Autism Acceptance Day – 2012

Every year, I ramble on about how I want today to stop being about awareness and start being about acceptance. Today, I walk the talk. In the last year, I’ve moved from being only a mom obsessing about every new scientific advance and behavioral therapy, agonizing over how what I’ve read can help my son, to being a paraprofessional – applying my obsessive knowledge outside my family. It’s been really healthy for me. It’s given me an outlet for what I’ve learned that is more productive and it’s given me a better perspective on how we’re doing as a family. And I’ll say that my son is doing very, very well.

Here’s how I spent my Autism Awareness Day.

Woke my son for school by rubbing his arm, whispering his name and promptly leaving the room with no extraneous conversation. Waited for him to be ready to get out of bed and walk to the kitchen.

Made a bagel and gave him the choice of peanut butter or cream cheese as a topping.

Printed out his daily schedule, giving him time to look it over during breakfast.

Prompted G to dress and brush teeth.

Helped him tie on his new boots, the extra stiff ones that will hopefully help to keep his toe-walking to a minimum.

Drove him to school, reminding him to use his words when frustrated instead of hitting with his hands.

Grabbed a cup of coffee before heading to work.

Picked up my student and took him for his 15 minute sensory break. Did a puzzle while lying on his belly in a sling/swing, did football and superman exercises, and deep pressure exercises. Finally, ended with jumping jacks on the mini-tramp, focusing on getting his arms and legs moving at the same time.

Dropped my student off with the speech therapist and led a book club with six of his classmates.

Picked up my student, practiced his oral presentation on Cheese (food projects) several times. Focused on enunciating the words and facing his imaginary classmates.

Read books in between practices, working on sounding out unfamiliar words for independent reading rather than asking and memorizing.

Sat with my student while some of his classmates shared their food presentations.

Realized he wasn’t engaged in the presentations and wrote a social story about how to listen to classmates projects and how to fill out the simple response form after the presentation.

Sent him to recess, sat with the neurotypical students who also didn’t understand how to fill out the response forms and were missing recess until they were completed.

After sending the NT kids out for what was left of recess, quickly ate my lunch, performed my recess duty while my student was at lunch, came in to find he’d left the cafeteria while the lunch monitor was distracted and was unaccounted for.

Located my student in the hallway by the bathrooms, brought him back to the classroom for story time, helped him through the post-story comprehension activity by asking prompting questions and turning the activity into a challenge rather than drudge work.

Sent him off to PE with his class and ended my 4 hour work day.

Next I’ll pick up my son, prompt him through his homework and wait for the babysitter’s arrival so I can begin my weekly date-night with hubby.

So how was your World Autism Awareness Day?

I Won’t Give Up

We’ve had quite a week. G has had a rocky time of it in PE. He’s got motor issues, he’s at least one full year younger than his classmates, he’s competitive to the extreme and when he’s frustrated, he still struggles not to react by hitting. You couldn’t put together a more combustible combination. The school OT attends PE with him once a week to help him in all these areas. She also attends with kids on IEP’s the first year of Intermediate school because the gym teacher there is, “Old School.” Apparently he’s been in this position for several decades and can be rough on the kids he doesn’t understand. So she attends with the student in an effort to smooth the way.

The first trimester, G hit kids so often that a contract/reward system was implemented. When G had 10 recorded classes without hitting, he earned a trip to the ice cream store with a friend and the school psychologist, on school time. Big reward for a big undertaking. But by the end of the first trimester, he’d earned his trip! Second trimester started out wonderfully – G was participating to the best of his ability and his outbursts were greatly diminished. When he did get frustrated, his meltdowns were verbal in nature. Not great in the context of a typical 4th grader, but outstanding for G! On the weekly reflection sheets his class fills out on Friday’s, G consistently wrote that he planned to work the following week on his behavior in PE. He was highly motivated and we were getting nothing but good reports.

