Special Needs Children

An Intruder

/ Gardy Loo Pismire / 4 Comments

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I am guilty. Probably most mothers of autistic children are guilty, too. We talk about our children and their difficulties and then add something to the effect, “but K wouldn’t be who he/she was without their autism.” Pretending that having autism is somehow okay. Almost sounding desirable. But, it is not. Autism is not okay and I, for one, am tired of pretending that it is okay in any way, shape or form.

Too often I have heard the old cliche that adversity builds character. That I should be somehow thankful that my children are lucky to be learning character building at such a young age. Well, thank you very much, but, my children have enough character already. They don’t need any more. And they certainly don’t need life’s hard lessons to be pounding at their door at such an early age. Frankly, it isn’t fair that their door is pounded on while others just get a tap. Which brings me to my next point. Life isn’t fair.

Growing up, I remember getting the “you weren’t born with a fairness guarantee in life” spiel from my parents. Well, fairness applies if you have a level playing field. Autism distorts that field. Everything that neuro-typical persons know about the game is understood and is defined in the play book. For the person who has autism, there is no rule book and there is no team. There is just them standing on the sidelines trying to “understand” the game. Like all parents everywhere, I don’t expect that everything should or will be fair for my son. I just want them to be able to have the chance to get into the fairness game and I want the same rules that other kids play by to apply to both of my children.

I also think that the old saying “life is not easy” when applied to our kids is wrong. Yes, life is not easy, but, who says life should have to be so hard? A middle of the road approach by society to my children would be nice.

But, what I hate the most is the kind of unspoken belief that children who are “different” are put on this earth to teach others character traits such as compassion. While it is wonderful that some (and I say some) children will be able to recognize and develop these traits as a result of knowing my son, it is not their primary purpose in life to help others gain their moral grounding. Their purpose is to bring their best person forward both in society and within themselves. And autism robs them of their whole self and their ability to achieve their full potential. Even if the only thing missing from their full potential is just to be able to tell and understand a joke.

Autism is neither my two boys friends nor mine. It is heartless and cruel. Autism has no compassion and shows no remorse. It just walks in our door and into our lives and makes itself at home. It is an outsider who doesn’t belong and I refuse to forget that. Just as we would fight off an intruder trying to get past our front door, so too must we fight autism. We must find the causes, discover better treatments and offer more to those who find autism at their front door. We must offer meaningful services to those with this neurological disorder. And as hard as autism tries to fully push open our door, I will continue to try and shut it out. I will NOT let autism take my sons and I will not let it take me. Until my last breath I will push against that door trying to keep autism and all of its idiosynchrocies at bay. It is a fight that I intend to win.

Copyright 2015

The “Good Enough” Parent vs. The “Golden Ladder” Parent

/ Gardy Loo Pismire / 2 Comments

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I’m a loser parent. In an age when parents rush to get their children in the most prestigious pre-schools, spend a fortunate on multiple language, music and sports lessons, and attempt fill their children’s social calendars with more dates than the CEO’s of major corporations; I am happy to report that I am not one of these “Golden Ladder” parents. I strive not for excellence but to be just a “Good Enough” parent.

Unfortunately or fortunately, depending on your views; my kids do not have a “Golden Ladder” parent. I am not the type that believes that each rung that their child climbs has to be new, exciting, educational, worthwhile, and play some important role in getting their child where they want them to be in 20 years. For these parents each lesson and each task must have some sort of fundamental purpose that will serve their child well in their future life and help them score in the top 1% on the ACT. Everything their darling tries is of earth-shattering importance and each rung of the ladder must be comprised of something meaningful to give their child the competitive edge that they will need when they attend a prestigious Ivy league school. They think their children must attain perfection and be model citizens as they climb their way to the very top rung where the golden ring awaits.

