they keep going out into the world. They don't let the allergies or the autism or the anxieties hold them back. They go out into the world dancing, laughing, and making the absolute most out of it. Letting them find their own way (without letting the fear of all that could go wrong consume me) is not easy, but I know it's my job to let them go. I'm still figuring out how to do that without it breaking a little piece of my heart every time they go. All I can do, really, is believe things are going to be okay, even if there is a fender bender or two along the way.

Dear Gym Manager, Part Deux

Several days after I sent my message (read part 1 here), I got a reply. It came a few hours before Sky's scheduled class with John. Before I got this e-mail, I was still undecided about what to do. The gym manager's response didn't make the decision any easier.

Dear Moe,

I have spoken to my co-manager regarding your son.  She has spoken to John about the situation that occurred during class.  My co-manager does believe that John is still the best teacher for your son even though he has a tougher approach to situations.  She also believes after speaking with John that he would never "punish" your son if it was an issue related to his Autism but would hold Sky accountable for his actions if he was testing authority.  John also wanted you to know that he did not kick Sky out of class, Sky choose to leave when John asked him to sit down and wait while he gave the rest of the class the next instruction.  In John's view of that situation Sky did not want to wait for John to provide instructions to the rest of the class  If that situation happens again John believes he cannot act any differently than he did since Sky was unwilling to wait for John so he is unsure of what he can change in the future. He will take each situation as it comes and decide the best way to handle it at that time but if Sky is not cooperating and it is not due to his Autism John will have him sit out hoping he will learn to wait for further instructions before leaving class or that non compliance has a consequence of sitting out. If you feel you are unable to work with John and his methods we can start looking into other instructors.  Let me know if you are going to give this another try and see how it goes or if you would like me to look for another class.  Whatever you decide I would like you to be satisfied and happy with Sky's class. 

Gym Manager

Besides the punctuation and grammar issues, what bugged me about this is that I didn't seem to be getting through to them. Autism (with its mysteriously capitalized A) doesn't always look like you expect, and "bad" behavior can mean a lot of different things. Believe me when I tell you guys that THIS is the biggest hurdle when you have a kid like Sky. People always think he's doing something to be a jerk. Occasionally he is, but most of the time he's not. My points about the need to develop a means of communication and about the importance of teacher training didn't get far either. 

I started to consider the possibility that this would be one of those times when advocacy failed, but instead of throwing my hands up in the air and pulling Sky out of the class,** I decided to write back.

Thank you for following up on this.

As I have said, I never thought John kicked Sky out of class. Sky left because he wanted help communicating. That was not a great choice on his part, but the only one he felt he had. I am happy to keep Sky working with John, but I do think it's very important to understand some behaviors that kids with autism demonstrate don't look like what most people think autism looks like. We are in agreement in that I want Sky to learn appropriate behavior and what he needs to do to comply, but it's pretty important to understand how autism affects Sky in order to know why he behaves in certain ways and how to best work on those behaviors. I understand there are limits to what can be done in class, but I hope his instructors understand that autism impacts kids in much more complicated ways than they may realize. Sky is brilliant and a good kid, but he is also not coming from the same stratosphere as a lot of his peers. 

I am not advocating for John to be less strict or to hold Sky less accountable, what I am advocating for is that people who work with kids today understand that autism doesn't look like what you might expect it to and that failure to communicate does not equal non compliance. Sometimes it equals panic. I hope in the future John will give clear cause and effect statements (i.e. "if you don't do this warm up, I know your body is not ready to be on the trampoline, so you won't be able to be on the trampoline") and instructions. I hope it will work out for Sky with John because he does love the class.

I'll be honest, I thought this was a pointless gesture (though one I felt compelled to make).** As I finished up at work and prepared to head out to meet Big Sissy and the kids at the gym, I had already resigned myself to the class going poorly. These folks didn't seem to be getting it AT ALL.

Then, just before I shut down my computer, I got this:

Thank you for your cause and effect example I find that to be very helpful. I will relay this to John in hopes of finding a better way to communicate with Sky.

