Special Needs Children

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

 

 

 

 

 

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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Seek And You Shall Find

/ Gardy Loo Pismire / 4 Comments

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In a couple of weeks we will be leaving for South Korea. This is a trip which will take our three children back to their homeland. Back to a place where they will “look” like they belong but will not understand the language nor the customs that an individual would who had lived there for their entire life. This will be a trip, unlike the last time, where they will be able to understand the ping-pong looks and stares that people will inevitably give us as they size us up as a family; most smiling but some frowning; as they label our children different from “them.” It’s a trip where they will be in the majority, while we, their caucasian parents, will be in the minority; a role reversal that they can see occur right in front of them with their own two eyes…one which may have epic implications.

I hope that my kids will see the beauty of their first country and begin to feel pride in themselves as Korean-Americans. I hope that the anxiety of autism will not overtake my sons as we walk through crowded markets and experience new ways of doing things. I hope that these amazing children will become stronger in their belief that we humans are essentially all the same and that we share many of the same hopes and dreams as everyone else on the planet so we must treat others as we ourselves want to be treated. And I hope that they find the things that they are looking for, both big and small, that will fill the holes in their hearts that adoption itself creates.

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My wish for them is that they realize that the circumstances of their birth are just that…circumstances… that have nothing to do with them and that these circumstances do not determine whether they are “good” or “bad”  people. That they are who they are… not just due to their early experiences but mostly because of what they have put into themselves to create the work of art that they hang on the wall to show the world.

Korean…American…Californian…Autistic…Thoughtful…Creative… Intelligent…Giving…Athletic…Charming…Inquisitive…Happy…Caring…Interesting… all despite being raised by lovingly flawed parents.

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I hope Korea gives them the chance they deserve and I hope they give the same back to their Motherland. I hope the rich culture, the old stories, the ancient temples, the colorful folk songs and the flavorful food etch themselves into our children’s psyche so that they can reach for them in the future when they need a bit of understanding about who they are and who they can become. Because finding a bit more of yourself and what you are made of is a gift no matter where and when it happens.

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So my hope is that they find those gifts that will be abundant and ever-present as we tour their homeland. May they recognize what it is they need to witness and take it away for themselves and their souls. And may they find these gifts as freely as one finds shells laying on a sandy beach, so that they may they gather them up in their pockets and examine them on another day as they are needed throughout their lives.

Find what you need my sweet children, be happy, and be free!

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Friendship

/ Gardy Loo Pismire / Leave a comment

This morning I had a long overdue coffee date with a wonderful woman. We are about the same age and are both on the road of discovery about ourselves while deciding what we want the second half of our lives to look like. We have a lot in common in many regards and I hope she is on the way to becoming a good friend.

After coffee was over it occurred to me how much I miss having close female friends. Sometimes I miss it so much it feels like a piece of me has been ripped away and left abandoned out on an isolated road. Alone.

Don’t get me wrong I have some wonderful friends. But due to our constant moving or their moving; these women that I cherish and love are scattered throughout the United States. There is N… my been with me forever friend who has seen me through my youthful indiscretions and has nursed me through the past year. There is C who knew me as a teen and with whom I share a birthday. There is L who makes life something to laugh at and enjoy to the fullest even when I am whining like a baby. And there are several other special ladies who I know would be there for me if I picked up the phone. But what I need at this juncture of my life, and what I miss most, are a couple of good girlfriends to go to coffee with every Thursday to catch up on each others lives.

It is hard making friends at my age. It’s an art really. The type of art I have really never possessed in sufficient quantities… because I don’t do acquaintances. I do… “I’ll save your life if you’re in a raging river”… types of friends. I would do anything for them and they would do just about anything for me. These are the plunging off a cliff, Thelma and Louise, kinds of friends.  Frankly, there are not a lot of people I want to risk my life for or go down with at my age. But I am still willing to try to find those kinds of inspiring and fun people and offer them all that I have to give… which is quite a lot.

