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.

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

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)  

The Ride is Rough

We’ve hit a rough patch.  I’m not entirely certain why.  I know flu and strep are going around the school, so much so that they’ve rescheduled class picture day hoping to get most of the kids healthy and back in class.  G has had several substitutes in the past two weeks and I suspect the disruption in routine caused by new faces and new personalities plays a role.  But after several months of calm where G really excelled at using his words to express his frustration, he’s reverted to hitting.  A lot.

The first incident was the worst.  The special ed teacher was out sick for three days and there were three different subs.  On the third day, G went to motor morning  – the first 20 minutes of the day where the kids with high energy or motor deficits work on skills and get out the fidgets.  It was supposed to be, ‘fun friday,’ where they get to play board games to work on fine motor skills.  Board games are G’s current obsessive interest so he grabbed a game first thing.  Apparently, the sub didn’t know games were allowed on Friday and probably told G to put the game away.  Being so focused on the game, G didn’t respond.  The sub then grabbed the game out of his hands and reprimanded G.  G responded by punching her in the face.

Hitting is never ok and this particular situation was very bad.  But the actions of the adult contributed to the reaction of G.  It got me thinking about the special ed teacher’s position and the requirements needed to substitute for that position.  It seems to me that a knowledge of disabilities is necessary.  Yet we live in a small, remote community where people with that knowledge and the free time to substitute are hard to come by.  Then I realized …  I have both a knowledge of disabilities and the free time to substitute teach.  Maybe I needed to, ‘be a part of the solution,’ and offer my time.  I looked into the requirements for my state and found a bachelors degree is needed, but not specific teaching credentials which means I qualify for a licence.  So I broached the idea with our principal, who responded enthusiastically, and I’m currently finishing the paperwork necessary to apply for a licence.

I’m patting myself on the back, thinking I put all my alanon work into practice by accepting our part of the blame (but no more than our part) and working to find proactive solutions when the other shoe dropped.  G had a horrible week, pushing his boundaries, pushing children, sassing his teacher and then hitting two classmates in the face.  There seems to be no underlying reason, except that his routine has been unstable.  But all his teachers are back so it would appear to be a delayed reaction.  DH and I have decided on an at-home extension of consequences where if he hits, he loses his technology priviledges for the remainder of the day.  If he gets in trouble for disrespectful talk then he needs to face the school consequences but there are no home ramifications because we want to make him understand that using his words is always better than hitting.

I’m not very confident that this will work – disciplining a behavior out of G has never been particularly successful.  But I’m not sure what else to do.  DH has seen a snippet of info about assertiveness training used for both shy and aggressive children to teach them how to stand up for themselves before it gets to the breaking point.  Anyone heard of or used this before?  We’re looking for more information but haven’t found anything substantial yet.

Meanwhile, I have the song “Have It All,” by Jeremy Kay on a continuous loop in my brain.  For those of you who haven’t heard it before, the refrain goes:

So I try so hard to keep the rhythm of a train
Rolling right along
When the ride gets rough you got to carry on

The ride is most definitely rough.  All we can do is put one foot in front of the other, stay patient, consistent and carry on.

Published in: on January 28, 2011 at 11:13 am  Comments (3)  

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)  

The Letter

We updated our letter from last year to make it current and it went out to the classroom parents this week.  G’s teacher was very enthusiastic about the idea and specifically told us we were doing a good job advocating for G.  I feel like it was our choice this year, vs last year when we were trying to head off problems with parents.  DH already got some positive feedback from another dad. 

Yet I still feel conflicted.  I know this is a proactive and positive step but I can’t help but feel that we’re betraying G’s privacy.  It’s a bit hypocritical of me, I talk about his autism with other parents often.  The difference is that is one-on-one where I can get a feel for the individual person before I say anything.  This feels more like taking out an ad in the paper. 

