Autism

Precious Presents

/ Gardy Loo Pismire / Leave a comment

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I have a small group of friends that know me pretty much inside and out…and bless their hearts… they are still my friends. We were brought together by virtue of some shared characteristics of our children. The bond that we have gone on to form transcends our original purpose of providing support to one another. Our relationships are now based not so much on our children’s issues but on our real concern and love for each other. We now enjoy a Friendship that begin with a capital F even if it is mostly virtual.

Many of these friends I have met in “real” life. A few I have yet to meet except out in cyberspace. We have shared our joys and concerns. We have lived each others ups and downs. We have been there for the little victories and some major defeats. We have watched each others children grow and been there when a diagnosis threatened to overwhelm. As a result of sharing such intimacies over the years we read each other fairly well.

Recently, I found myself at a crossroads… a low point so to speak. My friends gave me the encouragement that usually brings me to my feet again. Most important they took the time to give me ideas and options that they thought might make my life just a little brighter. Yet, I remained on my knees and they knew it. Then yesterday I went to our group and found that a member had posted the start of the most beautiful and meaningful gift I have ever been given. She started a list entitled 25 Random Things We Love About You. The list was sincere, uplifting and once again reminded me of who I am and who I want to become. Some things were funny, some serious and some were eye opening but all the things on the list were written with love. When I read the list I laughed and cried. I was truly touched and beside myself with delight. Because of that list I am standing on my feet once again.

A present that affirms you for who you are…warts and all… only comes along once or twice in a lifetime. It is a gift are as rare as the most precious gem. It’s a gift that teachs, stirs, and allows you to remember yourself as you were at your best. It restores confidence, grants healing and puts you back on the path to yourself. It is a gift that everyone should give to at least one other person in their lifetime. Everyone should be so lucky.

I have yet to comment to my friends how I feel about such receiving such a treasure. I mean it is truly like winning the lottery. I find it hard to contemplate about what was said without feeling such a overwhelming sense of gratitude that I have such a group of wonderful women watching my back…I almost dissolve in tears. So lacking any real gift that could compare in return I just wanted to say thank you my dear friends. I want to thank you for giving me your time when I had none to give back and thank you for giving me your strength when I was too weak to support myself much less you. Thank you for giving me your love and your truth. You have given me your best over the years even when I fell short. I am truly blessed to have known each and every one of you. All of you have taught me so many things but most of all you have taught me the true meaning of friendship and for that I will always be grateful and in your debt.Someday I hope I can give back to you what you have given me over the years. For now….all you get is this IOU.

*I wrote this several years ago and just looked at it again. I feel just as blessed remembering this as when it happened. Thank you friends!*

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Quieting My Soul

/ Gardy Loo Pismire / Leave a comment

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It used to be that for my husband’s job we would move about every 2 years. I loved the excitement of it all. The new house, new town, new things to do. I loved purging my life of all the un’s … the un-used, the un-wanted and the un-needed. I loved starting life “over.”

For the past 10 years we have lived in one town but moved to three different houses. We have been in this one 5 years. About the longest we have ever lived in one place and to tell you the truth…I am ready to move. This wouldn’t be a problem except that it is…B refuses to move again. I get it. It is a pain to move….so much to do…taking apart, putting together, cleaning, painting, and organizing, Yet, I was good at it. Amazingly so. In fact, I got so good at moving I would have all my boxes unpacked within the first 72 hours. No boxes sitting in the garage waiting to be unpacked for me. I took that as a personal affront if things were not in place where they belonged…soul included. And for a while my soul would be at peace while it explored and planned and painted.

My soul is a nervous one. One that craves excitement, changes and challenges. My soul has a hard time sitting and staying in one place. And when my soul gets itchy I know that it is time to move. Yet, I can’t. B no longer wants to buy and sell houses; no longer wants the bother.

So how does one feed an itchy soul?

I am not sure. I am meditating which calms and centers me but still my soul is restless. I am working on my novel but still my soul wants to wander. Sometimes it feels as if my soul is akin to a ghost wandering the halls of an old mansion looking for a way to get back into herself. And I am just not sure how to quiet her.