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There are other reasons I find making friends difficult. Sometimes when you have special needs children with challenges it makes it difficult to make friends. Most people have no clue of all the things you have to do to make your life work. They don’t understand when you have to cancel at the last-minute because of a major meltdown that is occurring ten minutes before you are supposed to meet. And being around others whose children also have challenges can be draining for both people because it seems as if too often you are both drowning at once and just holding on by the thinnest of branches. While things have improved in my household sometimes I feel like past behaviors hold me back because I am unsure when those issues will rear their ugly heads again. It makes me afraid to risk “those” looks and “those” whispers from someone I thought was special only to find that they really aren’t. Sometimes I wonder if that isn’t how my sons with autism feel.

There is also the issue that most women’s lives are so full that they barely have time for the friends they currently have much less making time for someone new in their lives. With old friends you know what you have and how to relate. Most people just don’t have the energy to figure out the quirks of a stranger. And I get all of this. I truly do. But damn, it just means that so many of us are missing out on something that is so good.

But really, I don’t want a lot of friends. I just want a small group of coffee klatching Thursday morning women to hang with. Some 40-60 something gals who won’t try to convert me. Won’t try to change me. And will love me despite all my idiosyncracies.

With all the lonely people out there you would think it wouldn’t be that hard to find but it is. Which makes me thankful for all that I do have in my life. Yet, I am greedy and I want more. Much, much more.

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On Giving Love When You Have None Left To Give

/ Gardy Loo Pismire / Leave a comment

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Sometimes my house is pure 100% chaos. Sometimes it is as quiet as a lamb. Most of the time it is somewhere in between. But then there THOSE TIMES; the times when Andre digs in and NOTHING I can do will change the trajectory that we are about to embark on.

Change for Andre is difficult. It often is for those on the autistic spectrum. Sometimes that change is as small as using grape jelly as opposed to strawberry on Andre’s PB&J. But more often it is something along the lines of telling him to do his chore.

“Andre you need to empty the dishwasher!” (for the third time)

“I dun’t want to”

“There are lots of things I don’t want to do either but they must be done so empty the dishwasher. NOW”

“I dun’t want to”

This I dun’t want to would go on 100 times if I permitted it. Usually at this point the conversation will escalate to one more warning. Then I head upstairs (with him trying to stop me…pulling on me or poking at me) and take all of his electronics and tell him that he can have them back when his chore is done.  This is followed by ten minutes of attempted manipulation, threats (I’ll put your phone in the sink if you don’t give me back  my stuff) and flat out increased defiance. Finally, Andre will realize that he has gone too far and then resorts to such things as:

“Tell me you love me mom”

“I need love. Give me a hug NOW.”

I want a kiss NOW”

Along with all the demands he begins hanging all over me DEMANDING a hug or a kiss by clawing at me.

Of course, by this time I am worn out and tired of the CRAP. I try to remember where this is coming from inside his head (fear of abandonment/fear of being unlovable/anxiety) and react accordingly. But there are times when giving him what he needs (a hug) feels so ugly and disingenuous after all the chaos and manipulation that I find it hard to wrap my arms around him. I find it hard to find a place in my heart to grant him the grace that he needs. Most of the time I manage to dig it up from G** knows where but there are times it is almost impossible to find and it is at those moments when I feel like I have been swallowed whole, the best parts of me ripped out and flung far and wide. It is at these times when I start crucifying myself for not being able to give my son what he needs because it is such a little thing that feels so big.

Luckily, most of the time I do not get to this place of self torture because as I start to fall down the rabbit hole; I get ensnarled in the tree roots and find a foot hold to make my way up again. But there are times that I would like to keep falling down that rabbit hole just to feel the impact upon landing. To feel the brokenness that results. And when that happens it makes me realize that is probably what Andre is feeling (the impact) and then I find I can go over and give him that hug. A hug that will ultimately mend us both. A hug that that tells him that I love him and he loves me and that we are in this thing called autism together. Forever.

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“Perfect” Words

/ Gardy Loo Pismire / 10 Comments

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I have been working hard to use the “perfect” words and phrases in my everyday interactions in order to minimize conflict and optimize understanding. Our therapists say to try to increase our usage of them everyday. Here they are:

  1. I love it when______
  2. Help me understand
  3. What would make it easier for you?
  4. I just got triggered and I feel ______
  5. Can I have a re-do? (Meaning you screwed up and would like to try again)
  6. I am not comfortable with______. Perhaps we can try ______ instead. How do you feel about that?
  7. I have a concern about_____
  8. I heard you say _____ and I am wondering what you mean by that.
  9. I am trying to understand please tell me more.

