Tomorrow Is Too Long to Wait for Inclusion

The Real End Game for People on the Autism Spectrum

a chess board with the light pieces blurry in the foreground and the dark pieces focused in the background

By Jess Wilson

A Drug to Improve Social Skills

The big, bold headline in USA Today read, Experimental Drug Gives Hope For Rare Disease, Autism. The sub-heading read Doctors Hope Abaclofen Will Also Improve Socialization Skills In People With Autism.

It went on to describe the success of STX209, or Arbaclofen, in early trials with a small number of patients with Fragile X. The success was most notable in improving social withdrawal in the trial group. Since, according to the article, nearly a third of the population diagnosed with Fragile X also have autism, researchers have high hopes regarding Arbaclofen’s implications for the broader autistic population.

The research is exciting. To call it novel and ground-breaking are not exaggerations. This is big, new, hopeful stuff. But like a lot of exciting, novel, ground-breaking, big, new, hopeful stuff, it comes with questions that need to be answered. The biggest of which, for me, is Is it going to be good for our kids in the long run?

When I read the article, I stopped short at this:

“If an intervention makes progress in helping someone navigate the world on their own terms, that’s good news,” [Ari] Ne’eman says. “But let’s remember that “looking and acting normal” aren’t necessarily the only or best way to do that. … It’s important that we have a meaningful conversation about whether or not we’re focusing on the outcomes that matter for making autistic people happy, instead of focusing on making us appear more non-autistic.”

Hopefully, Arbaclofen does the former. Hopefully, it helps people like my daughter navigate the world more easily ON HER OWN TERMS. Hopefully, it simply mitigates some of her toughest challenges and allows her to still feel as though she is fundamentally who she is. But before we run headlong into embracing any of these revolutionary drugs or ground-breaking therapies, I think we have a responsibility to ask those questions. To, as Ari’s quote implies to me, engage in a meaningful dialogue about the cost to our kids. Because, like it or not, there’s always a cost.

Is Repetitive Behavior Really Hamful?

One of the ‘core symptoms of autism’ that is mentioned in the article and that many drugs seek to address is repetitive behavior. I have to wonder, for whom are we addressing repetitive behavior? Is it really harmful to autistics? Is finger flicking or rocking or otherwise stimming really an impediment to a successful life? Or are they really problems more for US – the NTs who become uneasy because we have no idea how to react to someone who doesn’t fit the mold of what makes US comfortable? And most importantly from my perspective, what happens to the impulse to stim when we quell the behavior that it results in? Does it disappear? Blow off into the wind? Break down into waste and find its way out of the body?

Stimming serves a purpose. All behavior does. Ask someone autistic. I have. And the answers I’ve gotten are “Calming. Soothing. Shutting out an overwhelming world. Focusing. Freeing. Comforting. “

So take away the vehicle for all of that – for calming, soothing, shutting out an overwhelming world, focusing, freeing, comforting – and what do you leave in its place? Without the behavior that served those purposes, how does a person who might very well live in a constant state of high alert, who is unable to filter the constant sensory barrage of this life, for whom there is no natural hierarchy of input, supposed to compensate for all of that overwhelm? What tools do you leave them in return for the one that you’ve taken away? Or do you simply take it away because it’s not normal and not normal is harmful?

I wrote the above and put it into my Drafts file the day that I first read the article. And then I walked away. It was too big to process in one sitting. I needed to sit with it awhile, to chew on it and to think through its huge and frankly, kinda scary implications. I had to reach a point where I was ready to say out loud, Yes, there was a time, early on, before I knew anything different, that all I wanted was for my kid to look normal. Because looking normal meant acting normal which meant being accepted by society which meant an easier life. Right? Isn’t that the formula? Isn’t that how it works? Change behavior, change a life. Right?

Life Is Not Formulaic

And then I had to figure out how to say No, that’s not it. This isn’t math; it’s life and life is messy and sticky and doesn’t lend itself to nice, neat equations and pretty little formulas. That suppressing who we are without a valid and comfortable and AUTHENTIC means to express what we NEED to express can be far more dangerous than not fitting in. That being taught to pass for something that you’re not and succeeding at it may mean success on the outside but what the hell does it mean for the inside? That being taught that what you are is not okay and that you, therefore, need to pass as something that you’re not can be deadly. That self-esteem and confidence and self-love and the deepest of personal truths are what are on the line. That I’m not being overly dramatic in taking it there. That I know that because I’ve read so many blog posts and had so many conversations with autistic adults who teetered on the edges at various points in their lives – who literally contemplated suicide, or tried, because the message that they got – whether it was the one that was intended to be delivered or not – was that who they are was not okay.

I walk the line here. It’s not a free-for-all. There ARE behaviors that are not okay. We live in a civilized society. There are some reasonable expectations within that structure that we, as participants in it must learn to meet. That we won’t hurt others. That we will respect others’ privacy and safety and dignity just as we need and expect them to respect ours. There are skills that are necessary to enable us to interact with others, to make friends if we so desire, to find and keep employment. They are important to learn.

And so too, life is absolutely, positively, without question, easier when you have the ability to make yourself understood in some fashion. And it’s sure as hell easiest when that fashion is the same as everyone else’s.

So by no means do I mean to imply that I think that we should not teach our autistic kids to play by society’s rules just as we do with any kid.

But for me, the underlying questions loom large in every single attempt I make to give my child the tools to conform, to communicate, to participate.

At what cost?

Is it still going to be good for her when she’s no longer a kid?

When she looks back will she say that I gave her the tools to succeed as she was or will she ask why I seemed so intent on changing who she was? 

How Far Are We Willing to Go to Change Behavior?

Yesterday, with this post and all of its big, scary questions still safely tucked away in my Drafts folder, I read an article about California’s ban on Gay Conversion Therapy for children under 18. For the blissfully uninitiated, GCT is the highly controversial and nearly universally condemned practice of attempting to change a person’s sexual orientation through some twisted version of psychotherapy. There is overwhelming evidence that the practice tends far more often to result in depression and suicidal ideation than heterosexualization (no, that’s not a word, but it’s as absurd as the whole concept.)

Just for context, let’s play a little game. Are you straight? If so, do you think that if I gave you aversion therapy – you know, like an electric shock every time I showed you a picture of heterosexual sex – that it might turn you gay? How about if I inundated you with photos of homosexual acts and rewarded you for showing arousal? No? What if I simply told you that your heterosexual feelings were wrong. That they didn’t conform (or that, if not society, then God, had a problem with you acting on them). That you could still BE gay, but you couldn’t ACT gay anymore. So what would happen then?

Well, according to story after story from those who have participated in this practice, what usually happens is that you either fail miserably at being what you’re not — OR — you ‘succeed’ and manage to live the life of someone you’re not. Which leads us back to the ‘overwhelming evidence that such therapy tends far more often to result in depression and suicidal ideation than heterosexualization.’

So what if you’re autistic? And I tell you that it’s okay to BE autistic but not to ACT autistic? Then what?

Is homosexual conversion therapy a perfect parallel to administering drugs for social impairments? God, no. Really, really far from it obviously. But do I think there’s a common lesson in them? Well, yeah, I do. Because when I read the second article, I found myself thinking immediately of the first.

So here I am, dragging this post kicking and screaming from the Drafts folder and out into the light of day.

I don’t have answers. I never claim to. I just have questions that I think we need to remember to ask.

I’ll end with this – based on my limited reading about Arbaclofen, I lean toward thinking that it’s likely a win. That it will indeed not just offer some relief to those who struggle to communicate, but at the same time hopefully give researchers vital information on how the process all works. But long before I’d give it to my own child, I’d have to do a LOT more research. And then I’d have to ask the big questions.

At what cost? 

And

What’s the REAL end game?

Thank you to Ari for making me think, forcing me to examine my approach and keeping me honest about what matters most.

Editor’s Note: This article was originally published in 2012 and has been updated with a new feature images and formatting.

Thank you to Jess Wilson of a diary of a mom for giving us permission to reblog this. Here is a link to the original article.

