Special Needs Kids

The SEX Talk…274 Days To Fix This

/ Gardy Loo Pismire / Leave a comment

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One of the good things about Autism is that sometimes it qualifies you for services that will help your children navigate the world both now and in the future. Several years ago we had individuals trained in ABA therapy come into our home five days a week teaching our boys such things as social skills, safety awareness, and on one occasion we had THE SEX TALK with the therapist leading the conversation. These are just a few of the comments made during that discourse:

  1. If THAT is what it is suppose to be used for, why am I only finding out about it now?
  2. That’s a relief! I thought after you used it once it fell off!
  3. I hope Mom doesn’t take mine away like she did Max (we had just had the dog neutered)
  4. After this, I REALLY don’t want to know what they are going to tell me when I am in seventh grade.
  5. Oh geez I am only 11 years old and the thought of a man and woman having sex makes my penis want to throw up!
  6. I think that this will blow Paul’s mind when he hears about this. Not in a good way either.
  7. Is that what they mean by “an endless black hole?” (Yes,he said that with total sincerity)
  8. If sex feels good why does anyone stop doing it?
  9. I think I want to go into the condom business
  10. If it takes two people to make a baby, what do three people make? ( I have NO idea where that came from!)

Since that time the questions have evolved and become more sophisticated. Last week we graduated to sexual consent and I found a video that was probably the best description of it I have ever seen. Every young man should see this before he even considers having sex. Every young lady too. So here it is. And now I think I will go get a cup of tea.

http://www.theguardian.com/media/2015/oct/27/police-youtube-ad-campaign-sexual-consent-tea?CMP=share_btn_fb

THE HAPPIEST HALLOWEEN EVER

/ Gardy Loo Pismire / 2 Comments

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Sometimes I am really worried about the young people growing up in today’s impersonal world. Often it seems as if they have little compassion, are involved in things that are questionable, and spend way too much time on video games while not spending enough effort on interpersonal relationships. Tonight, I am pleased to say I am going to have to re-consider those impressions.

This Halloween Andre chose to forego the usual costuming and instead he decided to be the one to hand out candy to all the kids in the neighborhood. I remember years past when Trick-or-Treating was very hard on him. Too much commotion, too much noise and too many scary things. Yet, tonight he wanted to be part of the action; just from the safety of his own front porch.

This evening I heard constant giggling coming through our door from the little kids as they came up to the front porch where Andre was sitting, candy in hand, excited to hand it  all out. Andre talked to every child and had a running commentary going with everyone who approached. There wasn’t one person who came to our house that he didn’t  talk with and befriend. And then something magical happened.

To understand Andre, you have to understand that he has only been invited to one or two birthday parties in his entire life. While kids at school are mostly kind, he has never had much of an out-of-school relationship with anyone. His rapid speech and his way of relating to others due to his autism has made attracting and maintaining friends difficult for him and so I was amazed by what I saw as I opened the front door by chance.

There on the porch stood five gangly boys all of whom had been in Andre’s class last year. They were the popular kids, the ones THE OTHERS all wanted to be like, especially Andre. I watched as each one of them came up to him saying “Hi Andre” while giving him a teenage boy pound on the back usually reserved for young men on the football team.  All seemed glad to see him and each told him that they missed him. But the most profound moment came when one of the boys looked Andre in the eye and said, “School isn’t the same without you. You taught us all so much.”

And then they left.

“Did you see that mom? All my friends were here. I can’t believe it. Wasn’t that great!”

Yes, Andre, it was great and for more reasons than you will ever know. For those boys restored my faith in today’s teens. They are good boys with great hearts and an ability to make everyone feel liked and included. But most of all, I came to finally understand that there are all kinds of friendships, and while Andre’s are certainly different from mine, to him they are every bit as valuable. Even if those friendships occur just for a few minutes at a time on a spooky Halloween night.

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.

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.

Today It’s Our Turn…319 Days to Fix This

/ Gardy Loo Pismire / 1 Comment

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Today and tomorrow is Mommy and Daddy time. Our’s alone. No kids. No Traffic. No deadlines. No chauffeuring kids from here to there. Just the bliss of a quiet twosome.

After many attempts we finally found a sitter to watch the wee ones, the wild ones, the ones that we love. And we have 24 hours to ourselves in a place where we can run around naked, howl at the moon, and indulge in a little romance. Twenty-four hours to cuddle, spoon and do our taxes (I hope he is only kidding!) Twenty-hour hours with no television, no phones and plenty of places to play hide-and-seek.  One day without children who always knock on the door just when we are getting down to the nitty-gritty.

Somehow, I think these will be the shortest 24 hours known to humankind.

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For The Sake Of The Kids…319 Days To Fix This

/ Gardy Loo Pismire / 1 Comment

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Last night I made the mistake of saying to B  that I wondered if he was only staying married to me for “the sake of the kids.” I was the second time I have asked and in further contemplation I realized I didn’t truly want to know the answer. (Why I ask these difficult questions is a thought for another day!)

The first time I asked that very painful question was about a week into the “maybe” D.I.V.O.R.C.E. when B and I were talking about how difficult a separation would be for our particular set of kids. As we walked he said under his breath, “Well, maybe we will just stay together for the sake of the kids.” That answer has been bothering me ever since.