However, I know this is necessary.  The first few days have gone smoothly, as is typical.  We generally start seeing problems during week two that stretch into the remainder of the first month.  By giving parents a head’s-up, we’re garnering a little leeway while we work through the issues.

I know not everything relates to alcoholism, but I can’t help but wonder if this isn’t the true root of my discomfort.  When you live in an alcoholic home, you spend an extraordinary amount of time and effort covering up your family problems.  You create a facade of perfection so that nobody will suspect anything dysfunctional is happening behind closed doors.  Sending out this letter feels like I’m exposing our family secrets.  There is nothing shameful about autism, it’s just a fact of life, but taking this action goes against everything I’ve ever done from the time I first realized my dad wasn’t like other dads. 

Maybe the issue isn’t really one of betraying G’s privacy.  Maybe the issue is really with me and my fear-based need to be seen as perfect.

Published in: on August 26, 2010 at 10:43 am  Comments (1)  

Riding the Wave

After all the effort we went through to keep G in camp and make it a positive experience with him, I was exhausted when it was finally over.  The last session, with two para counselors and an aide, went smoothly and ended Thursday.  Monday was the beginning of our last free week of summer before school starts next week.  I woke up, got G settled in with breakfast and the Game Show Network (his current special interest) and sat down to drink my coffee and surf the web.

And found an email from G’s new teacher, responding to a request I’d made about having a pre-school meeting to go over G’s quirks and needs.

It was a perfectly lovely email asking what other staff I’d like to have attend and what time would be best for me.  But I wasn’t ready for it.  I was so tired from fighting all summer, I didn’t have any fight left in me that day.  Not that I needed ‘fight,’ exactly.  I just needed the energy to advocate and it was nowhere to be found.  The amount of work I saw looming ahead of me in the next month was overwhelming and I felt empty.  I couldn’t imagine how I was going to go about creating constructive working relationships with a new teacher and a new sped teacher.  Instead, I was pulled under that now-familiar wave of grief.  The same one that was so sharp the day G got his official ADOS results.  The good news is that the grief wave is gentler and shorter now.  I still had those, “I don’t know if I can do this,” type feelings but this time I also had a stronger, logical voice that said, “Of course you can do this, look what you’ve already done to advocate for G.  This will be easy when you’re ready to deal with it.” 

I consciously set about putting my alanon program to work in this situation.  I stopped myself from looking ahead to the next month, which is traditionally the most difficult time of transition for G.  Instead I focused only on that day, then that hour, then that moment.  I took some deep breaths – the kind we’re teaching G to take when he’s heading toward meltdown.  I left my computer and went to eat a healthy breakfast so I wasn’t operating on coffee-induced hysteria.  Then I decided to invoke the 24 hour rule.  I saved the email to be dealt with the next day, when I had a more rational sense of perspective.  Nothing in this situation was as urgent as I was making it out to be.  I didn’t have to get on the phone and schedule the meeting right that second.  After all, it was barely 7am.

Scheduling the meeting and coordinating who will be there has been easy.  G’s new teacher seems very open to talking with us and says she’s looking forward to working with G.  There was nothing difficult about this situation, it was all in my head.  I got sucked under that wave incredibly fast and it’s effects lingered the rest of the day, making me emotionally touchy, so it was good I decided to postpone responding.  I would have hated for my first impression on G’s teacher to be that of  Hysterical Mom.  So the good thing is that I have experience and the tools to deal with it now.  The grief wave wasn’t as destructive as it has been in the past.  This time I recognized what was happening and didn’t allow it to dictate my reactions.

Published in: on August 18, 2010 at 8:49 pm  Leave a Comment  

Resolutions

I’m a perfectionist so I usually make my New Year’s resolutions in October, practice them for a few months, and if I feel I’m succeeding then I’ll announce them on New Years Eve.  That way I don’t feel foolish for saying something Jan 1 and failing at it by Jan 31.  I also find that I get a second wind on Jan 1 that gives me a boost for another couple months and helps me make my resolution into a regular habit.  I’ve done this with exercising and found that joining a gym in October and exercising through the change of seasons helps my mood and gives me a delightful superior feeling when I watch all the new members in Jan learn their way around.  I’m shallow like that.