Inclusion Spotlight #007: Mark Deaf McGuire

Mark Deaf McGuire

Deaf and hard of hearing advocate Mark McGuire offers insights based on 40-plus years of life experiences.

Thinking inclusive requires different thoughts depending on the disability. Just compare say an inclusive atmosphere for someone autistic and an individual with cerebral palsy. Each involves separate steps to achieve the same result, inclusion. However, at least one essential similarity applies to all disabilities. An open mind! In said spirit, I on Think Inclusive’s behalf happily dust off our spotlight segment to feature deaf advocate Mark McGuire.

No, not Mark McGuire the former home run hitting Major League Baseball player. Rather I recently interviewed the self-branded Mark Deaf McGuire. Born deaf, McGuire grew to become a passionate advocate for his community. McGuire’s life experiences the past 40-plus years make him an ideal candidate to learn from. Our discussion covered harmful stereotypes, accessibility issues in the deaf community, and more. The following contains our conversation’s highlights. Enjoy!

The most damaging misconceptions/stereotypes out there about the deaf/hard of hearing community:

“In my opinion, the most damaging misconception or stereotype in any community is that everyone is equal. The reality is that no one is equal. We are all unique individuals with our own human conditions regardless of whether we were born with these conditions or not. This applies to the language as well as the method of communication we use as individuals. As a whole community, deaf and hard of hearing people share similar communication issues. However, this does not mean as a whole community that all deaf and hard of hearing people uses the same communication methods. Therefore, there is no one-size-fits-all solution. In other words, not all deaf and hard of hearing people know sign language.”

Why someone deaf or hard of hearing would not learn sign language:

“Why do some people not learn more than one language or one method is a good question I often ask. The answers are as diverse as every individual on the planet.

For example, I know how to read and write in English but not Japanese. I can speak but not hear English. I can sign and watch in American Sign Language (ASL) but not Mexican Sign Language (LSM).  Nor do I know how to read or type in Braille.

My experience has shown me that it seems to be the lack of inclusion that leads to a lack of education. A lack of education means we are not able to make the choice to learn more than one language or one method of communication.

There are many (reasons) but two common reasons for this of which both have a ripple effect on all community levels from a nation as a whole to within one’s own family. Country values are one. There are countries where sign language is an official language therefore more support. Other countries, including the USA, which have not recognized sign language as an official language often receive less support.

Secondly there are educational values. Different educational systems have their own idea of what is the right way to educate everyone. As a result, sign language may or may not be part of the program.”

How social media benefits the deaf and hard of hearing community:

“My experience has shown me that there are still barriers on social networks to deal with depending on what’s causing the barrier. However, the number one benefit that seems to be shared among the deaf and hard of hearing community is that they no longer have an audiological barrier to prevent them from reaching out.”

What those outside the deaf and hard of hearing community can do online to increase accessibility:

“What can one do online, regardless of whether it’s on social networks or websites in any type of medium? The answer is as old as the first word that was immortalized forever in stone.

I’m not sure which came first, cave paintings or the rock etchings but the concept and context were “written” down…

Write it down. If you are doing any type of audio like a podcast or video, provide a transcript of every sound being produced on the podcast, whether it is blah blah blah or a burp.

This also goes the other way for sign language. It has to be written down for those who do not know sign language or see it. And yes, that includes writing down a fart sign. What can I tell you? It’s a human condition. If you gotta let it out, let it out.”

Steps those outside the deaf and hard of hearing community can take to ensure pleasant and inclusive interactions in real life:

“The most positive experiences I have enjoyed as a deaf person has been a result of a conscious effort to ensure I am part of the conversation.

While unintentional, it is often within in a group discussion where everyone is signing or talking where the effort falls short.

However, it is the individual(s) within that group that shift from the group attention to a more personalized attention where I often find the biggest degree of success.

It may be a ‘side’ conversation bringing me up to speed ‘they are just blah blah blah’, asking me a question ‘we are trying to figure out…..?’, or even a random conversation ‘did you see that ….?’

The ones who have stood out the most often would make direct ‘personal’ statement to the group by placing themselves directly in front of me. They know the value of having me as part of the conversation and want to make sure everyone knows this.

Even fluent sign language users often make an effort to make sure I am able to follow the signing conversation.

My ASL skills are commendable and I can hold my own. However, my skills are nowhere near the same league as some of the amazing signers I have been fortunate to know.

It is a very positive feeling when someone does this whether it’s signing, talking, or writing, to ensure you know what is going on. There’s no harm or shame in making such an effort.”

To Recap

Keeping an open mind proves vital to establishing an inclusive setting. Such mindset best positions you to solve any possible accessibility barriers. In regards to the deaf and hard of hearing community advocate Mark Deaf McGuire offered some guidelines to follow. First, do not assume everyone in the deaf and hard of hearing community knows sign language. When creating online content, supply a written format. For instance, post a complete transcript with each podcast episode. Amidst real life interactions take conscious action to confirm the person successfully follows along with the conversation.

For more from McGuire visit his website http:/markdeafmcguire.com. Connect to him too on Twitter and Facebook. Perchance you possess advice to add, leave a comment below. Want to see Think Inclusive explore what accessibility looks like for a different disability group? Again leave a comment with your suggestion.

You Just Can’t Take Me Anywhere!

can't take me anywhere

My parents used to say, “We just can’t take you anywhere,” meaning I could not be trusted not to cause a “scene” – and for parents who valued appearances in society as they did, this was quite the denouncement.

It has only been four months since I emerged from extreme isolation and denial of my social difficulties – the way I dealt with it was by NOT dealing with it: staying isolated and alone, the way I like it. I honestly prefer to be alone, and, until recently assumed most autistics were like me.

NOT so. Even some of the most severely impacted are not as misanthropic as I; in fact, they are surprisingly affectionate. I am beginning to consider perhaps my hermit-like qualities are not even related to autism at all. However, the fact remains – I am still as averse to being with other people for more than an hour at a time, maximum. I simply do not LIKE them when I am required to be in their presence. They irritate me supremely and my hostility and aggression, when irritated, is still not completely under my control. I no longer profess to “hate” them as I did vehemently when younger (and before Buddhist training), but still resent any occasion where I must interact face to face, unless it is a structured activity with clear rules, like sporting activities or firefighting. One on one contact is preferable, as there are not as many variables to attend to, but I prefer digital and online communication – I express myself best there and do not get as frustrated, as I control the interaction and can step away when necessary when getting frustrated.

As a child and adult (up until 1999, when my last documented episode of public aggression occurred), I was extremely aggressive, and, for this reason, was placed in very restrictive settings where they could physically restrain me. I saw no reason not to be so violent until multiple arrests and beatings from the police forced me to re-evaluate my public lashing out. At that time, I discovered Buddhism and its practice of non-violence and rose to the challenge of changing my behavior. I was successful; however, my primary strategy was to limit my exposure to provocative situations, which meant not venturing into public except when I most others are not present- i.e., never being out in rush hour, going to an all – night supermarket at 4 AM, etc. This did not completely curb my physical and verbal assaultiveness – as recently as a few weeks ago I hit my support person as he was attempting to restrain me from engaging in another obnoxious behavior – disruptive yelling late at night. The difference is now I feel remorse and truly do not want to be this way.

Here is an article on aggression in ASD: Aggression in autism spectrum disorder: presentation and treatment options

The article above spends much time discussing antipsychotic medications, which have been tried on me, to no avail. First off, I am extremely sensitive to the neurological side effects such as Parkinsonianism/Extra Pyramidal Symptoms. My diaphragm seizes up, and I cannot move the muscles needed to breathe. This makes antipsychotics potentially deadly for me. They also did not ameliorate any of my behavior issues, and since I do not have a thought disorder (schizophrenia), they are useless and harmful for me. Ritalin and the stimulants, which I was on for many years, also do not help in the long run. Neither do any of the other classes of drugs and, believe me, I have been on them all. Buddhist practice and the willingness to change are the only things which have worked for me, and for that I am grateful.

