Two Children, One Spectrum: A New Series

If you’re part of the autism community you’ve undoubtedly heard the expression, “If you’ve met one person with autism, then you’ve met one person with autism.” It’s supposed to be ironic in its simplicity.

 

Sayings like this don’t appeal to me because they are so simple. It doesn’t really convey all the intricate meaning about how different and varied autism can be from one person to the next. My son has never really fit the stereotyped idea of what autism looks like. I thought it might be enlightening to have a fellow autism mama work with me to write about our children, covering several topics.

 

Now, I know that most people who read my blog already know about autism and about how different it is for each person. But think about all the people out there that give advice and recommendations about working with our kids. Our kids are so different as individuals, that a one-size-fits-all approach just isn’t realistic. The same goes for therapy. But probably the biggest factor to come into play is the school system. I’ve run into this myself with my son’s school, where they don’t recognize some of his challenges as being related to autism.

 

My hope is that this series will be seen by at least a few people who have the ability to make a difference in how they work with our children. Please share it with friends and family, but especially with educators or professionals that you feel would benefit from seeing how unique two children on the spectrum truly are.

 

This post is part 1 of a 10-part series. I will be writing about Connor, and my friend Jen Bush, from Anybody Want A Peanut, will be writing about her son, Moe. We’ll cover the following topics:

 

communication

social skills

food/feeding issues

sensory

independent skills

school

behaviors

medication

wrap-up/thoughts for the future

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I’ll be running the series on Tuesdays and Thursdays (unless I somehow get off-track because, autism), beginning the Tuesday following Thanksgiving, December 2nd. Please join us in learning about and celebrating the unique differences of two children on one spectrum.

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Candlelight Vigil for Autistic Children Who Have Lost Their Lives After Wandering

Today the autism community has decided to honor those children that have lost their lives after wandering.

 

 

This event is a virtual candlelight vigil to remember and respect the lives of autistic children who have died after an elopement.

The Kennedy Krieger Institute reported in a 2011 study that up to 48% of all children with autism will engage in wandering behavior or “elopement,” which is defined as the tendency to leave a non life threatening space and enter into a potentially dangerous one, and is a rate 4 times higher than their neurotypical siblings.

The Krieger Institute also reported that “35% of families with children who elope report their children are “never” or “rarely” able to communicate their name, address, or phone number by any means.”

In 2012, the National Autism Association reported that “accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement.”

This vigil is being organized to spread awareness of the very real issue of wandering behavior in autistic children and the unspeakable tragedies that can, and have occurred as a result.

Please join us in respectful remembrance of the children who have died.

Information compiled by the organizer, Jill Smo, of Yeah. Good Times.

Kaitlin	Bacile
Au-Juna	Banks-Taylor		age 9
Ryan	Barrett
Christian	Baucom		age 6
Jason	Baucom
Adam	Benhamama
Owen	Black		age 7
Aiden	Bower		age 4
Ashley	Brock
Noah	Burke
Carolyne	Burns
Dena	Burns		age 6
John	Burton Jr.		age 7
Colum	Canning
Kaymania	Catt		age 5
Alex	Christopher	6/3/2005
Zachary	Clark
Jeremiah	Conn		age 6
Holden	Cottingham	2013
Taariq	Cross		age 7
Christian	Dejons
James	Delorey
David	DeSantiago		age 11
Devonte	Dye		age 5
Tatiana	Eiland-Clinton		age 3
Devine	Farrier
Justin	Gore Jr.
Darryl	Gosein
Anthony	Guerra		age 9
Tristian	Guffey
Liam	Hamilton		age 7
Elizabeth	Hathaway		age 10
Savannah	Hauser
Benjy	Heil
Jack	Hensley
Emily	Hope
Drew	Howell		age 2
Tristin	Jeras	7/26/2012
Aiden	Johnson
Marquail	Johnson		age 8
Jackson	Kastner		age 4
Kesia	Kearse
Nathan	Kinderdine
Michael	Kingsbury		age 7
Adlai	Kugblenu
Anthony	Kuznia		age 11
Bernard	Latimore
Aiden	Lawson		age 3
Kieran	le Couteur
Erik	Lippmann
Alexie	Loper		age 4
Mikaela	Lynch	5/15/2013
Charlie	Manley		age 16
Savannah	Martin	2/20/2011
Donivan	Martin		age 16
Savannah	Martin		age 7
Jared	McGuire
Mason	Medlam
Logan	Mitcheltree
Christopher	Morrison		age 5
Blake	Murrell		age 4
Alyvia	Navarro		age 3
Avonte	Oquendo		age 14
Dominic	Overton
Ariana	Pivacheck		age 9
Evan	Reed	2012
Hannah	Ross		age 7
Blake	Ryan	4/19/2011	age 4
Christina	Sankey		age 29
Luke	Selwyn
Nicholas	Shaffer		age 12
Kaleb	Shavers		age 6
Kadeem	Shillingford		age 15
Jonah	Smith
Julian	Stacey			New Zealand
Aaron	Steele
Travis	Stratton	3/1/2014	age 4
Kaliya	Sullivan
Sean	Taglione	1/29/2012	age 12
Desmond	Thomas
Kristina	Vlassenko		age 10
Christopher	Wakeman		age 23
Amarie	Walker		age 4
Skyler	Wayne
Freddie	Williams		age 13
Davin	Williams		age 15
NNR			age 5	Bradenton, FL
NNR			age 11	Stafford, VA
NNR			age 12	Houston, TX

