Autism

Lists

/ Gardy Loo Pismire / 1 Comment

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So it is past midnight and I am suppose to get up to leave for the airport at 3 a.m. Of course, I can’t sleep. And why should I? There is just too much to do. Writing out lists…Andre starting his first night college class tomorrow night and I am worried he will get lost and be wandering around campus at 9 p.m. and Nicole and her two babies won’t be able to find him. Where to buy his textbooks and how to cancel the second class he is signed up for should he get into the first.Lists about what meds he is on and when he has to take them, emails to teachers about the fact we are going to be gone and he might just have a huge melt down at school. And the chores he is suppose to do, but in reality will fight his sister about… the entire time we are in Tibet. I hope she spares his life while we are away!

Lists about what time Paul needs to go to school for math tutoring and what time he needs to be picked up. Lists about what to do should be not do well emotionally while we are done and how to call his therapist if he is headed for a breakdown. Lists about the things he needs help with, what is expected of him at school and to tell administration that we will sign the IEP when we return.

Putting up video of Gracie’s 1st place wins in diving yesterday, finishing first all around for her division and also qualifying for state with this one meet. Lists of her practices and trying to find that book she was “suppose” to read during X-mas vacation but didn’t.

Lists about who to call in case of our demise and lists for the wonderful folks that would take our children and raise them as their own. And I worry about what that would do to our kids if they had to go through losing a second set of parents when they have already lost their first. Thinking about that just about kills me. Ridiculous to shed tears about something that probably won’t even happen, but yet, I do. Lots.Because I feel like I would be letting them down when they needed me most.

I look at all these lists and I think, “how they hell do I do all this?” Seriously. I mean when I am living my life it doesn’t seem like much at all but when it is written down for someone else to follow it seems daunting. And this is minus all the doctors appointments, therapy appointments and all the extra’s I have canceled out of their lives while I am gone.

And then I start the list of why I am taking this trip and how much I love B and how much I want to be with him. Just the two of us. Alone. And soon I realize that it is the longest list, as it should be, because for years we have put our children first. As it should have been too. But now, if we want to make it to thirty years we must make us a priority. It sometimes seems selfish. Irresponsible. Indulgent. And it us. And at this point in our lives it is okay. Now if I could only believe that where it counts…deep in my soul.

IEP Services From The School District

/ Gardy Loo Pismire / 2 Comments

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For years we have been fighting our local school district to get our son what he needs in order to learn. Comprehension is sometimes difficult and math often impossible. We have watched him struggle to learn things that others grasp without effort while the school district ignored our concerns. Yet, if he is taught using particular methods he is often able to do the work that is required. Unfortunately, we do not yet know some of the methods that he would benefit most from.

We first realized he was having difficulty with math in first grade. We brought it to the attention of the IEP team. Our concerns were dismissed. In second grade, “It just takes some kids longer.” In third grade, “So he won’t be at the top of his class in math. (Yeah, duh!)” We then paid for him to go to an after school program at the cost of over $400 per month to learn his multiplication tables which the district could not manage to teach him. In fourth grade, he really started slipping but it was “Well, we can’t do anything now because he isn’t failing.” The rage I felt was immense. We were trying to be proactive but the district wouldn’t take our son’s lack of being able to understand and apply concepts seriously. By fifth grade they couldn’t quite ignore it anymore but their solutions and IEP goals were meaningless. He is now in 8th grade and doing math at a 4th/5th grade level. SIGH. I can also say the pathway has been similar for reading and comprehension but not as difficult or severe. In retrospect, the things we would do differently are numerous including taking the school district to Due Process. But the end result is that we have refused to sign his IEP for more than two years and continue to work with an outdated one.This, of course, is beginning to make the district nervous for what it means for them should we instigate legal action.

One of the things we have been fighting for is a GOOD educational/cognitive/psychosocial assessment of our son as we have disagreed with the district’s findings. We feel this is the best way to discover the issues that are effecting his learning and how he needs to be taught to reach his full potential. We have had a well-known and respected doctor in mind to do this assessment who specializes in kids with multiple “things” going on and have been fighting for the district to get him seen by him. Thus far the school district has refused citing their policy (which is illegal, BTW) that IEE’s must be performed within 60 miles of our home. If you understood where we are located you would also know that these types of services are not available here.

It has been a long, hard road with often disappointing results and constant stonewalling from our school district. But after all this time we were just notified that they have agreed to this testing and with it comes a very belated victory for our child which has cost him dearly due to these very purposeful tactics and delays.

Unfortunately, no family should have to go through this. Yes, we have at times hired a lawyer to push our case but the cost is immense and we see very little action for the money spent. School districts often stonewall because most parents cannot afford legal services, they don’t understand the law and districts know that most parents get weary of fighting “the machine” and give up. It’s hard not too. When you are already struggling at home because of the way your children’s disabilities impact your home life taking on a huge school district seems impossible and the educational system counts on that. Yet, by not doing right by our children it puts a future drain on our economy because these kids get discouraged by their lack of understanding/comprehension/accomplishment and drop out of school. They then face a life-time of unemployment or underemployment and the use of social services that could have most likely been avoided had they had some measure of success in school. Prison and gang activity is also a direct measure of the failure of the educational system.

I wish I could say it has been easy but I can’t. In fact, fighting this battle against the local school district has contributed to our ‘almost divorce.’ But I do urge all parents out there to continue to fight for their children’s place in the educational system. I have to believe that eventually we will make a difference.