Thank you, Autistry Studios, for helping me seek resources which may help with self-control, like this one:

aggression2

It may seem simplistic, but I have never attempted anything like this. Only the challenge of following the Buddhist precepts has inspired me to try. When others were trying to control me, I resisted strenuously -and my will is incredibly strong.

I am doing better regarding aggression, but have a long way to go – had I not ventured out on those two days I may still be under the illusion I now have it all under control.

On the bright side – I no longer fight with strangers – nearly all aggression is verbal now, and even that is infrequent as I know my triggers and usually avoid them. I also did not wear my weighted vest, which DOES help calm me -and both days I FORGOT MY SQUISHIES! It is remarkable how much these items calm me. It is also remarkable how often I forget this.

As far as lashing out at my support guy – I AM sorry, and even that episode was minor.

Photo Credit: Ben Seidelman/Flickr

Source:  Just Can’t Take Me Anywhere! – Autistry And Me

I am Christian Espicha, an adult woman with autism. Though diagnosed as a young child with autism, partly because I also possess a genius IQ, I did not receive appropriate services until recently when I became a client at Autistry Studios in San Rafael, CA. Recently, at age 45, I was the oldest member of the Humboldt County Structure Firefighting Academy to graduate. Also, I completed EMT training and worked as a firefighter/EMT in Trinity County, California. I performed, with my fellow firefighters, mountain rescues, and recoveries assisted the Forest Service with fires in the Trinity National Forest and assisted with water rescues/recoveries on the Trinity River. I am also a writer and artist. See my website at https://www.autistryandme.wordpress.com and autistryandme on Facebook and follow me @Screenshotaut on Twitter.

 

My Life with Autism: A Speech by Jordan White

jordan white; young white male wearing glasses sitting in front of a computer with the Kennesaw State University logo on it


My Life with Autism – A Speech by Jordan White… by sampsoninc916

A friend of mine spoke to our school staff (Kincaid Elementary School – Marietta, GA) about his life with autism and being included in general education during Exceptional Children Week. This video was from April 2011. The complete transcript is provided below.

Since the publication of this video, Jordan has graduated from Kennesaw State University (KSU) with a degree in computer science and is currently employed in the field of technology. You can read more about Jordan from the article “No Boundaries” published on the KSU website.

My Life with Autism – A Speech by Jordan White and Family

Tim: I just want to echo what Jodie said, yesterday was awesome the assembly was mind blowing so that was really, really a special time. Today we have Jordan along with David and Patty White they are our special quest David is friend of mine and we just started talking on day about Jordan and I was like I really want our staff to hear his story. So I thought the best kind of way first of all I want Jordan to know our staff is super nice and they’re going to smile and they are going to be completely attentive to what you are about to say you know so no worries we are all friends here. And also how I wanted to set it up I kind of thought David and Patty can kind of ask Jordan some questions his experience growing up in Cobb County schools kind of his journey towards where he is now Tennessee State University and so we’ll kind of start with that and if I feel like you know I want to add some questions I can and then if we have time we’ll open up for questions for everyone else. So why don’t David and Patty why don’t you, you know the beginning I suppose.

Patty: Introduce yourself Jordan.

Jordan: Hello

Audience: Hi

Jordan: My name is Jordan White Noel White and I was born on September 16th 1991 in Orlando Florida and I was born autistic, when my parents had me they never really knew I was autistic until I turned 3 or 2 years old and the doctors soon found out I was autistic and had trouble learning to speak learn how to socialise learning as well as learning how to be the best I could possibly be and kind of way for me no one exactly no one really understood autism and then again no one understands it today. So that’s the best choice for them to put me in a place where in a place where regular students that if I learned how to be like regular students I might be able to have a chance to succeed so they put me in a preschool and I choked and so this include dong other activities other students did, yeah I sometimes had problems in that class like the fact that I really wanted to make precision cuts on photographs making trying to write that well sometimes even my dad would come into the class room and show me some pictures so I could identify them and he actually, my mom and dad too their time to get a bunch of therapists to really help me learn so I would be prepared for the next step in the school and I think there was flash cards lean how to there was an audio test where I had to listen to a tape and stuff and I pointed to this what the sound sounds like where the sound came from  and it kind of evolve in those days we lived in  Alabama Henson, Alabama and so how for some reason we decided to move to a different city in Alabama so we moved to Huntsville. In Huntsville I chose a school well mom and dad chose a school, they chose a school the Tower of Light school. One time in one of those classes I looked at a year book and found that the school was built in the 50’s and I had no connect with that era so anyway they took they gave me classes to go to and basically it’s not like periods but like 1st period, 2nd period, 3rd period that school what we had was one class and sometimes you would walk in a line or go to another class which taught specific subjects and they would dismiss me from dismiss me at 5:30 and we would kind of walk in line and we would go out to the parking lot, the carpool where mom was waiting. Well my first classroom from kindergarten was with Miss Pool and she was sort of realized that I was autistic so the best thing she could possible do was to take some advice from my parents and they worked out some and I think they must have worked out a period of system where I a green light for good behaviour and red light for bad behaviour and basically if I was in the green light zone then I might be able to actually be improving, if I was in the red light zone maybe bad behaviour.

Patty: Can I stop you on second for a minute? So Jordan has gotten to kindergarten and he was diagnosed at 3. We started pouring all of our resources into therapies, speech, occupational therapy everything because it’s our impression with autism if you don’t teach them how to speak and they didn’t learn how to interact by the time they were 5 or 6 you know their brain started changing the way it formed and such so we really poured a lot into that and it made a huge difference. When he was 4 he started talking and I was going to conventions all over the place trying to learn about autism because it was kind of new 20years ago not nearly as common and well understood as it is today. He ended up going into regular included classrooms at kindergarten he had already taught himself how to read, recite his alphabet, read all his patterns and all his colours with puzzles he went crazy. But his IQ test 79 I think he didn’t test well or communicate or anything but he was brilliant and they recognized that there was great potential so they did go ahead and let him be fully included, he was pulled out to resource or special ED or (unclear 8:42) for social skills, speech training and facial training but academically he was always included because he did really well with all of that part. He was like the first student who had gone through who was included for academics and pulled out for other stuff which kind of the opposite of what normally happens but he was fully included as a kinder garner and started doing great. But it was difficult for the teacher in a lot of ways the team worked between the parents, the resource director, special authority there and the kid creating systems that we understood normally worked you know that communication, interaction was huge in making it successful and bring home what they were doing and reinforce it. I think is one of the things that was such a huge success between the parents and the teachers willing to try what we suggested because we knew our kid better than anybody else and we had been working with him for years and kind of had ideas what helped him as far as motivate him. If they listened to what we would say it would make their lives a lot easier and helped him to be so successful, we kept that partnership going even now he at Tennessee State and my husband is an adjunct professor and he communicated with the professors so that if there is questions or how do we tell him something or you know discuss with him they even now they’ll discuss it really patiently for the success for the kid. I think it helped Jordan that his parents were on board with it, we were not in denial in any way and we were going to fix this problem our mind set primarily was that he lives in a regular world and he’s got to interact with that regular world and it’s not going to modify for him necessarily so we do as much as we can to teach him to be who he is in that world. Because he’s going to live in it and hopefully be independent and successful in that world so we want to modify what we can and what’s reasonable but we also want him to have to modify and adjust to the world that he was placed in so

David: Let me ask you a quick question about elementary school. Do you remember anybody who was special in elementary school?

Jordan: Of course I do, in 2nd grade there were 2 girls who (unclear 11:13)and Melissa but most of the time I most of the time there was this kid named Hogan not to be mistaken with Hulk Hogan but he was a sort of a big one I must say. Well what happened was he actually was there for me he seemed to be somewhat like my protector in there like he kind of protected me from bullying. I never had one bully in all my life I was pretty amazed because I never understood why a bully represented the media.

David: Who was your favourite teacher in elementary school do you remember ant name now?

