H8 those intolerant people!

In a recent exchange on social media, a number of people I had previously thought sympatico expressed opinions which engendered in me a range of sentiments from puzzlement to incredulity to outraged indignation. The discussion veered from the original subject to consideration of a multi-award-winning radio talk show host who has a neurological condition (spasmodic dysphonia) that makes her speech “strained and difficult.” Some people said that she should not be in broadcasting, and things like, “Listening to her makes me want to stick a fork in my ear.” It was pointed out that the talk show host has a speech disorder; this went largely unremarked except most notably for a person who said something like, “I know her story and I don’t believe she’s as brilliant as some think.” So not the point! Besides which, she is totally brilliant.

Taking myself seriously as someone whose contribution should be a net gain on the subject of disabilities, I restrained myself from further comment once I reached the boiling point, and have been reflecting on it ever since. In fact, I have been reflecting on this for more than six months. I am mentally walking in circles, seeking a way out of the morass.

How can I work to build community with people when I want to smack them? How can I live with being so uncomfortable with them having no space for something that makes them uncomfortable? How in the world can I have friends outside of my little world of special education and disabilities advocacy if this is what people are like? Maybe I can’t, or at least not many. Maybe it’s time to grow up and realize that many people are going to really not like me if I steer the conversation to topics that make them uncomfy, and then when the conversation gets stuck, I don’t just steer it, I get out of my own comfort zone and give it a big push, and keep pushing.

At times like this, I wonder if maybe that doctor who thinks I have Aspergers is right. (He was my son’s doctor, not mine, so it’s not like he officially diagnosed me. He wanted me to come in and get the official imprimatura so my son and I could be in a study he was doing on effects of male and female hormones on the expression of Aspergers in men and women. So who knows, maybe he would have revised his opinion.) My own therapist does not think I have Aspergers. But I wonder, when I can’t get off this perspective, that those people are just wrong! Wrong wrong wrong! No two ways about it! They are WRONG.

Maybe that’s not Aspergers. Maybe that is just a deeply held conviction that all people deserve to live in a world where everyone is included, a conviction I have held as long as I can remember, since long before I became the mother of a child with a disability. So how do we include people who want to keep us out? If you have a clue, please tell me. If you are still talking to me, that is.

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October 14, 2013. Tags: , , , . Uncategorized. 2 comments.

Thyroid Madness

Just two days ago, I switched from a synthetic thyroid replacement hormone (Levothyroxin) to a natural dessicated thyroid hormone (Armour Thyroid). I have already experienced remarkable relief from symptoms that I worried stemmed from various mental health issues, about which I have written before. I know that whatever is going on, whether it is being made worse by being on the wrong kind of medication for me, that stress makes it worse. So I do not repudiate everything I have written about how the stress feels. I am just hoping that I will be able to dial things down a bit, once I have been on the new medication long enough to get rid of the side effects of the synthetic.

If you are interested in learning more about this issue, feel free to check out this blog, Stop the Thyroid Madness: 
http://www.stopthethyroidmadness.com/

October 13, 2013. Tags: , , , , , , . Uncategorized. Leave a comment.

Life and death issues

In No Points for Style, I have found someone writing about the things I could not find words for. This is the most penetrating essay I have read about how devastating it can be to parent a special needs child, not that our situation is anywhere near as difficult. The comments are highly worth reading as well.

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October 4, 2013. Tags: , , , , , . Uncategorized. Leave a comment.

A Pattern. A Problem?

Thinking about writing and the dark cloud lifting, I notice a pattern. No blog posts between October 2011 and February 2012, and more recently, no blog posts between October 2012 and March 2013. I do remember thinking about writing and wondering if anyone would want to read about my aha moment, when I realized that seeing the days stretching out ahead of me and feeling I was going through the motions, looking for joy but really just waiting to die, that this could possibly be the same thing as being “depressed.” In the time it took to think all that, less time than it took to write it out just now, I had decided that, nah, even if people would feel like reading it, I didn’t feel like writing it.