This year, I’ve been having a hard time coming up with resolutions.  As a family, we’ve been through some staggering life changes in the last 2 years.  I’ve learned about autism, alcoholism, IEP’s, 12 steps, therapy, sponsorship and learned how to be patient and tend to myself throughout all of this.  I think this year, I’ll take a break from resolving to make any kind of change.  This year, I just want to maintain our new lifestyle, to keep taking steps along the path we’ve layed out.  This year, I resolve not to change what I’m already doing.

Published in: on January 1, 2010 at 10:44 am  Leave a Comment  

Stuffing Emotions

I survived a holiday visit with my mother.  I say, ‘survived’ because I grew up in an alcoholic home and learned many typical but dysfunctional ways of behaving and coping.  I’m working hard to recognize these destructive behaviors and learn new ones, but nothing triggers a regression like combining a week long visit from my mom with the holidays.  It makes me introspective and while doing some deep thinking I’ve identified another intersection between alcoholism and autism.

One particular characteristic I’m actively working on is my long running habit of stuffing emotions.  Often, family members living with an alcoholic work so hard to deny that there is a problem with their loved one that they bury the worry, shame or fear they may feel and only acknowledge the happy feelings.  In my experience, it often wasn’t safe to express intense emotions.  Both tantrums and the over-exuberance typical of happy children were dealt with harshly because it bothered my dad.  In an effort to stay unnoticed, we lived in a kind of narrow range of emotions so that we could remain in control. 

I know when I feel happy, sad and mad, but the nuanced emotions like irritated, agitated, grief, passion, joy or fulfillment have long escaped me.  Ironically, I first recognized this problem when trying to teach G to take his inner temperature.  G has a quick and explosive temper which he expresses physically.  He can go from perfectly calm to enraged in a split second.  Usually, he is frustrated for quite a while but is unable to express that something is bothering him until it reaches an overwhelming level.  We’ve long worked to help him recognize the leading indicators of trouble so he can use his words to explain the problem.  I often tell him, “If I don’t know there is something bothering you, I can’t help you fix it.” 

Then I realized – I do the exact same thing to my family.  I bottle up the little things that frustrate me, and actively deny they are bothering me, until it reaches a critical point and I explode.  Recognizing this trait and working on it myself has made me much more empathetic to how hard it is for G to learn this skill.  So we’re working on it together.  When I’m getting agitated, I make sure to vocalize it to G.  For example, “G, I’m trying to have dinner ready by 5 o’clock, but the phone is ringing, the dogs are barking, and you’re asking for my attention.  I’m feeling overwhelmed and impatient right now.  I need to stop and take some deep breaths until I feel calm, and then I will answer your question.”   I make sure to analyze what I am feeling so I can recognize those nuanced emotions that I missed for so long and then I try to express and explain those emotions to G.

I’m starting to see this effort, which I started when G was 4, pay off.  Recently, G has been forgetting his polite words and has been simply demanding what he wants.  I have been doing what any parent would in this situation and have been making him rephrase his demand into a polite request.  After prompting G to be polite the other day, he huffed and said, “Mom, can you stop making me say please?  It’s really annoying and makes me feel frustrated.”

This is one of those double-edged sword moments.  On one hand, I am so excited – he identified a trigger and a nuanced emotion and verbalized both before he exploded!!  Unfortunately for G, I’m not going to stop nagging him to be polite.