Will it quiet when I am living where I really want to be? Will it quiet when my marriage is good again? Will it quiet when I know what the future holds for my two autistic sons? Or do some souls never quiet because they are always looking to stir things up and invite chaos into their lives?

People say doing things for others helps quiet the soul. I haven’t found that to be true yet but I am hoping to start volunteering for a local hospice program and perhaps that will help…being close to death often reminds you how precious it all is and plants seeds of contentment in your soul.

Or perhaps quieting the soul it is more ominous to me than I truly want to recognize. Maybe my soul believes that quieting itself means I have given up… that I no longer am wanting or expecting change, that I am content and therefore complacent, that I am accepting of whatever comes my way; no longer carving out a life of my own. Done. Finished. Bricked up like a fireplace in an old house so as to eliminate the drafts. And if this is what quieting the soul is all about then frankly it scares the crap out of me.

Sometimes I wonder if I am doomed to have a wandering soul and sometimes I wonder if wandering is better than a soul lost to complacency. I’m sure there must be a middle ground but I have been unable to find it. For now my soul wants a change but perhaps this time the change will have to be within me and not through external circumstances. Looking inward instead of out. I am not sure but I know without a doubt that change is acoming’.

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The War Of Words

/ Gardy Loo Pismire / 2 Comments

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Recently, I have been thinking back to the days when the boys were young. Those were the days and many of them I would never like to repeat. They were stressful with meltdowns and words that took a cruel aim to the heart.

“I hate you” “I wish you were not my mom” “You’re a whiney little jerk” “Mom, he called me a butt.” Those kinds of things. Normal, yes, but the frequency at our house was 100 times what was normal. It was exhausting.

I remember at one point trying to get the boys to think before they said something. Hard to do when you are seven and in the heat of the moment. Hard for me to do now at 55+ and if I am honest; I have never been a model for saying quiet well-thought-out words.

During these early days of chaotic boyhood, a friend once  told me what she asked her kids when the War of Words was going on. I thought it was genius and wished I had done more of it as they grew up. She would ask her kids:

Is what you said kind?

Is what you said helpful?

Is what you said loving?

Often times just by asking these questions I found I could bring a temporary respite to all the chaos. It was a blessing. It taught my kids that words have meaning and repercussions too.

Recently, I was thinking back to those times and I decided that those questions of yesteryear were valuable not just for kids but for me too and I have been trying to be mindful before I speak by asking myself these questions before spouting off. I have also added two other questions to ask myself before responding to others:

Is what I am about to say true?

What is my motivation (honest) for saying what is on my mind?

Admittedly, it is hard for me to remember to ask myself these questions before talking. Often, I fall far short of where I would like to be. But usually, if I just pause before speaking, I can do a quick inventory in my head of the answers to these questions and decide whether my response is:

True

Honest

Loving

Kind

Helpful

 

If what I am about to say is not any of the above; I am trying to learn to shut my mouth and keep it that way. As a person who has shot from the hip most of her life this is a real learning experience for me. A challenge akin to climbing Mt. Everest. It is not easy. It takes a little bit of awareness and planning. But every time I succeed in being mindful I know I am getting to be one step closer to the person I want to be which gives me hope that maybe one day before I die I will master this ability to speak mindfully and to shut my mouth when needed. But somehow I suspect that it might take my deathbed to figure it all out if even then. Yet, I keep trying because I know for the sanity of all involved that when I am kind, loving, honest, helpful, and true I give the best of myself to those who deserve only the best of me.

Amen (so be it)

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Eat Chocolate Cake

/ Gardy Loo Pismire / 2 Comments

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The school called today

Andre didn’t turn in his homework

He said he burned his book

I don’t think so but…

I eat chocolate cake while I contemplate the situation.

The other school called about Paul

The teacher tells me there is a group issue

Paul is missing assignments

I will check and let you know….but first

I eat chocolate cake before digging around in his room

I go to the school to discuss the situation

I let all involved know

That Andre will be staying after school in the tutoring room

Everyday until all the assignments are done

He clings and claws at me

He baby talks and pouts

I escape and walk around campus

And eat that emergency piece…

Of chocolate cake

That I tucked in my purse

Really this is getting too much to manage

Maybe I should turn to booze

And give up the chocolate cake

We get home

Paul is upset because I insist that he does his chore

That he did not do before he went to school

Man, that chocolate cake looks good…tastes better than it looks

Two boys with autism

One deep dark chocolate cake

Almost gone…

Autism makes you fat!

