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?

Published in: on April 2, 2012 at 2:29 pm  Comments (1)  

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

Published in: on January 8, 2012 at 9:00 pm  Comments (1)  

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.

Published in: on November 14, 2011 at 3:08 pm  Comments (2)  

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.

Published in: on September 29, 2011 at 10:36 am  Comments (2)  

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.

Published in: on September 18, 2011 at 7:22 pm  Comments (3)  

My Summer So Far

I’ve been totally slammed and feel like I’ve barely been keeping my head above water. Anything non-essential has slipped away from me. Here’s what we’ve been up to, if there’s anything you want more detail on, let me know and I’ll try to carve out enough time for a full post.

– End of year IEP. G is transitioning to the intermediate school (4-6 grade) so we asked the principal of that school to attend our meeting. Due to budget cuts they were considering going from 4 teachers in G’s grade to 3. We requested a full time aide for G in that scenario. Which we did not get, but we did get two hours of floating aide time each day to help during whatever times were hardest for G. We also got input into teacher selection, so DH and I spent an hour in two classrooms observing. We picked the most experienced teacher of the two because of her very structured and quiet teaching style.

– I substitute taught a handful of times at the end of the year. Twice as the para for a more severely affected autistic child than G. It was an enlightening experience. A lot of the skills I’ve developed raising G transferred over but I also learned a lot about what I don’t know.

– At the end of the year, the intermediate school principal felt confident that the board would approve hiring on an additional teacher for G’s grade. I was asked to sit in on the interview committee. The next day, the board did approve the position. Now G has a small class size *and* floating aide hours. Score!!

– DH and I spent a week in Vegas while G spent a week on vacation with my mother. Heaven.

– G started his first week of summer camp. This year, the camp is working with the National Inclusion Project to better include kids with disabilities. G had an aide from the adaptive sports program accompany him the whole week, paid for by the inclusion grant. The aide even accompanied him on the overnight camp out. It was a horse riding camp and G learned that he loves horses.

– We had one week with no activities scheduled. We quickly spiraled into endless arguing and meltdowns. We created a new token board system with three tokens per electronic device. G can lose tokens as warnings, and when a category is empty, he’s lost that particular device and has to earn all three tokens back with kind and cooperative behavior.

– Started swimming lessons, which have been rocky but overall are going well.

– I’ve started a hiking regimen where I get out at least three times a week by myself. Without a little self-care, I was going to lose it.

– I went to dinner with a girlfriend and tried to explain all of these events and how I felt about them. She asked if I’d ever considered talking to a professional. I’m sure it’s a valid suggestion, but I left feeling whiny and crazy.

So how are you surviving your summers?

Published in: on July 3, 2011 at 12:39 pm  Leave a Comment  

We Survived Disney!

Even after our difficult trip to Florida last year, which I touch on here, we went back.  Mostly  because that’s where my inlaws live.  But also to take G back to Disney.  This year we did things differently.  We had a highly structured plan for which parks we were going to visit on what day, although we prepared G for changes due to weather.  We created an excel spreadsheet showing G visually what he would be doing.  I’m going to try to insert it here, lets see how it goes:

(note the nana night and nana day – DH and I escaped for a night in a hotel!)

We also printed maps of each park and put everything into a folder and named it the “Folder of Fun.”  Each night G would check the schedule, select the appropriate map and study for the next day’s adventure.  When we went to Aquatica (Seaworld’s water park) he knew where every ride was and the order he wanted to see them.  We just followed his lead and inserted snack/lunch breaks.  It was pretty incredible!

The first day of our theme park adventure had us going to Epcot in the afternoon so we’d be there in time for dinner at one of the country themed restaurants.  Upon entering the park, we headed straight for Guest Services.  I had G sit on a bench with DH and my inlaws while I went to the desk.  I didn’t know G had decided not to sit but to follow me, until I let the lady behind the desk know that we were visiting with a child who had autism and suddenly heard a proud voice say, “Yes.  And *I* am the person with autism!”  The woman told G she was happy he was here to see the Disney parks in a very respectful and dignified way.  It was such an incredible exchange, I almost cried.  We quickly got a red card to carry around the park and we were on our way.