The trouble with all this expectation on a child is someday the “Golden Ladder” kids will fail and both they and their parents will not know how to handle it when they do. I met one of these “Golden Ladder” parents a couple of years ago in the doctors office. At that time our autism behaviors with both boys were in full swing (read LOUD) and this “gentleman” proceeded to lecture me on my children’s behaviors while pointing out how quiet, still and properly behaved his three sons were. Meanwhile the nurses slowly nudged open the reception window to hear this blowhard’s comments. They quickly called my family back apologizing for the lout who probably never would have had the nerve to say to my husband what he said to me but felt he had the right to berate a woman to make himself feel powerful and get his rocks off.

I went home and I was feeling like crap.I was tired of trying my best but not measuring up to the “Golden Ladder” parents standards. But what this man didn’t understand is that what he could show his child once and have a successful follow through; I have to show my boys 200 times each. In a day sometimes. That is autism for you. Parents with autistic children also have to work 100 times harder day in and day out than parents whose children are neuro-typical dealing with such things as food issues, anxieties and toilet training problems. Many of us have autistic children with insomnia which means we inherit the condition via osmosis so we are perpetually exhausted. In fact, many parents suffer from PTSD disorder due to the high alert status we contend with every day. Being a parent to a special needs child is not for sissies.

Having raised three successful and wonderful children to adulthood I wished I had just turned around and said to that idiot “I hope you are right about your kids. Unfortunately, you will learn someday that they have their own voice, their own dreams and their own ideas which more than likely will not be in step with yours. So before you lecture anyone else about their kids I suggest you wait until yours are grown and then we will talk. Because what I have learned from having all my children is that we all have expectations and sometimes they must be dialed up and down accordingly. Don’t make the mistake of forcing YOUR will and desires on your kid.  For if you expect your child to constantly achieve “the highest/be the best/” then you are setting them up to cheat in order to make you happy and achieve your expectations. And if you stress constant achievement and teach them that being the best is all they should strive for, then most-likely they will not learn to be content.”

That is what I wished I had said. Instead, I whispered in his ear that he was an horse’s ass because I knew if I said it out loud ass would become my son’s new favorite word. To everyone.

One of the best things I have learned from having two boys with autism is that climbing the “Golden Ladder” is not what is important. What is important, autism or not, is being able to encourage your child without being vested in the outcome and to let them have room just to be themselves. And knowing that sometimes their actions will make your cringe. But do it anyway. But perhaps the most important thing I have come to understand is that by laying the ladder flat and just putting one foot in front of the other, that is more than good enough and it is just what they need. Even if your child does their walking on their tippy-toes.

The Lonely Study…I Have No Idea How Many Days I Have to Fix This Nor Do I Care

/ Gardy Loo Pismire / 3 Comments

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  • This may be a boring post for some of you but I thought it was amazing in its implications

Recently a new research paper came out that was absolutely fascinating to me. Psychologists at the University of Chicago did a study on people who were labeled “lonely” based on a specific set of scientific measurements/criteria. The study determined that people who are lonely have brains that operate differently from those not considered to be lonely. In fact, the electrical impulses of the brains of lonely people were faster and more severe when shown negative social cues.  Researchers interpret this to mean that lonely people are guarding, both consciously and subconsciously, against social threats. This encourages the brain to be hypervigilant against perceived threatening social situations as well as go into a type of self-preservation mode. This can then often lead to social situations in which the lonely person interprets the actions of others incorrectly.

Fascinating…right!?

So what does this mean, I wondered, for persons in marriages that are breaking down as well as individuals with autism or other social anxiety issues?

I have no idea and the study didn’t examine these issues but I wish they would.

In the case of the married couple usually by the time you reach the divorce stage both parties are lonely because things are not going well and they are no longer each other’s best friend. In fact, the therapist we are going to said that we no longer have a strong friendship. (That is a statement for another post at another time) So does this mean that as our relationship deteriorated and as our friendship with one another decreased that we begin to interpret that actions of each other incorrectly leading to further disintegration? And does it mean that in exchanges with one another we are primed to guard against our spouse once again leading to a greater marital discord and demise?