90 children. These are the names we were able to compile on short notice, and is in no way comprehensive. The listings at the end with the initials NNR are children whose names weren’t released to the media.

 

Today is about remembrance. Please use the above photo as your social media avatar and share this day with us. Let today be the day that we stand together and quietly remember those we have lost.

Autism Acceptance Must Begin Within the Autism Community

In case you’ve been living on a deserted island and didn’t know, April is coming and it’s kind of a big deal because it’s AUTISM ACCEPTANCE MONTH.

 

Take the current number of inspirational autism memes and multiply them times 10 to the 8^th power. Puzzle pieces will clutter your Facebook feed like rainbow glitter, and people will tell you how important it is to buy blue light bulbs.

 

I’m the first to admit that I lean heavily toward the curmudgeonly side, so all this hoopla only serves to raise my stabby meter to defcon 1.

 

The ugly truth is that all this awareness propaganda is pointless when we can’t even accept people within our own community. There are more points of contention than I can even keep up with. Here are just a few:

 

• You should not strive to alter your child’s autistic behavior AT ALL

• You should help your child learn to be part of this world and teach them functional behavior (which may alter their autistic behavior)

• You should ONLY paint autism as a positive attribute

• You should not paint autism as just a happy, wonderful state of being when there are real detriments for some on the spectrum

• You should treat autistic people equally

• You should monitor what you say to an autistic person

• If someone doesn’t like their autism, it’s because of someone else’s influence (evil parents or doctors)

• Autism is different for each person

• If an autistic person is aggressive it’s not because of the autism, it’s because they’re being abused or have “other” issues

• Autistic children are not “drawn to water”

• Autistic children often enjoy the sensory input of water play

• We should devote funding to research to find a cure for autism

• Wanting to cure autism is eugenics

• ABA therapy is a proven intervention that helps children with autism

• ABA therapy is harmful and abusive

 

It seems unreasonable to demand the acceptance of the general public when we cannot even accept differing viewpoints and opinions within our own community. While many choose to see autism as a positive part of themselves, something to be proud of, others who may be more affected sometimes do not appreciate the challenges that autism creates. Yet to voice that within the community will garner a swift and immediate response from legions of angry autistic villagers who will use words like “bigot” to try and eradicate any negative statements about autism. Ironic much?

 

Frustrated and discouraged parents that are coping with an aggressive child will seek out support in the community, but will often find themselves being accused of causing the aggression by being abusive in some way. Rather than seeking to empathize with these families and bring them into the fold with kind and sincere advice and insight, they’re more often than not driven away by unfounded accusations and mockery. And once that happens, you will never get them back.