Published in: on December 28, 2009 at 9:38 am  Comments (1)  

The 12 Steps and Autism

My family doesn’t just deal with autism on a daily basis.  We also deal with alcoholism.  So for the last couple years, I’ve been attending Al-anon and ACOA (adult children of alcoholics) meetings.  I first sat in the rooms about a month or two after autism was floated as a possibility for G’s difficulties in preschool.  My husband had also been in recovery for a month or two (come to think of it, I wonder if autism may have contributed to his recovery – thoughts for another day…)  I was full of anger and resentment.  All through my life, I was the ‘good girl’ who never broke a rule or stepped out of line.  And now my life was completely out of control and I was incredibly pissed off about it.  It took me quite awhile, but the first three steps slowly started sinking in.

I admitted I was powerless over alcohol, that my life had become unmanageable.

I came to believe that a power greater than myself could restore me to sanity.

I made a decision to turn my will and my life over to the care of my higher power.

This is not as easy as it sounds for me, note the use of ‘higher power’ in place of the more commonly used “god.”  I’m an atheist who doesn’t believe in anything if it hasn’t been proven by science.  But I was pretty desperate to get help, so I was able to cobble together a pantheistic type theory of a connected universe and the alanon group itself as a knowledge base with answers to common problems that works for me.  When I need to ‘turn it over’ I have an image of a helium balloon with my worries tied to its ribbon, and I release it to the universe.  (it’s ok, you can laugh.  The important thing is I found a way to make it work with my cynicism.)

All my life, I had been a fixer.  Control was incredibly important to my sense of well-being so when I ran into a problem, I set myself to fixing it with all my energy, so that my peace and ease could be restored.  I fixed my problems, I fixed my husbands problems, I fixed my sibling’s problems.  But I could not fix my son’s problems and this was cause for great distress.  I did a lot of research into biomedical treatments, causes of autism, vaccines, and the like.  I feel my cynical atheistic attitude actually helped me here because I could see that the science behind these aspects was sketchy at best, and nothing I, personally, could trust.  But that left me without a way to fix things for G and that was incredibly upsetting to me. 

Then, an incredible thing happened.  While sitting in the rooms one evening after the holidays, when the transition back to school was particularly stressful and volatile for G, I substituted the word ‘autism’ for ‘alcoholism.’  I suddenly felt a great weight lift from my shoulders.  I was powerless over autism.  By trying to exert power over autism, I was causing my life to become unmanageable.  Believing in a power greater than myself, and greater than autism, could restore me to sanity.  I made a decision to turn my will over to my higher power instead of trying to exert my will on autism, and therefore my child.

This doesn’t mean I have given up on my son – I still try to help him in every reasonable way I can so that he may learn coping skills and life skills, and I advocate for him in the community until he is ready to take on the role of advocate for himself.  The key word is reasonable. I recognize that I can’t make him be different because his autism is a part of him.  I can’t make him learn faster than his own pace.  I can’t force change, it has to evolve naturally.  And the small steps we take each day toward independence will be more effective than the miracle concoctions, diet changes and assorted cures being sold to me on the internet.

I was able to put my new found theory into practice last month when G started school.  It has been one of the most challenging transitions of his school career.  (so far)  When the parents of classmates started making complaints, I became overwhelmed by the stress of it all.  So I consciously sat down and worked my first three steps with autism in mind.  And it helped enormously.  I was able to focus on doing what I could to help G and to effect change in the attitudes of the people around him.  I recognized the things I couldn’t change – specifically that G was going to have to do the work of adjusting on his own.  I could support him with checklists for his schedule, snacks to keep him energized and introductory letters to parents, but I couldn’t change G into some kind of model student.

Sometimes when I read other blogs and blog comments, I can hear the anger and frustration in the voice of the parent.  I’ve been there.  I recognize that feeling and I still struggle from time to time.  Finding a mechanism to achieve serenity has made such an incredible difference in our family.  Because I’m not as irritable, my family  is not as on edge.  We’re able to take things as they come and enjoy the good moments more fully. 

I’ll close with this final nugget:

Grant me the serenity to accept the things I can not change

The courage to change the things I can

And the wisdom to know the difference.

Published in: on October 4, 2009 at 2:41 pm  Comments (11)