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Posts Tagged ‘autism’

Somebody is Listening…

Posted in Uncategorized, tagged autism, children, example, listening on May 30, 2013| 3 Comments »

Women are worthless.

Women are stupid.

Women are only good for cooking, cleaning, and making babies.

Women can’t handle pressure.

Women can’t be independent.

Women can’t be athletic.

Women can’t run marathons.

Women are weak.

Women are useless.

Women are not equal.

***

How do you think my girls would feel about themselves and their future if this is what they constantly heard, directly or not, regarding the adult versions of themselves? What would their self-esteem be like? What kind of life would they ultimately lead?

No matter what was said to them directly, if they constantly heard the above statements as background noise, you sure as Hell can bet they would absorb it.

Children are always listening.

None, I repeat none of those things are true.

***

Men are dogs.

Men are sleazy.

Men are assholes.

Men suck.

Men don’t have feelings.

Men don’t cry.

Men don’t care.

Men are evil.

***

How do you think young boys would feel about themselves and their future if this is what they constantly heard, directly or not, regarding the adult versions of themselves? What would their self-esteem be like? What kind of life would they ultimately lead?

No matter what was said to them directly, if they constantly heard the above statements as background noise, you sure as Hell can bet they would absorb it.

Children are always listening.

None, I repeat none of those things are true.

***

What are you saying about autistic adults in front of your autistic child?

Children are always listening.

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The View From 100,000 Feet

Posted in Uncategorized, tagged autism, autism community, autistics, forest for the trees on May 26, 2013| 9 Comments »

I don’t fly here often. I am usually caught up in my own local mishegas, but every once in a while, I have the common sense to take a step back. True, I am not as wrapped up in the online autism community as Jess is – not by a long shot. Yes, I do write about autism from time to time on a personal level, but for the most part, I am a stranger, a seasoned tourist as best, in autism blog land.

I’m sure there are some in that land who will read this and say, “shut the hell up. You have no idea what you are talking about! You’re not wrapped up in the stories! You don’t know all the history!” and they would be right. That would be exactly the point as well, because sometimes, when you are in the middle of the shit, even if someone holds a mirror right to your face, you fail to realize just how ugly you have become; you do not recognize that you have lost the thread; that you are battling for the simple sake of battling; that you have become caught up in the minutiae, forgetting the real reason you went to war…

…and when that person who holds the purse strings on resources that need to be allocated looks around to see to whom he or she should be giving grants to, THAT person is not going to know the “history” either.

They will do a Google Search, and what will they find?

Sigh.

***

100,000 feet.

I love looking down on the world from up here. Everything is so peaceful, so beautiful. I can look down and see that everyone is working toward the same goal, the same future. A tomorrow where all people, autistic and non-autistic are treated fairly, equally, compassionately.

***

From 100,000 feet I can’t see the petty squabbles, the sycophantic massaging or masturbatory self-stroking of egos, the hurt pride over imagined and real slights, the marking of territories, the grandstanding and the chest thumping.

From 100,000 feet I can’t see that many of the parents of autistics have lost the forest for the trees, forgetting that their autistic children will someday be autistic adults who we DO ultimately want to be able to advocate for themselves.

From 100,000 feet I can’t see that many of the autistic self-advocates can’t seem to understand why some parents feel that those self-advocates don’t and can’t speak for their children; that not all autistics are impacted in the same way.

From 100,000 feet I can’t see the exhausting, monotonous war of words where both sides simply must get in the final word.

From 100,000 feet I can’t see that at times both sides simply devolve into bratty children, stomping their feet because someone disagrees with someone else, forgetting that they are supposed to be acting like adults.

From 100,000 feet I can’t see an autism community that is fractured because certain members have decided to put their fingers in their ears and yell, “la la la la la” at the top of their lungs.

From 100,000 feet I can’t see the snipers taking quotes out of context, or reacting to one fifth of a statement without considering the other 80%.

From 100,000 feet I can’t see the thoughtless and over-thought comments, meant more for destruction than construction.

***

Yes, from 100,000 feet I can’t see any of that.