Then last week while at work, I got a call from the OT letting me know she’d be late for her time with my student. Because she needed to stay with my son, who was recovering from a rather severe meltdown. She’d been with him at PE where the activity was Dodgeball. (told you, this gym teacher is old school) G couldn’t follow the strategy and stood in the front of the group. He got hit, got frustrated and sat down where he was instead of moving off the floor. Another boy didn’t realize he was already out and hit him again. That was it for G, he went completely off and started screaming. When the OT stepped in, he started screaming at her and said rude things. But – and here’s the big thing – he never hit. Never even tried to hit, never faked hitting, just screamed and yelled. So the OT and I celebrated, as well we should!

Then report cards came. G failed PE. In a trimester where he made so much progress. DH and I were stunned, G was disappointed, but overall my attitude was to blow it off because it’s just PE and it’s just 4th grade. Honestly, my attitude didn’t change until our trimester conference with his classroom teacher. The kids write out a script and run the show. When G ran down his list and got to what he was most proud of, he said, “Well, I wrote that I was most proud of my work in PE, but that was before I got my grades.” On the way home, he asked if 0’s exist for report cards. When I said no, he made a remark about not needing to try hard to keep from getting lower grades in PE.

That started a slow burn in me. I went home and wrote a very polite and proactive email to the OT and school psychologist, letting them know to watch out for G the next week, as it seemed he’d given up trying to behave in PE. In our discussions, it became clear the grade was assigned because of the one bad day rather than the trimester as a whole. They were both shocked and not shocked that the teacher had reacted to G’s screaming meltdown so drastically. Somehow, the idea that this was typical for the teacher made it even worse for me. I went to bed very irritated. I woke up at 3am feeling mad and was awake for an hour until I could calm down and fall asleep again. When I woke up at 6, I was just plain furious.

I met with the school psychologist and vented about how angry I was. I’m never combative, I’m always willing to discuss and negotiate, to work together to achieve a particular goal. Not this time. We wrote up language for G’s IEP to prevent this from happening again. I told her that was good, but not enough. I was calling the principal to demand the grades be changed. On my way home, left a message requesting an appointment with the principal to discuss a problem with the gym teacher. This is big, because we’re a small-town, ‘I’ll just pop-in’ kind of system. But I didn’t want to risk being blown off. The admin assistant and the principal took this very seriously.

By the time I got to the school to talk to the principal, the psychologist had already talked to him. He was very attentive, went over my concerns, gave me an initial agreement and asked for time to talk with the PE teacher. When I asked for the grades to be changed, he told me he couldn’t promise anything because he didn’t have the authority to question teacher’s evaluations. But the next morning at drop off, he pulled me aside to let me know that he had spoken with the teacher and G’s grades would be revised by the end of the day!

They didn’t go up much, but it was enough for G to feel he’d made progress instead of failing. And that was all I wanted. G is proud of himself again. He’s motivated to keep trying. Isn’t that all we want of our kids? A new system, that is still being determined, will be put in place where G will know that 0-4ish outbursts (of any kind) in a trimester is a 1 (A) for sportsmanship, 4ish to 8ish is a 2, etc. And G’s skill development grade will be determined by observing him for two weeks as a baseline first, instead of comparing him to older, neuro-typical peers.

I feel as if I fought a dragon and won! I know we’re so lucky to be in such a wonderfully supportive school system. This was one icky teacher in a system of great ones, with a principal who truly puts the student first. Still, on the way home from school, I put this song on my ipod on a continuous loop. It’s supposed to be a love song, but to me it’s become an anthem for fighting for our kids.

Waiting for the Phone Call…

We had a bad morning. G was in one of those moods that reminds me of a teapot, water slowly heating and boiling, building pressure until the teapot is suddenly screaming. He was never outright defiant but instead would do everything I said to it’s most annoying extreme. For example, he selected his snacks for the day – two prepackaged bars and some cheez-its. He put everything on the counter and stared at me. When I reminded him that he is responsible for bagging his snacks and getting them into his backpack, he pulled out the baggies and deliberately put everything in bags. Including the prepackaged snacks. Then he stared at me again, as if daring me to comment. As I told DH later, I decided to leave the battlefield instead of waging war and retreated to my room to get dressed without comment.