Plus, I was worried. If I wrote about being depressed, or how I really feel, what if someone from the school district got hold of it and used it to blame me for my son’s disabilities, and then tried to take his therapeutic placement away. What if they knew how little emotional reserves I have, and took advantage of that to ramp up the campaign to get my son back in a program in our home district, where it will cost less. Much, much less. Or what if one of my children read it and it hurt their feelings, so deeply that they could never recover, and would spend the rest of their lives estranged from me, even just the tiniest bit alienated in affection? That would be awful.

It felt like the dark days were almost over, at least for now.  Then the storm came.  Being inside with the sound of the television bouncing off the walls of our tiny house, this feels unbearable.  Then I look at the murals my husband painted in the dining room, and the penciled outlines for the kitchen mural I am planning, and I think, maybe I would feel better if I did something creative.  I think I taped those paint sample strips on the wall back in the fall.  How did all that time go by?

I could paint, or I could get out my sewing machine and make that weighted blanket.  But I would have to clear off the table, and that would take more energy than I have.  In fact, I don’t have any energy right now.  I feel like taking a nap.  But that seems scary, like I am old — old people nap — or maybe I am…depressed…so depressed that I need to sleep too much.  I feel swear words swirling around as if my head were a hollow can and the swear words were bits of gravel.  They want to fall but the can keeps spinning around so they go around and around.

Can’t I even take a nap without condemning or doubting myself?  That would make me really mad if I had any emotional energy at all.  Maybe this is the beginning of feeling better.  Surely I have not felt this bad for months on end.  I think I have felt better from time to time.  That must be so, because I don’t see how I could possibly go on and on feeling like this.  Now I’m sure of it.  I’m just having a bad day.  I actually have gotten a lot done today, and it’s okay to take a little nap.  I think I will find the cat and persuade her to take a nap with me.  Feeling her soft fur under my hand and hearing her purring on top of the quilt, next to me, always makes me smile.

March 7, 2013. Tags: , , , , , . Uncategorized. Leave a comment.

Hard lesson at the hardware store

I was standing in a long line at our small neighborhood hardware store, having come in for a few things I needed to get to work on a project I had been waiting for good weather to start, wishing I had realized earlier that I needed these things, so that I could have been out in the beautiful weather working on my project instead of standing in line in the store with all the other people who had been brought inside by the beautiful weather. There were two cashiers, and as we stood in the one line that is customary in this store, a man walked up from the direction of the head of the line and started another line behind one of the customers at the counter.

My intrapersonal battle of wits began. Who does that? That’s just wrong! Calm down. Let the staff handle it. Even if they don’t, letting one person go ahead is not going to add much time. Oh my God, another person got in the spurious line. This is ridiculous. Oh, great, now it’s three people. As I waged my inner battle to maintain equanimity, feeling outraged and at the same time judging myself for my rigid thinking and tendency to self-righteousness, I became very uncomfortable to the point of being on the verge of tears or some other inappropriate outburst.

I briefly considered complaining out loud, articulating the problem as a lack of clarity about where the line starts. That would be stupid, I thought, as everyone here knows what is happening, not only that there are now two lines, but that the cashier over there is being sooooo slooooow. And that was funny, because the spurious line went to the slower cashier, thwarting the people trying to get out faster than us conformists. As I calmed down, it came into focus how much time the slow cashier was spending talking to the person she was serving, the same person she had been serving while three customers paid and left the store from the line I was in. As she was processing his rewards card, she asked about his name and was he related to someone else in town of the same name who had been her teacher in kindergarten, and he began talking about his genealogical research. As the young man went on and on about his research, I wondered if I would actually get out of the store before the line-jumpers, and then declined to berate myself for being so opinionated, so inflexible.