***

From 100,000 feet I do see two camps that ultimately have the same goal. At 20,000 feet you might tell me that one group wants to “cure” autism and another wants to make the world a better place for autistics, but up here at 100,000 feet, both are ultimately a desire to ease or eliminate the difficulties that autistics face on a daily basis.

From 100,000 feet I see people who are passionate about making things better either for themselves or for their children or both and are pouring every last ounce of their energy into that goal.

From 100,000 feet I see parents and self-advocates fighting for dignity for all members of the spectrum.

From 100,000 feet I see one family, one community.

***

I wish that those who are caught up in this war of words, those who simply feel they must retaliate, must debate, must argue every, petty point could come fly with me up here at 100,000 feet and see the world from up here just to remember.

Just to remember why they are passionate.

Just to remember why they fight.

Just to remember that the way they behave today has a real impact on how others will behave in the future.

Just to remember that love should be our engine, and that love is kind, love is inclusive, love does not hate.

Just to remember…

***

The more you fight, the less likely the world will take us seriously. The more you act like hormonal teenagers overreacting to even the slightest indirect slur, the less likely the world will take us seriously. The more you yell at each other without bothering to listen, I mean really listen, the less likely the world will take us seriously. The more you are “angry” on a regular basis, the less likely the world will take us seriously.

The digital age has given us an incredible opportunity, an incredible power to make the world a better place, build it up, constructively, together – instead, so many within this community are using it to belittle those in disagreement with snarky personal attacks, name calling, and somewhat idiotic, occasionally fictitious drivel.

Come up to 100,000 feet and remember.

Remember why you put yourself out there in the first place…

Remember that your child will grow up to be an adult…

Remember that you were once a child…

Remember that, at least from 100,000 feet, the goal has always been the same…

…to make tomorrow better…

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The First Amendment – Part II (really? I really had to write this?)

Posted in Uncategorized, tagged autism, be cool, don't be an asshole, FIrst Amendment, Landon, mikaela lynch, thautcast, wandering on May 24, 2013| 4 Comments »

Last week I wrote —>this<— in response to a self-proclaimed crime analyst/profiler/blogger who attacked the family of Mikaela Lynch by blaming the parents for her death. In a nutshell, this was the post: the First Amendment protects your right to be an asshole…that doesn’t mean the First Amendment tells you to BE an asshole. The concept being that although the First Amendment protects your right to free speech, this picture of Moses bringing down the Two Commandments reminds you to temper that free speech with a little compassion.

This applies to EVERYONE

I was pretty proud of the post, and I got some positive feedback from many parents in the autism community.

Boy, it didn’t take some of them very long to turn the tables right around and be just as vicious, just as cruel, just as mean and cliquey as that self-proclaimed crime analyst who had attacked them just days earlier. Had they turned their emotional anger toward that self-proclaimed crime analyst/profiler/blogger, I would have chalked it up as karma, but these parents have chosen to attack one of their own. Well, that’s not quite right. They have chosen to silence nearly half, yes HALF of the autism community. Which half you may ask? The half that IS autistic. Ironic, isn’t it? The reason? Because the autistic people they are attacking aren’t parents. In these parents’ views, an autistic person who is not the parent of an autistic child can’t possibly know anything about anything that has to do with caring for an autistic person.

What?

One of their arguments compares autistics trying to give their perspective on the emotional topic of wandering to a layman giving medical advice on how to cure cancer. One blogger literally told autistics to, and I quote, “Shut Up!”

Um, really?

So, hmm, let’s use this comparison: a government body of over 500 hundred mostly white, grumpy old men dictating what half of the population (women) can and cannot do with their bodies when it comes to the emotional topic of reproductive rights. Guess what – those moms are NOT the women in this comparison, they are the grumpy, white, old men. Why? Because, going by their argument, how can they possibly know anything about anything in regard to bringing forth bills and passing laws and dealing with lobbyists – they can’t so STFU! Oh, you’ve studied the law? Well, you’re not and never have been a member of Congress, so STFU! Oh, you’ve worked for your local government? That’s cute. You’re not a member of Congress, so STFU!