Home Alone Horror

/ Gardy Loo Pismire / Leave a comment

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Home Alone is one of the most seen movies in the world. Although it was made years ago, you can always find it on one channel or another because it is a family favorite. It is funny and it makes you laugh out loud…unless it comes to roost in our own life. Then it ain’t so funny!

B and I were heading home from New York the other day after a wonderful weekend anniversary trip. Though we had been through two years of a “maybe” divorce, this weekend felt like we were in love again. That is when the sitter texted me.

I JUST LOOKED AT MY WORK SCHEDULE AND I HAVE TO WORK TONIGHT. I WILL NEED TO LEAVE AT 10 p.m.

“THAT IS FINE,” I texted back. “WE WILL BE HOME FROM THE AIRPORT AROUND 10:15 .SO IT ISN’T REALLY A PROBLEM”…until it was.

Standing in the crappy line with a GROUP 6 boarding ticket while annoying, is not a problem. Usually. Unless, you step on everyone’s toes and piss them off, while trying to maneuver yourself  back to the cockpit to get your suitcase checked because all the overhead bin space is taken. Placing your belongs in the overhead bin…no problem…for the GROUP 1-5 passengers. GROUP 6…FORGET IT! Fastening my seatbelt was easy as pie as my anti-anxiety “fear of flying” pill kicked in.  Everything was going as expected until these words were uttered by the cute and spunky stewardess whom everyone suddenly looked like they wanted to slap:

” PLEASE RETRIEVE YOUR BELONGINGS AS EVERYONE WILL NEED TO DEPLANE. THERE IS A PROBLEM WITH THE EMERGENCY SLIDE AND GROUND MAINTENANCE HAS TO BE CALLED TO FIX THE ISSUE.”

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Now I will confess I try to keep positive in these types of situations. I mean, after all, it is better to be riding on a “fixed” plane than a “broken” one. But an emergency slide? Really? I mean how often are they used anyway?. Hell, I thought, if there turns out to be an issue, I will gladly stand at the open slide-less door and just toss people out onto the ground below. Problem fixed. Now, let’s get this freaking show on the road!

A collective groan so loud it nearly popped the rivets holding the plane together ensued. This was followed by a sound reminiscent of a herd of lumbering and pissed-off elephants starting back up the gangway.

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Faces that had been smiling only 5 minutes previous were now pinched and drawn. The variety of cuss words I overheard was astounding and during the race to the customer service center several people nearly lost there lives. Frankly, there was not enough free alcohol in the entire terminal that could cheer up this downcast and angry crowd.

As B and I stood in the wrap-around line waiting to talk to that poor unlucky agent who had been plucked by the previous 50 ticket holders; it finally dawned on us that we had a problem. A serious one.  We only had an hour layover after we landed before we were to catch our final plane home. Unfortunately, this was the last plane for the night we were soon to discover.  Suddenly, were having our own HOME ALONE moment and nothing about it was the least bit entertaining.

Now being home alone is okay in our household during the day but certainly not overnight. We knew that Andre wouldn’t care as long as he could lay around in his underwear eating chips without being bothered by anyone. Change is hard for kids with autism but as long as there is food available and no one around to boss him around; Andre was happy.

Paul started crying over the telephone. The unknown is difficult for him but an unexpected change of plans is a catastrophe. . Let’s just say this didn’t fit into his scheme of things and the breakdown started.

Gracie…well, she isn’t one for being away from her Mommy and Daddy…especially at night. But we knew she would suck it up if she had to.

And so we started calling everyone we knew as the minutes started ticking away. 10 minutes late. 20 minutes. 40 minutes. 50 minutes…which was the point of no return. We were now officially screwed. Finally, an hour and 40 minutes later we lifted off unsure of what the future held…except that most likely Children’s Protective Services might be giving us a visit in the near future.

As nicely as I could I explained our situation to the stewardess. HOME ALONE.  TWO WITH AUTISM. MELTDOWN.

“Would you like a beverage?” she responded cheerfully.