Jordan: Well

David: Was it Miss Brannon

Jordan: I love Miss Brannon she was a wonderful woman she was the resource director. She let me do many things in that class, well she kind of taught me stuff about my body and how to manage it and al well as curtsied and stuff and I was allowed to talk about my interest and she helped me a bit with learning some words and stuff so basically she let me play a few games involving teachings of words and maths so I may be able to understand better about words. There was this word game where I had to collect stuff a slide scroll if you know those from video game history and there is this one game involving me as a train and the limit was 999 basically a numbers train and you press number and it would just go to that place that’s on the train track.

Patty: Jordon has always been good with numbers and one of our discipline system even when he was in 2nd, 1st, 2nd, 3rd grade was for him to collects points and when he got so many points he would get to go buy one of him favourite Thomas Tank characters or something like that he would keep up with them in his head so he and he could always tell exactly and  it was like a 100 points system not just you know a few points but he would know when it was 72 he always knew how many gains or loss that’s 2 points we take it away if you are not going to settle down right now. And because he’s black and white honest, it’s right or it’s wrong and he approaches the world that way he couldn’t lie about whether he loss points or not. It worked because he would have to be honest just because that’s what autism is. Its’ what it is just yes or its no, it’s black or its white; it’s not that grey area. The resource teacher was very good at using his strengths playing to those playing to his interests in trying to create the motivating system that they used and that was huge and using peers like he said his friends. They always try to sit him by in every classroom he always has one or two little nurturing girls that want to help or want to mother somebody and that’s where Jordan would be sitting and they love him to death and keep him on track whatever. There is always some friends like that abound you (crosstalk-well yeah) even in high school he had those friends..

David: That’s even gone all the way up to high school and Tennessee State as well students have always kind of taken to Jordan they understand that he’s in class he trying, he’s working really hard and

Patty: They usually respect his intelligence and always he’s going to help them and if he’s on their team they are going to get all the answers right then they just work with him, work with him and the teacher has spun it as a positive thing and put that emphasis on the child and the student in the room take it that way and they learn from the situation and they grow learning how to deal with this person who is different from them. And the rate autism is growing in our society one out of hundred and ten I think it is now boys for sure, they are going to have to deal with a lot of them and they are smart like Jordan the ones that are going to come along and they are all starting to come to college and this first big wave they are going to get degrees they are going to be out in the world place with these kids and they need to know how  to interact with then if they had them all through elementary school they would be much better people when they get to young adulthood.

David: So at this point Jordan graduated with honours from (unclear16:46) high school so he still has a scholarship due (crosstalk-yeah) and what did you graduate in?

Jordan: Computer Science and class one and two film unit one and two basically

David: Go ahead tell them about you’re characters in your film.

Patty: This involves movies, movies trivia, producer, actors all their names, what dates they came out

Jordan: Well what happens is that you know while I was making movies I was trying to add characters of my own I mean comparing with doing dumb stuff on YouTube I was trying to actually tell a story. Basically there were certain characters that I wanted to use to tell that story and help that story along of course I wasn’t exactly go at first but then I always jump at the top and every film I made I tried to improve and basically I’m at the point where I can direct character by a certain motivation actually to be the best he can be to. Basically there’s one character of mine Samson who looks a lot like me and

Patty: When Jordon was about seven we felt that he was getting too focused on TV and stuff so we cancelled TV in our house so he wasn’t, he has 2 brothers and sisters and of course they were all divested but we cancelled the TV and his way of kind of dealing with it was to start creating his own shows and characters (crosstalk-universe) his own universe basically where we were all in. Not that he retreated into it but he played with it and he drew it on paper and he would have pages he’d flip through and in his mind it was like different screens he was looking at, it was just really fascinating. But he kept those characters added to them and made (unclear 19:12) maybe he would create them on Popsicle sticks and move them around and take pictures of them and edit movies and he just started his second, what is your paper you just did?

Jordon: The farm project

Patty: Yeah or his English composition class he had the choice of doing it as a multimedia or a written paper and he is extremely good with sentence structure and his spelling and grammar is excellent. But he chose multimedia so he just made a little movie where he pulled in movie clips and all kinds of stuff

Jordon: I give credit to those people who almost believed because they would come up as honest

Patty: And that’s the right thing to do give credit for the work, give them credit for it

Jordon: And well

Patty: Just a second

Presenter: So Jordon this is for earlier, what did you find as you got older Jordon and you started going into middle school and high school was there any point where it became really hard to be in regular you know regular classes? Like did it get harder as you got older?

Jordon: Yes it did basically I was a bit stressed out by the fact that I was getting a little more look than usual and the fact analyse literature and I also had to write essay that point to the person specifications about, I’m not exactly that I don’t know if I’m actually good at writing essays I wish I am but I don’t. I’m good at stories and personal I remember those times.

Patty: He wants to write what he wants to write always.

David: we had a little, little problem in 10th grade he was in private school and we had some anger issues about being too good with the computer and so he ended up missing a lot of school and cancelled them out the first test that you took and I believe your history class (unclear 21:36) remember and you sat together with people who were watching over you and he twelve students, here’s the best grade

Patty: Jordon had the top grade in (unclear 21:50) class. Jordon he went to public school starting in 3k with the 3 year old class room, he was put in a room with a couple of fairly profound kids when he was 3 and we lived in Florida.  And we moved to Alabama and they wanted to do it again to be in a room with all ages of kids you know lining up pencils not that that’s bad but it was a vast array of ages they were teaching some over here to use washing machines and they had little four old Jordon you know in the same room. So we were not pleased with that so we put him in our church preschool and provided an aid to be him so that, that would be manageable and actually the public school would pay for half of it because we kind of pushed that issue some. So he did that and he started regular kindergarten with public school too at the end of 4th grade when we moved to this town from small Alabama to big city and these great big school with so many people this school seems to me to feel very much like the little school he was in was a neighbourhood school in a town but being on a smaller scale. There were 3 of each grade instead of probably 10 you know having. You know some of these schools around here are so huge but we were just not comfortable with him going right in at the middle of the year and we started home schooling and he stayed home and he being the you know the right and wrong kind of guy he is I would just give him a list and he would just check, the perfect home school student

David: (Unclear23:21) ten fifteen

Patty: Yeah but he knew he wasn’t getting his social interaction and I wasn’t trained in special Ed or anything so we knew he needed to be with kids and be forced to be regular in the world and not that home school aren’t but they are isolated and his biggest need is social skills and so that’s why we had to have that and my other son was at North Park Christian at the time so we talked to them and they were willing to give it a try probationary from one year to the next and he stayed through to the middle of10th grade that’s when he came to (unclear 23:56) and that was a fabulous move the best we were kind of afraid to do it because still a little bit sheltered about it but it was a fabulous experience and excellent support and that was the first time he had ever had peer coach and when he was in high school public school they provided the peer coach. Because he was in advance classes they were pushing the limits with all the other students and he could do the work but behaviourally he was sometimes distracting and so then he was beginning to get up and walk the halls and they couldn’t just let him do that without an aid and you know some of those kind of things and to reach over and give him the stress ball to squeeze or whatever needed to happen

David: So he was so on one hand he was (unclear 24:37) and on one hand he was (unclear 24:38) a real difficult thing for a (unclear 24:42) because that’s rare to have that combination so they worked greatly with us and I can’t say enough about (unclear 24:51) they did a great job with Jordan and Tennessee State has been incredible with their flexibility the special services they have they get it. The wave of autistic kids coming through it’s not going to stop and it’s going to benefit the normal kids because they are going to manage kids like this someday. Microsoft they are already starting autistics to do coding some of these bigger companies understand where their strength are so  you’re likely going to managing them in the future and they will be in your communities as well.

Jordan: Please I sort of feel that I’m been sort of speaking too much

Patty: Maybe they want to ask you some questions.

Jordan: Okay, you can ask me some questions, oh yeah.

Audience: Jordan when did you know that you had autism?

Jordan: Well I think my parents told me.

David: But when did you realize it Jordan?

Jordan: I think I must, I think I was about maybe 99 or 2000

Patty: How old were you?