Hmph. Well, that's something. And, something is better than nothing. I wasn't ready to feel a glimmer of hope, but my sense of doom lessened a bit as I drove to the gym. When I got there, John was going over this with Sky:

It's certainly not perfect--it looks like the malformed beginnings of a really heavy-handed social story (with a seriously underdeveloped narrative voice). Still, if the thought counts, we were definitely getting somewhere. These rules were laminated ahead of time, and John explained them to Sky before class. Then he let Sky ASK QUESTIONS!! That alone convinced me that all hope wasn't lost after all. Upon reading these, Sky asked, "Is it okay to yell if I break my arm or leg?" (A perfectly logical question based on his experience and rule #2 on the list--If you're wondering, in this case John finds it is perfectly acceptable to yell).

In the end, the lesson went well. Sky worked to remember the rules and John willingly overlooked his slip ups. Most importantly, they seemed happy together and Sky got to get back on the trampolines.

In the end, here's what I learned: sometimes advocacy doesn't work like you want. Sometimes the messages get lost or misinterpreted. That's okay. Keep trying because even when folks don't seem to get it, they can still do okay by your kid. And, in the end, that's what's most important, anyway.

**I never sent my letter to the swim instructor and just pulled Sky from the class, instead. I still kind of regret it. Silence helps no one really.

Dear Gym Manager

Well, trampoline was going pretty well until it wasn't, but I suppose that's par for the course. Here's another letter for you. I think it explains things pretty well. 

~~~~~~~~~

Dear Gym Manager,

Thank you for taking the time to talk today as well as last week when Sky was asked to leave John's trampoline class. Here is the link to the post I mentioned. Though the kid described here isn't exactly like my son (no two kids with autism are alike, after all), the points it makes are relevant. Sky does not always have control over what he is doing/saying, and sometimes his body feels quite foreign to him. This, in fact, is one of the reasons we've chosen to put him in trampoline --to help him gain body awareness and control. I believe Sky experienced a loss of body control (which he described to you as his brain failing to convince his stomach muscles to do what they were supposed to do) last week when he couldn't do the warm-up exercise. I believe this both because he told me that was the case and because this week, before he went onto the floor for trampoline class with Amy, he lay down in the middle of the floor in front of the lockers and tried to do the same exercises (and then was ecstatic that he could do them). In other words, despite John’s belief that Sky was testing the boundaries and engaging him in a power struggle, he was actually trying to figure out why his body wouldn’t do what he wanted it to.  

He tried to explain this to John but was silenced before he could. This is where I have a problem. See, it's important that we hear and believe a kid like Sky when he tries to explain what is going on with him because 1) we can learn from him, 2) appropriate expressive and receptive language skills are harder for him, so when he feels unheard he falls apart, and 3) he needs to be able to be heard so he can make it in a world for which autism makes him less well suited. Autism rates are currently 1 in 68 children, a 30% increase from 2 years ago. Based on current tends, some estimate the rates could rate could be 1 in 10 ten years from now.  Chances are you will see many kids like Sky at your gym in the coming years, so I hope his experiences can help your staff become better aware of how to best teach kids like him. 

On the whole, we've been very happy with the quality of instruction our kids have received at your gym, but I think we can find a solution other than removing Sky from the class when a situation like what happened in John's class occurs. Sky was not being intentionally confrontational, disobedient, or defiant, and his inability to do the warm-up and then his lack of opportunity to explain why he wasn't able to do it led him to leave the floor (without permission) to seek me out for help. After all, after many years of being punished for things he can't control and bullied by classmates for his odd and somewhat clueless behavior, he's been taught to stand up and speak out, and when that fails, he knows to go to an adult he trusts. When John refused to let him speak, he lost his ability to advocate for himself. It was frustrating for both of us to feel like our attempts at advocacy on his behalf failed. Like the kid in the post above, Sky works harder longer just to appear and behave "normally." When that breaks down, it devastates him to be told he is just testing boundaries or making excuses. Since his behavior can sometimes betray him, he knows that his only hope is that people will believe what he says.

To avoid communication breakdowns in the future, I hope we can work with you and with John to come up with a strategy to enable Sky to express what is going on with him while also not causing disruption to instruction or being assumed by the instructor to be misbehaving.  Of course, we will continue to work at home to make sure Sky understands the expectations we all have for him. But, we also need to know that he has a way to be heard. I am happy to talk with you about strategies that have worked and think with you about how they can be implemented in the gym setting.

Sincerely,

Moe

