about Perspective (Part 1): What would you do? How would you feel?
Imagine you are a teacher of 20 elementary-school aged children and are also 37-weeks pregnant. In the middle of the hustle and bustle of a classroom party, one your students all of a sudden flees the room without you noticing.
Imagine you are a substitute for a teacher who is on a 6-week leave. Without warning, one of your students begins crumpling and ripping up all of his papers.
Imagine you are the parent of a 1st grader. You get a call from the school to come get your child. You learn that he has developed a large knot on his head because another child threw a chair that hit him.
Imagine you are the Principal of a pprimary school. A student has been brought to you for disrupting the classroom. He spits at you, disrobes, and urinates on the floor in your office.
Imagine you are the parent of that child.
Imagine you are that child.
This is Part 1 of a series of articles on Perspective. I have been procrastinating addressing a controversial topic, but because I don’t want to default on my New Year’s Resolution, I decided to take baby steps.
If you choose to share your thoughts, please post on the original post where you can also choose to post anonymously. Please be honest, especially with yourself…
about Mourning: The Grief Cycle
In the last 3 weeks, I’ve had 2 friends pass away tragically. In one case, my friend is actually the widow, and in the other, my friend and I were once in a small group together. Both are very dear to me. Not because we were best buddies and told each other our deepest secrets. Not even that we went out for brunches or coffee. No regular text messages or emails were ever sent between us. I love them because during the time we spent together, they both made an impression on me of love, positivity, humor, and beauty. Not just in general, but like it was for me.
“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” –Maya Angelou
That imprint on my heart they made is why I find myself mourning so much, especially for their families. Out of respect for their families, this article is not about them, but about the lesson I found about dealing with grief.
Grief stinks.
“Grief is a journey, often perilous and without clear direction. The experience of grieving cannot be ordered or categorized, hurried or controlled, pushed aside or ignored indefinitely. It is inevitable as breathing, as change, as love. It may be postponed, but it will not be denied.” Fumia, Molly. (2003) Safe Passages.
I’ve been fortunate to still have my immediate family here on Earth. Yes, I’ve had family members and like-family members pass away. I can remember the heartache at the time that it happened. But now my memories of them are of joy and happiness I shared with them while they were alive. I have completed my grieving process and enough time has passed that it no longer negatively affects the quality of my life.
Last night, immediately after the memorial service I became extremely overwhelmed. Not only for the obvious reasons, but I had been “relocated” back in time to a place in my life where “normal” was nowhere close to what my new normal has become since then. I was in a building and surrounded by people and memories of that past life that, comparatively, was much simpler, more flexible, more prosperous, and made me more available to be of service to others. I was reminded of the personal struggle of being on the fence of deciding to leave a life I wanted to keep but couldn’t have my cake and eat it too.
It was at the end of the service when the “losses” that I have had to face since then all came rushing back to me. Right there. In the most inappropriate place to be thinking about yourself.
I found myself feeling like a stranger, an outsider watching people mourn and comforting each other. I didn’t know what to do. It was like I didn’t belong. **
Like I didn’t deserve to be there, to be among the hurting, to be hurting.
I became dizzy with feelings I have already once mourned – the rejection, the isolation, the loss of friendships, the loss of trust, the judgment of being a bad parent despite the constant effort I put into it, the judgment that my child has special needs despite his high IQ, that my child is not accepted, that his sibling is not accepted, no birthday party invitations, no one coming to birthday parties, the loss of social engagements and adult interactions, the loss of freedom, the lack of support, the lack of help, the lack of time/money to hire enough help, the ten-fold increase of responsibility, the finality that it really is all up to me and accepting that this is not going to go away, the loss of simplicity, the fact that “Catch 22″ is the way of life, that even the best of friends don’t know how to help so they don’t, that even the best of friends think they know how to help so they do- but they don’t, the loss of confidence, self-esteem, and ultimately mourning the feeling that I had to hide all of these emotions and fears because of the feeling that no one would understand, no one would care, no one should have to endure my drama, and I didn’t want to be pitied.
Why was this happening right now? I’ve been through this already. I’ve forgiven myself, I’ve forgiven people. And fortunately, I have a failing memory so I’m pretty good at the forgetting part too. I know it had to be evident on my face, but I also knew that I was the only one focused on me.
I felt horrible.
I felt insensitive.
I felt guilty.
So I left. I left, again.
The original model of the stages of grief have been expanded in this article I found.
- Shock stage: Initial paralysis at hearing the bad news.
- Denial stage: Trying to avoid the inevitable.
- Anger stage: Frustrated outpouring of bottled-up emotion.
- Bargaining stage: Seeking in vain for a way out.
- Depression stage: Final realization of the inevitable.
- Testing stage: Seeking realistic solutions.
- Acceptance stage: Finally finding the way forward.