Jordan: About eight or nine.

Audience: Did that change things for you?

Jordan: A little I think but what happened was I seemed to try to understand it, yeah it might have changed things a bit.

Patty: I don’t think he really spoke it and said I’m having trouble with this I’m autistic and so that’s why I’m having a difficult time with till I would say the last 2 years. He didn’t start using that as an explanation for other people to understand why he was stressed out at that moment or anything like that. But it’s been very helpful for people around him and we felt from the beginning that it was very helpful to in every situation he’s been in to for all the people around to understand what was going on so when he’d show up at a church or show up a birthday party to say you know it must have been (unclear 27:22). He didn’t have a lot of friends because it was awkward but to go in and say Jordan is autistic and it’s a positive thing because of that he can do this and he can do that and this is wonderful but I don’t even know this and that and the other and we are wide open to chatting about it you know it’s an open door situation but it helps you to know and almost every time he’d start in a class and a couple days into the new year or new situation we would you know go out and have a special airing for Jordan while the teacher would explain to the other students with our permission so that they understood too you know I just felt that was always best for him and for all the people involved to understand what was going on. But yeah I think you started talking about it recently, say mom how much.

Jordan: Of course

Audience: Can you tell us what when you were in school what was the hardest thing for you and what was the easiest thing for you?

Jordan: Well when I went to school?

Audience: Yes

Jordan:  Okay well one of the hardest things for me when I went to school was trying to dealt with some of the extreme social situations, the you know crazy stuff happening and the also the changes in the schedule heck the lunch time was sometimes noisy. The one about changing the schedule I might have freaked out so other things that was hard was sometimes getting frustrated about doing things right and things not going my way. Of course one time I lunch wasn’t what I want so I kind of took that lunch sheet and crossed out the (unclear 29:51) and changed it to (crosstalk-the easiest?)Maybe the easiest thing was the good times like when I actually did stuff that I knew I could do and actually improving on my skills and hanging out with these people who loved me and they were trying their best to take care of me as well as and show me which like possible do to make things to keep me satisfied and on field day. Field day was kind of a good day because I would be getting some good treats especially (unclear 31:09) yeah some popcorn and pizza

Patty: He loves to eat, didn’t always love to eat very, very picky with his food from a young child and then I guess from around 4 or 5 years old we started deciding he could live off of hamburgers and chicken nuggets for the rest of his life and had to force entry of new foods and we picked things that was common in life as opposed to what would be good for him because we wanted a successful better kid so we picked pizza, we picked hot dogs we picked stuff that would be in a social situation he would need to be able to eat spaghetti whatever would be served mostly likely when he was out in public and try to teach him how to learn to eat all that stuff  and  he (unclear 32:03)

David: So Jordan it’s all most time to get going so tell them thank you.

Jordan: Well thank you for having me and I wish you in your education and I also thank you for helping to improve this world for people like me and making sure that these kids do their absolute best in the future.

Tim: Just one more minute before everyone leaves behind where Gail where Sidney sits is a bookcase and on that bookcase are books about exceptional children, gifted kids, kids with autism and we have the  Temple Grandin movie it’s like your own blockbuster script it’s great. There are a lot of movies and I try to buy movies that are applicable you know to our kids but they are just really good so if you haven’t seen it please check it out it’s there for us and the parents. There is also a movies called Including Samuel it’s a documentary about a film maker who son has cerebral palsy among things and they live in New Hampshire and him being fully involved in general education he is 4 or 5 years old in this film. There are a couple of books, Why Bright Kids Get Poor Grades, Being Smart About Gifted Children, there are probably almost half the books that are over there about gifted education because we don’t want to forget about our target kids and also Quick Guide To Inclusion this is a new book just really simple one kind of page ideas of how to make inclusion work in our schools in special grade. So you know we’ve got the bulletin board over there on the other side I’ve seen some people posting stuff and really excited about that, we have the resource library these things are here for all of us to take advantage so we can you know I mean Kincaid is just an awesome place already but I want to make sure everyone feels equipped and you know ready to take the challenge on for helping our kids and doing the best we can, right Jordan?

Jordan: Yeah

Tim: Alright so I think that all I have so

Forum Facilitator: I’d like to thank let’s give a round of applause so thank you for coming in and talking to our staff and thank you Tim for taking the time to organizing it. It was very motivating and at this time we are finished adjourned and don’t forget we have some cookies over here that Tim brought for us.

End of Transcript

Photo Credit: KSU

 

Autistic: On the Outside Looking In

Steve

This post was written by a friend of mine, Steve Summers. He has given me permission to repost this here.

Do you know how it feels to be treated like an outsider? I do. I am Autistic. Some people seem to think that as a result of being Autistic, I am in my own little world and that I won’t notice if they leave me out or ignore me. They are wrong. I do notice it and I don’t like being treated as an outcast or outsider.

Do you know how it feels to be excluded? I do. When I was a kid I would hear the other kids talking about parties or events that I wasn’t invited to. As an adult, I still have people around me doing the same thing. They talk about how they had some fun, did some event or get together that I was never invited to do. Not too long ago someone was talking about how they took an acquaintance out on their boat on a fishing trip and even though I have known them much longer, I have never been invited to go with them. Is it because I am Autistic? Do they care that I feel ignored and excluded?

Do you know how it feels when someone offers to do something nice for you and then they don’t ever get around to doing it? I do. I know because that happens to me.

Do you know how it feels to be second guessing yourself even for seemingly small issues? I do. For example, I recently wished someone a happy birthday on their Facebook timeline. When I went back to their timeline a day or two later my greeting was hidden away. Why would they do that? Is it because they don’t want their friends see that they have an Autistic friend? Are they ashamed to be my friend? I don’t know, but, it seems that way to me.

Do you know how it feels to have people simply stop contacting you? I do. I sometimes have friends and acquaintances “fade away” from interacting with me without any explanations. They simply stop talking, calling, commenting or posting. When asked about it they say nothing is wrong, but they don’t change anything.

Do you know how it feels to have people get offended over things that you don’t have any control over? I do. For example, I have some mild issues with face blindness (prosopagnosia) which is somewhat common among people with autism spectrum conditions. I sometimes have difficulties with recognizing people if they are in an unexpected place or in a place where I haven’t run into them before. People expect you to say, “Hello” and they get offended if you walk past them without saying anything. Along with face blindness is a difficulty in remembering names. I prefer to simply say “Good morning” or “Hello” without including a person’s name because I don’t want to chance saying the wrong name. Some people insist on using names and will be offended if you rarely say their name. They don’t understand that I don’t mean any offence by not recognizing them or forgetting their name. I don’t do it on purpose. Please, don’t be offended if I seem like I don’t know you. Please, if you say something like, “Hello” and if I look confused, add, “I am _____ from _____ we met at the _____.”

Some other things Autistic people sometimes do may cause inadvertent offense to the ignorant. Here is a partial list of some Autistic characteristics that that may confuse the ignorant and lead to rejection: 1. Lack of eye contact. 2. Poor social skills. 3. Literal thinking. 4. Fidgeting or stimming.

So why do some people who are part of the neuromajority exclude Autistic people? Most likely because they are ignorant of the facts of Autism and due to their ignorance they behave as neurobigots. They may exhibit either conscious or sub-conscious neurobigotry, but, the results are the same, exclusion of the Autistic. People who are ignorant tend to avoid and shun people who are “different” or that they don’t understand. If people don’t educate themselves on what to expect from the Autistic, they may try to avoid us. Ignorance really does hurt us. Being different is not wrong. We shouldn’t be excluded for our differences.

Try to put yourself in my shoes and see how it feels to be treated like someone who is an outsider. Try to understand that I do notice these things and I don’t like being ignored and excluded. Please be considerate and inclusive. Thank you.

———

Read more about face blindness here: http://autism.about.com/od/SymptomsofAutism/f/What-Is-Face-Blindness-Prosopagnosia-In-Autism.htm

I was diagnosed with Asperger Syndrome (part of the Autism Spectrum) as an adult. I was diagnosed following my 11-year-old son’s diagnosis with Aspergers. I am happy to have my diagnosis. It is like a light was turned on that illuminated my entire life in a new way. Now I understand why I never really ‘fit in.’ It is like having a huge weight lifted off of my shoulders to have my diagnosis.
I don’t feel that people should make divisions between parts of the Autism Spectrum. I am Autistic and I want to work to make the world a better, more understanding and accepting place for all Autistic people. We need to work together for the benefit of all on the Autism Spectrum.

This Special Education Elephant Is Staring Straight at You

The Special Education Elephant Is Staring Straight At You

By Debbie

I love elephants. I collect elephants of all sizes and materials. I love reading about elephants. These elephants are different. There are many elephants in the room. Poverty. Hunger. Class warfare. Racism. And an odd bit of segregation we still practice in the United States. It’s called Special Education.

I was curious about how Special Ed came to be, and, as always, I asked Ira Socol, who I ask about anything related to the history of education and Special Ed in particular. As I suspected, Special Ed began in earnest in the 60s. Ira explained to me that as we were working on racial desegregation that also included removing segregated populations of mentally and physically disabled from institutions and moving them to schools. Along with that, we closed down many schools for the deaf and blind, although some still exist and are quite good.

Essentially, then, Special Ed was started with the best of intentions. However, like many benevolent actions, it was not thought out all the way through. Once mentally and physically disabled students were moved to schools; it stopped there. People didn’t consider integrating the classrooms. Disabled children were still primarily kept segregated from the rest of the school population. In Chicago in the 1970s schools were built solely for physically disabled students. Ironically, the local communities complained that their able-bodied kids were being kept out of these special schools. Chicago Public Schools (CPS) caved into this pressure, and residents were given access to these schools. These able-bodied kids were never placed in classrooms with their physically disabled peers. Thus, even in schools built with the intention of educating the physically disabled, separate and unequal continues. The conventional wisdom is that if a kid is in a wheelchair or even just using a walker or orthopedic devices they are somehow not smart enough to be in gifted programs with able-bodied peers. Physically disabled does not equal mentally disabled, yet it seems that is how bureaucrats think.

People who think that Corey H was a boon to Special Ed are sorely mistaken. Laws calling for Least Restrictive Environment are open to subjective interpretation. Doing what is appropriate is also open to interpretation. These laws protect the school districts much more so than help any children, as I mentioned in my post, Kid O Talks Back. Eventually:

I decided to try to make them do the right thing through due process. The law says that the schools must do what is appropriate. However, that is very loosely defined, giving schools a lot of wiggle room. The least appropriate is still appropriate. I had heard of the Corey H case and thought, aha, I have something to grab onto. I had even located the psychologist who had evaluated him. She wanted nothing to do with me. “I’ve retired,” she explained. I asked her if she had a student who’d be interested. She made a less than half-hearted promise to find someone for me. Then I discovered who the attorney was. She headed up the advocacy organization I had been in contact with. “She won’t talk to you,” the advocacy person said to me.

This was devastating for me. I quickly stopped pursuing due process because I had no money for an attorney, and I realized that the attorney for CPS was going to make several meals out of me. June 2010, my husband and I spent several hundred dollars on an initial consultation with one of the top Special Ed attorneys in Chicago. As we were leaving, he lamented that not enough people in our position could afford attorneys to help their kids. We barely could afford the consultation ourselves. These school districts count on this to keep from providing services and placement that a special needs child deserves. I’ve had two people now tell me that they hear similar stories too often. School districts like CPS probably rarely have to pay up or otherwise do the right thing.

Mentally and physically disabled children are warehoused every day. They are kept secluded for the most part. One woman on Twitter told me she has a gifted child and a special needs child. Naturally, she wants the best for both kids. However, if it were a choice for resources for her gifted child or her special needs child, she would prefer that the resources would go to the special needs child. While it would be a shame for programs to be cut for her gifted child, that child would have an easier time doing without. Budgets slashed for special needs children, however, is much more devastating. For these children to succeed, they need more not less. Most people do not see it this way. This woman told me that fellow parents of gifted children had told her that helping special needs children is a waste of resources.

The meta message is that special needs children are somehow lesser beings. They deserve less because they are less. Who is to say who will give more to society if given a chance? AG Baggs, an autistic woman, asserts in her video, In My Language “Only when the many shapes of personhood are recognized will justice and human rights be possible.”

Recognizing the “many shapes of personhood” begins at home, begins at school, and begins in our community. The best way to restore dignity to special needs children is to desegregate schools. Abolish Special Education. Make all classrooms multi-age. Let the children who are inclined to mentor do just that. Let the kids who are inclined to care for younger kids or special needs kids do just that.  I am not talking about things that adults are needed for.  I am talking about modeling care, love, and mutual respect, and most importantly, treating both special needs children and adults with dignity.

Special needs kids grow up to be special needs adults. We need to find a way to allow them to be part of the community.  As I wrote in my blog post, Landscaper! There’s a Weed in My Sod: Why We Need Inclusion in Classrooms and Community:

None of us are weeds to be disposed of. We all form an intricate part of the educational ecosystem. We all have our loud humanity that demands attention. And care. And understanding.

We need to stop averting our gaze from the Special Ed elephant in the room. We need to squarely face our fears and judgments of people, who, on the surface, seem different from us. If we do not do this, then we will continue to harm portions of the population who deserve to have their humanity honored. We need to embrace the Special Ed elephant. We need to help the Special Ed elephant dissolve peacefully away.

Editor’s Note: This article was originally published in 2012 and has been updated with a new featured image and formatting.

A version of this article was originally published at Educollab. You can find Debbie on Twitter @MissShuganah.

A Letter To My Daughter’s Teacher

letter to my daughters teacher; a pad of paper with a pen resting on it
By Ariane Zurcher

Editor’s Note: This version of the essay does not reflect the recent changes made by the author. To read the post as was intended by Ariane Zurcher please visit Emma’s Hope Book | Living Being Autistic.

My daughter, Emma will be in your class this year.  A few days ago, Emma told me she was “scared to go to new school.”  Emma loved her teachers and friends from her old school.  So I want to introduce you to her.  I cannot speak for Emma, I cannot know if everything I write here is completely accurate, but these are things that I have learned over the years, things that are specific to Emma and that may be helpful, at least that is my hope.

Sometimes Emma does not look at you when you are speaking to her, but that doesn’t mean she doesn’t hear you.  Her hearing is excellent.  She may not know how to process what you’ve said or she may not know what is expected of her.  Often if you ask Emma a question, especially if it’s a question she knows the answer to she either won’t answer or will say something nonsensical because she isn’t sure what’s expected of her or why the question has been asked.  Sometimes people get nervous and don’t know what to say, so they’ll ask, “Oh Emma, that’s a pretty dress.  What are you wearing?”  or  “What color is that?”  These are questions that aren’t being asked for any real purpose or they are testing questions.  Typically these are the kinds of questions Emma will not answer.

Change is difficult for all of us and Emma is no exception.  Having a written or picture schedule for the day and week will reduce her anxiety.  Like everyone, Emma really appreciates having a say in what happens throughout the day.  Whenever appropriate allowing her to set a timer for a one, two or five-minute warning before a change in activity will go a long way in helping her do what she needs to prepare herself.   Usually Emma will go along with any change if she’s given sufficient warning.

General Disposition:

Emma loves people.  She is gregarious.  Her fall back position is one of happiness.  She is also very sensitive.  She can tell if someone is upset, stressed or angry and can become easily overwhelmed by those feelings.

Particularly good at:

Emma is terrific at leading others.  She can be extremely persuasive and is a great negotiator.    Her negotiating skills are wonderful for math and science and her leadership skills are wonderful motivators.

