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

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

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.

Published in: on January 4, 2012 at 11:53 am  Comments (3)  

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)  

Meeting Dr. Grandin

Temple Grandin is coming to our community to speak about Autism.  Tonight.  We’re bringing G to see her speak.  I’m wildly excited and very anxious to make this a wonderful experience for G.  You see, when we decided to explain autism to G, we made a decision to emphasize the positive aspects wherever possible.  To that end, one of the books we used to introduce and explain the concept of autism was Different Like Me:  My Book of Autism Heroes.  It discusses successful historical figures who if they were born today may have been diagnosed with autism, and talks about how their focus on their particular special interest was a source of professional success.

One page in the book is devoted to Temple Grandin so G is really looking forward to seeing her.  My concern is having the evening backfire on us.  I don’t see my active 7 year old sitting quietly for a speaker like this.  It’s also rather late in the evening for G.  The talk begins at 5:30 followed by a book signing where we hope to get her to sign her page in our book for G.  G’s current routine is dinner at 5:00, bathtime at 6:30, reading time at 7:00 and bedtime at 8:00.  Sometimes he can be flexible for a special event – but then other times he absolutely cannot.  And I’ve never been able to predict his reaction.

My hopes are way too high.  In a perfect scenario, Dr. Grandin would deliver an inspirational talk targeted directly to my son that would reinforce the message of autism we’ve crafted at home.  They’d meet after the discussion, have a wonderful moment and G would find an autistic adult he could look up to for the rest of his life.  No problem, right?

Realizing how irrational my hopes are, DH and I have a plan we’ve calmly gone over with G, stuffing all our excitement and worry deep so G won’t pick up on it.  We’re going to bring G home from school, have an early dinner and head back to the auditorium.  We’ll put coats on seats at the end of a row near the door so we can easily leave and come back as G needs breaks.  While we wait for the talk to begin, we’ll have G outside running off as much energy as possible.  We’ll have his ipad and nintendo DS at the ready with headphones so he can still hear his games.  We’ll have a bag of snacks, drink boxes and gum.  Worst case, DH and I are mentally prepared to leave whenever G is ready to go.  We may drive two cars so one of us can stay to have the book signed for G, so he isn’t disappointed in a week when he realizes what he missed by leaving.

The next two days are going to be huge.  There is the lecture tonight, a parent/teacher discussion group with Dr Grandin tomorrow morning and G’s IEP meeting in the afternoon where we discuss his transition to the intermediate school.  Wish us luck!!

Published in: on May 2, 2011 at 11:28 am  Comments (2)  

More Lessons in Friendship

Operation Friendship went into effect last week.  G invited another boy to join him and his best friend at his weekly social skill practice.  While G and the new boy were occupied with an activity, Miss L pulled the best friend aside to let him know that if he was feeling overwhelmed or needed a break that he could express that to her.  The best friend (I’ll call him BF)  told her that he loved playing with G and was doing fine.  But they still put a plan in place where if BF felt he needed a break he could put a note in their teacher’s confidential comment box.

On Friday, BF felt he needed that break and put the note into the comment box.  G’s teacher got another boy, E,  excited about playing with G at recess pulled G aside to let him know what was going on.  Tears welled up in G’s eyes but he reportedly held it together well.  She started to coach him on the idea that he and BF were still friends when G cut her off, saying he knew all that because his mom explained it to him.  She asked him to tell her what we’d talked about and he repeated all the ‘rules of friendship’ in a typically scripted fashion.  Which means the words sunk in, but putting those rules into practice was emotional.

E let G pick their recess activity and they played really well together – morning recess was a success!  But at lunch recess, the teacher forgot to put as much time into prepping G, understandably assuming that he would still have their earlier conversation in his head.  At lunch recess, G told his playground aide that he knew BF wanted to play with other boys but that was ok because G wanted to play with those other boys too.  Rather clever manipulation on G’s part.  It took some discussion to make G understand what giving your friends a break really entails and was again very frustrating and emotional for G.

My heart is breaking for G.  It was such a monumental moment when he formed this close friendship with BF.  Watching him learn these hard lessons about relationships is bittersweet.  I know it is wonderful that he has the capacity to learn these things and it is important to teach it this way vs letting him smother BF until their friendship is damaged.  But it is so hard to watch him struggle with this.  I just want to hug him and cry with him.  It’s also a little scary because while I know we’re doing everything we can to teach these lessons in a proactive fashion, there’s no guarantee that it is going to work.  G has such a strong desire to be social but there is the very real possibility that G will suffocate this friendship and then be in a spot where he has no friends again.  We’re in a position where we can teach what we can and support where we can, but the outcome is completely up to G.