I, like many others with children/spouse on the autism spectrum, know this process of mourning, especially the first 5 stages, oh-too-well. It often presents itself as a CYCLE. Not necessarily because of an avoidance of accepting the deck of cards I got or of developing realistic expectations (though sometimes it is!), but because sometimes new things present themselves – things I maybe didn’t know that I was unrealistic, or things where I wasn’t quite realistic enough – that can blindside me and send me all the way back to square Shock. Other times, it might be a former issue that I thought was long gone that rears it’s ugly head again, or a y response that I could go to the bank on getting every single time I presented an x stimulus goes haywire, leaving me looking and feeling like an idiot or liar or both. (Although admittedly, sometimes that unpredictable ‘if x, then y’ outcome is favorable and provokes a different kind of shock!) Because of the constant unpredictability of extreme behaviors and the lack of communication skills, this cycle gets set off daily, and often. A meltdown doesn’t even have to ensue. But the constant effort of preventing a meltdown, or the constant reminder to stop taking literal comments personally, fuels the roller coaster’s engine. I feel like a mouse in its wheel running so hard, but getting nowhere. I dismount, just to remount on the same wheel in the same place and run again.
At the peak of “This Stinks” mode, I hear the voice of our family counselor repeating in my ear “this is the life you’re signed up for and you can’t get stuck here. You have 2 kids that are depending on you. It’s time to move forward.” Cheap shot for motivating me…but sometimes perspective is all I need and I’ve heard her say it enough that I don’t have to call her to hear it anymore (though sometimes I forget and I still call her and then she says it again and I’m like, shoot, I knew that already! Never mind, carry on, have a nice day). Over time, this grief cycle may not necessarily approach zero, but I can see the circle shrinking, stages being skipped, and soon I’ll learn to zip around the bend quicker with each new shock that comes along. I’ve already mastered with the whole peeing on the floor thing…once I learn it has happened, I can go from Zero to Acceptance in less than 30 seconds! There’s no shock or denial, anger and bargaining is more from the owners or cleaners of the floor, depression looks more like embarrassment for whomever had to witness it.
As I sat in the parking lot after a good weep and a prayer, I took a moment to acknowledge and thank my friend in Heaven. Then I collected myself and made another list of what I’ve gained and have been able to overcome, parenting skills I’ve developed, learning to appreciate the smallest of milestones, massive spiritual growth, appreciating and loving people – all people – the way God loves me, the gift of amazing teachers and therapists leading to marked improvements in The Elder’s development, and all the many blessings I have received on this side of the fence where who cares if the grass isn’t greener….I’ve got the whole spectrum!
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about Mimicking: Youngerese is starting to sound a little familiar
‘Mommy, if you want to put butter all over the sides of my bread, you may.’
‘You can’t do — AND —. You have to choose.’ Then in same oh-well tone as me, he adds, ‘Ok, then. It’s your choice.’
‘MOM! I washed my hands with soap!’ he announces when leaving the bathroom.
–The Younger (age 4)
Ever notice how your kids start picking up your mannerisms and catch phrases (and rules)?
Because The Elder didn’t converse at age 4, he never really mimicked me. The Younger was a different story. He was carrying on conversations with people (with a valid picture ID) by age 3, as well as the walls.
I am constantly reminded of the differences between the two because of the juxtaposition of their development within the confines of our family. It’s both fascinating and frustrating.
It’s fascinating to see their development and how I can respect each milestone (and each inchstone) they reach with a much greater pride than I think I would’ve had if we hadn’t been ‘blessed with autism.’ It’s interesting to learn what ‘typical’ looks like. The Younger will pretend (on his own without prompting!), voluntarily hug and kiss us and say ‘I love you,’ beg to go outside to run around and play, prompt us for attention or approval, make/draw things for us, and other nice little typical surprises that we didn’t even know existed yet. This played a huge part in early intervention (in my opinion) for The Elder. I am grateful for their birth order and the 2-year distance between their birthdates. ’They’ say that it is common for the emotional and social development of children with an autism spectrum disorder to lag at least 2 years (–They, circa 2000). In the last 2 years The Elder has picked up these ‘habits’ and ’scripts’ from his brother. Today at age 6, he has grown to enjoy many of these habits, like choosing to play outside over a computer game, and pretending. His creative side has really developed since being in the 1st grade. There are still scripts and if-then scenarios that are apparent to me that they are little performances, but to the general public, he is perfectly normal. And I’ll take a hug whenever I can get it! 
As for the other side of the coin, I often get thrown for a loop when The Younger has typical emotional responses yet inappropriate corresponding behavior responses. I knew early on that we had to surround him with positive peer models. That way he understood that, when he’s hungry, to say “I’m hungry,” and not to strip naked and pee on the floor. That is definitely not the kind of mimicking that gives me warm fuzzies. Being the little brother who adores his big brother, mimicking is expected and is how he expresses that love (great). He will, overnight, developed the same phobias. Because The Elder acts as if ‘buttons’ are manufactured by The Devil himself, then surely that’s a valid fear, right?
BUT the flipside of the other side of the coin is that The Elder learns unpleasantries from The Younger! The Elder skipped some of those developmental phases of toddlerhood and preschool (every parent’s wish, huh?), like developing a sweet tooth, lying and stealing (often to hide his sweet tooth), calling me ’stupid’ and yelling ‘I hate you’ when I’ve deprived him of something (to satisfy his sweet tooth I’m sure). But he has begun HIS phases at age 6 after observing The Younger. His ‘regressions’ are actually his mimicking of his brother (he never actually did those things in the first place to regress to them).
As an adult, I catch myself mimicking others too, especially those I frequently see or talk with. I guess its just a part of human nature in all stages of life. The hard part is not enduring the Terrible Twos through the Satanic Sixes (and beyond). The hard part is myself being a good role model for them to mimick.