But that’s stupid, isn’t it? I mean, really. How is it okay to tell the very population you are trying to protect to shut up? Again, kind of repeating what I said last week, if you want to tell people to shut up, I suppose it IS you First Amendment right…but you would be in direct opposition to God’s Two Commandments – 1. Be Cool and most important in my opinion 2. Don’t Be an Asshole. Being mean and cliquey really just reveals that you’re mean and cliquey…and that you’ve broken the 2nd Commandment and are an asshole.

When it comes to the topic of wandering, I agree that we must find a way to make sure our kids are protected, but we must be willing to listen to autistic people, if for nothing else possibly discovering that there might be a reason for some, and I stress the word SOME, of the wandering. This video, made by an autistic person, is not the answer, but it does give perspective, another way to look at the sitation.

What surprises me is that people got upset at this video. In hearing some of the responses, however, I came to understand that they cherry picked what they heard, choosing not to hear the rest.

Sound very Congress-like, no?

Yes, it touches on a subject that most parents’ of autistics cringe at – abuse – but he goes on to say that particular situation is in a very small minority. As Jess asked her readers yesterday, take a moment to listen, really listen! And then I ask you to temper your use of the First Amendment with the First and Second Commandments.

If you don’t want people like Chelsea Hoffman being an asshole to you and your community, then don’t be an asshole to the very community you are trying to protect.

And don’t be a grumpy, old white Congressman who thinks he knows it all.

And remember, just because the First Amendment protects your the right to be an asshole…it doesn’t mean you HAVE to be an asshole.

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Houdini

Posted in Uncategorized, tagged An Outpouring of Love for the Mikaela Lynch Family, autism, contortionist, escape artists, houdini, mikaela lynch, wanderer on May 20, 2013| 5 Comments »

It happened in what felt like an instant. With family and friends visiting, we were all playing, laughing, chatting in the backyard. I think Brooke must have been maybe 4 years old. At that point we were a relatively newly diagnosed family. Jess and I were a bit overwhelmed by the sudden, almost complete opacity of our now uncertain future.

One moment we were all yucking it up, the kids running about, and the next moment it was, “where’s Brooke?”

The conversation stopped.

Someone asked the other children if they knew where Brooke was – blank stares.

Within seconds several of us were bolting to the other side of the house, which is where we found her, maybe 3 or 4 feet from the street, completely unaware of the dangers in front of her.

The next day I called a guy about putting in a fence, which we had in place within a week.

***

It could happen to anyone. As parents, we have all had that moment of panic, that moment of where’s my baby? 99.999% of the time, we find them, oblivious to the unintentional scare they have put us through.

Whether or not a child is autistic, if the stars line up just so, something like what happened to Mikaela Lynch and her family could happen to anyone. It happened again this weekend in South Florida where we lost a young boy to wandering and then drowning.

Some people have had the nerve to call into question the parenting skills of those kids’ mothers; that they should have been watching them at the time, as if they should have known that that was the moment. Last week I responded to some of those people by asking them to a) take some time to actually walk in the shoes of the parents they were bashing and b) remember that the First Amendment must be tempered by the Two (Yes, TWO!) Commandments.

A lot (A LOT!) of our kids are escape artists on a Houdini-like level. We can put up gates and locks and other barriers, and our kids, with their unique perception of the world around them, can see the invisible, gaping hole we have left for them to walk through. We can buckle ’em down in car seats six ways to Sunday, and they will still be able to squirm their way out like master contortionists.

Until we learn, or at least make a genuine effort, to see the world through the eyes of autistic people, our children will always see our own deficits as security experts.

***

Does that mean we need to watch our kids 24/7?

Sure…

But I defy anyone who says they can or do.

Is there anyone who can honestly say they are capable of that? And if you think that you are capable of watching your child 24 hours a day, then do it after a week of daily meltdowns in public, less than 3 hours of sleep a night and hours of personally working as your child’s ABA therapist because you have to. If you don’t take a calculated moment to breath here and there, then at some point, you WILL break – it’s not a question of if, but when. Add to that the complete isolation from extended family and those once considered friends that many parents face and the parental duties become that much harder.