Before we left the house, I told G to collect his boots and coat. He apparently thought I should do that for him and that doing it himself would make us late for school. He then set out to ensure we would be late for school so he could say, ‘I told you so.’ He walked sloooooowly to the car, huffing and sighing the whole time. When he was buckled and were leaving the driveway he tried to actively pick the fight he had been trying to provoke. I firmly (very, very firmly) told him we would not be talking about it, we would be having a quiet drive to school. I was hoping the silent break would calm and reset him. Instead, it just turned up the heat under the teapot.

When we got to school (on time) I reminded him, as I do every day, not to crowd the door where students wait for the first bell to ring but to wait in a less crowded spot. This keeps him from bumping kids or getting mad because he was bumped, as he still misinterprets this social situation and thinks it is deliberate. G responded by going to the extreme other side of the room. I thought that was great until another student got too close and G started yelling at the student to get away. I quashed that quickly and G went back to giving me the silent treatment – because I had told him we would be quiet on the way to school and he was still holding me to that statement.

I did my very best to detach and disengage and was outwardly successful. But now I’m sitting here waiting for a phone call from the school telling me G rocketed out of control. Maybe he will and maybe he won’t, either way I can’t seem to put it aside and enjoy my morning. Which means that if he does get over his mood and have a good day, I’ll have spent my entire day in a useless state of high anxiety. Some days, I just can’t win.

My Current Anthem

Holiday Breaks from routine can be so difficult.

So. Difficult.

Here’s the song I’ve listened to obsessively the past two weeks to get me through:

Matt Nathanson – Little Victories

Progress, Not Perfection

Next week, I’ll start a new job as a paraprofessional to a first grader on the spectrum.

I feel equal parts excitement and anxiety every time I say that, which is progress from feeling either total excitement or total anxiety. I’ve been substitute teaching in our school system, specializing in the resource positions, since the end of last year. I stepped into doing it after G has a disastrous week where both the general-ed and resource teacher were sick at the same time, causing too much instability in his routine. The substitute teacher for the resource position had no disability experience, made a couple of mistakes and … well… G punched her in the nose.

We absolutely took responsibility for G’s actions and made sure there were appropriate consequences. But as a team, the adults took a look at the events that led up to the incident and acknowledged the mistakes made on the part of the substitute. Living in a small, remote community, I realized expecting the school to find people who had the free time to sub and the appropriate experience dealing with challenging kids was unrealistic. Then I realized, I have both the time and experience. This was a way I could be part of the solution instead of moaning about the problem. I asked the principal if that was a role I could fill and she enthusiastically gave me the information I needed on getting a substitute teaching license. Since then, I’ve averaged working two days a week in both typical classrooms and resource positions. I’m pretty good at it. My biggest strength is that I’m not afraid of meltdowns – of all the kids on the spectrum in our school district, my son is probably the most physical when he snaps – so I’m able to maintain the calm needed to keep situations from escalating. Which is not to say kids don’t melt down with me, I’m just able to ride it out without panicking.

Two weeks before the holiday break I was subbing as a para to a boy in first grade, who is a lot like my G in language skills. I’d subbed in this position several times before so I had a good feel for this boy and a good relationship with his primary teacher. The principal stopped by and asked me to see her before I left. I couldn’t imagine what it was about – G moved to the intermediate school this year so it couldn’t have been another behavior incident. When we talked, she told me that the para to the boy I was working with that day was leaving and I was offered the job! The hours were 9am-1pm so they were very perfect for still being available to G. After some thought, I accepted the position.