 

I have to say some of them work better than others. It seems like the “I like it when…” phrase often brings about the desired results and by saying “What would make it easier for you?” I get to know exactly what would be the most beneficial thing I could for B at that moment in time.

Last night I tried the “I have a concern about…” and it bombed…BIG TIME. Not only did  I feel like my words had exploded in my face and I had been cut by shrapnel; I ended up feeling like a fire work that just wanted to explode…light the fuse…I dare you. Let me explain.

The kids started school two weeks ago and it has been absolute chaos. Between each kid being at a different school,  two carpools, and one kid also taking a college class in addition to normal high school work; the hectic threshold has increased 20 fold in his house. Already I have gotten two phone calls and two emails from Andre’s school, one from Gracie’s and have had to contact Paul’s school three times for various things in addition to talking to the counselor. Add to that book marking each kids classes(12 total) so we can check on homework every night finding/loading emails for teachers and two IEP teams…well let’s just say that it has been a challenge.

So last night when I got home late after being voted in as secretary of a school organization (more about that some other time) I found B watching the Olympics which then proceeded to his playing of the bagpipes. Meanwhile, I went upstairs to ensure that Andre was doing his homework and spent 30 minutes going through all his class websites with him after getting a call from school earlier in the day. I spent another 20 minutes re-organizing his notebooks for what I hope is greater understanding of where papers/homework are and where handouts should go. I did the same  last night with Paul who seems to not be getting any homework… hmmm. Had to check on that too.

As I climbed into bed, after thinking long and hard about how I wanted to approach the issue, I said to B:

“I have a concern about ______ (“using “perfect” word phrase) how we are going to get the boys through school this year.(Two boys who have autism and face many challenges when in school) So far I have received several emails and phone calls from the schools and since the boys are both in high school now, where even more is expected of them; I think we need to come up with a plan on how we are going to handle this because I can’t do it all. If you have any ideas about this I would be glad to hear them. This is what I was thinking. I was thinking that perhaps I could be responsible for Andre and checking his classes and that you could do the same for Paul. If there was math homework that help was needed on you could do that (I don’t do math) and English would be my responsibility. What do you think? Or do you have something else in mind?”

“I work from 7 am to 6 pm. I can’t do it.”

CANCEL CANCEL CANCEL  (To find out what this means ) Read Sitting In the Silence

“Well, honey, I work too. I drive two carpools, answer calls and emails from the school, pay bills, clean house. I work too. I’m sorry, you don’t get to just hang up all the responsibilities of this household when you walk in the door.”

And so it went.

Later I told him, “You know I worked very hard thinking about how to say what needed to be said in a way that was non-confrontational using the words/phrases our therapists taught us and I feel like you just shot me down. I am very disappointed about how this went.”

“You are entitled to your feelings. Feelings are neither right nor wrong,” which is B’s new catch phrase.

Yeah, well, buddy… my feelings are now ones of being pissed and angry at your feelings of entitlement and your lack of sensitivity that I am trying my best to have a calm discussion with you to get what we both want/need for our boys. I am also thinking that if we had divorced you would be getting half of these calls, doing half these carpools and that you would need to hire and pay for wife that you now have for free. An expensive proposition to say the least. Frankly, I would like to kick you in the ass for being such a blockhead.

And so I went downstairs and listened to THREE meditation podcasts in an effort to bring myself back down to earth and re-locate my place of serenity. Afterwards, as I reflected on the day I wondered it there really is such a thing as “perfect words.”

I guess the answer is no…but I will keep trying to use them anyway.

And now I will:

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Drivers Ed

/ Gardy Loo Pismire / 1 Comment

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It’s early in the morning and Paul is sitting at the table with me, sleep still nestled deep in his dark brown eyes. He is studying for his drivers education test and as I look at the almost 6 ft boy sitting in front of me, I ask myself, where did the time go?

When I first saw the boy in the yellow hat, I knew sure as anything else I had ever known, that he was destined to be in our family. In probably the fastest Korean adoption ever, we were on a plane bound for Seoul within 5 months of turning in our paperwork. It was if the universe knew he needed to be settled.