 

Time and again I ask other autism families whether they think we can build a community where each person is accepted wherever they are on their journey, and whether we agree with their feelings or not. The answer I always get back is “That would be wonderful if it could be that way, but so far it hasn’t happened.”

Isn’t the entire point of awareness to educate people about how different autism is for each person? While one person embraces their autism, another may curse it. And that should be okay. Awareness isn’t about policing people’s feelings, it’s about sharing information. If another parent wants a cure for autism, it doesn’t really bother me. I don’t happen to believe we will find a cure, but if that’s what they wish for, then let them. Their hope to see an end to autism is really a hope to see suffering and pain erased from their own child. That’s where they are on their journey. It’s not my job, it’s not YOUR job, to make them wrong for feeling that way.

 

Another parent may swear by the benefits of a specific vitamin regimen. I don’t happen to buy into it, but let them try. As long as what they’re doing isn’t harmful to their child (bleach enemas, chelation, etc.), then let them give them vitamins. Who cares?

A parent said to me one day that she was at the end of her rope and “hated and despised autism.” I was glad she said it to me, rather than in another forum where she would likely be verbally flogged. It takes a little insight to not react with judgment. What this mother was really saying, underneath it all, was that her child and family were struggling and that she’d gladly take a knife and cut out her own heart to take away her child’s crying, screaming, and mental anguish. There’s something to being a parent, something the know-it-all, 20-year-old me thought she understood up until I actually had my own child. To be a parent means that when your child is hurting and you are powerless to make the hurt stop, you want to destroy that “thing” that is causing the hurt. So when the parent of a young autistic child talks about hating autism or wanting a cure, they are talking about wanting to do anything they can to take away the hurt and pain of their child. It’s normal to feel that way. It’s okay to feel that way. But when those parents are met with unkind words, judgment, and accusations, you’ve only served to kick them when they’re at their most vulnerable, lowest point.

 

As I write this, I realize this community may well be doomed. The hatred and anger is taking up space…the space we should reserve for people that may not agree with us. Whether you love or hate autism, we all want to advocate for acceptance and support. But we only leave room for those that adhere to a rigid mindset of prescribed propaganda.

 

As it stands, most people only know the basics about autism unless they are directly affected by it in their own lives. How can I blame people for not knowing, when the messages coming out of the community are so mixed and confused and filled with volatility? I wouldn’t pay much attention to us either.

 

In short, April can just suck it. It’s just another month of slick marketing campaigns that camouflage the all-out bloodbath going on out back. There won’t be any blue light bulbs or inspirational t-shirts over here. But, as always, if you or someone you know needs someone to talk to because you are in a bad place and feel buried under the weight of autism, please contact me. I will listen. I will not judge you. And I promise I will try and offer you whatever help or resources I can. You can email me at nuttydingo (at) gmail (dot) com.

Autism Speaks Does Not Speak For Us – THIS is Autism

This is dedicated to Autism Speaks co-founder, Suzanne Wright, in response to her call for action today. I will not provide the link to the post.

My son, Connor, is 8-years-old. He gets dressed, brushes his teeth, and ties his shoes independently.

THIS IS AUTISM

Connor tells us he loves us every single day, and he looks us in the eyes when he does it.

THIS IS AUTISM

Connor played on a soccer team last spring. He also loves to ride his bike, without training wheels.

THIS IS AUTISM

Connor sleeps through the night (mostly), is toilet-trained, and asks questions about everything he can think of.

THIS IS AUTISM

Connor loves to tell jokes and do silly dances. He lives to make people laugh.

THIS IS AUTISM

Connor’s teacher sent me this in an email yesterday: “I was really proud of him at the end of the day when he witnessed another student being unkind, he told the student he should apologize. I was like WHOA!”

THIS IS AUTISM

Connor saw some brief news footage the other day of the typhoon in the Philippines. He asked if it was really happening, and I told him it was. Then he asked what we could do to help those people.

THIS IS AUTISM

Connor loves to help people. He holds doors open for others whenever he enters a building. He has said he’d like to be a police officer someday.

THIS IS AUTISM

This is autism.

You don’t speak for us. Only we can speak for ourselves, so hear my words: Autism is not a tragedy. The only tragedy here is the way you perpetuate a negative stereotype about autism.