~~~~~~~~~

This week, I was able to put Sky into a session with a different teacher, but what do I do next week? Sky loves trampoline and he even loves John's teaching techniques. Me, I'm not so sure. How about you? What do you think? How would you handle things differently?

Like a Boss

Recently, Stow turned three...

Scooter by Mom, hat by Big Sissy.

...like a boss.

We hadn't had a party in a long time, so we decided to throw a birthday/Memorial Day/survived-an-unbelievably-long-winter-and-third-back-surgery party. Stow likes cars and trucks and digging, so the obvious choice was a construction party.

Big Sissy came and performed her usual awesomeness on the cakes.

The non-GFCF cake.

GFCF brownies with icing--notice the fork damage?

I'm way too cheap to have a fancy gluten-free, dairy-free, nut-free cake made, so I picked up some GFCF brownie mix and icing for the kids and ordered a good ol' store-bought cake (with butter cream icing, yum!) for the rest of us.

Third birthdays are my favorite, and Stow rocked it. If friends came bearing gifts, he took them to the gift table, chanting, "My present. My present." When it came time for the cake, he waited (somewhat patiently), beaming as people sang for him before blowing out the candles right on cue. Of course, he also managed to dig his fork into both cakes before anyone could stop him. Then again, what do you expect from a boy who sincerely believed all the food and drink were just for him?

Stow single-handedly cleaning out the snacks before the first guests arrive.

 *****

Turning three also means Stow has "aged out" of the Early Intervention (EI) therapies he's been getting for most of the past two years. Two days before Stow's birthday, a certificate arrived for him in the mail. It read: "Congratulations! You have successfully completed the Early Intervention Program." Woo hoo! Stow successfully turned three! Tomorrow I fully expect a certificate congratulating me for getting out of bed on a Wednesday.

Don't get me wrong. I appreciate the gesture and have been happy with the various supports that EI has provided; I just have very mixed feelings about the fact one "ages out" of it. I could do without a certificate reminding us of this big and somewhat scary transition. Plus, I forgot to take pictures of Stow with all the therapists who have worked with him the last two years, so now I'm feeling bummed about how totally unprepared I seem to be for this whole thing (even now).

The good news (I guess) is that Stow will go directly into the early education program at the local public school (with his very own IEP and everything). It's a logical next step for a kid who has experienced as many delays and who shows so many gaps (even still) in his development, but it's still a bit heart-wrenching. I think we both believed that maybe all of our work was enough to get him beyond this particular set of challenges, so it's hard not to be bummed that it hasn't. Thank goodness there's a safety net! Funny how some things can be so good and so heartbreaking all at the same time -- kind of like when you realize your youngest is growing up, and there's not a darn thing you can do to stop it.***

#allthejoyallthesorrow



***Yes, I realize this is a post full of half-formed ideas. That's why I included more pictures than usual--you know, to make up for my complete inability to come up with five coherent paragraphs. Why you gotta be so critical anyway? Sheesh.

Postscript

Yesterday, Sky went back to the after-school art class for the first time since being "dis-enrolled" from it. He went prepared with his visual cue card, a container of gum, his sketch pad, and a note to his homeroom teacher reminding her to send him to the art class instead of to the bus. He came home excited that two friends from his class are participating this session. Other than that, this class was no different for him than all the others. 

Later that night, I got the following message from the program director:

Dear Moe, 

Wanted to let you know Sky did a great job today, I was very proud of him!  Miss S was out sick today, and I was available to teach the class.  He politely asked me about the gum just before class and half way through, he asked to get another piece, which was no problem.  I think it really helped.  He really only blurted out once. He got a little silly a few other times, but really not any more than some of the other kids. It's cartooning so we expect a little more silliness. He fell off his chair once, but it didn't appear to be attention seeking, I didn't make a big deal about it. When I was collecting sharpies, he did throw his sharpie towards me.  He realized his error right away and said "I should have said catch", I agreed and suggested handing it to me next time instead. He didn't use his sketch pad until he was done with his picture.  He doodled on our black scratch paper between steps, which is fine.  He went ahead drawing instead of following the steps - but that's perfectly fine too. I could tell that he was really trying to control himself and to please me.  He was sweet, polite and looking for reassurance, which I gave him.  I did have him sit up front, which he didn't seem to mind (I had name cards already in place when the kids came in, so it was assigned seating for everyone). When it was time to color he shared markers with the girl next to him, they got along really well.

I really appreciated that she took the time to let me know how it went. Thing is, though, I'm pretty sure that's what he's been doing all along. He never keeps it all together, but he cares about what you think, and he tries HARD.

Isn't it amazing what people can see if they take the time to understand difference as something other than annoying? If people take the time to look--you know, to really look--they can see Sky for who he is. And, then they figure out he's not that hard to teach after all.

When teachers get Sky: This one let him play with the piano cover off so he could satisfy his strong need to see how the piano works as he plays. I remember entire lessons (lessons!) lost to the denial of his unrelenting need to look inside the piano. 

But how do we teach this? How do we find teachers like this piano instructor who are willing to think outside the box? How do we help people see neuro-diverse kids and kids with learning differences for who they really are? I'm not sure I know the answer, but I do know that it's my job to advocate and to educate until things change. 

It's all our jobs, really.

(Read the story from the beginning.)

All the Joy, All the Sorrow (Part 3)

The next morning, I decided not to look at my e-mail. And, instead I waited until after taking a shower, making breakfasts, packing lunches, seeing kids off on the school bus, taking Stow to daycare, grading, prepping, and teaching to see if I had gotten a reply.

Did I mention I CC-ed everyone on Sky's IEP team, the school principal, AND the head of the special education co-op for the region? Generally, I'm not a CC-er--it's a tad too passive aggressive for me. But people needed to know that the after-school program being promoted by the school and held in the building after hours was discriminating against kids like Sky. Besides, the e-mail exchange I had with the program director was a pretty good example of the kinds of concerns I'm trying to bring into better focus for Sky's IEP team.

With all of the CCs, I expected radio silence.

Instead, I got this--it'd hit my inbox at 6 a.m:

"Thank you truly for your enlightening email.  You are correct, I have handled this poorly, and I apologize for not reaching out to you in a timely manner....I am hoping, if it's still possible, you would allow me to try and remedy the situation."

My first instinct was to ignore her, to let her sweat. But then I reminded myself that my goal is to teach Sky self-advocacy while also educating people about autism.  So, I agreed to talk with her.

When we talked, she admitted that she had not done nearly enough to work with me to help Sky succeed. She also admitted that it was clear to everyone that Sky's behavior was not malicious, just disruptive. She even admitted that the so-called "crying girl" she mentioned in her earlier message is "pretty sensitive" and "cries about everything."

As calmly and as clearly as possible, I helped her deconstruct her own message, so she could see just how much damage she could do by choosing to tell a story in a particular way. The more we talked, the clearer it became that, in fact, Sky had done nothing wrong. He was just difficult to have in class. Period.

When she asked me to give her a chance to remedy the situation by having Sky back in the class, I said, "Well, I have to be honest--I don't feel entirely convinced that you've created an environment that suits Sky. I need to hear the concrete ways in which you plan to do things differently."

Sky's visual cue card.

Then I paused. I wanted to make sure she really got what I said next.