When we saw him at his foster mother’s house he was a chubby thick-boned sturdy 10 month-old already walking faster than the speed of light. The boy was quick and moved like a prize fighter, bobbing and weaving the entire day. Throughout the apartment the drawers were taped shut an indication of the whirlwind that was to enter our lives.

The day we brought him home, he toddled over to his 7-month-older brother, and swiftly knocked him to the floor. Thus a dynamic was put into place in which whatever Andre had, Paul wanted. It’s a pattern that remains to this day.That first day home I told B, “Mark my words there is something different about this kid.” And there was.

We soon noticed that parenting was harder this time around. First came the tantrums the likes of which I had never seen before. They were like HUGE thunderstorms…in your face, with screaming so ragged and loud that I was sure that eventually the police would arrive at our door. Often Paul would rage uncontrollably for an hours at a time. Obsessions with clocks, then water, then spoons developed which lasted for several weeks and then they were gone as if a magician waved his wand only to be replaced by another. Before the age of 2 we were already consulting with behavioral therapists in an attempt to change the path we were on. It wasn’t until Paul was 5-years-old that we got the autism diagnosis, the Tourette’s Syndrome pronouncement came when he was 7-years-old and the Central Auditory Processing Disorder diagnosis a year after that. Then for two years we had ABA therapists in our home 5 days a week working with both Paul and Andre to help alleviate the most pressing challenges that autism wrought between the two of them. Between weekly hippo therapy workouts, psychologist appointments and daily hour-long neuro reorganization exercises, we barely breathed for 4 or 5 years and when we did it was ragged, coming is fitful spasms, like a marathon runner as he crosses the finish line. Sometimes we were broken and worn only making it through the day because we were on autopilot.

But then, miraculously, things started slowly changing. Fewer tantrums occurred. Less resistance. More control. More sense of responsibility. A new willingness to help out and think of others feelings. Slowly all the years of hard work began to slip into place finally resting where they needed to be and Paul began to mature.

Those younger years were often dark. They were sad. They were scary and they were the most difficult of my life but today I have come out on the other side with a newfound appreciation of my two sons, knowing first-hand all the hard work they have had to put into themselves in order to become the wonderful and engaging people that they are.

These days when I see other parents on the on-line bulletin boards struggling with their children; I try to encourage them and assure them that it does get easier as their kids mature. And when I see their pain and fear sometimes it takes me back to mine. When this happens I involuntarily shudder but then marvel at all that our entire family has accomplished together through hard work, fighting the system, and never giving in/up.

This morning I sit at the table watching as Paul studies for his drivers ed test and I wonder…where did the time go?

 

 

 

 

The Eagle Is About To Soar

/ Gardy Loo Pismire / 1 Comment

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Yesterday my boys, Andre and Paul, received their Life rank in Boy Scouts. It is an amazing feat especially when one factors in all their challenges. Next up: Eagle Scout the final and highest rank. They are already busy deciding what their project will be. It has to be something that benefits the community. They have to plan it, fundraise for it, and organize volunteers to help complete it.

I have to admit I have been a lousy Scout mom. With all the other things I have done in the past or am doing I have rarely attended meetings and only occasional events. It is B who has done on a million hikes and campouts, attended every meeting, flipped pancakes for fundraisers, helped them earn merit badges and has taken a week off of work to make sure that the boys attended Boy Scout Camp. Without B, there would be no Eagles in the making. He has been there for years helping the boys to learn new skills and helping Andre when he falters. I am so proud of all of them.

As I watched Andre yesterday, his autism in full gear for whatever reason, walking in circles and shaking his head; I know that I have the Boy Scouts to thank for all he has accomplished. For all that both boys have. And while I have not always agreed with the policies put forth by the organization, I know that my kids have mastered skills that will benefit them in the future and may well save a life one day. In fact, Andre did earn a rarely given award, the Honor Medal, for saving a life.

So as they enter the final frontier of Scouting I want to congratulate my boys and thank all the adults who have mentored them and pushed them through. All those volunteers who have made Scouting fun and exciting. Because it is a joint effort by all involved and everyone involved are responsible for the fact that our soon-to-be Eagles are about to soar.