That’s why we take 30 seconds to pee in private or walk inside for less than a minute to sip a cold mug of coffee or step outside just to take a breath – those micro-breaks are what keep us from breaking, and 99.999% of the time nothing happens and the world keeps chugging along.

***

There should be no judging or bashing of Mikaela’s family, her mother Bari in particular.

None.

Because it happens.

For so long society has brushed our kids and our families under the rug, into the closet so to speak. Organizations like Autism Speaks have raised national awareness of autism, but that awareness, that understanding is still rudimentary. Until society as a whole understands what it is many of our families go through on a monthly, weekly, daily, even hourly basis, they will continue to judge without compassion. In this age of social media and digital news/reporting/blogging, it is a lot easier to spread negative, unsubstantiated stories without taking a moment to think about the consequences (or the truth for that matter).

Our community is with you Bari – we will not judge you; we will not bash you. Mikaela could have been any of our kids; you could have been any of us; and when something happens to one of us, it happens to us all. We have nothing but love for you.

It could have been her…

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The First Amendment

Posted in Uncategorized, tagged autism, autistic daughter, bad blogger, be cool, don't be an asshole, First Amendent, first amendment of the constitution, mikaela lynch, nasty names, parenting skills, redress of grievances, unsubstantiated facts on May 18, 2013| 3 Comments »

Amendment I

Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the Government for a redress of grievances.

The Bill of Rights

***

There’s a reason why the First Amendment of the Constitution comes first. It is, arguably, the most important Amendment of them all, and 4 words, found in the middle of the amendment (the freedom of speech) have come to represent what our country is all about. We have the right to speak our minds without fear of reprisal from the government.

It protects the right to speak freely, openly and against authority…

…it also protects your right to be an asshole.

So if you choose to write a blog ripping a family who has just lost their autistic daughter, and with unsubstantiated facts, call into question their parenting skills and suggest they should be investigated for negligence, well, that’s the First Amendment at work. If you want to be mean-spirited and call outraged readers nasty, I mean really nasty names, well, again, that’s the First Amendment at work. If you want to accuse others of cyber-bullying when people respond in kind to your speculative, anger inciting, hateful behavior, well, you guessed it, that’s the First Amendment at work. Yes, the First Amendment protects your right to be an asshole.

But here’s the thing…if you do those things, then you’re an asshole.

I think the Lord said it best when he gave Moses the Two Commandments…

So if you are that asshole blogger, just remember this – the First Amendment protects your right to be an asshole…that doesn’t mean the First Amendment tells you to BE an asshole.

Be cool.

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Grasping for Hope

Posted in Uncategorized, tagged autism, autistic, celiac disease, grasping, hope, hopeless, neuro diversity, parenting on May 10, 2013| 6 Comments »

There are a lot of parents of autistic children out there who just want to “fix” their child. Although I believe my view on Brooke’s autism has changed over the years, I do distinctly remember a time when I felt exactly that. Have I fully embraced the neuro-diversity camp? No, but I do feel like I see more clearly why that group is so vocal, so adamant about their views, thanks in part to Jess’ outreach to the autistic adult community.

Still, as a father, it pains me when I see my baby struggling, and I can’t help but quietly wish that certain aspects of who Brooke is were different. That sense of helplessness is what can get us, parents, into trouble. We will grasp onto the slightest bit of hope, the tiniest shred of promise, the smallest particle of “proof” in the hope that we can “cure” our child of what “ails” them. Whether we do it in our heads or actually move forward with it, we jump to attention when the snake oil salesperson presents us with an “opportunity”; we go to “that place” when the doctor says, “well, maybe…”

***

Yesterday Brooke has her annual check up with her pediatrician. I like our pediatrician. She’s the type that approaches things with a “don’t worry about it until you have to worry about it” attitude. She sometimes seems cavalier about things, but because of that, when she says something needs to be done (like when she overrode the ER and said that Brooke needed an EEG stat a few months ago) you know she means business. So yesterday we had Brooke’s annual. After taking her measurements (at 10 she’s only 49.5 inches tall and weighs only 50 lbs.), the doctor looked at her growth chart and said she wanted to test for Celiac disease.