I was tempted to ask for a double scotch on the rocks but decided that a drunk absentee parent was most certainly worse than a sober one when talking to government officials. Therefore, I took my seat,  bought the WI-FI service for $29.95 and sent out a plea for help on Facebook. I am happy to report that by the time we landed, I had three friends offer to help and a neighbor who informed me that she would take the kids to school. These are the times in life when “do unto others as you would have them do onto you” suddenly takes on a whole new meaning.

Flying five hours across the country we still had hope that we would make our flight but it was not to be. So we took our food vouchers and ate dinner in the airport, then took the shuttle bus to our hotel and finally settled in to watch a movie. When we turned on the t.v, guess what was being shown? Yep, you’re right… it just happened to be HOME ALONE. That apparently is the way we roll.

 

 

 

Las Vegas

/ Gardy Loo Pismire / Leave a comment

Driving to Las Vegas is always interesting. Between the weird signs of half-naked women, the smiling cactus and the odd out-of-the-way museums; most of the time I feel like I have been  drinking before I hit the bar.

There is the Borax Museum sitting on the hill in the middle of nowhere. Even better, the airplane graveyard where huge jets sit waiting to be scrapped or built into a home for some eccentric old lady. And then there are the potholes. Dodging them keeps you away during this rather boring drive. Unfortunately, for our friend she landed in one yesterday that completely shredded her tire out in the middle of the dessert…at night… which is the thing nightmares are made of.

There is also the last alphabetical road in America on the drive…Zzyzx Road which lays out in the middle of the Mojave Desert. There used to be a hot springs hotel out that way but it is no longer like many of the ghost towns that inhabit the area.

And now we are here on Vegas time. It is cold and due to the weather the mountains are covered in snow. Such a contrast and so beautiful against the now brilliant blue skies.

Of course, traveling away from home increases Andre’s anxiety to a point that at times it makes me want to find the highest mountain and jump off of it. Yesterday was tough. Those are the days in which I wish autism could be turned off like a light switch. Watching him struggle breaks this Mommas heart while driving her a little crazy. The sadness at watching him and the stress I feel when he tries to pull my hair because of it can be overwhelming at times. But in the end after he is settled things return to our “normal” and life goes on.

 

 

 

Best Qualities As A Mother

/ Gardy Loo Pismire / 3 Comments

UPDATE

Since B stated 18 months ago that he might want to divorce we have done a lot to try to save our relationship. This includes a Marriage Encounter weekend, his therapist, my therapist and a joint marriage therapist. I have decreased my yelling to a trickle, have kept the house in good shape and have lost weight. Frankly, things had been improving for close to a year but lately I have noticed that we have been regressing. More grudges, less sex, 66% less dialoging, etc. I am a very intuitive person and I “feel” these changes and recognize them for what they are and lately I have been feeling really anxious about them.

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I have never been an anxious person even when I have had plenty to be anxious about. For 57 years I have kept most of that anxiety stuff swept under the rug. But lately, it has occurred to me that as B distances himself my anxiety rises. It is an uncomfortable place to be. Sometimes it even makes me question my sanity because I tell him I am feeling the distance which he denies but then three weeks later at a therapy session he uses the words and admits that when x happened he distanced himself all the while denying my concerns for the past weeks.  It is a crazy way to live.

BEST QUALITIES

Recently, we had a dialogue question that asked each of us to talk about our partners best qualities as a parent. In the allotted 10 minutes I wrote about 7 qualities that B has that I think make him a great parent.

Now I know in dialogue you are not supposed to judge the other’s response because they are based on “feelings.” And feelings may be factually true or not but the bottom line is that they are what they are. So when B wrote about the qualities he admired that I had as a parent it basically came down to the fact that “I cared for my children.” To say I was hurt that this was the only quality he listed was an understatement.

Everyone cares for their children. You care for your dog. You care whether you have enough toilet paper in the house to last the entire week. Caring for your children really doesn’t get any accolades in my book. It is something we all do… even badgers, skunks and probably even one-cell amoebas.

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So I took this to my therapist. She wanted me to write down what I wished he had said about my good qualities as a parent. Here goes:

  1. I wish he had said that I am good about seeing or initiating those deep soulful and meaningful talks when they need them to boost their confidence, understanding of life or just need to express their concerns. I wish he had said he knew that most of the time they seek me out which shows that they trust my love and advice.
  2. I wish he had said that I love my kids fiercely and deeply and that they know that they can count on that love and can trust me to be there for them forever.
  3. I wish he had said that my children know I believe in them and that I think that they can accomplish whatever it is that they set out to do and that by knowing this it will take them far in life.
  4. I wish he had said that he knows I am their biggest fans and that I cheer them on with encouragement when they are lacking the spunk to make that “final touchdown” in whatever it is they are doing.
  5. I wish he had said I am a “good” parent far more often than a “bad” one and that even when I fail it is not intentional or malicious.
  6. I wish he had said that raising six kids, two of whom have autism, would be a tough job for anyone and that it is amazing I don’t lose it every day.
  7. I wish he had said that my kids had experienced so much of this world thanks to me and that if it was left to him they would not have.
  8. I wish he had said that I try my best to teach them the important things that they will need to navigate their lives now and in the future.
  9. I wish he had said that I am “good enough” parent some of the time (which is okay) and a great parent when it really counts.
  10. I give good hugs.
  11. I wish he had said that I encourage my kids to take risks which creates opportunities for them to believe in themselves.
  12. I wish he had said I am an honest parent in dealing with my kids and all the people we have to deal with because of their interests and their issues and that my honesty helps provide desperately needed clarity.
  13. I just wish he had said I am a good mother and he could not manage without me.

And while this exercise was difficult because I kept wanting to explain or add in the negative to balance it all out, I didn’t because this is my gift to myself and a tribute to who I am as a parent. I don’t NEED B to validate it…but it would have been nice.

Breaking Records

/ Gardy Loo Pismire / Leave a comment

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I’ve lived with autism for 16 years. I have yet to understand it. Take Andre. High school student who is also taking college classes and getting A’s and B’s. Smart, right? Then why can’t he change his underwear?

Seems to me that he is on some sort of record-breaking quest because recently I have noticed a pattern which I am sure Guinness World Records would love to have a stake in.

Record Breaking Attempt #1.

Number of Days Between Showers….SIX

Yes, six stinky days. Believe me, it’s not that we are willing participants in these record-breaking attempts. It’s just that life gets in the way. Often we take notice after Andre walks by smelling like road kill and the following conversation ensues:

“Honey, when was the last time Andre took a shower?”

“I don’t know. I thought it was your month to remember all his idiosyncracies.”

“No, my month was last month. This is your month.”

“No, last month I caught him hiding cookies in the downstairs bathroom so he could have a snack when he was on the toilet. It is definitely your month this month.”

And then all is revealed when little sister pipes up with:

“Well this week is my week to clean the bathroom and he hasn’t been in there once!”

AGGGGGG…epic parental fail.

AGAIN

Record Attempt #2.

Number Of Days Without Changing Underwear…..SIX

Yes, I am at fault here. I forget that an almost 6 foot tall person may need reminders to change his underwear EVERY SINGLE DAY. The lazy mother in me is tempted to teach him to turn his skivvies inside out in order to get a few more days use out of them but butt skid marks on the outside just look worse than skid marks on the inside so I am going to let this one ride.

Record Attempt #3.

Number Of Days Gone By Without Brushing Teeth……FIVE

I know this to be true because we just returned from a holiday where I put his toothbrush in his bathroom. On the last day I asked him to go get his toothbrush so I could pack it.

“Toothbrush? You brought my toothbrush with us on vacation? Why would you bother…its our vacation.”

At home I have signs up as reminders to brush his teeth. I have placed multiple toothbrushes in multiple locations. Even at the kitchen sink. And I think that is the problem. There are so many around that, just like dust bunnies, pretty soon they just begin to blend into the scenery. Sadly, little sister who brushes her teeth numerous times a day has cavities galore. Andre…not one. Ever. He is the Anti-Christ of the American Dental Association.

 

Record Attempt #4.

Number Of Times Per Day “I DON’T Wanna” is said. 1,440 x2=1880. That is about every 30 seconds.

“Time to go.”

“I don’t wanna.”

“Did you brush your teeth?”

“I don’t wanna.”

“I think you better start on your homework.”

“I don’t wanna.”