Suddenly the penny dropped, and I realized that from his name, I knew who the young man was, that I knew his mother from the special education community. I realized that he had disabilities not unlike my own son’s, and I wondered if my son would someday be in a line in a store on a busy Saturday, with people behind him on the verge of complaining, and if they did, would he understand that it would not be about him, that it would be mostly about them and their own limitations.

As I left the store, I felt worn out emotionally, so glad I had not said anything to embarrass myself and hurt other people, so glad no one else had, feeling like a terrible friend and mother for having had all those feelings and thoughts, feeling awful about my own resistance to a life sentence caring about others. I had so wanted to be a mother and I remember enjoying it for years, even after we realized my son had issues though we did not fully understand what those issues are. When did I get so worn down that I struggle for control when faced with the least of adversities? I guess I will check out that “caring for the caregiver” series. Clearly, I have been standing too long in a never-ending line, but I am the cashier serving everyone else, letting everyone else come to the head of the line before I take care of myself, an all-weather project that cannot wait any longer.

October 1, 2012. Tags: , , , , , , . Uncategorized. Leave a comment.

Close Encounters of the Aspergers Kind

Sometimes at our house, it can be challenging to connect emotionally with one another.  There’s the constant challenge of Aspergers, but there are also challenges of each of us being in different states including emotionally exhausted, frazzled, stressed out, sleep deprived, annoyed, frustrated, angry, with each expecting from the others compassion and respect, regardless of their individual state of being at the moment.  Two of us (I will admit to being one) are, shall we say, high-strung, and the other two are mellow with a tendency to withdraw.  I’m sure we are no different from many households in this regard.  We also have a very small house so it is hard to get or give space.

Despite these challenges, there is a lot of humor in circulation around here.  Something that will elicit a smile, or even better, a laugh, makes even the worst of times more bearable, and seals the best of times on our hearts like a metaphysical smiley face sticker.

Having had my birthday and Mother’s Day within the same week, I felt that special longing for connection for a number of days.  We had decided some time ago to keep to a routine and not have the big observances for holidays or disruption to our physical space that came from decorating for Halloween, Thanksgiving, Christmas, Easter, the 4th of July, or for birthdays.  This is easier on me as it’s less work, on my husband and son as they both thrive on sameness.  I think it is pretty hard on our NT daughter, but she had her turn growing up, and accepts the change with grace.

So our holidays look pretty blah, but I still feel these days are special, and mark them in a small way.  I made an Easter basket for my grown daughter because that is still something special between us.  She brought her boyfriend over for a night of TV on my birthday, which I felt was a great gift, and she presented me with a gift bag on Mother’s Day with earrings in a design that she knew would be special to me.  My husband did nothing to mark either my birthday or Mother’s Day, but I have noticed that every morning, the first thing he says to me is, “Hello, sweetie.”  Did he always do this and I just noticed?  I don’t know, but I think now that it more than compensates for the lack of an annual card or gift.  I can’t stop smiling just thinking about it.

And he laughs at my jokes, a rare trait which I appreciate immensely.  He regularly cracks me up as well, with a very dry, understated humor.  Like the time we were newly married, visiting family, at my sister’s house with nothing to do at that moment except watch bad TV.  I was still adjusting to spending so much time with someone who is so much quieter than I am, and who watches so much more TV than me when we could be talking instead.  I was enduring watching the actor going on desperately about how he needed money, the music was ratcheting up the emotion of the scene, and the actor finally yelled, “I’ve got to have the money!” to which my new husband appended lightning quick and in the perfect tone, “To pay for my acting lessons!”  Perhaps you had to be there, but decades later, I remember that as a watershed moment, when I was reminded that the man is exceedingly thoughtful and witty, and that I love being with him, but really understood for the first time that his wonderfulness only emerges when he has space to be himself.  I hope our son grows up to be the same kind of sweet and thoughtful husband, and ends up with someone who loves the whole of him and does not compare him to an ideal created on Madison Avenue or in the pages of a novel.

