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.

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

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.


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.

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.

How do my children pity me? Let me count the ways. One.

Sitting with his therapist and me, my son confided, “I didn’t get to sleep last night until 11:10.”  He added with a smile, “I thought that was cool.”  I said, “I get a kick out of that too, like when the clock says 1-2-3-4 [12:34].”  My son looked at me, like how in the world did I think that might even approach being cool.  “Mom,” he said, “that’s not binary.”

February 6, 2012. Tags: , . Uncategorized. Leave a comment.

Dinner at the Vegan Bistro

We just got back from a belated birthday dinner at a new vegan restaurant I have been wanting to try, just me and my Aspie, as guests of a family friend. My Aspie was in his element, doing something he loves with me and a friend who has a special connection with him. It occurred to me, our life is not heavy all the time – just when I am trying to make him conform.

I watched him from across the table – we two adults sat together on one side of the table while the man-child sat on the other side. As we read the menus, he asked, “Is it weird that I’m a kid and I already know what all these wines taste like?” He knows from watching the Food Network and from tasting food cooked with wine. He has told me that he has already decided he will never try alcohol, thinking it’s a bad idea to mix with his meds.

Our friend said, “No, it’s not weird. In many cultures where people drink more wine, kids grow up knowing what wines taste like.” That started a discussion of traveling, living abroad, drinking local water or not, bacteria in the gut, the immune system, and other fun dinnertime topics.

My Aspie repeatedly offered me a sample of his cornmeal-crusted oyster mushrooms, and I repeatedly declined politely. Finally I said, somewhat perplexed, I didn’t understand why he kept offering me oyster mushrooms when he knows I am allergic to shellfish. He and our friend erupted in laughter and he explained, they are only called oyster mushrooms, there is no oyster, only mushrooms. I was mesmerized by his gestures, gentle and graceful, as he described the shape to explain why they are called oyster mushrooms.

Our friend asked about school, and my Aspie told us that his class started a unit on Byzantium and he already knew all the facts. I asked when he had learned about it, and he told me that last year, in a different school, his classmate A “liked”  – had a typically Aspergian deep interest and knowledge of a narrow subject – Roman history, and so my Aspie learned what he could on his own about Rome and Byzantium so he could talk with A about his preferred topic. He related this in such a matter-of-fact manner that gushing about what a great friend he is seemed out of place, so I didn’t, though I thought it.  Imagine, setting out to learn some world history just to be able to talk to a friend, and then actually being able to do it.

I feel very blessed that he is such a brilliant and caring individual, yet I could not help thinking, even as half my mind was engaged in the spoken conversation, what in the world is there to grow up to do for a child like this? I know part of my anxiety stems from the fear born of ignorance. I have no idea what is out there for him.

October 15, 2011. Tags: , , , , . Uncategorized. Leave a comment.

Stepping into the hug

Today feels typical. It is not even 10am, and I feel frazzled and anxious.  I can’t show it without making my son anxious, so I sit at my computer, trying to use calm breathing and remember what I was supposed to get done today.

On Wednesdays, my husband needs our car for work.  I have a friend, who among other ways she supports our family, loans me her car every Wednesday.  My husband drops me at her place, then drives off to work.  She gives me her keys, I get in her car and drive home.  This is supposed to happen at 7:30 am; however, last night, when the plumber called to say he could drop by at 7:30 to fix something that I had called him to say was not working well in the toilet that was put in two days ago, I said okay, not thinking about it being Tuesday and that the tomorrow we were talking about was Wednesday, when my husband and I needed to be picking up a friend’s car at 7:30.

I did not make the connection until about 6:30, when I realized I was getting ready in my head for two things that were supposed to happen at the same time.  I mentioned to my husband that we could not leave until after the plumber came, and he looked very stressed.  I felt bad, and now I’m thinking, I don’t appreciate my husband enough, and how he tries to roll with the punches.  I was not thinking that at the time, because when anybody looks stressed, I get anxious.