Same with individuals on the autism spectrum. As they already have issues reading social cues and are often left out and lonely does this mean that their ability to read social cues diminishes even further the lonelier they become? Could this explain why children on the spectrum tend to become more rigid and less outgoing as they age?

If all this does indeed apply to both marital and spectrum issues then one of the questions that needs to be asked is at what point in the relationship does this inaccurate interpretation begin? Is it after the first disappointment or after the 131st? And what are the preliminary warning signs that signal to a person that their loneliness is having detrimental effects on themselves and those around them?

Yep, I’m a science geek and love this kind of stuff

For more information on this interesting study visit the radio program Here & Now

http://hereandnow.wbur.org/2015/09/22/lonely-social

Are You Kidding Me?!!!

/ Gardy Loo Pismire / 2 Comments

If I had to pick one set of words that have spewed out of my mouth more often than any other, my guess is that you would have heard, “ARE YOU KIDDING ME? ”  or “ARE YOU KIDDING ME!!!!! ” the most.

“You let the dog eat your $400 retainer!! A.R.E.  Y.O.U.  kidding me?!!! ”

Standing on the pull-over lane on a major highway in the 100 degree heat with a dead van as I said to Paul, “You took the panel off of the van (while I am driving) and pulled apart those wires. ARE YOU FREAKIN’ KIDDING ME!!! ”

“Are you kidding me? ” upon finding out that Andre was systematically going through the house and using everyone else’s toothbrushes when he couldn’t find his own.

On seeing Andre go into an outhouse sans sucker and returning from it with a lollipop in his mouth that he found on the outhouse floor. “Ohhh, gross, are you kidding me!”

Are you kidding me?!!! has become my mantra in regards to my slightly crazy mixed-up life.  Judicious use of “Are you kidding me?!!! ” makes me just that much closer to winning  THE MOTHER OF THE YEAR AWARD because I use it in place of “Oh, FUCK!” (my first inclination) in front of the elementary school just about every single day.

“Are you kidding me, you forgot your lunch again!”

“What do you mean you forgot your homework? Are you kidding me!”

“No, I don’t care if you tell your teacher you are on strike due to an increase in homework. Are you kidding me?!!! Yes, that is the way Democracy works and yes you have rights so go exercise them and get out of the car! NOW!”

The “Are you kidding me” phrase was also one of the first thoughts that ran through my head when B stated me might want a D.I.V.O.R.C.E. ….as in “are you kidding me????? ” you think you can manage this loony bin by yourself…”are you f’ing kidding me!!!!! ”

As much as I have used this phrase throughout my life, no one has used those words better than John Stewart when mocking the Republican party. His “Are You Kidding Me” tirades are classic. Mine too. Therefore, in honor of my extensive use of these perfect tell-all-end-all words, I have decided to give them the glory that we both deserve:

are you kidding me

Sex And The To-Do List…320 Days To Fix This

/ Gardy Loo Pismire / 3 Comments

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Last night, as passion was awakening and the day was falling behind, B began to put the move on me. As we were getting down to the serious stuff and our bodies began to move to the grove, well, all of a sudden the thought popped in my head, ” I better remember to use the raspberries up in the refrigerator or they will go bad.”

WHAT THE HECK?

After a blissful and spectacular time with the honey (take that any way that you want) it occurred to me that every time we became amorous this week, an off-the-wall list of things I needed to do would suddenly fill my head bringing that “in the mood” moment to a screaming halt. Things like:

Did I lock the door?

Did I send Jackie that children’s book for the baby?

How much wood would a wood chuck chuck it a wood chuck could chuck wood? Well, really, how much?

I really need to get some new underwear since we have become busy as rabbits. I like lime green but what color does B like? You have been married 29 years and you don’t know what color B likes! How can you not know that?

Did Andre get the toilet unstopped? I think we need to add more fiber to his diet.

What time did Susie say she would be home?

And so it goes. Millions upon millions of questions begin descending on me just like one of my kids whenever there is a good probability of a great romance looming in the distance.

And after much thought on the subject I have come to a conclusion….I find it difficult to relax and just let go. After running this well oiled yet squeaky machine my ability to turn off my brain is diminished because if I let my guard down for just one minute a major calamity is bound to occur. That’s what happens when you have special needs children who never sleep, don’t understand the concept of danger or want to experiment with electricity and water in the middle of the night. That’s what happens when they use a butter knife to take apart the front door lock and slip out into the night, or decide to consume fabric softener (poison control says it’s okay in small quantities) or find a way to remove the key board from your piano.

Of course, this is all PTSD “thinking” on my part. The boys are no longer destructive, unaware or creating their own adventures 24/7. They are growing into fine young men who I can leave alone for awhile and still find the major supports to my house standing.

And so now I realize it is me who has to let go of the past…all of it… and get on with living life as it is now. I have earned the right to sit back and enjoy and danger is no longer an ever present nuance of our lives…that is unless you count the handcuffs under my bed that I borrowed from a friend…they might just be the kind of danger that is needed around here.

32 Days And I Drank The Kool-Aid…332 Days To Fix This

/ Gardy Loo Pismire / 3 Comments

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So it had been 32 days of no yelling. Not one single loud voice, one yelp or one shiver me timbers shout. Not one shrill sentence, not one whoop, nor one holler. My lips have remained soft and my mind has remained focused on being the best new me I can be. I have gone where I have never gone before. Until this morning when I went to the well and drank the Kool-Aid.

I was getting the kids off to school. Paul is still in the hospital but Andre and Gracie were at home when Andre The Master Manipulator started “poking” at me looking for every hidden button that would possibly set me off. Everything I said was met with a total ignore or a “NO.”  Sometimes autism just sucks.We were 2 minutes from heading out the door when I realized Andre had purposely neglected to do something that needed to be done. And that’s when I lost it.

“I told you to _______” And as I said the last word I realized I was yelling. It scared the crap out of me because I didn’t even comprehend that the decibel level of my voice had risen to the sound of a fighter jet during a fly-by until the 5th word. At that point I caught myself and abruptly stopped, then whispered quietly to the universe and my kids, “Oh darn, I just yelled for the first time in over 30 days. I am so disappointed in myself.” I had just received my 30 day chip only to have it fall out of my hand.

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And so, like an AA member who has slipped, I start the process over. More meditation tapes, more quiet time, more bubble baths, more positive thinking and more contemplating what it means to try to incorporate this “new” me into the old. I worry about what this one act will do to my relationship with my husband whose tolerance for failure, while usually decent, is still tenuous towards me at this point. I am glad he is away as I couldn’t bear to see the disappointment in his eyes.

Yet, as I hang my head in shame, I realize that this “no yelling” business is a process that calls for diligence and patience with myself.. I am trying… trying harder than I have tried to do anything in my life and it is not a time for self-lashing. For tomorrow is another day…DAY 1.2 (the improved version) OF NO YELLING!

Seashells By The Sea Shore

/ Gardy Loo Pismire / Leave a comment

Today, is a busy, busy day. Doctor appointments, therapy appointments; you name it this is the day it has to be done. Therefore, I am unable to write today. Instead, I am leaving you with a story that I wrote seven years ago.

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Seashells By The Sea Shore

For me it is the end to the perfect day. The wind is blowing softly and the sandpipers are scuttling along the shore while the sun’s golden glow shimmers as it sinks below the waves. My six-year-old son skips alongside the sea, his jet-black hair flying behind him. He delights in the unfamiliarity of the shore songs that greet us and offer up the oceans bounties…shells of many colors: brown, tan, black, white and an occasional tinge of pink. He runs collecting both big and small. Paul scoops them up, washes them off, and dumps them in the bag as we make our way down the beach. I help pointing out the errant ones that he has missed along the way. But of course, I leave the chipped and broken shells whose imperfections make them less than a desirable collectors item.

“Mom, LOOK at all my shells,” his voice booms. “There are hundreds of them.”

I peek my head into the bag. Bits and pieces with jagged edges greet me.

“But Paul, these shells are all broken,” I say, trying to be helpful. “Why don’t you collect ones like this?” handing him a perfect specimen that has just washed ashore.

“But Mom, they don’t have to be whole to be perfect. They are beautiful just the way they are. God thinks that about you too.”

And with that, he looks into my eyes and holds my gaze with those deep brown eyes of his. Then he reaches in the bag and gives me a dirty black shell, the majority of whose pieces are scattered over the bottom of the Atlantic. Yet, when I turn the shell over I see he is right. The center makes a perfect circle which circles back upon itself. The color is uniform and is as dark as ebony. And as I stare at that shell I suddenly see my son within it. They both have a few cracks and even some missing pieces. Suddenly I come to the realization that they are indeed both perfect just the way they are.

Sometimes it just takes a six-year old boy with autism to remind you that perfection is in the eye of the beholder and that it is all around us just waiting to be discovered.

Copyright 2008

Who I Really Want To Yell At…Upcoming IEP…Shoot Me Now

/ Gardy Loo Pismire / 1 Comment

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So we have an IEP coming up. Any parent who has ever participated in an IEP meeting knows the special kind of hell that is reserved just for us.  It is a game for adults while the pawns are the kids. These are children whose lives can be changed for a lifetime if they only get the help that they so desperately need. Parents wrangle to get what their children are entitled to under the law while school districts try to keep their budgets in line or just disagree for purely reasons of precedence. And with an unfunded federal mandate to provide these services to those in need…well, it truly is a no win situation except in the simplest of cases.

This time when I walk into that room with principals, teachers, school district big-wigs, and lawyers I want to say something meaningful, poignant and straight to the heart. What I want to say is this:

“Every year parents of special needs children divorce. In fact, according to statistics provided by various sources it is estimated that 80-90% of couples whose children are considered special needs divorce; thereby disrupting the most vulnerable of families. These are families in need of two adults in a household to co-parent and provide support to one another while they manage hour-long tantrums, disruptive behaviors, and the close supervision that is often required of children with autism and other neurological conditions. Divorce is ugly. It changes the hearts of both children and adults. It makes kids feel unsafe and unsure about their future.

So why am I telling you this?

Unfortunately, our family may soon become one of these statistics. Although we are fighting to stay together I don’t know if we will win this battle. It is ironic because we have stayed together for 29 years with ABA therapists in our home 5 days a week. We have made it through home safety issues, seizures, special diets and numerous calls from the school. And we are tired. Worn out. And haven’t had time for one another for so long.

So what does this have to do with you and how can you help?

Do what is right by our children. Honor our requests instead of just setting them aside and ignoring them. We know our kids and often we know exactly what they need. Think in terms of the far off future and outcomes that will ensure that my child will one day be a tax paying American instead of someone who needs assistance their entire life.  Provide those things you would expect for your own children or grandchildren. Think beyond and outside of the box. Do what is moral, courageous and honorable. And do it now. Stop being intentionally adversarial and work from the belief that if we cooperate, children with special needs can and will reach their full potential; thereby benefitting this community and nation.

Finally, I am letting you know that while I do not blame you for our marital issues, I do want you to be mindful that the constant extra challenges such as IEP meetings add extra layers of stress on top a marriage that can cause it to eventually sink. Remember these IEP meetings are not a game and our family is not something to be manipulated and discarded without regard. We are people trying to do our best in situations that most of you cannot truly comprehend.

In conclusion I ask you to take to heart the words of James Rachel who said:

“Principles of justice are principles that rational, self-interested people would choose to govern the society in which they were going to live, provided that they did not know, at the time they chose the principles, exactly what their own place in society would be” “– James Rachel’s forward  to John Rawl’s  book, Two Concepts of Rules.