My most personal interaction with my son on Mother’s Day occurred when I called him in to see a cute video.  Watching over my shoulder as I sat at my computer, he smiled as I played an awww-inspiring video of a dog jumping in circles on a bed.  When it finished, my son pointed to the URL (wimp.com) and deadpanned, “Weakly interacting massive particles.”  Then he left the room.

I know he loves animals and I could see that he enjoyed seeing the video.  One might think that this is typical Asperger behavior, but that is what is so funny.  He is not usually like that.  It’s like he was spoofing himself.  My take was that by not commenting on the content of the video, instead purposely seizing the opportunity to make an off-topic remark related to his beloved physics (which I flunked and avoid talking about whenever possible), he was exacting revenge on me for interrupting his round-trip between bedroom/mancave and kitchen, and letting me know that attempting to interact with him in this manner would bring me no joy.  Except it did.

It can be challenging to feel connected, but when I can slow down and accept the interactions instead of comparing them to what they are not, I find these loving relationships to be a source of great joy.

May 14, 2012. Tags: , , , , , , , , , . Uncategorized. Leave a comment.

Overheard

Now that I am taking a nutritional supplement specifically designed to help with tinnitus, I am finding my improved hearing to be a mixed blessing.  Please don’t tell my family I can hear better.  I am finding it advantageous to feign a deaf ear sometimes.  I learned this from my children.

Here are a few things I have overheard recently:

One child calling me back to talk as I’m getting ready to go out the door with the other child, is told, “Please don’t piss her off right before I have to hang out with her.”

On noticing the misspelling in the headline for a Casey James music video, Polk Salad Annie:  “Anyone who knows about wild greens from the south knows what POKE SALAD is.  I wonder if they spelled it POLK because it has to do with music and they’re getting confused with a polka.”

In response to a question from a friend on Skype, who I had no idea could hear me, “My mother.  Her humor is inappropriate.”

This was kind of a double overhearing event, occurring after I had stood outside the bathroom door (next to child’s closed door), asking the person doing personal care not bathroom-related to hurry up, then doing a schtick inspired by a scene we had just seen in the movie Bridesmaids, “I’ll just go pee in the sink,” “on your red rug” (where the pup used to have accidents), etc., which I had thought was humorous and designed to motivate the person to clear out as they were going to get no peace until then.

Not only did it not work, said child having a snappy comeback for every threat, I am now wondering who of my other child’s friends knows I make bathroom jokes and will I have trouble enforcing standards of behavior if the friend visits our home.  Or will I have trouble pretending we have standards.  Damn it all!  Oops, did I say that out loud?

May 4, 2012. Tags: , , , , , , , , . Uncategorized. 7 comments.

A desk, a decision

A few days ago, I bit the bullet and purchased a rolling computer desk at Staples.  It was a somewhat involved transaction with my turning in a hoard of used ink cartridges and redeeming a coupon I had received in the mail, to offset the cost of myriad small items plus the desk in a very heavy box in the cart, which the cashier said I did not have to take out. Eventually, I got rung up and navigated the keypad with my rewards card number and credit card. My total seemed a little lower than I expected, but since my Lyme disease, I can no longer do math in my head, so I tried to sort out my mistake as the cashier bagged my items, and couldn’t.  As I rolled my cart out of the store, I tried to let go of the mental math, and couldn’t.

I stopped just outside the doors, on the sidewalk with my cart, to scrutinize my receipt. I scanned up and down the receipt looking for what was missing, first by the unintelligible product descriptions, and then by the amounts charged. The only big ticket items were boxes of printer ink. I realized, it was not that my total was a little low; it was that the subtotal for everything but the desk was much higher than I had expected, and the desk was totally not there.