My immediate thought was really! now this? another goddamned thing to deal with??? Jesus Effing Christ!!!

We would have to draw some blood and have it tested, which we will do in the coming weeks.

What does this have to do with grasping for hope? In talking about the effects of Celiac disease, the doctor mentioned some of the better know side effects (lack of growth, etc), but then she mentioned that in some kids Celiac disease can cause ADHD type symptoms and affect the child’s ability to learn. Taking into account Brooke’s lack of growth and her precipitous drop in verbal IQ over the last two years, the doctor felt that we should cross our t’s and dot our i’s. The likelihood is that it is not Celiac disease and that she simply burns through her calories because she never stops moving.

But what if?

But what if there is something going on there? What if there is something going on in her gut (shown to be our second brain) and it’s affecting her brain? What if she went off of gluten and suddenly the anxiety and reading comprehension issues and processing issues went away?

What if, what if, what if…

Yeah, I went there. I’m a parent. I can’t help it. I went to the exact same place when we were dealing with the possibility that Brooke was having epileptic seizures. A small part of me hoped for the worst so that the path forward would become clearer – that there might be an answer. How awful is that? There is a small part of me that is now hoping, maybe it’s been Celiac disease all along? Maybe the autism is much milder than we think.

Grasping for answers.

Grasping at any possiblity.

Grasping for hope.

grasping for hope…

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#AutismStreaks Week 14

Posted in Uncategorized, tagged #autismstreaks, autism, Autism Speaks, Charity Miles, running, running streak', Streak on April 9, 2013| Leave a Comment »

So with 98 days in the books, #AutismStreaks has only 2 days left…

…or does it?

Hmmm…

***

Week 14 brought World Autism Awareness Day on April 2nd. On that day the world lit it up blue in support of autism awareness, so I donned the blue ‘fro and ran through town. It was a relatively light week of running…well except for and because of Sunday’s 31-miler – the second longest I have ever covered on foot in a day.

***

Week 14:
April 02 – 5.0 miles 36:04 7:12 pace aHR 141
April 03 – 1.0 miles 9:14
April 04 – 3.0 miles 20:39 6:53 pace aHR 142
April 05 – 5.0 miles 37:09 7:26 aHR 138
April 06 – 1.0 miles 8:46
April 07- 31.0 miles 4:48:07 9:17 pace aHR 128 – #AutismStreaks goes over 550 miles
April 08 – 4.0 miles 41:16 10:19 pace aHR 109

Week 13 Total – 50.0 miles

#AutismStreaks Total – 557.0 miles (as measured by Garmin 610)

***

If you want to start your own #CharityStreak pick up the Charity Miles app and start raising money for your favorite charity simply by walking, running or biking:

Get the Charity Miles app:

Five lunch time miles about town in the ‘fro on World Autism Awareness Day

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Babies Make Me Cry…

Posted in Uncategorized, tagged autism, babies make me cry, curveball on April 4, 2013| 7 Comments »

Babies make me cry. They really do. They often make Brooke cry because she has an incredibly difficult time tolerating the piercing sounds that come out of those tiny creatures. I know they make some adults cry for the same reason.

But for me, I cry for a very different reason. When I see a baby I can’t help but be brought back in time, nearly 9 1/2 years ago when Brooke was the same age, laying in her crib, sitting in my lap, flopped over in her carseat.

I would look at her in the same way I would look at Katie when she was that age – I would look at her knowing that the possibilities were endless for this beautiful creature that lay before me.

I would play the next 10 to 15 years out in my head; a beautiful fairy tale; sisters who were best friends; soccer games; competitive gymnastics; stage productions; the mayor and future mayor of their school; loads of friends, parties and play dates; straight A students; the talk of the town…

Of course, life threw us a curveball.

…now I watch as gaggles of chatty girls go by; play dates and parties are rare occasions; the soccer games don’t exist and the gymnastics is more for fun; the sisters struggle with each other (though they most definitely love each other)…

***

Truth is, our futures, no matter who you are, rarely turn out the way we imagine they will. Autism, however, didn’t just nudge us on to a different path…it landed us in a completely different dimension of space-time.