The red card was magical.  If we had gotten one last year, I think our major meltdown could have been avoided.  The card helped us find shorter lines by using the disability access points and even more importantly, the disability lines were quieter.  When there was a fast pass system, we used the card to access the fastpass return line.  Which was difficult but do-able – we’d hand G his ipod so he could sink into a game and we’d herd him along whenever the line moved.  It was very similar to our Olympic experience where we found using the disability security checks and shuttles extended G’s tolerance for crowds and waits to almost typical kid levels.  (not quite, but damn close)   G was able to see and ride enough to feel like he was getting a great Disney experience and we were able to keep his emotional temperature in the manageable range. 

Aquatica and Seaworld do not have such an extensive and helpful system for people with disabilities.  But their parks were much less crowded and chaotic, so it evened out in the end.  At Aquatica, we paid extra to rent a deluxe cabana.  It was in a quieter corner of the park and came with a fridge full of water.  We brought our lunch and snacks there instead of eating in loud restaurants to get quiet breaks in the shade.  Those breaks gave G the ability to recharge enough that he was able to tolerate waiting in lines for the rides.  And the lines were never very long to begin with, so it worked great.

The last thing we did was limit our time in the parks.  Instead of going with the typical persons attitude of staying all day and hitting every ride, we got there at park open and never stayed past 2pm.  That was more than enough time for us to see plenty without taxing G beyond his limits.  We rented a house in Kissimmee with a small pool in the backyard instead of staying in a hotel which gave us the ability to create a quiet bubble for G when needed.  G has always been a water baby – even before we knew he was autistic we’d figured out that baths were soothing for him and would often spend entire afternoons watching him play in the tub.  So the pool was an excellent way to calm down and recharge in the afternoon after our mornings in the park.

All in all, I’d say we not only survived Disney, we conquered Disney!

Published in: on April 13, 2011 at 1:41 pm  Comments (2)  

Remembering to Relax

I’m a hardass.  I admit it.  Like so many autism parents, since G’s diagnosis I’ve taken it upon myself to teach him the skills I think he’ll need to live the life of his choosing.  I never miss an opportunity to teach social skills or independent living skills.  I’m constantly thinking years into the future to identify potential issues and to break those issues into small steps that I can begin to teach right now.  I’m also the parent who disciplines the most.  DH tends to be the fun, game playing, friend-parent while I tend to be the parent who makes and upholds the rules.  In general, it works for us.  But sometimes, I need to be reminded to relax and have fun with my son.

DH was sitting out of sight in the dining room with his laptop when G wandered through the house asking me to help him find dad.  I agreed to help but also asked if there was anything I could do for him.  He said no, he wanted to ask dad to play with him.  I replied that I could play a game with him too.  Then he said, “No thanks.  I want to play with dad because he likes me more.”  Shocked, I asked what made him think that.  He said, “He doesn’t yell at me as much.”  (just a note, part of G’s autism is to exaggerate to the extreme.  Anyone who corrects G in any way is ‘yelling’ at him.)

It sent me into an emotional tailspin.  I began analyzing every interaction with G, second and third guessing every time I felt I needed to remind him of the rules or correct him.  It was not a fun week for me, I felt like I was the mother from hell and was emotionally traumatizing my child.

Today is the first day of the state assessment testing for third graders.  It’s no big deal to us, so while they’ve been practicing in class, we haven’t addressed it at home at all.  Still, G was very anxious about it last night.  After going to bed, he came out and asked me if I felt stressed.  I said no but realizing he was trying to tell me something, I asked if he felt stressed.  He replied, “Yes, I am very, very stressed.”  How fantastic that he was able to express a complex emotion!! 

I offered to rub his back to help him fall asleep and followed him back to his room.  I sat there for maybe 5 minutes, rubbing slowly and was able to feel the tension easing from his body when he sleepily said, “Sometimes, you’re a little mean.  But sometimes, you’re a little nice too.”  I held in my tears until I left his room.