Clean your room. I don’t wanna. Take out the trash. I don’t wanna. Take a shower. I don’t wanna. Come eat breakfast. I don’t wanna. Find your shoes. I don’t wanna.

And so it goes.

I admit, that these things, while annoying, are definitely not life-threatening. YET. But that is exactly the point. Because one day we will no longer be on this earth to monitor (even half-assed) Andre’s idiosyncracies and our fear is that one day his mummified body with rotten teeth laying nearby, will be found in year-old underwear, crushed under piles of pizza boxes and food wrappers that he refused to clean up. And like global warming; we don’t know how to stop this slide toward disaster.

The one positive thing about all this record-breaking talk is that it has spurred me on to try to break one myself.

Record Attempt #1.

Number Of Days I Remain Consistently Sane

I’m going for….

ONE

 

 

 

 

 

It’s Been A While

/ Gardy Loo Pismire / 1 Comment

So it’s been a while since I have blogged. Life has gotten in the way. One of the reasons I have not been blogging is because I have been so ill and when you feel that sick just putting one foot in front of the other is sometimes the only thing you can manage to do.

The other reason I have been absent is that I just returned from South Korea. It was a blast. That is not to say that autism didn’t rear its head like a dragon…it did but we managed to keep the fire contained within the dragon’s mouth.

I love Korea. Not just because it is where my children were born but because of the numerous surprises that greet you while you are there. Like it raining and someone just hands you their umbrella and continues on their way. Like the fact that my children are now old enough to sit away from these two big white folks so they can blend in and become part of the majority instead of always being part of the minority. I wish I could give them that freedom every day of their lives. And I like the fact that pumpkin is valued and eaten in so many different ways.

I love seeing the small boats out with the huge freighters as they ply the waters for fish along the coast. I love the hidden temples and that sort of foggy mystical reverence that permeates the air.Riding the bullet trains are almost orgasmic with their down the the minute time tables and the snack carts that sell dried squid. I also love the open markets in which you can find the mass-produced and the antique amongst all the noise that radiates off of the stalls. And the smells of noodles of all kinds, ginger, kimchee and steaming hot bean buns bought just as they come out of the molds are to die for.

There is something about Korea…a people who have been taken over by invaders again and again. Who have known war too often the results of which allows them to then hold the holy and the beautiful above all else…even their pain. Same goes for my children whose understanding of their short lives here is bittersweet. Joy and pain sometimes it is one in the same.

And then we came home and I immediately went in for an endoscopy because I have been so sick with severe reflux for so long. And while I await the results I decided to try the anti-reflux diet and stop drinking coffee…and the next day feel so good that I don’t take the prescription medicine that never makes me feel great. And the next day I feel great. Better than great. And so I stop coffee and pills and one week later I feel better than I have for the past two years.

So now I rejoice. For travel. For discovery. For the happiness of my family. And for my health. And for the oh-so painful re-discovery of myself, my husband and my marriage over the past 18 months.dsc04814

I’m thinking that 2017 is going to be a pretty great year! I hope it is for you too!

 

Been There…Not Done That

/ Gardy Loo Pismire / Leave a comment

This is my sixth trip to South Korea. The first three were blinded by tears as we picked up our children when they were infants. Those days were short but sweet after waiting a half-a-year to finally meet them.

The last time we came to Korea as a family was seven years ago. Those were trying times. The boys were in the midst of autism and there was a real fear we would lose them on the subway. In fact, I remember that Paul decided to play hide-and-seek in the subway and scooted away into a telephone booth while we were racked with panic trying to find him. He was one of those kids who really needed to be on a leash because he would take off if given the chance. It is wonderful to see him this time…so excited to be discovering his culture. I have never seen him as happy as he was today.

On the other hand, Andre was struggling. All the walking. All the newness. All the change wasn’t doing him any favors. He didn’t want to come because change is so difficult for him. But to our credit we make him vacation with our family even though at times it would be easier for him just to stay home. There are just some memories that must be made and I will confess serenity was easy to come by in The Secret Garden.

We have never visited Seoul in the fall before. That was a mistake because the beauty of the place, the slow cool breezes make this experience memorable. The colors are vivid and more intense than I have ever seen. The scenery is amazing. But instead of telling you I will just show you…Korea in her glory.

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