So I started the day a little bit frazzled.  The plumber came right on time — huge relief — and it took him only a few seconds to check out the new toilet and bend the part of the flush mechanism that was getting stuck back into place so it works well.  I was happy that he got to see my husband, who looks very normal, because I thought he (the plumber) had gotten the impression that we are weirdos when he was here putting in the toilet.  And I felt bad about myself for a split second, that I cared what he thought, that I was afraid we look like weirdos.  I hate that I have this self-loathing.  What’s wrong with me?  Breathe.  Breathe.  Breathe.

So husband was leaving only about ten minutes later than he had wanted to be leaving, only slightly cutting into his rush hour time bank slush fund.

We get to my friend’s place, and as my husband is saying goodbye,  half my mind is scanning the clutter in the back seat and thinking I should be taking something with me.  I can’t see anything I will need, but feel distracted by that nagging feeling I am forgetting something.  Not wanting to delay my husband further, I grab the giant map book just in case, kiss his whiskery face goodbye, and get out of the car.

My friend is waiting with her keys and a big hug for me.  I step into the hug, and just for a moment, notice how stressed I feel.  I smile, hug her back, and feeling better, take the keys and feel the world speed up again.  Tally ho!

Back at home, I get my Aspie out of bed, fed, and ready for school.

Getting him up starts about an hour before he has to actually get out of bed, with either me or my husband by his bed, meds in hand, saying, “Sit up and take your meds,” repeating calmly until he sits up and takes them.  This can take a few seconds, or it can take minutes.  There can be questions like “What day is it?” “What time is it?” “AM or PM?”  There can be blank stares, anxious stares (if he is being waked from a nightmare), swears, and various other interactions.  This is rarely stress-free.  Today, a few drops of water dripped onto his comforter as I handed him the glass, and that made him angry with me.  But he was able to get back to sleep, so that worked well enough.  This had all happened around 6:45.

Home again with the friend’s car, I’m ready to begin the next phase.  I walk in, lift his comforter off — must not pull the comforter, as that is very irritating to him — and say, “Time to get up and go to school.”  The plan was, I would take him to school and then go back home for about an hour.  Then I would pick up the friend whose car I have, take her to work, then pick up my son from school and bring him home.  Later in the day, I would pick up my friend from work, and she would drop me off at home on her way home.  On other weeks, this has worked well for everything but our carbon footprint.  But not today.

Today he did a great job getting up, getting through the usual nervous stomach phase of the day, agreed to have and then actually ate polenta for breakfast, and disengaged from the youtube video he was watching in time to go to school.  We were so close to having a great start to the day, when he realized that he had not brought his book bag in from the car yesterday.  It was still in the trunk of the car, with my husband at work for the day.

He had put it in the trunk, where it would be safe during his therapy appointment, to which we had gone directly after school the day before.  In the book bag were the only things he could use to control his stress at school.  Without them, there was no way he could get through school.  He was walking through the house, lamenting the absence of his book bag, and I was wondering, had that nagging feeling I had before I got out of the car been about his book bag?  Or do I just always feel I am on the verge of making a crucial mistake, neglecting to do something imperative for my child’s success?

So here we sit.  He is back at his computer.  I feel that having helped him process his disappointment that he had left his book bag in the trunk and did not feel able to go to school, that he did not have a meltdown, and he did not blame me for any of it, is a success.  And I remembered to call the school to report his absence.  When it is time to take my friend to work, I can have her drop me off at home and keep her car, so I do not have all that driving to do.  That’s good too.  Breathe.

So why do I feel like my head is about to explode and that I am the worst mother ever?  I should have remembered to have him bring his book bag.  That should be part of our routine.  Okay, my routine.  Everything is MY routine.  I have to remember everything.  And I can’t.  I’m a loser as a mother.  I lose things, thoughts, track of time.  Sometimes I can’t even remember what day it is, so when he asks, I have to go check the calendar and figure out, is it Tuesday, no, we had that appointment, so it must be Wednesday.  That’s right, Wednesday, because we don’t have the car.

When I write out all that I had to manage before 10am, I think, I have a lot on my plate.  I still have to copy and fax test results to a doctor, finish filling out insurance forms, clean the house, figure out what to make for dinner that is dairy- and gluten-free — I should have a meal plan and a shopping plan, but I’m not there yet.  Instead of hating myself for not being better at everything, can’t I have some compassion for myself, as I have in abundance for my friends in similar situations?  Just as I want my son to feel accepted and part of a community, can’t I feel I’m okay, I’m valuable, just the way I am?  That doing my best is not just good enough, that it’s heroic and admirable and that I’m a fantastic person?

I would love to go a whole day, walking in the feeling of stepping into that hug, instead of toiling through the day, carrying my invisible yet incredibly heavy bag of failures like a load of rotten melons, dripping a trail of stinky self-condemnation with every step.  Breathe.  I am feeling it now.

October 5, 2011. Tags: , , . Uncategorized. Leave a comment.

Would you like bipolar with that?

Most blogs I have read start out with an intelligent post introducing the author as a person with something to say.  I  can’t think of anything except various things that would embarrass my children and/or suggest that I am a grown woman somehow stuck with the sense of humor of an adolescent boy, which comes out when I am feeling stressed.  Which is all the time.

One day hanging out with my Aspie, somehow we got to saying whatever we needed to say with “ass” worked in, in a highly exaggerated manner.  If I were speaking ass right now, I would say, “my Aaaaassssspie.”  In fact, I think the first incidence may have occurred with the word “Asperger’s.”  That would be, Aaaaaasssssperger’s.  I can’t even remember to quote for you, but there were many, many hilarious things to say with aaaaaasssss in them.

We were watching the Sandwich King.  One of the most fun of the many Food Network series we have watched was the most recent competition for the Next Food Network Star, producing its new star, Jeff Mauro, the Sandwich King.  I was watching his show with my Aspie, and I was wondering, if my life were a sandwich, would the bipolar be a part of the sandwich, or would I just be in an Asperger’s sandwich with a side of bipolar? I don’t know why that is so important to me to figure out, but I keep thinking about it.  I had been thinking about Asperger’s sandwich with a side of bipolar for a long time, but watching the Sandwich King was the first time I thought about it all being in the sandwich, all layered together, and every day is another bite.

My dad had Asperger’s, my mom was bipolar, and my growing up years were chaotic.  I was confused all the time.  Luckily, I had older sisters to help me, at least until they went away one by one, to college and to get married.  After I grew up, I was still confused but managed to stay busy for a couple of decades, and thought I was having a pretty normal life, at last.  I married and had my own family — I had a career, I was a wife, and the mom of a beautiful, sweet daughter.  I wish I had been able to slow down and enjoy life and especially enjoy being with my daughter then, instead of having been so high strung and driven to do something meaningful with my life.  She was so undemanding and easy going, much like my husband.  How I wish I could go back and really enjoy the days we had together, when among my biggest concerns were what to wear and how to do our hair, since everything else came so easily to our family.

Our son was born, and after years of trying to figure out how to be the best mom I could be so that he too could have a normal life, I learned that me being not just the best mom I could be but even being the best mom who ever lived would never give him what I thought of as a normal life.  Our son, who reminded me so very much of my dad, was diagnosed with Asperger’s syndrome.  Then my son went to middle school, without an IEP, and after numerous school-stress-induced hospitalizations, he was diagnosed with bipolar disorder.  By now, he was a teenager and began to remind me so very much of my mom as well.

It took a while to sink in, and when it finally did sink in, it was like a bell rang deep inside me, like there was a buoy in there, floating inside me, with a bell that had been just waiting to ring and ring and ring.  I had thought I was sailing away, away from the craziness, and I did.  High school graduation, college graduation, grad school, career, marriage, my own family, my own structure and rules, all took me far away from the craziness.  I set sail and I sailed so far that I went around the world.  It took decades, but there I was, back again, at the same buoy.  Riiiiiing, riiiiiing, riiiiiing.  I could never really get away, because the bell was in me.  It was in me, and I passed it on to my son.  Aaaaaaassssk not for whom the bell tolls.  It tolls for me.

October 5, 2011. Tags: , , , , , , , , . Uncategorized. Leave a comment.

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