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.

Learning to say, “No.”

Some people need to learn to share, and other people need to learn not to give too much away. Having spent my first few decades giving way too much away, I finally learned to say no.  I realized I had learned how at a healthcare conference I attended one November day a few years ago, during a somewhat bizarre experience.
Wandering the sales area during the break, I came upon a small selection of holiday gift items near one vendor’s register.  I found the perfect stocking stuffer for the various young girls in my family, a beautiful little manicure set. There were five of them, and I scooped them up.
The cashier was ringing me up when a woman perusing the counter saw what I had and asked, “Where did you get those?”
“Right over there,” I replied, “but this is all they had.”
The woman looked my precious manicure sets, then at me, declaring, “That’s not fair for you to take them all! Give me two of them.”
The cashier and I exchanged startled looks. I said to the woman, “I’m buying all of them; they’re for my daughter and nieces,” and to the cashier, “and I’m paying cash.” The vendor, who had been momentarily dumbfounded, resumed ringing up my purchase, at the same time apologizing to the woman, “We only brought five; we weren’t sure they would sell.”
Undeterred, the woman leaned into me with her face scant inches from mine, and said with great intensity, “Then just give me one.”
I looked at her and could not help laughing as I said, “No.” I was thinking she must have read Think and Grow Rich and was practicing her sales mojo on me, not realizing that I had read it too.
She became increasingly demanding that I give her some of the manicure sets, getting as in-my-face as she could, standing at my side as I stood at the counter.  I repeated the word no, pleasantly yet firmly.  More than a few people stopped to stare at us, as the woman was quite loud.  Only after she finally walked away did I think of asking her, “Does that ever work for you?”
Back in our seats after the break, to my astonishment, before I could tell her about the strange interaction at the cash register, my friend and colleague started telling me about a woman she had met during the break who had been very angry about someone buying all five manicure sets and refusing to give her any. My friend recounted telling the angry woman that the problem was not that one person bought all five, it was that the exhibitor only brought five to a conference with hundreds of participants. Ridiculously proud of myself, I said nonchalantly, “That was me.” My friend, who knows me well, was surprised and proud of me, and congratulated me extravagantly on being able to say no.
More recently, I went to a water park birthday party to help supervise the boys. At one point, having waited so long for a turn that the other boys and chaperones had deserted us, my son and I were enjoying playing basketball, alongside another family, in a pool equipped with two nets and two foam basketballs. As my son went to shoot, rather than waiting for a turn, a boy we did not know swam right up to my son, bumped against him and reached for the ball, saying loudly, “Can I have the ball?”
My son gave me a deer-in-the-headlights look, and I reminded him, “You can say, when I’m all done, you can have a turn.” My son said it, and the other boy swam away, reminding me of that woman at the healthcare conference years before.  So proud of my son, I was surprised to realize he was staring at me angrily.
I asked, “What?” and he said, “I don’t like doing that. It’s really hard!”
“The more you do it, the easier it gets,” I said, smiling. “I’m really proud of you. Take your shot.”

October 13, 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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