 

 

Oxytocin TherapyFor People With Autism

/ Gardy Loo Pismire / 3 Comments

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Several years ago we asked our doctor about using oxytocin a/k/a the “LOVE Hormone” with our sons. At that time the doc said he wasn’t convinced regarding it’s effectiveness and wanted to see more studies. Well, start writing on the prescription pad, Doc, because the results are in.

According to a recent study released by the University of Sydney using one squirt of oxytocin in each nostril twice a day changes how children with autism approach the world and their relationships in it. Both parents and clinicians reported that children with autism were more socially responsive after beginning oxytocin therapy. Increased memory, eye gaze and emotion recognition were just a few of the benefits reported.

In case you haven’t noticed I am all in and the next time we visit our doc I am going to ask to give it a try. It couldn’t hurt and it may do a lot to change how our interactions occur.

 

The Shooting At The Regional Center Touches Too Close To Home

/ Gardy Loo Pismire / 1 Comment

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As I listen to the news about yet another mass shooting I wonder where did we go wrong? As individuals, as a society, as a nation and as citizens of the world? So much hate. So much misunderstanding. Too much religious influence. Too much disregard for others and ourselves. Too much interference in other nations foreign policy with its resulting unintended consequences.

My sons are served by the local Regional Center (RC) where we live. The RC serves individuals with autism, cerebral palsy, seizure disorders and mental retardation. They have allocated ABA services to my boys for several years and help with planning for their future. The people who work there are kind, loving and passionate people who work within the system to get their clients what they need so that they can live meaningful lives and reach their full potential. They are social workers, humanitarians and people trying to make a difference in this world. These are the kind of individuals who work at the RC…underpaid, overworked and empathetic in recognizing that disabled persons are often beat down by a society that ridicules those who are different. Most of all they try to give their clients and their families hope for their themselves and their loved ones with uncertain futures.

In the many years we have been served by the RC many of these case workers have become my friends as we spend time together trying to navigate a system in which the disabled have an unequal playing field where unemployment is rampant and the disabled are not seen nor heard. These RC workers often become of the voices for those who have little resources to take their concerns to the forefront of the political system.

Yesterday, I first became aware that something was not right with the RC when I received a phone call in the early afternoon. I picked up the phone to hear, “This is an emergency phone call. This is an emergency phone call. The Regional Centers will be open tomorrow.” Odd, I thought. Later I turned on the news and witnessed the carnage. I was horrified moreso than ever before, meaning ALL the unending shootings that have become a way of life for a country that in of itself is not suppose to be in a war zone.

So why did this particular act of violence have such an impact on me? Because I knew of these people. No, not the people who were murdered but I do know their co-workers in a different center and I shudder to think if it had been this RC instead. How, I wondered, would I explain this to my children had it happened here? How would I make them feel like the world was a safe place after walking through RC doors for so many years? How will the clients served by the Inland RC ever feel safe again in a world that already feels unsafe by many people who are autistic? How do you explain to a child that some people just view others as pawns in a game that is played with unwilling participants? How do you teach children to trust in a world in which just anyone can randomly shoot you in a restaurant, at work, on the soccer field, or at a concert; especially a child with autism who has already been bullied one time too often in his short life? How do you make them feel safe again?

The true answer is that you can’t because the shooters have taken away something that cannot be replaced with platitudes and pundit ideology…trust and the feeling of being safe. Yet, my kids have also learned that when bad happens that the response in the face of tragedy is the opposite. So while they saw sadness on the tv screen they also saw hugs, embraces, tears and people standing together to face adversity. But most of all they saw the love that fellow human beings can show one another and that defeats everything the terrorists stand for every single time.

 

 

 

More Non-Filtered Thoughts

/ Gardy Loo Pismire / 3 Comments

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Wrinkles

Paul:Mom why do you waste your time ironing my clothes?

Me: (Yes, why do I… by the time you get dressed it already looks like a truck ran over it) Because I am a mom that cares about her kids

Paul: Why don’t you just iron my clothes when they are on me?

Me: Because putting a hot iron on a child is called child abuse and I don’t want to hurt you.

Paul: So wouldn’t it be cheaper to iron all the wrinkles out of your face than to get that shot? It would take longer to get all the wrinkles but you would save a lot of money.

Sharing

The things your kids share with you in the car.

Andre: I think it would be awesome to be able to read someone’s mind.

Me: Why is that?

Andre: Because you could do all sorts of wonderful things for them like buy them the puppy they have always wanted.

Me: Andre, you are the one who wants a puppy

Andre: I’m just saying…you know there would be one time when it wouldn’t be so good to know what someone is thinking.

Me: When would that be?

Andre: When they are sitting on the toilet going to the bathroom. I mean the things that go through your mind when you are on the toilet…well they are just not things you want others to know

Me: Is that why you spend 30 minutes at a time in the bathroom?

Andre: Might be

Marbles

At Trader Joe’s this evening, just Andre and I. So he is pushing the cart and kind of flapping around as some people with autism sometimes do. After several times of me telling him to calm it down, I grabbed the cart and started flapping my arms like a damn chicken and making clucking noises..VERY, VERY LOUDLY…I must say everyone was looking at me. YEAH FOR ME!

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Andre got embarrassed at which point I said to him, “So why is it you can do things and you think it isn’t embarrassing and then I flap and cluck like a chicken and you are embarrassed?” He replied, “I don’t know mom but if you promise not to peck at the floor I promise not to tell Dad you lost your marbles.”

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.