Sunday, August 31, 2014

Better Than Perfect

Yesterday, we had one of those days that I could have bragged about on Facebook. I mean, on the surface, it was perfect. We all went to the tennis court where the older two reviewed tennis lesson skills with me while Ren and Stow explored the woods around the court.  Afterwards, we went downtown to the local farm-to-table restaurant where the kids ate organic, gluten- and casein-free meals.

It was tempting to take a picture of Sky and Pink in their tennis gear picking up tennis balls; I could've posted a picture of it with a caption like "Ready to go pro any minute now!"

But, I didn't.

Truth be told, Sky verged on a meltdown most of the lesson, first because he didn't want Pink P to be able to play, too. Then because he couldn't hit the ball well. Then because he didn't like the tone of voice with which I was instructing him, and finally because I ended our lesson after about 45 minutes (of him complaining). Pink, meanwhile, cried because I didn't bring enough water. Or snacks. Or juice. And, Stow? Well, Stow "explored" his environment by running every which way all at once with a cane-wielding Ren left hopelessly in his dust. The awesome meal cost a lot of money and included antsy kids passing the baton to and from the bathroom. Plus, everyone was still hungry when we got home. Fifteen minutes after walking in the door, I was left to bathe and get all three kids to bed when Ren headed off to a glamorous (not) sleep study where they would determine just how bad his sleep apnea is and how much it impacts his less-than-perfect heart.

The day wasn't terrible. But it certainly wasn't brag worthy.

Have you seen this video about the truth and lies of social media? If not, you should. It's a good reminder of how we are all constructing these social media lives of ours and how we should think a little more about what we are doing. We all have lies and half truths we tell each other online. I guess that's what makes social media simultaneously fascinating and terrifying.

I'm not quite ready to kick social media to the curb quite yet, though. Used right, it can help us make meaningful and real connections. It teaches us. It inspires us. It allows us to change the world, even in our own little ways -- like the YouTube clip of my high school friend's son Jack singing "Roar" or another high school friend's website about his son's courageous battle against leukemia. These are what keep me on Facebook--the stories that move me and remind me that even though my life doesn't always look that great, it's pretty darn good just the same.

We are, all of us, making our way through this world the best we know how. Maybe instead of using social media as a place where we brag about our accomplishments and show off our lives, we can use it to become the village it takes to raise our children. That's my goal, anyway, that somehow some of my story will help inspire you to live yours fully--even when it's not pretty.

For the record, I have every intention of taking Sky out to play tennis again tomorrow. He'll probably yell and hit balls over the fence and into the overgrowth just beyond. Pink will probably cry about how unfair I am, and Stow will most certainly eat something not meant to be eaten and break something not meant to be broken. In other words, I plan to keep enjoying this crazy, mixed-up life of mine--after all, it's certainly better than perfect.

Friday, August 22, 2014

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.

Friday, August 15, 2014

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.

Wednesday, August 6, 2014

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.



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?