I think overall I’m basically on the right track and am doing a good job.  But I’m constantly looking to the future and am trying not to miss a teachable moment.  Even when I’m playing with G, I’m focused on taking turns, being a good winner or loser, etc.  The lesson I’ve learned is to remember to live in the present and enjoy the moment right in front of me.  I think it is so common for autism parents to worry about therapy, social skills, the future in general, that we forget to simply enjoy our kids.  It’s something I’ll be sure to do as we move forward.

Published in: on February 23, 2011 at 12:00 pm  Comments (2)  

I Think We’re Gonna Make It

I hate the winter break from school.  It starts one full week before Christmas, which is way too long for a boy that can’t handle changes in routine, or the suspense of christmas gifts.  By the end of the first day he was telling us what we were getting for christmas so that we would return the favor and tell him because he couldn’t handle it.  All this caused his behavior to deteriorate.  He argued endlessly about everything.  I’m not kidding – literally everything.  Here’s one of our conversations:

Me:  G, go brush your teeth.

G:  I can’t brush my teeth!  You won’t let me!

Me:  That’s ridiculous, I’m telling you right now to brush your teeth.  I’m not preventing you from brushing your teeth.

G:  Yes you are!  You never let me!  You never let me do anything!  You’re the meanest person in the world!

After a couple days of this, I started sending him to his room for 20 minutes each time he argued excessively or called me names.  It helped him, because being alone has always worked to help calm G, but it also gave me a break.  And right until christmas day, I got a lot of breaks!

Once christmas came and went, things started getting better.  There was none of the anxiety inducing uncertainty of what was in that box under the tree to deal with.  And he had tons of new video games and board games to play so we’ve been having more family fun.

 Tomorrow night, we have a babysitter coming!  DH and I are actually going to try to celebrate New Years Eve.  I bet we’ll be counting down to midnight, not to celebrate the new year but so we can go home and go to bed without feeling completely lame.

After that, there will only be 2 more days until he returns to school.  I can easily survive two more days, it’s just a weekend.  Just a few more days and we’ll be back to our boring, comfortable, glorious routine.

Published in: on December 30, 2010 at 6:23 pm  Comments (2)  

Self-Identification

Back when we first decided to get age appropriate books to explain G’s disability to him, I went with books on Asperger Syndrome because it was technically correct.  G took to them very well and easily identified with the character descriptions.  Before we knew it, he’d incorporated Asperger Syndrome into his identity, his sense of self, and was very proud of what made him different.

Only a few months later, I read that they were removing Asperger Syndrome from the DSM and were replacing it with the broader category of Autism.  No big deal, except I’d just taught my son about himself using a different term.  I worried how my very factually precise little boy was going to handle changing the name when he’d just learned about that part of himself.  Then I worried about silly things, like if people would think he was elitist because he used AS instead of Autism. 

Since the change was a couple years off (and I very much appreciate the advance notice, I wish I got two years warning more often)  I decided not to do anything.  But I set about practicing myself as I found I’d become set in my own rut.  Try switching from saying you’re filling your car with gas to filling your car with petrol for a week and see how it feels. (flip that if you’re european)  It’s the same exact liquid – give or take some additives depending on your region.  It shouldn’t be a big deal, but saying petrol takes effort until you get used to it.

I’ve been practicing on this blog, using autism about half the time, and practicing in my conversations with other people.  Just recently at his teacher conference, where G was present to discuss his goals, I disputed an expectation typical for all third graders because G was, “an autistic seven year old so we’ll need to break the expectation down into more manageable steps.”  I looked at G to see what he thought of that and assumed it went over his head because he was unfazed.  We also have a book, “Different Like Me:  My Book of Autism Heroes,” that G adores.  He brought it into school when he was talking to his class about what made him different and they read a page once a week.  His classmates think it’s cool and it makes him very proud to be who he is. 

Because of all this, what I thought would be a Very Big Deal was really a non-issue.  Hubby is volunteering with the adaptive ski program this year and has a lesson scheduled next week.  We went out for ice cream yesterday (are we the only family that craves ice cream in the winter?) and while we were chatting I asked about the particular disability of his client.  He stated simply that the client, “is autistic.”  Upon hearing that, G said with excitement, “He’s autistic?  I have autism too!” 

Time to check one more worry of my list.

Published in: on December 19, 2010 at 11:07 am  Leave a Comment