No Filter

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One of the things about Autism that is so endearing/maddening is the utter lack of a filter that Andre has.  Whatever he thinks…is what is said. We usually get comments from friends like, “Andre manages to say what most of us wish we could say but aren’t brave enough to do so.”

So yesterday the boys saw a picture of me from about 20 years ago and Andre told B that I looked sexy. It was one of those that they did your hair, makeup and dressed you in nice clothes. Glamour Shots. Now defunct. Like me.

So today I said to Andre “I hear you told Dad that I looked sexy in that picture in the garage.”

Andre: “Yeah I can tell that back then you WOULD have looked cute in a bathing suit.”

Me: “How can you tell that?”

Andre: “It’s a guy thing mom. Every guy can tell whether on not a girl will look good in a bathing suit. But what I really want to know is what happened to you?”

Me: (thinking I probably should not ask and just let things lie) “What do you mean?”

“So is it the fat part of you or the age part of you that got out of hand or is it both?”

“No, it’s the having kids part that did it to me.”

“But I hear people say having kids makes you stay young. It obviously didn’t work for you.”

“And it won’t work for you either!”

Andre: “Perhaps I will create a dinosaur instead of having kids! But… then I would have to worry if it would eat people!”

Pause…

“See mom you have it really easy. At least you don’t have to worry if I am going around biting people’s heads off!”

Autism 101

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AUTISM 101

Often times we have our best conversations in the car so tonight (2011) while Paul and I were out together I decided to broach the subject of autism and explain to him about the condition he has. Our conversation went like this:

Me: Hey, Paul have you ever heard the word autism?

Paul: I’m not sure but I think so.

I pause wondering if I should go on

Paul: So what is it?

Me (Describing Paul): Well, it is something that some people have. Sometimes a person with autism hears noises louder than other people. LIke they might hear the refrigerator sound very loud whereas most people can not really hear it. Or sometimes for someone with autism lights seem very bright. Sometimes people with autism find it hard to be touched or they are really ticklish. Do you want me to go on?

Paul: Okay.

Me: Sometimes people who have autism find it hard to look other people in the eyes when they are talking to them and sometimes it is very hard for them to sit still. For some people with autism the tags in their shirts make them itchy. Sometimes it is hard for them to talk to other people. But people with autism are usually very smart and often they see things in ways that other people don’t which makes them good artists or good with computers or good playing a musical instrument. Their brains just work a little differently than many people, but hey, everyone is different. Some people have brown hair, some people need a wheelchair to get around. Having autism is just like being a boy or being Korean or having blue or brown eyes. It is just a part of who a person is but not the whole person. Do you have any questions?

Paul: “Mom, do you have autism cause if you do, I still love you just the way you are!”

ARE YOU KIDDING ME… NEVER TAKE FOOD FROM MY KIDS

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YOU HAVE TO BE KIDDING ME…

Sometimes I just shake my head and surrender.  I mean sometimes there is just nothing else to do but that. Today was one of those days

So I am downstairs with Paul when he says to me, “Mom, Andre dropped his pack of gum in the toilet.”

“That’s too bad,” I said.

“But Mom, he dropped his pack of gum in the toilet.”

“Did he flush it?” I ask.

“No”

“So where is it?”

“Andre has it”

“Andre,” I yell at the top of my lungs, “Come down here please.”

“Okay Mom”

“Andre, did you drop your pack of gum in the toilet?”

“Yes, Mom, I did”

“So where is it?”

“Right here,” he says pulling it out of his pocket.

Then it dawns on me….

“Andre, is the gum you are chewing, the gum you dropped in the toilet?”

“Yes, Mom”

ABA therapist T and I just stare at each other incredulous. Then T recovers and says “Andre gum that has been in the toilet has germs. Go spit it out right now!”

Andre runs to spit it out….then Paul follows right behind him and spits his out!!!

ARE YOU KIDDING ME??????? REALLY????? After that lollipop incident in the pit toilet? Didn’t you learn anything then?????????? Granted you were only five but PLEASSSSSSE that is one of the lessons that should never be repeated.

“Andre, why did you think it was okay to fish your pack of gum out of the toilet?”

“Well, I let it dry out first!”

And there you have it! Hopefully now you will remember my rule. NEVER, EVER, EVER take any food products from my children. NEVER!!!!!!!! Taking food from my kids can be hazardous to your health!!!!! Consider this to be a warning and some sort of legal publication!!!!

The SEX Talk…274 Days To Fix This

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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

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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

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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

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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

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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