I was feeling pretty great about myself that week, my ego was huge. “Wow, I am awesome!” went through my head more than once. And then the next week happened…

It was the last week before the holiday break – our personal witching hour. G had gotten through the week before with the holiday music concert and the associated schedule changes for extra rehearsals with no problems whatsoever. This last week there was a school play for his grade with more associated schedule changes for rehearsals. But this week, there was no aide available to keep an eye on him. I was told this and asked if we could see how it went without an aide since he had been having such a great year. And I agreed. The second day of rehearsals he walked into the auditorium and went to sit down next to his best friend when another boy swooped into his seat. He yelled at the boy and told him to move. The boy did not move. So G turned around, jumped into the air, and sat on the boy. In the process, the boys nose got hit and blood gushed everywhere.

I was feeling like the worst mom in the world. It was completely opposite of my high the week before and I started seriously doubting my ability to do a good job for any other person on the spectrum when I couldn’t get through to my own son. In talking with G about the incident, he knew he had made a bad choice but kept saying, “I didn’t hit him.” And it’s true, he didn’t hit when in the recent past his first reaction would have been to strike out, e.g the substitute incident. I realized I had been drilling Don’t Hit for the last several years but had never explicitly told G not to sit on people. And while the nose thing was pretty horrific (thankfully it wasn’t broken) it was an accidental consequence, he didn’t intentionally target the nose. And there were some extenuating circumstances on the part of the other boy. We’re now talking about not using your body against others in any way but instead to use words and seek the help of adults when kids are provoking him.

I realize now that we’re making progress but things aren’t perfect. And I think I needed that incident to reign myself in. I know I have skills and understanding that most people in my community don’t have, but I don’t know everything. I think I’ll be able to start my new job with proper perspective now, doing *my* best job but not expecting to do *the* best job.

How Full is Your Bucket?

I heard something awesome at my al-anon meeting last week, something that is going to make a major change as to how I manage my life.

One of my extended family members is dealing with a health crisis. I was talking about it at our meeting, because it has caused my entire family to go (what feels like) indiscriminately crazy. Not in a, “how can we rally and help this family member,” kind of way, but more of a, “isn’t this a tragic situation for me,” kind of way. This is pretty typical of the dysfunctional family. I want to be a loving, supportive family member, not just to the member that is sick, but to everyone. However after years of working on myself, I know my limits and am aware that I need to do a little self-protecting so that I don’t get swept up into the drama in a way that is not healthy. I know how hard-hearted this sounds. I was discussing my conflicting feelings of guilt and self-preservation when another member gave me the perfect metaphor.

Our life force is like water in a bucket. If every time we have a little water in the bucket, we dole it out to those we think need it more than we do, then we’ll exist in a constant state of drought. Always scrambling for the little water we have, trying to tip our buckets to extract the last little bit to give to others, shaking our fists at the sky – angry that more rain isn’t falling. This is the pitfall of extended caregiving. If instead, we tend our bucket and wait for the water to reach the top, then the excess spills over. We have plenty to give to others and can do so generously, with no feelings of resentment.

I’ve heard other metaphors for self care, but this one really resonated with me, maybe because I could better see the true benefit to being selfish. As a parent to an autistic child, I know it is so easy to fall into that pitfall of caregiving. We’re trained to give everything to everyone, not just our children, and to put ourselves last. But that is dangerous for our kids in the long run. What happens when we hit a crisis month and we’re already running on empty? Isn’t it better for my son if I tend to myself a little every day, so that when one of those crisis periods occurs (the holidays jump immediately to mind) I have ample reserves to get through it and can wait patiently for the next calm period to replenish? I can do this by giving myself a break each day. Asking my husband for help, telling the school I cannot volunteer one day, cannot substitute teach more than 3 days a week, or telling friends I can’t meet them today because I’m staying home to read a book/take a bath/take a nap. Or, by telling my extended family that I am supporting my sick family member in my own way but will not be taking 100 phone calls from them to talk about how awful it is.