“Wait a minute,” I replied at the time. “I’m not staying in this marriage if it is only for the sake of the kids. I want and I deserve more. Our kids deserve more too. If that is the only reason you are here then we do not belong together and we had better wrap this thing up right now because I will not live in a lifeless/loveless marriage. I am too selfish.”

Unfortunately,I think parents often feel like they are doing their children a favor by waiting until their kids are grown and off on their own before they begin the process of divorce. But children sense when something is wrong and can pick up signals that they misinterpret leading to self blame or problems in their own future relationships.

Staying together “for the sake of the kids” also creates guilt for young adult children when it occurs to them that their parents sacrificed their own happiness for them in the form of trying to be the “ideal intact” family. No one wants to feel beholden to their parents in this way.

Another problem with staying together “for the sake of the kids” is that as parents we model what a marriage is suppose to look like for our children. If there is animosity, fighting or belittling a partner our kids tend to find themselves in the same sort of relationships later on down the line. And is that what we really want for their future?

I would like to think that if B and I remain together it will be because we have once again made our marriage the number one priority in our lives and that it will not be for “the sake of the children.” Because frankly intact is not better especially if truth, admiration, respect and love is missing in the equation. Especially truth.

Last week after intense questioning about why we were seeing a counselor, I told the kids that mom and dad were going to see a therapist because we had been married a long time and that we had forgotten how to communicate with each other so we were having the therapist teach us a better way of talking to one another. I also told them that we were going on date night because when you have been married as long as we have sometimes you forget how to have fun together and we loved each other enough that we wanted to spend time together having fun. And that is the truth and it is what needs to be told.

Several hours later after being told he needed to ponder the answer to my question, B came to me and said, “I have been thinking about it and on a scale of 1 to 10 with 10 staying together ONLY for the sake of the children, I would have to say I am at a 2.5”

And with that I breathed a sigh of relief because it tells me that neither of us are staying together for just the sake of the children but instead for the sake of a relationship that we both care enough to work together to fix…219 days to fix this!

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First Day Of College

/ Gardy Loo Pismire / 1 Comment

Meet 14 yo Andre. His sense of humor is scalding, his style of dress is prehistoric and he in a bona-fide hero…he saved another person’s life while risking his own. He insists on routine, he is stubborn as the day is long, and he has autism which while not completely defining him gives you a hint of what is to come.

Today was Andre’s first college class. It is hard to express just what I am feeling but I can tell you this…I am very proud of him.

We are fortunate that there is a high school that is located on the local college campus and besides the regular curriculum the kids also have the opportunity to take college classes. The goal is to graduate with a high school as well as a college diploma at the end of their four years.

We are also very fortunate that Andre, despite his challenges including autism and severe ADHD, is able to navigate the system as well as he does. He is a great student and has a very unique perspective on many issues. And while I am glad he has this opportunity I also worry about my 9th grader.

It’s hard not to be apprehensive about Andre as he steps into this new, more mature world that isn’t set up for someone on the spectrum.

It’s not the drugs I worry about. In Andre’s very black and white world, where rules are to be adhered to at all costs; illicit drugs are just not in his game book.

It is not all the bad influences that concern me. Unfortunately, no one is interested enough to go beyond Andre’s quirky behaviors to get to know him yet alone influence him.

It is not the classwork that has me sleeping less at night. With a son who is a human calculator I am confident in his ability to master anything that his instructors throw at him.

What worries me is those who will take his natural kindness and abuse it. His openness to everyone and everything and exploit it. His way of singing through life and squash it. But most of all, I worry about predators, especially sexual, who will see a target who has no understanding of how protect himself and they will move in. And on a campus that offers hims so many opportunities, a campus full of adults, I pray that no one takes advantage of a young man who takes advantage of no one and desperately wants to have one, just one, friend and to fit in. And if I had the chance to say something to all the students about Andre I would say just let him be himself, listen to him and help him navigate when he becomes rudderless but most of all just be his friend…everyone deserves to have at least ONE friend and by being his friend you will be the one who will gain the most.images

19 Days Yell-Free (almost) 346 Days Left

/ Gardy Loo Pismire / Leave a comment

So I have not yelled in 19 days (almost) and it feels good. About the almost…yesterday I came home with a load of groceries in my arms and lugged them onto the kitchen countertop, spilling a glass of red juice all over the cabinets and floor I had just spotlessly cleaned. Without a moments hesitation I yelled out “Oh Fuck!” which immediately put me in the running for ‘Mother of the Year Award.’ So while I did yell I did not yell at any living breathing being in my home I did send that utterance out into the universe. It should be bumping into you just about now!

One of the many ways I have been working on not yelling is by swimming for 30 minutes per day and as I swim I say positive affirmations in my head like “I am calm, I am loving, I am content with things as they are, I no longer yell, I am joyful, etc.” I find this very easy and it keeps me occupied while I swim so that the result is that I swim longer. The biggest bonus is that while underwater I can not hear my children bickering. For when I hear the fighting it  makes me want to grow gills and fins so that I never have to get out of the pool and hear, “Sheeeeee touchedddddd meeeeeeee!”  in stereo sound again.

Everyday is a challenge but thus far I have succeeded when no one thought I could. That said, I have been spending more time in my closet listening to Chel Hamilton meditation podcasts. I figure that is a small price to pay for not yelling and feeling better about life in general though it also means that I need to find another place for my husband’s smelly undershirts. For me, sweat and serenity do not go together and should not inhabit the same place.