We do NOT support Autism Speaks or their portrayal of autistic individuals.

Maybe it’s time you learned what autism really is.

Social Media’s Unintentional Effect on Intellectual Property; or “Bitches Be Stealin’ Shit”

Social media has been a boon for aspiring writers. What better way to get yourself marketed than by utilizing Facebook, Twitter, and even Pinterest? Unfortunately, since anyone can use social media, there are many people that are not sophisticated about a little thing called intellectual property.

According to the United States Patent and Trademark Office, “A Copyright is a form of protection provided to the authors of ‘original works of authorship’ including literary, dramatic, musical, artistic, and certain other intellectual works, both published and unpublished. The 1976 Copyright Act generally gives the owner of copyright the exclusive right to reproduce the copyrighted work, to prepare derivative works, to distribute copies or phone records of the copyrighted work, to perform the copyrighted work publicly, or to display the copyrighted work publicly.”

But why am I telling you this?

Well, it seems there are a vast number of Facebook sites that are created with the sole purpose of posting inspirational pictures and quotes about disabilities. That’s really nice, right? It would seem so, but it’s not so nice when these sites put up a majority of pictures and quotes that they’ve taken from other pages. Now, it’s one thing to hit that little “share” button you see at the bottom of a post, but it’s another thing entirely to right-click, save to your computer or device, navigate to your own FB page, and then upload that image. Whether it has the owner’s name on it or not, it doesn’t matter. It’s still considered theft of intellectual property.

You can even find Facebook’s policies about intellectual property by doing a simple search. I did it for you:

Sharing Your Content and Information
 You own all of the content and information you post on Facebook, and you can control how it is shared through your privacy and application settings. In addition:

1. For content that is covered by intellectual property rights, like photos and videos (IP content), you specifically give us the following permission, subject to your privacy and application settings: you grant us a non-exclusive, transferable, sub-licensable, royalty-free, worldwide license to use any IP content that you post on or in connection with Facebook (IP License). This IP License ends when you delete your IP content or your account unless your content has been shared with others, and they have not deleted it.

2. When you delete IP content, it is deleted in a manner similar to emptying the recycle bin on a computer. However, you understand that removed content may persist in backup copies for a reasonable period of time (but will not be available to others).

3. When you use an application, the application may ask for your permission to access your content and information as well as content and information that others have shared with you. We require applications to respect your privacy, and your agreement with that application will control how the application can use, store, and transfer that content and information. (To learn more about Platform, including how you can control what information other people may share with applications, read our Data Use Policy and Platform Page.)

4. When you publish content or information using the Public setting, it means that you are allowing everyone, including people off of Facebook, to access and use that information, and to associate it with you (i.e., your name and profile picture).

5. We always appreciate your feedback or other suggestions about Facebook, but you understand that we may use them without any obligation to compensate you for them (just as you have no obligation to offer them).

I underlined some key points up there, in case you don’t want to read all that. Basically, you can go right ahead and use my words and pictures, but you are required to associate it with me by using my name and profile picture. You can’t just upload it on your page like it’s yours.

Now I wouldn’t normally write about such a tedious topic but, you see, my stuff keeps getting stolen! Oh sure, you might say I should be flattered. But if someone took something that you made, you probably wouldn’t feel flattered.

But what about the children, Flannery? What about the joy and love that we’re spreading?

Listen, that crap doesn’t float here. I don’t care if you’re saving baby unicorns by waving around these words and pictures you take, it’s still a violation of Facebook policy and intellectual property rights.

Wait. You’re going to tell me that your PHONE doesn’t have the share button? So basically what you’re telling me is that you have no self control, and are not responsible for your own actions. You simply could not wait until you got in front of a computer because that picture HAD to be made public, IMMEDIATELY, for the good of all mankind? Nope, sorry. That’s a pathetic excuse.

You cannot simply make an ignorance plea, especially if your entire FB feed is FULL of words and pics you’ve downloaded from someone else.

