Oxytocin TherapyFor People With Autism

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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.

 

Minimum Days

images-14Too Bad My Kids Don’t

All across my school district

I hear the mothers sigh

Another minimum day for the kids

Oh why…oh why… oh why?

If they are forced to wake them up

Before the birds do fly

Surely the district can keep them there

Until the afternoon arrives

But no you will bring your kids

For half a day at best

Then you will turn around and fetch them

While your house remains a mess

The usually quite afternoon

Becomes quite the verbal brawl

As kids run and out of the house

Poor mom, the referee of all

And so I would curse the district

This idea put into place

But I’m too tired and weary

As I run back and forth in haste

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

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

Unexpected…314 Days…Do I Even Want To Fix This?

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I showed up unexpectedly

Hopeful…for a long lunch

I never show up uninvited

But I had a hunch

We needed some more time together

You told me you were going to the gym

“Let’s go,” I said.

And you said, sure… hesitated… and then insisted on going to lunch first

I would love to go to the gym with you now

Again you insisted on going to lunch right then

We did it your way…again

THE LUNCH

Lunch was lovely

Eyes locked

Fingers touching the way they do

When you want to turn me on

Beautiful blue eyes batting at me

Smiles a million miles long

Conversation sweet but lean

The man in the booth behind us flirting at me with his eyes, his smile

And for the first time in 29 years I wondered what it might be like to flirt back

For it was nothing I had even considered…before now

THE GYM

At the gym you took me into a tiny workout room

Ellipticals you said

I love the ellipticals

And so we huffed and puffed together

And then I saw that tiny almost imperceptible wave

To shoes and a dress which were the only things visible to me

I asked who it was

Gweniferr you said

And my head exploded

But not from a lack of oxygen from too much time on the elliptical

But from all the air escaping me after being punched in the gut

Hard. AGAIN.

Oh… the same Gwenniferr with whom you exchanged inappropriate texts

Oh… the same Gwenniferr you SWORE you never saw anymore because

She never came to the gym

Oh…the same Gwenniferr you have no interest in

Even though your texts several years ago appeared to speak differently for you

OH…THAT GWENNIFERR!

The elliptical stopped

NOt realizing that I was responsible

For the inaction

I wish I was mellow dramatic and could have passed out on the floor

Ladylike, as they did in the old days

A swoon

But instead I wanted to slam my body into yours

Angry…more than that

Full of RAGE…but I kept my cool and later felt… nothing

But a gaping pit where my heart once raced when you touched me

It appears you have lied to me again

Later you showed me the rest of the facility

The huge gym with even more ellipticals surprised me

It was the gym I assume that Gwenniferr had been working out in

Usually with you?

But not today

Obviously I was unexpected by her too.

  • All words on this site are copyrighted by the author

Happy Birthday

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.