LOVES:

Emma loves music, dancing, being on stage in front of an audience.  Give Em a microphone and she will sing and dance.  She loves “talent shows.”  She loves any game involving running, swimming, holding her breath under water, laughing and being silly.  She loves playing versions of “Duck, duck, goose” or as Emma would say, “Raincoat, raincoat, umbrella!”  Musical chairs is another favorite, dance parties, hide and seek, dressing up, bouncing, swinging and going to any playground.  Emma is very athletic and very girly.  She likes cooking and while she won’t eat most of what she cooks, unless they’re pancakes, she will enjoy the opportunity to cook.

Does NOT like:

Emma gets upset if she is told not to do something she has just done.  Example:  “You cannot shout!” after she has just shouted is difficult for her.  Obviously she CAN shout, she just did, with you right there watching.  Telling her she “can’t” is not true and it’s confusing.  Instead say, “You mustn’t shout.” Then in a voice that models what you’d like you can say, “Here is how you can speak instead.”  By doing that, you are helping to give her other choices.  If she is not allowed to do something, be sure to tell her what she can do as an alternative.

Academics:

Emma is fairly new to all academics.  Within the past year she has learned to form the letters of the alphabet and is now reading, writing and typing at a 1st – 2nd grade level, likewise with math.   Emma loves the Hubble Imax movie and her favorite museum is the American Natural History Museum.  She is showing interest in learning about our world, the ocean, the moon, other planets and the universe.  She told me last night that she doesn’t want to be an astronaut though, she said she wanted to be a “singer on the stage!”

Needs extra help:

Emma resists academics.  They are hard for her and she becomes upset when she makes a mistake.  She doesn’t like getting anything wrong.  But if you help her succeed, she will flourish.  If she is reading and doesn’t know a word, give it 15 seconds or so to see if she can work it out on her own, (don’t say “sound it out” or “try again” because she didn’t learn to read phonetically and while she is able to sound some words out on her own, it won’t help her with all those exceptions like limb and thought.)   Emma has a strong desire to learn and an even stronger desire to do things independently.  With your help, she can and will succeed.

Frustration and Signs to watch for:

Emma gets a look of panic on her face.  She may begin breathing with short sharp intakes and she will often talk to herself in a high-pitched questioning voice laced with anxiety. When Emma is overwhelmed she may shut down and withdraw.  She may begin scripting, using set phrases she’s heard. Those scripts may be in context with what’s going on or their connection may not be clear to you, but that doesn’t mean there is no connection, it just means you don’t understand or know what it is.  Emma often has trouble processing her feelings and the feelings of others.  Sometimes she needs help identifying those feelings, just as we all do.  Sometimes she will start repeating things other teachers have said to her in the past in a scolding tone, such as, “No Emma!  You may not __________.  If you ____________ we will take ________________ away!”  When Emma is overwhelmed she has to rely on her scripts as all other words have left her. Try to listen even if the words seem meaningless, she is trying to communicate her feelings of distress to you.  Sometimes she might say, “You have to ask for help!”  This is what she says when she needs help, but sadly this can confuse those who do not know Emma well.  She might also say, “Do you want to go swimming?”  Which means she really, really wants to go swimming.  If you show her on the schedule when she’ll be able to go she will usually calm down.

It’s too late, the storm has hit!

This is not the time to engage in a power struggle.  Emma is not trying to manipulate you or upset anyone.  She is simply expressing her frustration in the only way she knows to.  Sometimes if she’s very upset she will bite herself or punch herself, usually on the hand or arm, sometimes if things are very bad, she will punch herself in the face.  Do not exacerbate this challenging time by raising your voice or telling her “You cannot hit!”  or “You cannot bite!”  or even “We don’t bite.”  (See Does not like paragraph above) Restraining her in an attempt to stop her will not prove helpful either.   Emma bites or hits herself because the feelings of frustration are overwhelming her.  The pain she causes herself by biting or hitting is within her control and is therefore preferable.  It things have escalated to the point where Emma is hurting herself, everyone must try to understand what has happened before things became this derailed and try to prevent them.  Sometimes it isn’t possible, but Emma is trying to cope as best she can.  When she is calmer you can work on helping her find alternate ways to cope.

What helps you when you feel overwhelmed?  What things do you do when you feel anxious, scared or upset and no longer feel you’re able to function?  Maybe the things that work for you will help Emma too.  Remember, be patient.  Showing Emma once or twice will not mean she’s learned, she will likely need to be shown numerous times.  Often there is a sensorial component to her upset.  She is overwhelmed with feelings or a sensation or too many sensations.  She may be tired or hungry, too hot, cold or thirsty.  Sometimes a sensory break will do wonders to restore her equilibrium.

Strategies that work well:

Make it into a game!  Music can be incorporated into just about any activity and can change anything.  High affect and silliness can make something that feels difficult seem fun!

Humor:

Emma loves anything silly and ridiculous.  Silly faces, silly dances, playful interactions, games!  She has specific jokes she likes to play with specific people.   Emma loves to laugh.  She loves to make up word games.  She enjoys taking a word like “uncle” and changing it to “Jungle.”  She will happily tell you that she has a “Jungle Andy and a Jungle Victor.”  Come up with silly word games and Emma will join in with glee.

Things that have a tendency to backfire?

If you say, “You have to do ________________.  If you don’t, I’m going to take __________________ away” will make her upset and anxious.  She will have a hard time concentrating because she will worry about having something she wants taken from her.  Instead say, “You can ______________, but first you need to __________________.”  That way Emma can concentrate on having/doing something she loves as opposed to taking something away.

Emma’s String:

Emma has a string that she loves.  Please do not take away her string or use it as a form of punishment.  Her string helps her focus and it makes her feel safe.  If you take it away or threaten to she will become completely overwhelmed.  Sometimes, when she is writing or typing and needs both hands to do so, you can ask her to set her string near her or in her lap.  If you allow her to control where she puts her string she will feel safe enough to concentrate and do her work.  Also (a little secret) if you get some string or ribbon and copy her movements in a playful way, you might see and feel for yourself how wonderful it can be and Emma will be delighted that someone wanted to interact with her in a way that she loves.

Food:

Emma does not have any allergies or foods she cannot eat.  However she likes to eat the same food everyday.  Some food looks, tastes and smells strange to Emma.  Please do not make her eat anything she isn’t interested in eating.  Please do not tell her she must finish something in order to have something else.  If Emma shows interest in something someone else has or is eating and it’s appropriate, do allow her to smell, lick, taste or eat it if she wants to.  And please do tell me so that I can find whatever it is and offer it to her at home too.  We will pack Emma’s lunch everyday.

One last thing:

Assume competence and respect Emma’s process.   Emma can and does learn.  She may take longer or less time than another child, but she will learn.  She is extremely independent.  Show her, help her, let her.   You are her role model.  Emma has dreams, just as we all do.  You can help her achieve those dreams by believing in her.

I am available to talk, discuss and strategize.  I am here to help in any way that I can.  Nothing is more important to me than my daughter.  Please keep in touch with me.  Please let me help in any way that I can.  There is no detail about Emma’s day that is too small.  Do not hesitate in emailing me _____________ or calling  _____________. 

 Thank you so much,

Ariane

Young girl standing in front of a classroom holding a microphone singing.

Emma performing at her old school.

 

*The above “letter” was inspired by a form letter Ann sent me by Jene Aviram© http://www.nlconcepts.com

A version of this essay was originally published at Emma’s Hope Book in 2012. 

Photo Credit: Guudmorning!/Flickr; Ariane Zurcher

It Takes Skill

keithBy Doug & Patty Gerdel

Keith Gerdel was in his last year of school in 1990 when doors started to open for him. His circle of support had struggled continuously to get the school to include Keith in educational programs. Yet, at that juncture, it seemed more important for Keith, who is nonverbal, to determine where he would live and what he would do all day. Keith’s mother went to the TASH conference, where Lou Brown, a professor at the University of Wisconsin, explained that, if a person had “one repeatable skill,” he could be employed. The trick is to find a place where someone is paid to perform the “one repeatable skill.”