But I don’t want you to think I don’t care about the children. Or the baby unicorns. I do, I really, REALLY do. So as a service to children and unicorns and even baby kittens, I will go ahead and alert you to some of the biggest offenders on FB pages. You might not see any of my stuff, because I’ve reported them and demanded they be taken down and shared properly (or they have repeatedly taken work from other writers I know). But YOU, dear reader, may want to keep a vigilant eye on these dishonest, unethical, sorry excuses for spreading goodness and glitter losers.

And here you have it, the List of Shame (I will not link to them because I’m not interested in driving traffic to their pages):

Autism Different Not Less

Autism Spectrum Disorder Through My Eyes

Stop Discrimination Against Special Needs

Single Mothers Who Have Children With Autism

Asperger Syndrome Awareness

We are all interested in spreading awareness and understanding of autism. But our words and images are meant to be shared properly, not taken. Whether it’s in the name of awareness or not, they are still works that we have created. But when I or others have contacted these pages and asked for images to be taken down or shared properly and we’re told that they’re doing nothing wrong, and we’re just big meanies, then it’s a problem.

If you encounter this issue with your own work, my recommendation is that you first message the page and ask them to remove it and share properly. If they do not, or they try and engage you in lengthy discussions about why they should be able to do whatever they want, then you can report them to FB and request that they have the images removed.

Oy. Anyone remember when the biggest issue was with people plagiarizing from books? You know, those bulky things with lots of pages and words, and sometimes illustrations…

A Post Worth Revisiting

One of the most powerful things I’ve ever read about being the parent of an autistic child, was a post by Kyra Anderson.  So powerful, I printed it and it hangs above my desk so that when I’m having trouble getting my thoughts out, I can look at it and be reminded of the power of words.

Here’s the link to Kyra’s post, I hope you take a moment to read it.

Autism Awareness, So What?

April is Autism Awareness Month.

It’s not that I don’t care.  And it’s not about whether I do or do not support or agree with Autism Speaks.  I’m aware of autism every day.  And I tend to believe that most people are already aware of autism.  Awareness doesn’t mean anything.  People are aware of different races and religions, they’re aware of Down Syndrome and Learning Disabilities and Autism.  Being aware doesn’t give people the ability to be kind, understanding or even particularly helpful.  Opinion and perception are ingrained at an early age.

If we all really wanted to come together and make a difference, we would be supporting autism education.  If we start educating today’s children at a young age about  people who are different, and about why being different is okay, then we would begin making a difference for tomorrow.

Most large companies provide diversity training to their staff on an annual basis.  Now, we know this is mostly so they can avoid lawsuits, but there’s something to be learned from this model.  If a specific curriculum was developed for each grade level, beginning in Kindergarten, we would be turning out young adults that were armed with knowledge and understanding of differences.  If each year children learned not just about cultural differences (Does your school have a cultural diversity night?  Ours does.), but cognitive differences as well, the impact would not just be about what kind of adults they turn out to be, but it would also have an immediate impact on the rampant issues of bullying in our schools.

Education.  But to be effective, it would have to be mandatory and implemented in every school, in every city and state.  Now that would be something I could get behind.  That would be something the autism community could actually agree upon and support.

 

1 in 88 children.  That’s a lot of children to not know about.  Blue light bulbs don’t teach others about sensory challenges.  T-shirts don’t help children understand communication impairments.  Awareness doesn’t stop teasing, bullying, and shunning.

You could accuse me of being selfish, and that might be true.  This is personal.  I want other children to understand why Connor sometimes repeats lines from TV shows and movies.  I want children to understand why Connor likes to spin.  I want teachers to understand that every single action stems not from a “typical” thought, but an autistic thought, because he is autistic every second of every day and, therefore, every action comes from being autistic.  And I want the school to understand why I push them so hard to use a positive behavioral approach, rather than a punitive approach.

I want this for every single one of our children.  I want this for us parents, so we can have just a tiny bit more hope when we send our children off to school.

And I want our government and our educational system to understand that there is value in autism.  There is hope.  If only we cared enough to educate others, to educate our children.

It’s something we should not ask for, but demand.  We should demand that every child is educated about autism.  Because with education comes understanding, and with understanding comes acceptance.

Please share this post if you agree.