A number of thoughts occurred practically simultaneously, as if thoughts could run through my mind playing crack-the-whip:  “I’m outside the store and it’s their mistake,” holding tight to a disingenuous “maybe it’s there and I should go home and check the receipt more carefully,” alongside “there are eight items on the receipt and the desk is not there,” and “but I’m kind of in a hurry,” and the final thought “well, not really, but I could have been” seeming to spin away into oblivion.  The novelty of indecision in a situation like this jolted me out of my mental morass. I am a mom who has modeled honesty for her children at every opportunity.  I thought, what the hell is going on with me – money is tight, there are no witnesses, and I suddenly have no moral compass???

To top it off, a number of things made this random cashier error seem weirdly significant:

1. Just as I was walking past a closed register, a cashier had arrived to open it and announced he would help “the next person” in the really long line at the only other open cashier. I hung back as a person from the existing line walked over and stepped in front of me up to the register. No one else in the really long line made a move, and I said to them, “I know you all were here before me. Do you want to go ahead of me?” Most did not respond; the ones who looked up all shook their heads. Not a big deal, but seemed a little unusual to me.

2. I noticed that by a freakish coincidence, my cashier resembled Don Cheadle, the actor who played the angel in the movie Family Man. Great movie. We see the character playing a man trying to get service from a cashier, and later in the movie, as a cashier himself. When people did not do the right thing in this movie, you had to think, “No, no, no, you small-thinking, small-hearted human beings.” I thought that anyway. At the movie. And at myself standing outside Staples.

So I wheeled the cart back in. The cashier had disappeared, and there was again the one lone open register. I did not want to make a big deal by going to the manager, so I scanned the front of the store and saw my cashier walking toward the back of the store down one of the aisles. I called, “Sir, sir!” He looked up and I waved my receipt and said, “Could you just help me understand this?”  Once he walked over, I said quietly, “I don’t see the desk — did you charge me for the desk?” He looked over the receipt, said slowly, “No, I didn’t. I can do that now.”

As he opened the same register and rung me up again, he looked very solemn. I wondered if he had been going on break and was not happy that my coming back in had delayed him. I said lightly, “Do you think I’m crazy for coming back in?” He looked up from the cash drawer and said, “No, it’s great that you came back. People think they save money sometimes, but everything costs you; later you lose much more.” I took this to mean he believes that what goes around comes around, there is karma, everyone gets back what they give out, which made me think that he did not so much mind coming back to ring me out again.

I try to remember things like this when I feel like I don’t know what I am doing as a mom.  I try to remember that even when no one is looking, I try to do the right thing.  That has to count for something.

Epilogue:  I set up the new desk in the dining room, with the newish flat screen monitor.  I took a day to get the stuff on my old desk in another room sorted out, in preparation for moving my desktop computer tower to the new desk in the dining room.  Apparently the monitor and desk were not just sitting there in the dining room waiting for me.  They were calling out to my son.  He asked me if he could put his laptop on the new desk and hook it up to the new monitor, and I said yes.

That was the beginning of getting him out of his room to hang out with the family more.  So what if I still work at my old desk with a behemoth of a CRT monitor.  So what if his idea of hanging out is to be playing Minecraft on his laptop while he listens to the Food Network on the TV in the adjoining room.  So what if I will never know for sure that this truly is my reward.  So what if I could never know that a desk one walked away with without paying for could never have called forth this beautiful result.  I feel blessed knowing that just as crap and bad things happen every day, small yet wondrous things happen every day too, and it’s okay not to know why for sure, but it’s also okay to think that maybe the small things we do, they matter.

April 28, 2012. Tags: , , , , , . Uncategorized. Leave a comment.

Tears for a friend

I hear my son laughing, Skyping his friends as they play online together.  He is not yet aware that a girl he went to school with has ended her life, and that her body has been recovered from the park where they once played.  Her close friends found out within minutes of her mother finding the note, texting and calling each other.  The neighborhood found out as we heard and saw the first responders converge on the park by car, firetruck and helicopter, searching for the lost girl.