"But, this decision is not up to you. Or, even me. You disempowered Sky when you told him he couldn't come anymore. He should be in control, here. I will let him decide."

That day, after school, I explained to Sky that I'd talked to the program director and that she wanted to apologize for how she'd treated him. Then I told him he could go again if he wanted to. He thought about it for a minute and said, "You know, I think I will."

"Good," I replied. "Then let's talk about what you need to succeed there."

Without missing a beat he answered, "Let's see...Well, I can use my picture card. That helps. And, if I'm allowed to chew gum, it will remind me not to talk when I get too excited. I also really wish I could have a blank piece of paper to draw on. I think I will bug people less if I have something to do with my hands while I wait. And, I really wish the teacher would let me get up and walk around from time to time. You, know, since I can't bounce my feet on my chair like I do in Mrs. A's class."

This, you guys. This is what it looks like when Sky advocates for himself. When Sky thinks people are judging him and failing to see him for who he is, he can't do this. But, when he starts to believe he is being heard and seen, he can blow your mind.

*****

All the joy.

As improbable as it seems, sometimes all the joy comes from all the sorrow. That my sensitive, smart, and funny kid can take his heartbreak and so swiftly turn it into forgiveness and action blows my mind. But, it also reminds me not to look away when things get hard. Because if I do, I just might miss out on some of that joy.



Part 1
Part 2
Postscript

All the Joy, All the Sorrow (Part 2)

The after-school art teacher’s e-mail hit me like a sucker punch to the gut. Instantly, I could feel my pulse quicken, my breath shorten and my eyes burn. I stopped being able to hear whatever it was the Ren was saying to me in the next seat. I had to remind myself to breathe, to focus, to keep it together. Every time this happens, every time Sky is rejected so completely, I never fail to be amazed by just how close to the surface my emotions are. Raw, is probably the right word for it. I always think I’ve moved on, gotten thicker skin, figured out how to not let these things bug me, but then something happens, and I am right back in that horrible, vulnerable space.

“What?” Ren asked, noticing my sudden inattention to our car conversation.

“Sky’s been kicked out of the after school program,” I said under my breath. In the car, I’m aware of the three pairs of ears listening to everything we say.

This was Sunday afternoon. The new session was scheduled to start the next day after school. I had no idea what was going on, so I had to ask.

“Sky, buddy,” I started, “have you been having trouble in after school art class lately?”

“I don’t think so,” he replied. “Why?”

Listen. I know I could have lied here. To be honest, I tried stretching the truth a bit by saying something about how the class was full, so he wasn’t going to be able to take it because the teacher wasn’t sure she could help him if he got overwhelmed. This was kind of true—the program director mentioned losing a parent helper and larger numbers than usual in her message. But, then I started to think about how we are always talking to him about the importance of understanding his behavior and how it affects others and learning how to self-advocate. And I realized he needed to know. It broke my heart to have to tell him.

“The teacher says you’ve been shouting out and sometimes you throw things. She says you fall out of your chair. Is that true?”

“Well, I guess I am kind of loud since I’m excited. But I don’t throw things. Sometimes I toss them onto the table though."

“Okay, buddy, I see.”

“Why?”

“Well, that’s why they said you couldn’t come back.”

“Oh." Pause. "Wait, so you mean, even if the class wasn’t full, I couldn’t go?”

“Maybe,” I said hesitantly. “Yeah, it kind of seems that way.”

He got stuck on that point and asked me the same question in several different ways just to make sure he got it. When it seemed he had, I said, “All we can do is keep working on those things that are hard for you. I know you’re awesome and that it's going to get easier. It just takes time. And practice. I'm not worried about it, though.”

Then, I shifted the conversation back to the great art show and how proud we were and how proud his art teacher and his homeroom teacher were of him. I reminded him of all the people who gave him a shout out on Facebook and what his grandparents said.

After a long afternoon and evening of willing myself to breathe deep and keep my eyes dry, I finally got the kids to bed. I had three hours of work ahead of me, and I really, really just wanted to let the ignorant woman and her stupid program go. Clearly the program wasn’t a good fit for Sky. Clearly they didn’t see him the way he deserves to be seen. Screw them.

But, the more I thought about it, the more I just knew I couldn’t let it go. This was the first time since he’d been diagnosed that Sky had been asked to leave anything. Worse, the more I mulled over wording of the e-mail, the more I was convinced it was just plain discriminatory. I can’t tell Sky to advocate for himself if I'm not willing to do the same.

So, I wrote this response to the woman:

Thank you for your message. Since I had not heard of any concerns regarding Sky’s behavior recently, you can understand our shock at receiving it. (In fact, our last correspondence was more than a month ago, when you wrote, “We will see how it goes, and I will advise from there.” I responded to your message immediately, asking to be informed as soon as possible if there were problems, but didn’t hear from you again until today, when you wrote to tell me that Sky’s registration was being denied.) 

You should know that your “difficult decision” has deeply hurt my son who loves art and who struggles but works hard to try to fit in with his peers. Sky is upset, a situation made worse by the fact that we are just now learning of your decision (by e-mail, no less) the day before he was set to begin a new session, one in which he was very much looking forward to taking part. 

In your message, you list several “efforts” made by the teacher, but they are far from adequate since we were never able to have enough communication to actually talk about why Sky might be behaving the way I am told he behaved. You mention that she tried to use some of the phrases I suggested and that she made laminated cards (even though those are cards that, at my request, were made by his IEP team, discussed with Sky, and sent with him to the classes in order to try to help him). None of these things will be effective without some understanding of why Sky is doing what he’s doing. This, I know from experience (and is, in fact, supported by much recent research on Autism Spectrum Disorder), which is why I have offered repeatedly to try to work with Sky and the teacher to alleviate some of her concerns. 

Interestingly, when I try to ask Sky about some of the incidents you mention, he is truly befuddled. This is not because he has forgotten or because he is lying about his behavior, it is because much of the “verbal outbursts,” etc. you describe were most likely part of his natural way of engaging with his environment and therefore not entirely noticeable to him. It is unfortunate that his behavior disturbed other children, particularly because much of it could have been remedied if I had been made aware of these “incidents” in a timely manner or been given the opportunity to try to help. I do wonder, though, if a child was upset by another’s physical disability, for example, whether the same blame would have been assigned. Would you fail to try to accommodate his needs if he was in a wheelchair? Or needed someone to sign the directions? 

Your pattern of waiting weeks or more to tell me that there were problems, your slow responses to all of my e-mails regarding concerns about Sky’s behavior, and your unwillingness to work more closely with me to try to make the classes work for Sky are extremely disappointing and, in my opinion, unacceptable. By being unwilling to work with me to help Sky succeed in this environment, you have ensured his failure. While it’s a difficult decision for you, it is devastating one for him (and, I should note, the first time in the four years since we received his diagnosis that he has failed to thrive, with support, in an environment, or worse, been asked to leave it). What makes it so frustrating is that it could have been avoided. 

In the future, I hope that you will make clear to the parents of special needs children wanting to take art classes that they cannot be accommodated in those classes.

This message didn't pull any punches, but I had to write it. I wasn't going to be able to sleep until I did. You know, I write these kinds of letters (calling people out on their idiocy) from time to time, but I almost never send them. This one, though, needed to be sent.

But, I was a little afraid to send it. I'd never been quite this blunt to anyone about how their actions impacted my son before. I'd never so blatantly accused someone of discrimination. It made me nervous. So, to make sure that I wasn't taking the wrong tone and unnecessarily pissing anyone off, I showed the letter to my friend, fellow ASD mom blogger Michelle Awesome. (She asked me to call her that--I agreed, but only because she promised to call me Samurai Mama from now on). Michelle's feedback was short and sweet:

"I think it's f^#*!ing awesome. Press send."

I knew she was right, but I needed that conversation and the support of someone who so thoroughly understood what this was like. (Thanks, Michelle!) Finally, I pressed send, and then (and only then), I could sleep.



To be continued.... 

• PART I
• PART 3
• POSTSCRIPT

All the Joy, All the Sorrow

A month or so ago, Sky brought home a letter from his school art teacher saying his picture had been selected for the "young artists" exhibit at the city art museum. She told us to look for a picture of him in the local paper. That was back in February, or maybe early March, so I wasn't even sure which paper to look in or when.

For a couple of weeks, I tried buying all of the local papers but eventually gave up, assuming I'd missed it.

Then last week, Sky brought home an extra copy of the paper along with a glossy photo of himself holding this picture.

The actual picture is squarely framed. This is a picture of a picture of the picture, though. So, less square.

This, you guys. This is the picture that got selected. He's one of five kids out of 350 in his school to have a piece selected. So, it turns out it was kind of a big deal, which is why his art teacher reminded us of the exhibit opening (more than once). We wouldn't have missed it for the world.

Of course, it was a mad house with kids in grades K through 12 from all the district schools and their families in attendance. As soon as we got there, Sky spotted his art teacher. He wanted to introduce her to us, but he kept trying to get her attention by standing just behind her in a very crowded and loud room. Every time she walked off, he got discouraged and came to me for help. Unfortunately, since it was nap time, Stow decided this would be the perfect time to show off his "death drop" skills--you know when toddler goes from vertical to horizontal in a single motion-- so I found myself weaving through the crowd, dragging a 36-pound toddler in the prone position while encouraging my socially awkward son to step in front of his teacher. After five minutes of dragging and weaving over the entire area of the exhibit, I may or may not have resorted to giving Sky a little shove to get him into her path.

When she saw him, her eyes lit up and she grabbed his hand and took him right to his picture. He got that sheepish proud grin he gets that I love so much. As we were weaving back through the crowd, me still dragging Stow, she said to me, "He's brilliant, you know. The way his brain works is fascinating. I'm amazed by how he sees things."

When we got to his painting, we took a picture of the two of them in front of it. She called over her husband and introduced him to Sky as "the one who did the incredible Native American storytelling project." He congratulated Sky on his work, and she turned back to me and said, "It's a pleasure to teach such an out-of-the-box thinker. He really is quite talented. Wait until you see the one he's working on now. The layers are amazing. You'll want to frame it." And then she was off into the crowd, pulled away by another student wanting to introduce her to his parents.

That, you guys. That is what it's like to meet a teacher who really sees Sky, a teacher who refuses to be put off by his sound effects or his inappropriate comments or his need to move at inopportune times, and empowers him to express all the brilliant ideas bottled up inside of him.

*****

Twenty minutes later, on the car ride home, I got an entirely unexpected e-mail from the woman who runs the after school art program Sky had been attending for the past six months. In it she outlined his allegedly escalating behavioral issues. She ended her message with this:

"[His teacher] doesn't feel she can adequately support his needs, the needs of the rest of the class and maintain a positive learning environment. After much consideration, we will not be accepting Sky's enrollment for this last session. A credit has been processed. I'm sorry for waiting this long, it was a difficult decision."

This. This is what it's like to live with autism. Because, when you are living with autism, you experience all the joy and all the sorrow, and sometimes you do it all at the same time.

See, it's not just about me and my kid. I get my kid. I love my kid. I love it when people get my kid, because when they do, he feels happy and proud and confident in a way that fills me with unimaginable joy. But a lot of people don't get my kid. They judge him and are mean to him and discriminate against him because what they see is not the awesomeness that hides just beyond the verbal stims and the poor social skills and the seeming inattentivenss. They only see those things that are very much a part of his autism. And they discount him for it.

I love every single thing that makes Sky who he is, but I don't love the way people treat him because of it, and I don't think I will ever stop being heartbroken every time something like this happens to him.

(To be continued...PART 2, PART 3, POSTSCRIPT)