Published in: on March 14, 2011 at 9:37 am  Comments (1)  

A Matter of Perspective

I went last night to the parent meeting I discussed in my previous post.  I went with low expectations but was still very disappointed to find the only other attendee besides myself was the most angry parent in the group.  I knew right then that there would be no mutual support offered or accepted, no positive conversation about what we can do to better support our kids.  But I realized I was making assumptions and reminded myself that if I want things to be different I need to contribute to change so I sat down intending to make the best of things.

The autism coach working with the schools holds these meetings to address issues we may be having at home.  It’s to make sure the childs entire life is being looked at and addressed.  It’s to help with such issues as eating, sleeping, meltdown management, behavior in public settings, etc.  It’s a great way to round out what is going on at school and a way to make the interventions consistent across the board.  The point is not to complain about the school because he’s already working closely with the teachers and staff to help them learn new techniques and to implement those techniques consistently. 

But that isn’t how the discussion goes.  The angry parent complains that the school isn’t listening to this, they’re not doing that, etc.  She may not be wrong, but her perspective is completely one-sided, as if her son is ready and waiting for instruction but they refuse to give it.  In one instance, the intervention she wanted for her son and blamed the school for not providing was completely rejected by her son and the autism coach had witnessed that refusal first-hand.

My point in talking about this is not to vent about the angry parent, but to talk about mutual responsibility.  All of us fight every day for our children because we want the very best for them.  And there are most certainly times when the schools are taking the easy way out, meeting the bare minimum of their legal obligations.  But I also believe that as parents, we need to acknowledge the reality that our children play a vital role in their own education.  There are times when we need to hold them accountable just as we hold the school staff accountable.

For example, right now G is refusing to do any work he feels is boring.  Which is about 85% of his day.  We met with his teachers and went over strategies to try, we got him an extra hour of resource time where he can take the work for one-on-one help, he has an adult scribe for him whenever the point of the assignment is to convey information rather than handwriting or he can answer orally.  But a large part of the solution is for G to understand his role as a student.  Therefore whatever he refuses to finish gets sent home to make sure his refusal isn’t a successful way to escape what he doesn’t want to do.  While I understand G’s frustration with his work, I don’t blame his teacher for the assignments being stupid or too much for him.  (however, handwriting assignments can be too much for him and we push back there)  I’d like the school to focus a little more on keyboarding than handwriting, but I realize that G finds typing practice just as boring as any other rote assignment and has started refusing to comply in this aspect as well. 

When developing a working relationship with our kids teachers, the thing to remember is that people don’t go into education because they hate children and want to wreck as many young lives a possible.  Navigating the special-ed system can be so frustrating that it feels that way at times, and there are situations where the staff is so burned out that they don’t give our kids the focus and energy that they deserve.  But it isn’t always the case.  Sometimes educators are trying their best but don’t fully understand autism or don’t know what else to try.  Sometimes they’re trying all the recommended  interventions but our particular child isn’t responding.  That’s when we need to work as a group to help them understand our individual child better and help brainstorm ideas.  And sometimes, that means we need to take a hard look at our own child and really acknowledge their level of contribution.  We’re a team.  And the blame-game has never solved any problem.

Published in: on January 12, 2011 at 11:17 am  Leave a Comment  

Parental Support

As a parent of an autistic child, where do you find support?  Only on the internet via your blog?  Do you have a face-to-face network?  What is it like?

For the past two or three years I’ve been attending Al-anon and ACOA meetings.  In our format, a topic is introduced, there’s often a corresponding reading, and then attendees will reflect on how the topicapplies to their life.  But each share is supposed to focus on the members experience, strength and hope.  Negative venting happens, of course, but the point is to figure out how to take a situation and make it better.  Perhaps by acknowledging your part in a situation and taking an action to correct it, or perhaps by realizing there is nothing that can be done and simply accepting your current reality with grace.

Our BOCES is trying to start a support network among the parents of autistic children in our school district.  I’ve attended all of the meetings, but they’re awful.  There’s no mutual support, offering suggestions for what works in other houses, no positive reflections on what is working or proactive ideas for how to address a problem.  There isn’t even a hug or an expression of empathy when someone is having a difficult time.  It’s mostly just bitching and blaming.  Two families arrive angry – every single time.  They talk about causes and lawsuits.  There’s another family I’m trying to connect with but progress has been slow.  I’ve tried exporting what I know from alanon – not in a preachy way, I just mean I try to share a recent success or a problem we’re having and what we’re currently trying in addressing the problem.  It goes over like a lead balloon.

However, I refuse to give up on the group.  I want to believe that the anger will fade with time and we can actually support one another in a meaningful way.  There’s another meeting tomorrow and I’m looking forward to it with equal parts dread and anticipation.  Last time we met I ended up ranting on a post here that I had to make private, there was just nothing good that would come of leaving that out in the ether.  Tomorrow, whatever happens, I’ll find the good and accept the rest.  And continue to use my blog to find the kind of support I need.  🙂

Published in: on January 10, 2011 at 5:16 pm  Comments (7)