We’ve made our way; we’ve found joy, sometimes even in the face of sadness; we’ve managed to relentlessly push forward, even when it feels like we are sliding backward. We struggle, just like so many, but we that is okay.

It is nothing like what I was expecting; I don’t think I even had a conceptual understanding of what lay before me.

…and that is why, when I see a baby, I cry.

3…

2…

1…

…nearly 10 years ago…

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Hidden Blessing

Posted in Uncategorized, tagged autism, growth, hidden blessing, maturity on April 3, 2013| 6 Comments »

I was at the doctors office today picking up a medical clearance form for the older one to play sports on her school team. In the corner of the lobby I saw little boy playing with some plastic dinosaurs. As little ones will do, he had them clomping and chomping around, roaring at each other – he was having a great time. He must’ve been no more than maybe three or four years old. This realization initially made me sigh, a sigh of mild depression. I thought about Brooke, who just now at the age of 10 is starting to do what this boy was doing. She plays with her dolls, they do imaginary play, she goes back and forth. Much of it is based on shows she has seen, but there is definitely adaptation and creation. She has lately been, for lack of a better word, back filling the gaps in her learning. The way she is acquiring skills and knowledge is not linear like the way many of us learned things, but rather she skips and hops and circles back and then does it all over again.

It’s tough to see your ten year old clumsily do what five, four and even three years old kids do with deft ease.

But then I thought of Katie. She is twelve…twelve going on what sometimes feels like forty three. She is flying at her teenage years at the speed of light while simultaneously trying desparately to hold on to her younger years. Thank who or whatever it is in the sky that she still thinks boys are essentially yucky. Both Jess and I can feel her growing more independent, and that is both a wonderful and scary thing (not just for her, but for her mommy and daddy as well). Katie will occasionally act like she would like to be five or six again, but it is always just that, an act. I’m not saying it is disingenuous by any means, but the bottom line is she is twelve and there is no going back from that.

But things are different with Brooke aren’t they? Perhaps her form of autism, perhaps the differences that make her autistic have a silver lining that we (Jess & I) have failed to see in our hurry to see our kids grow up. At some point, all parents realize that time doesn’t stand still. Even with that realization, we don’t fully appreciate it until we wake up one morning to find our children have become young adults. Even if we DO appreciate it, there is nothing we can do to stop the passage of time, the progress of growth, the emergence of maturity.

Perhaps, just maybe, this disordered path in time that Brooke seems to be walking on can be seen as a gift to me and to Jess…an opportunity to really see those moments when imaginative play emerges, to be able to witness the wonder of childhood discovery all over again and then sometimes yet again.

Quite possibly a hidden blessing indeed.

Recently celebrating Stevina’s 10th Birthday with some cake…

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#AutismStreaks Week 13

Posted in Uncategorized, tagged #AutismSteaks, autism, Autism Speaks, Charity Miles, running on April 3, 2013| 1 Comment »

Week 13 is in the books – it felt like a very productive week of running, highlighted in part by the news that Mophie would be powering my Charity Miles for Autism Speaks come June – #synergy!

Saturday’s run also brought me to 500 miles for the year – not bad for a guy who had hardly run during the fourth quarter of last year.

I hope you got your runs in!
Luau

Week 13:
March 26 – 7.0 miles 54:49 7:49 pace aHR 130
March 27 – 5.0 miles 34:32 6:54 pace aHR 158
March 28 – 3.0 miles 24:35 8:11 pace aHR 126
March 29 – 18.0 miles 2:36:37 8:42 aHR 127
March 30 – 10.0 miles 1:15:55 7:35 aHR 138
March 31- 1.0 miles 9:04:00 9:04 pace
April 01 – 6.0 miles 52:09 8:41 pace aHR 150

Week 13 Total – 45.0 miles

#AutismStreaks Total – 502.0 miles (as measured by Garmin 610)

***

If you want to start your own #CharityStreak pick up the Charity Miles app and start raising money for your favorite charity simply by walking, running or biking:

Get the Charity Miles app: