Autism

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.

Growing Pains…293 Days To Fix This

/ Gardy Loo Pismire / 4 Comments

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B is away on business for the week. While away, he had dinner with an old college friend and he told K that we had been having marital problems. When he told me this I reacted in a way that surprised me…I was crushed. I wasn’t upset that B talked with her for we all need someone to talk to and to help us gain a different perspective. In addition, we all need someone to just listen when the tides of life are out so far it seems they will never surge to shore. And even though I understood his need to discuss recent events I was still disturbed.

What bothered me about this entire situation was something simple and honest. It is this… Just how long are we going to continue to define our relationship by the worst point in our lives together? How long are we going to continue to act as if our marriage is on terribly shaky ground?  How long will this rough patch be our main identifier of all the things we have accomplished/survived/created over the past 29 years?

This is not to say that we still don’t have important issues that we are trying to resolve. This does not mean that we don’t have some distance to travel to make our way back to one another. And this certainly doesn’t mean that there still isn’t a chance that things will not work out the way we have planned. But we are moving forward with honorable intentions and the belief that we can make this work. Because it has become apparent through therapy that being separated from one another would bring much greater agony and suffering to each of us then any of the pain we have endured in the past three months, let alone twenty-nine years.

Thinking about all this after B’s conversation got me contemplating our marriage and our family. We’ve had six children and have watched them grow up and some grow out of the house. And upon reflection, I realized that marriages are much like children reaching puberty and going through those horrible and painful growth spurts. In fact, much like teen-age growth pains, for the past year or two our relationship has hurt and ached. It had stagnated and was no longer thriving. Then finally new growth has occurred and we’ve growth taller together and flourished. This growth spurt has stung, ached and produced much anguish but now we are growing in the same direction at the same time and I want to preserve this sense of wonder and repair. I also want to act in a restorative manner and take a protective stance in regards to the many incredible things we had done to make this relationship not just survive but blossom.

One of these ways is acknowledging that we have come a long way in 29 years:

  • We put ourselves through college without debt
  • We have moved 15 times as B advanced in his career
  • We survived serious and hurtful family issues
  • We went through IVF four times in our attempt to become parents
  • We have three home-grown children and adopted three more
  • We’ve had three of our parents die
  • We have two boys with autism which has stretched our relationship almost to the breaking point, not because of them but because of all the extra expenditure of effort to get them what they deserve
  • I’ve had numerous surgeries, one kidney donation, and the intense pain of fibromyalgia
  • We have had issues that easily would have torn others apart
  • We have had job loss and loss of a potential business that we adored
  • We have excelled at what we have created in both work and play

And yet we have survived. Sometimes even thrived. And in that miracle I no longer want to feel concerned, scared or hurt by my worries about my marriage. I want to rejoice in it and the man whom has made it a mostly incredible, exciting and truly meaningful relationship for almost three decades.

So there. I’m done. And in trying to restore all that is good about this life that I share with a man who I love, I am thinking about changing the name of this blog. Maybe it will be myhusbandwantedadivorceovermydeadbody, or Are You Kidding Me? or maybe just ?.

Whatever I decide, I know the change will be for the positive…just like those growing pains that have improved my marriage and my life.

Brain where social behavior occurs is different for those with High Functioning Autism

/ Gardy Loo Pismire / Leave a comment

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In a new study released yesterday, researchers at UCLA determined that areas in the brain that are associated with social behavior were less developed and lacked sufficient networking in high functioning Autistic Spectrum Disorder (ASD) individuals as compared to their neurotypical peers.

The study noted that ASD subjects showed an increased blood flow in the frontal areas of the brain which is linked to higher oxygen metabolism in those parts of the brain that are used to navigate social situations. This is opposite of individuals not on the spectrum whose blood flow is reduced as they mature. According to scientists increased blood flow suggests that in persons with ASD there is delayed neurodevelopment in these front areas of the brain that are responsible for social-emotional cognition. The study is consistent with MRI findings of enlarged brain size due to a lack of pruning as the brain develops.

The study also found a lack of long-range connections between the front of the brain and the back. This apparent lack of connectivity means that information is impaired between distant areas of the brain leading to a decreased social responsiveness in persons with ASD.

Researchers hope that in utilizing information gleaned from this study that in the future scientists may contribute to developing an even earlier way to diagnosis and perhaps treatment ASD. And that would be great for families who have young children and are just starting down this long and often challenging road. Because if I am completely honest, and I could have given my sons pills to alter their autism so that social-emotional dealings would have been easier for them their entire life; I would have done it in a minute. For as a mother you don’t like to see your child suffer by being the outcast, being teased, being rejected and being bullied day in and day out. Sometimes the lengths to which people will go to hurt and embarrass others are just mind-blowing. Never mind having to fit in with the other kids, ASD kids often are surrounded by adults who unintentionally/intentionally contribute to their ostracism and loss of self-esteem leading to a high rate of suicide in this segment of the population.

Yet, at some point as people with ASD mature they come to recognize what is unique and wonderful within themselves and these future “treatments” no longer appear to be the miracles that they might be considered to be when a child is two years old. Both of my sons say they are happy being who they are, autism and all. Both do not see a “miracle” pill being part of their lives. And I am happy that they feel that way but as their mother also know that no child or family should have to go through what they have gone through to get where they are now. I find nothing noble in suffering and my children were not put on this earth to be the moral compass and recipients of those without ASD practicing their seven virtues to buy their way into heaven. So while I welcome advances in ASD medicine, I will do so on the side lines. But I will cheer on and support those parents of the future who may be presented with opportunities to change the lives of their children in ways that are most likely for the better. For everyone deserves to be able to reach their full-potential which is something many with ASD are denied.

Losing It

/ Gardy Loo Pismire / 4 Comments

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As you know I am desperately trying to curb my yelling habit and for the most part I am succeeding. I had only yelled once in over eight weeks which in itself is amazing but this weekend I lost it.

It isn’t easy raising teenagers especially those with autism. Andre does everything he can to push my buttons. While incredibly smart he also uses that keen intelligence of his to manipulate those around him and it is draining. This weekend after repeatedly asking him to hang up his clothes he told me, “I don’t have hangers.” I responded by going to his closet and started throwing every hanger he had out saying repeatedly “Here’s a hanger, here’s a hanger” until I had thrown at least 30 into the middle of his room. Then I decided that he could go through all the shirts and get rid of those that no longer fit him and took all those shirts off their hangers and threw them in the middle of his room until his closet was bare. During this time he was intentionally saying “push your button” things that just fueled the fire; the embers rising swift and hot like my temper.

I hate when I lose it with my kids. It makes me feel so small. It makes me beat myself up about not being a parent that my children deserve and certainly not one whose behavior I want them to emulate to their own brood when they become adults. Losing it with my children feels like it diminishes my capacity to be a fully functional human being and that in losing it I also sacrifice part of my own humanity in the process; something I can ill afford. I hate it.

Mindfulness has helped change many of my reactions to situations but what do you do when mindfulness dissipates in the heat of the moment?

I am learning to apologize and pray that the others involved grant me grace. Then I sit in the moment of shame, observe it, then let it go. For they tell me that the only way we can feel diminished is through self-talk in which we berate ourselves for our numerous failures. Frankly, that kind of talk doesn’t get you very far in life and I’ve done enough of it to know. Dispassionate observation of what occurred and pausing to recognize what happened and then letting it go is my only option.  Then I just forge ahead with the belief that I can and will try to do better.Truly it is the only thing I can do.

Do You Still Love Me?

/ Gardy Loo Pismire / 1 Comment

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https://www.youtube.com/watch?v=BwIwwbNaFTU

Do you still love me?

Am I still your girl…?

And the woman of your dreams…?

The first person you think of when you wake up…?

And the last person you remember when you lay your head down to sleep…?

Do you still love me?

Does the thought of me bring a smile to your face…?

Do you still chuckle about the time I was knocked over

By that humongous wave on the beach…?

Can I still turn you on with just “the look”…?

Is mine the hand you want to be holding when you pass

From this earth when leave your dreams behind…?

Do you still love me?

Do you still enjoy sipping wine by the vine, just the two of us…?

Or listening to me play the piano…?

Do you still like the way I touch you “down there”…?

As you slip hot and slick out of the shower…?

Or do you love me because I am the mother?

Of your children

Their chauffeur to school and back

The one who runs everyone to the doctor

The cook, shopper, bill payer, gardener, collector of all things important

To this family now and for future generations

And the person whose name is listed as

Joint Tenant along with yours

Do you still love me?

Because it is easier than trying to untangle

All that is us…?

All that we have created together…?

Because, ultimately, I make your life in many ways easier

In ways you would rather not be bothered with

And you don’t have to leave work because autism has reared its ugly head

Making life difficult for our son at school…and then at home…without you here

Is the thought of me staying scarier than

The thought of me going my own way…?

All I know with certainty is that

You loved me once

Madly

Passionately

Completely

To the very depth of my soul

Will you ever love me like that again?

Or will we live on past memories

That carry us slowly to our graves

Missing the vitality of a new/ sweet love

Like the love we once had

Do you still love me?

Or is our time limited until

You figure out what you want to do

Without me…?

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

Happy Birthday

/ Gardy Loo Pismire / 1 Comment

Yesterday Andre turned 15. It hasn’t been the easiest journey getting him there.

Autism sucks. The endless meltdowns, constant push backs and never-ending trips to the schools. Countless hours of driving back and forth for therapy: hippo, occupational, psychotherapy just to name a few. The still unresolved issues of cleaning up after himself and throwing wrappers wherever they land. And the inability to consider other people’s interests and emotional needs instead of his constant “ME, ME, ME” thinking can leave me discouraged and exhausted.

Putting Andre on numerous drugs to control tics, anxiety, and severe ADHD wasn’t on my radar. I hate using these medications the combination of which can cause side effects that go bump in the night. And the cost, even with insurance, is astronomical. But managing him is easier with them than without and he doesn’t like how he feels naked and exposed when he forgets to take his meds.

Having two boys with autism has put our marriage under stress and considering divorceimages-5. Disagreements over how to approach IEPs, how to get Andre to comply, where we should be putting out money in our never ending quest to get the boys the skills they need to navigate life. Being totally exhausted hasn’t done wonders for our time together, especially in the bedroom.

I have been at my best and at my absolute worst because of autism. I have fought harder than I ever imagined I could trying to get services. I have loved fiercer than I ever thought I knew how. I did mundane tasks repeatedly in hopes that Andre would “get it.” I have also yelled louder, gotten angrier than I ever thought I was capable, and said a few words I desperately wish I could take back. Autism has at times brought out the Jekyll and Hyde in me and taught me things about myself I desperately wish I did not know. And PTSD-like symptoms still linger when I hear prolonged screaming.

But to his credit. Andre works harder than any one I know just to survive in the world. He fights anxiety, he has severe insomnia, bright lights bother him while loud noises used to do him in. Socially, he lives in a very isolated place. He wants friends but doesn’t know how to act so that people want to spend blocks of time with him.He is very close to beginning work on his Eagle Scout, he has saved the life of a elderly woman, and he carries amazing grades in school. He loves band, once memorized a 200 page book word for word, and he can name every dinosaur known to man including where they lived and during what period.

Recently, I asked Andre if he could take a pill so he would no longer have autism if he would do it. He replied, “No, because this is who I am and I like me.”

And even though this autism journey with Andre and Paul is not the one I signed up for (think European Cruise vs Survivor in the Outback); I also know that my boys are becoming young men who are an asset to the community and our family. They will make their way in life. It may not be the life I envisioned but both boys can and will make a life that they are happy with and can be proud of.

Yes, autism sucks but for some kids with this disorder there is a light at the end of the rainbow and in this past year its brightness has intensified and let us see the light where darkness once roamed. Autism sucks but it does not rule us.

Happy Birthday, Andre. You are deeply and dearly loved. I hope others will learn to accept and love you too.

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.