My husband and I talk about how to break the news.  Should we wait until we have more information?  What if he finds out from someone else?  That is not likely.  He is engrossed in his game, temporarily shut off from the world we consider real, in a different world inhabited by him and his friends, and their electronic allies and enemies.  The teenagers in the real world around us are of minimal interest.  Our teenager is no longer close to that crowd, having left them in middle school for extended stays in the hospital.

Even during the most difficult times, we were grateful that our son’s mental health issues had been discovered while he was young enough to want to return to our home and be with our family, while he still enjoyed our company, while he still trusted us, and before he could learn to self-medicate with drugs or alcohol.  The friends he plays with now are from his new school, a school for kids like him, and his isolation from friends from the neighborhood, from our old church, from elementary and middle school, is no longer as painful to him as it once was.

For me, the change was almost unbearable.  The end of his social world was the end of my social world, and I exchanged my work, parent coffees and volunteering for questionnaires, consultations, and waiting rooms.  The camaraderie I had enjoyed with other moms was gone.  No more conferring over those compelling questions, how long to let him play on his Gameboy, how much to spend on a birthday present for a friend, whether or not to require him to exchange valentines with classmates.  The questions were different now, the stakes higher.  Where do you draw the line with aggression?  Zero tolerance for physical violence, sure, but what about threatening posturing?  Yelling?  Sarcasm and disrespect?  How intrusive should you be when they seem down?  How much independence do you give them around taking their medications?

In my new peer group, the common bond is a profound love for our children, alloyed with profound sadness, weariness, and a bent towards self-blaming.  We help one another on the path to a healthier place.  It is still painful for me, but it is a pain I embrace, knowing that while our family is no longer in the social mainstream, my son will have the support he needs to deal with whatever comes his way.

As we talk about how to break the news, I wonder what kind of support he will need.  He may not need any.  After all, he spent months in the hospital with other kids with mental health issues, some of whom tried and failed to end their lives.  I’m sure they talked about it.  During one of our visits, he said he felt bad that an older teen who had been discharged, had had to come back to the unit.  I remember thinking, it was good that his family had access to great mental healthcare for him, and that they had known how acutely he needed it.

I know that later I will have to go in and talk with him about stopping the game and going to bed.  The dread I sometimes feel in advance of a difficult discussion is not there.  Whether or not he goes to bed on time, or at all tonight, seems trivial.  I hear him laughing with his friends.  I think of the girl we knew, and her friends and family down the street, weeping.  I am so sorry for them, and for the first time, I wish that other families could know what we know.

April 23, 2012. Tags: , , , , . Uncategorized. 2 comments.

Car Talk

I tell my Aspie, “Keep talking.”
I am thinking, pay no attention to the fact that I’m not listening.  It’s not that I’m not trying to listen. I am, really. But somehow he loses me when an oncoming car veers into my lane, when I am stopped at a light behind someone turning left and watching in my rearview mirror as a fast-moving car bears down on us, when I am approaching a green light unimpeded only to have someone blow through the red light right in front of me. You know, those lovely moments of Boston driving that occur so often now that everyone is so stressed out.
But I can’t get stressed out, because driving to and from school is when my son talks non-stop for his own stress control. I want him to go to school and come home without meltdowns, so this is our arrangement, that unless I tell him I am overloaded and he has to be quiet for us to be safe, then he gets to talk in an indoor voice as much as he wants.
I was trying to remember them from our trip Monday, but as I was driving, I could not write anything down.  It was nonstop, but I only remember two things: “You know what’s so cool about dark matter?”  and after he was done with that topic, the following exchange.
Aspie: “Mom, do you know about gravity waves?”
Me: “A little, just from what you told me about them before.”
Aspie: “Oh.  [Long pause].  Can I tell you again?”
Me: “Sure.”

February 16, 2012. Tags: , , , . Uncategorized. Leave a comment.

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