 

 

Holes… Or When I Am Gone

/ Gardy Loo Pismire / 2 Comments

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Me: I am going to miss you when I am gone (B and I are going to SLC this weekend)

Andre: I’ll miss you too

Me: Why will you miss me

Andre: You do my laundry, you cook for me, You make my lunch

Me: Is the only reason you’ll miss me is because of all the things I do for you

Andre: Well, to be honest it helps
Me: So what are you going to do when I am not able to do those things for you
Andre: Well, I guess I will get married

 

I love my son. Truly I do. But because of his autism everything to him is from a “what are you going to do for me” perspective and very rarely a “what can I do for you” thought even occurs to him. The one daily chore he is expected to do is often a battlefield and it doesn’t matter to him that everyone else is doing their part. This lack of reciprocal interaction or loving behavior on his part often makes me feel hollow inside.

With most children you have some sort of back and forth relationship. A relationship in which the child wants to please the adult in their life and vice versa. Usually it’s a fairly balanced equation. We get something and we give something back. Even if that something is just a touch or a smile. That just isn’t really important to Andre. He spends more time figuring out how to get his way at all costs than ever considering the fact that sometimes people need a hug or a kind word to keep them going. This “I give to you and you give to me” thought process never occurs to him and sometimes it gets very old. Sometimes it feels like I am doing all the giving and getting little to nothing in return. When this happens it feels like a day spent outdoors in the hot sun just digging hole after hole after hole.

For me, this is one of the hardest parts about autism; this “I don’t give a shit about anyone else but me” thought process. Give me a monster tantrum anytime. Give me nonsense talk too. Give me the messy room, the sneaking food upstairs and the snarky comments. I can take all those and more. But sometimes what I long for is just a genuine back and forth dialogue lasting over 5 minutes followed by an Andre initiated hug at the end of our time together.

If I could change how autism looks in regards to my son this is what I would change. And who knows maybe this will click into place for him someday. Until then, I will sit here and wait knowing in my heart of hearts that even though he rarely shows it that my son really does love me. For that is all I have to sustain me at the present time.

 

 

 

Going Away

/ Gardy Loo Pismire / 2 Comments

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As you have probably figured out my birthday is coming up this week. I find as I get older they are harder to swallow. On the one hand they mean I am creeping closer to death with many goals unfulfilled but on the other hand the alternative is not attractive. Frankly,  I am so grateful to be alive after all my body has been through. I realize that had I lived in other places that lack the type of health care I receive that I would died long ago. That is a sobering thought.

This year I seem to be doing a lot for myself for this birthday. I blame this on my therapist who keeps telling me that I need to take time for myself and do some self care with all that is going on in my life and that maybe divorce looming deep and dark everyday. I need a lot more sitting quietly with myself and a touch of zen. Getting to this point is somewhat of a miracle considering I have been a mother for over 33 years and doing things for everyone else. If I am honest sometimes I would just like a break from all the challenges that accompany motherhood and autism. So later this week I am going to take a well earned one. I am going to the ocean later in the week and B will be working part time so that I can do this. (Bless him)

I love the ocean. It makes me feel renewed, fresh, inventive and intuitive. It sharpens my pen and my mind. While there I plan to:

Read several books

Sit on the sand and watch the sunset

Sleep as late as I wish

Go watch the baby seals

Sit cliffside and watch for whales

Hike along the cliffs

Go swimming

Take naps

Meditate

Tend to the garden

Work on my novel

Sleep in the nude

Listen to actual records from my collection

Maybe put together the outdoor furniture if it comes

Take myself to dinner every night

I might even sit at a bar and flirt a little (if I can even figure out how to do it since it has been a lost art form for the past 30 years)

 

I have to confess that I am a little nervous about this. I have not been alone for an extended period of time since…well, I don’t know when. I can’t even tell you if I have ever been and I am concerned I will either go stir crazy or I will discover that I drive myself to distraction. Can you get sick of yourself? I guess I will find out.

I am also looking at this time as precious and nourishing to my soul which makes me excited about the possible discoveries I may make. I hope ideas percolate to the top giving me greater clarity about the things I need at this point in my life. I hope that I feel a sense of peace and tranquility that is often lacking in my life as I run to schools, doctor appointments and the like. And I hope to tap into those parts of me that have laid dormant for way to long.

This is my time and I plan on taking full advantage of it!