Keith’s parents had refused to believe reports from rehabilitation services that Keith’s “profound” disability made him unemployable. They knew that Keith’s repeatable skill was his ability to pick up and put down small objects. He often picked up anything left on his wheelchair tray and dropped it on the floor. Instead of calling it noncompliant behavior, Keith’s parents designated this as his “one repeatable skill.”

One night while having dinner at McDonald’s, Keith’s younger brother, Jonathan, discovered that McDonald’s employees were picking up Happy Meal prizes and putting them in the boxes. After a little coaxing with the school and discussions with the local McDonald’s management, Keith began his work study program.

On December 15, 2006, at a Christmas party, McDonald’s employees were recognized for their years of employment. Keith Gerdel received a standing ovation as he received his award for 15 years of employment. Indeed, TASH did make a difference in Keith’s life – just because his mother learned about “one repeatable skill”!

It would have been much easier if Keith had moved into a group home and attended an adult day care program. However, TASH’s influence made segregated programs totally unacceptable to Keith and the people who care about him. Now 38, Keith lives in his own home with his roommate, Joel Goodrich. They both have a circle of support and hire their own staff for their home. Their door is open.

This article originally appeared in a document published by TASH in 2008 called When Everyone Is Included. For more information on the important work TASH does please visit their website and follow them on Twitter. This is the fourth article in a series. The first article can be found here, the second can be found here, and the third can be found here.

When Life Hands You Lemons…

lemons
By Kendra Gottsleben

On November 3, 1984, an excited and anxious set of parents in South Dakota finally experienced the moment they had anticipated for nine months: the birth of their daughter. I, Kendra Gottsleben, was born healthy and strong, weighing nine pounds and measuring twenty-one and a half inches long and with no signs of future health challenges.  Like any new parents, they saw my endless potential from the first day they met me.  It was only a few months later that my family began a lifetime journey of great obstacles and challenges.  However, there would also be many blessing to come with them.

When I was four, I was diagnosed with a rare enzyme disorder called Mucopolysaccararidosis Type VI (MPS VI), also known as Maroteaux-Lamy.  One in 215,000 people are diagnosed with this condition.  My body is missing the enzyme that is needed to cleanse my cells, which causes a buildup of a gluey-like substance that affects my connective tissue and other vital organs.

Receiving the diagnosis from a geneticist was unimaginable and heartbreaking for my mother and father as they were unable to really comprehend what it meant for my future.  No parent ever imagines having to hear those words.  But, despite the diagnosis my parents raised me to keep moving forward and to never give in to what others say or think of me.

Fast-forward twenty-four years later, I successfully graduated from Augustana College in 2010.  I obtained a double-major in Sociology and Psychology with the hopes to help others.  I always have tried to define my life by my positive outlook and success in overcoming obstacles!  But truth be told, I have had my share of moments when I had to search long and hard for the silver lining in a frustrating situation.  Sometimes I do not end up seeing the positive immediately or even days after the incident.

A perfect example is when one of my college professors told me she thought I took the easy way out, and that I was not graduate school material.  It wasn’t until a week later that I realized how to make this a positive situation – she created a fire within me to prove her wrong.  The professor’s comments also made me take some time to reflect on myself and my ambitions in life, after which I concluded that I have accomplished a lot and I will not stop anytime soon.  Someday I know that should I choose to go on to graduate school I will be able to face that challenge confidently, no matter what my professor may think.

I have always been passionate about helping others whether they have or don’t have a disability or medical condition in realizing that who we are or what we look like should not stop us from reaching our dreams and goals.  My MPS has given me many obstacles such as poor vision, constrictive airway, and an inability to walk long distances, only to name a few.  However, I have always been determined to not let others limit me in what I can or cannot do.  I have continuously taken every experience, no matter good or bad, as a lesson learned and I press forward into my future.

As I keep constantly looking to learn from my experiences, I recall the first time an adult in my life told me that I have a lot to share with the world (besides my parents).  This person was one of my high school guidance counselors.  One day, as I sat in his office unsure of myself, he told me, “Kendra, you have the potential to impact others in great ways.”  I respected his comment at the time, but as a high school student, I was unable to see how my life experiences would benefit others.  Little did I know that the simple lesson my parents taught me when I was growing up would be my message to share with others: even though I cannot choose my obstacles, I choose my attitude which determines if my goals and dreams will be achieved.

Some people in this world adhere to a motto and I am no exception.  The quote I adhere to is, “When Life Hands You Lemons…Make Lemonade.”  This quote reminds me to turn obstacles in my life into positives.  I have even put my own special twist on this common phrase, “When Life Hands You Lemons…Turn Right Around and Squeeze Those Lemons to Make the BEST Lemonade Possible.”  My belief in this motto encouraged me to accomplish one of my biggest dreams: writing an autobiography Live Laugh Lemonade: A Journey of Choosing to Beat the Odds.  The book’s theme is about how I have overcome the obstacles in my life to accomplish my goals.

I frequently emphasize with others that we all have our own hurdles to overcome.  It doesn’t matter how different each of our lives are; life is difficult for all of us.  But without our challenges or lemons, we would not be the people we are today.  I know I certainly would not be!  The truth is that we all have to work hard to achieve our dreams.  The key to success in life is to never give up and never stop dreaming.  The greatest successes are worth the painstaking work.

The lemons in my life have gotten me to where I am today: a college graduate, author, business owner, and a Social Media Coordinator.  I have chosen to make lemonade every day, no matter what.  As I end, I ask you to reflect on this question, “If the obstacles or lemons had never occurred in your life, where would you be today?”

Social Media Networks

Facebook: Kendra Gottsleben

Twitter: @Kegottsleben

Pinterest: Kegottsleben

For more information regarding my book it can be found at the following link http://kenimagine.storenvy.com and there are ebook versions are available on Barnes & Noble.com, Sony, Kobo, Amazon.com, & iBookstore.

Twirling Naked in the Streets and No One Noticed; Growing Up with Undiagnosed Autism – Book Excerpts by Jeannie Davide-Rivera

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The following are book excerpts of Jeannie Davide-Rivera’s book, Twirling Naked in the Streets and No One Noticed; Growing Up with Undiagnosed Autism.

Jeannie grew up with autism, but no one around her knew it. Twirling Naked in the Streets will take you on a journey into the mind of a child on the autism spectrum; a child who grows into an adolescent, an adult, and becomes a wife, mother, student, and writer with autism.

This is a gripping memoir of a quirky, weird, but gifted child who grows up never quite finding her niche. It took 38 years to discover that all the issues, problems, and weirdness she experienced were because she had Asperger’s Syndrome (AS), a form of high-functioning autism.

The tale begins at age three and takes us all the way through her diagnosis. Along the way she explains autism in a way that will have fellow “Aspies” crying tears of joy at being understood, and “neuro-typical” people really starting to grasp the challenges that autistic people face every moment of every day.

Twirling Naked in the Streets is available on Amazon.com (Kindle Edition and Paperback), Amazon.ca, Amazon.uk, and on CreateSpace.

Twirling Naked in the Streets and No One Noticed: Growing Up With Undiagnosed Autism was released in e-book and paperback format on April 10, 2013.  Paperback: 204 pages.

About The Author

Jeannie Davide-Rivera is an award-winning author (Twirling Naked in the Streets and No One Noticed; Growing Up with Undiagnosed Autism), the autism category expert writer for answers.com, a writer for Autism Parenting Magazine, The Thinking Person’s Guide to Autism, and a professional blogger with Asperger’s Syndrome. Growing up with undiagnosed autism, and now raising three ASD children gives her a unique inside look at the world of those living with Autism Spectrum Disorders. Jeannie lives in South Carolina with her husband and four sons.

For more information about life with Autism or Asperger’s Syndrome visit her website, (Aspie Writer: Understand Autism from the Inside), follow her on Twitter, or connect on Facebook.

Click Here to DOWNLOAD the chapteKindle-Cover1They Missed It; They Missed Me.

Click Here to DOWNLOAD the chapter School was a Minefield.

Click Here to DOWNLOAD an audio sample of Twirling Naked in the Streets and No One Noticed.

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