Things are going to be different this holiday season. I won’t be doing everything for everybody until I’m run ragged. Before committing to anything, I’ll be taking a look at my bucket to see if I have the proper balance.

Hacking Autism

After developing an ipad app for our son to manage his daily schedule (‘Now What’) my husband decided to fly out to California to participate in HP’s Hacking Autism Hackathon. I am so proud of him! He’s going to tell me all about it and let me blog about it. Stay tuned…

Motives Vs Methods

There is a series of posts at the Thinking Person’s Guide to Autism discussing the role of parents and self-advocates in the disability rights movement that is quite fascinating. I have opinions, but not particularly passionate ones, so the debate in the comment section has been both clarifying and thought provoking at times.

In particular, there is a post written by a woman with autism who discussed how it made her feel to realize her parents had stacks of books about parenting just for her and how she felt going to various therapies. It contrasted what her parents were doing with how it made her feel. It gave me a lot to think about in the context of a conversation I recently had with G.

We were at the dinner table, discussing an incident at school that day. G was at recess when the teacher started calling kids to line up. G ran for the line and passed a boy who was sitting on the ground, still playing. G told him it was time to line up. The boy, who hadn’t heard the teacher, refused to comply and continued his activity. G, who becomes intensely frustrated when the rules aren’t followed, kicked the boy in the head. Hard. Like the boy’s head was a soccer ball. The incident was severe enough that the boys parents had to be notified.

So naturally, we were discussing what had happened, how G felt and how he should have appropriately responded to his feelings. G kept arguing that he couldn’t help it and would have to react the same way each time. It was not the first time, or even the hundredth time, we’d had this conversation on hitting. I admit, I got frustrated to the point where I told him flat out that he was wrong, that his job as a student was not to enforce the rules but to follow the rules. After a few minutes, G said quietly, “I know you don’t like my autism brain because you’re always trying to change it. But I can’t help the things my autism brain makes me feel.”

It was a stab in the heart. I love my boy more than anything and I firmly believe that with G’s intelligence and unique way of thinking, he can change the world. And I believe to have the successful life of his choosing, he’ll need to learn certain social skills to navigate in society. I always equate it to living in a foreign country. If I were to move to Poland tomorrow, I’d have to learn to speak Polish. I could relax and speak English at home with my English speaking family, and I might be able to find some English speaking Poles to help me from time to time, but the majority of my time in Polish society, I’d have to work my brain to translate my thoughts so I could get my needs met. But in my zeal to teach G Polish, had I pushed too hard and damaged his self-esteem?

The article on the Thinking Person’s Guide to Autism has made me examine my methods vs my motives. In the particular example I gave with G, I feel comfortable with how I handled it and can forgive my frustration. Because physical violence as a manifestation of frustration is clearly wrong, and not taking a firm stand on that now may land him in jail later. But what about the larger context of my parenting style? Am I doing enough to show G how much I love his unique differences? Am I taking the time to celebrate his autism brain the way I should? Am I praising and rewarding G when he reacts ‘appropriately’ in social situations or only criticizing his ‘mistakes?’ Am I creating a home environment where he can relax after a day in school, or am I forcing him to speak more Polish? Am I spending enough time simply enjoying G’s company instead of getting swept up into the early-intervention paradigm that teaches parents a day without therapy is a day wasted?

I wish I’d asked myself these questions earlier. I can see now that I need to work harder at creating a loving, validating, safe environment so when we need to have discussions on the black and white issue of hitting, it doesn’t feel like I’m adding to an already huge pile of criticism.

I’d recommend checking out the series on the Thinking Person’s Guide to Autism. Even if you don’t agree with much, there’s sure to be something there that will make you think.

Self-Advocating

We had friends from our old town come visit us for the weekend because our town had a music festival. They have two children, one G’s age and one about 5 years younger. They come up a few weekends each winter for skiing so the kids are used to each other and generally get along well. I volunteered to watch the kids on Saturday so the adults could go take in some concerts and watched them all play together nicely, even doing some great imaginary play. That evening, we had a babysitter come in so we could all catch the nights headliner and go to dinner.

The next day, our friends returned the babysitting favor so the hubs and I could go to lunch. DH and I were in the car, backing out of the garage, when the door to the house flew open. G stood there, shoes on, jacket in hand, trying to get our attention. We stopped and rolled down the window, and G demanded to come with us. We explained that he was staying to play with his friends but he was insistent that he was coming with us.

We were perplexed. G had never, ever gone through the separation anxiety phase so we had no idea what to do. I tried being firm and telling him he was staying and we were leaving. We tried reminding him of all the fun activities planned. Our friends tried to cajole him into staying with them. Nothing worked. I took him back to his room for privacy and tried to talk with him. All he would say is, “I just want to be with you,” in the most pitiful tone of voice.

DH took him back to his room to talk with him and had more luck. Apparently, G was overstimulated from all the socializing and needed a break. As soon as we realized this, we changed our plans. G came with us to lunch and our friends went to lunch on their own. As soon as we told him what we’d decided, he broke down. He started crying and saying, “Thank you – thank you so much for listening to me.” It made me want to squeeze the stuffing out of him!

It was as if the stress trying to get us to understand what he needed kept him from being to express himself effectively. Once he knew we were taking him with us, the words poured out. He told us about how the girls were so talky and chatty that he just couldn’t handle it anymore. He was overwhelmed by the noise, chaos and disruption to our usual quiet weekend routine. He was so grateful to have a break that he let us choose the restaurant, so we were able to get the nice lunch we’d planned on. We had a lovely, peaceful outing.

On the way home, we talked about the need to be good hosts for the remainder of our friends visit, especially since they’d been so understanding about going off on their own. He was very open to that idea because he’d had the time he needed to decompress. We told G how proud we were that he was able to ask for what he needed. Even if it took us awhile to really understand what he was trying to tell us, he didn’t give up, he kept insisting he go with us until we could work out the reason. I think this could be a major turning point for G – as long as DH and I remember to listen to what our son is trying to tell us.

Shameless Spouse-Promotion

Hubs developed a scheduling/executive functioning iphone app for our son and has decided to make it free for the next month! It’s called “Now What” and it automates what we’ve done manually with spreadsheets for G every day.

We found that G is much less anxious when he knows what is going to happen in advance, particularly at school. In previous years, we would ask his teacher for her daily schedule and would print up a checklist for him to refer to throughout her day. As we realized how effective it was, we included notification of schedule changes in his IEP. As the teachers realized how effective the schedule was (by learning the hard way and experiencing anxiety-induced meltdowns) they were more than happy to email us any changes so we could change the schedule and have G look it over on the drive to school.

This meant that 10-15 minutes of the morning were dedicated to checking for changes and printing out the daily schedule. I’m sure you all know that 10 minutes in exchange for a peaceful day is no sacrifice, but my techy husband wanted to make it even easier. So he came up with the idea for his “Now What” app.

It has the ability to create templates so if the day is a basic Tuesday with no changes, you just load Tuesday and it’s ready to go. You can make changes to Tuesday with out saving them for days when there’s an assembly or a fire drill. It also has the ability to prompt action for events. G has to tap the event, but then a pop up with the steps we’ve loaded will come up. So tapping ‘Math’ will remind him to turn in his homework, take out his pencil and proper folder, whatever we need him to remember.

It also contains a password locking feature. G is type of person where if he doesn’t want to do something, he’ll remove it from the schedule and that will make it O.K. in his mind. The password is our attempt to head that off before it becomes an issue. But the lock is nice for adults who want to make sure nobody messes with their schedule.

This app is currently available for the iphone, but he’s working to have the ipad version ready in time for G’s return to school. I’d also like him to add an alarm feature to chime at the beginning of each event, reminding G to tap and check for the prompts we’ve loaded. If you check it out and have any features you think would be useful, let me know and I’ll pass them on!