Tag Archives: AS

“That’s retarded!” or “What a retard!” or “Are you retarded?”

11 Feb

bullied.jpg



This is my son’s worksheet from after an incident at school today. It wasn’t the first incident. Today, though, they surrounded him and joined in and taunted him. It started because one student called him a retard.

This is not ok.

I realize many people still use the “r-word” casually and I realize many people use it and think it is ok if they use it because it was considered acceptable when we were growing up. It is not acceptable now. Please consider what you are saying when you are calling a friend “retarded” or “a retard” or calling their behavior “retarded” as in “that’s so retarded” or “you are such a retard“. You are saying (even if this meaning is unintentional) that people with developmental, cognitive, and physical (people assume far too much about cognition based on just a glance) impairments and disabilities are less than you, are less than “normal”.

Our community has fought, and continues to fight, just to live as others live and to have the same rights as Joe or Jane Average. We all have dealt with adversity, even the youngest in our ranks.

Do not add to the vitriol and mistreatment by using that word.

If you use it now, please stop. If you use it by accident… That happens, but think about the child or adult you are really hurting, and vow to never use that word again (and share this message. Please.). If you hear a child, your child, a nephew, niece, neighbor, etc… use the “r-word“, tell them what I am telling you here. Tell them it hurts. If you are a teacher or school administrator or support staff, please consider spreading awareness that this word is inappropriate and too many students are still aiming it at other children, and not always in a casual way.

Some of those children, being called retards or asked, “are you retarded?” on the playground, in the halls, in the cafeteria are children who have been fighting hard their entire life just to have a seat at the table and in many schools, inclusion means that the table has kids with disabilities.

If you think it’s not a big deal, ask those kids and ask their parents how they feel about it. Ask an adult with disabilities. If you don’t know any you feel comfortable asking then please ask me. It is a big deal.

I was called that dreadful word, as a child with developmental delays, and my son has been called that word daily, at school. My kid isn’t “normal” (which is a word we also don’t use in our home.). He’s better than that. His response to these lunchroom bullies is to explain to them why the r-word is not an acceptable word to use anymore. He is so much better, kinder, smarter than those nasty 8th grade boys. He would never call another child anything other than their first name, because he has been tormented and he knows that teasing and bullying is wrong. He is so much more mature than they are. He can’t fight back the way a developmentally average child would. So he explains. He tries to explain to these bigger kids why they are doing something wrong and mean. Which, of course, makes things worse, and magnifies his differences (which I see as such magnificent strengths) to these bullies. And the taunting increases. Where do you think these kids first heard the r-word? Probably at home, either from a parent or in a movie/on a tv show, and then they spread it around.

WE CAN STOP THIS.

Sticks and stones may break bones, but the reality is that words do so much damage, and until you have been at the receiving end of them, for a lifetime, it can be impossible to fathom the destruction they can cause.

Please share this and share this link: http://r-word.org/r-word-why-pledge.aspx#.Vr0azN-rTdQ

Please take the pledge and spread the message to family, friends, coworkers, classmates and ask them to move the message forward that the “r-word” is not acceptable in 2016.

Thank you.

xo,
Bek

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Alex’s Journey to Camp Cheerful UPDATE July 9

11 Jun
Alex’s Journey to Camp Cheerful UPDATE…
I want to thank all of the wonderfully generous friends who supported us in our fundraising to send Alex to this special camp.  Unfortunately, life had other plans for the time being.  Due to fairly dramatic health issues (more on that later), I am unable to accompany Alex to Ohio, so we are postponing his experience at Camp Cheerful until next year. I did return all funds raised, to their respective contributors, due to the change in plans.  Alex is disappointed, but he is very vocal about wanting me to get better.  We are working at getting new therapists on board for him, locally and hopefully camp will be in reach next summer and I will be 110% again!  Thanks again to everyone who continually roots for Alex.  Alex is well aware of the love everyone has shown us along our long journey.
xo
B

Alex is my amazingly brilliant, funny, sweet kid who has Asperger Syndrome. Asperger’s is a neurological disorder, it is a developmental disability.

Alex is almost 7 years old. There is a summer camp (Camp Cheerful) in Ohio specially
designed for kids with Asperger’s. It includes things like Occupational
Therapy, which would be a huge help to Alex. The camp would help give
Alex the tools he needs to face his daily challenges, which are more
than most adults could tackle every day.

Here’s a wonderful description of Asperger’s Syndrome that recently aired on the PBS show “Arthur” (the meat of it is only until around 2:45… so if you aren’t into Arthur please don’t feel you need to watch all 7+ minutes!)

For a more straight facts, less dramatized (less animated) description please visit AANE’s AS facts. For our personal experiences please read the Asperger’s entries on my blog

Love and peace,
Bek, Jeff, and Alex

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I’m compiling a list….

10 Apr

This is the image that came with the frame, it has nothing to do with the following post.Of silly things that I believed or that happened to me along the way… The baldguy calls these types of things “the adventures of lil’ Bekka”… The list is of things that aren’t necessarily Asperger’s specific….

A list of incidents, some of them hilarious in retrospect….

My first one:  I spent a good part of my childhood living in the woods and we didn’t have cable.  We certainly were not roughing it, but there was a great deal of wooded land belonging to a nature preserve surrounding us. So we didn’t have cable.  I didn’t see most of the classic John Hughes movies until they showed up on regular network TV, with most language voice-over bleeped… Fudge or Flip instead of Fu%$.  I didn’t realize until a couple of years ago (two years past thirty) that this was the case, I thought it was hilarious that these onscreen characters used regular words instead of swearing.

So of course, when I would quote the movies, trying to make a wee social inlet, I would always be quoting them wrong… Needless to say, most of the kids in the areas we lived in had cable (and were often shocked to find out that we didn’t) and they didn’t get my reference, only that this weirdo new kid was really bad at paraphrasing pop culture.

I remember my mother trying to teach me to speak more “properly”  and was making me do the whole pronouncing the “h” first in wh words like “over hwelm”. Needless to say, my new dialect went over like a lead balloon in the 8th grade social scene.

I remember thinking that McDonald’s was a family business.  The animals for the meat were sent to McDonald’s kitchens by Old McDonald’s Farm. I had not seen the farm MacD/McD written when I came up with this theory.  Of course, being very literal, I kept thinking about this when I read Animal Farm for the first time (hey, if you don’t know what it’s about it’s an interesting and occasionally charming story about a community of farm animals and nothing more…this is why it shouldn’t be given as summer reading to 11 year olds.)…  I think I may have volunteered “I don’t think they were sending Boxer to the glue factory, but to McDonald’s instead” to the conversation once school resumed.   I should have been wearing a helmet, what with all of the lead balloons I was apparently carrying about.

But the most horrifying and dramatic one happened in 5th grade.  We were being shipped to the middle school for a day for a sort of peer orientation.  A couple of days before we were given a slip of paper with the name of a 6th grader who would be our guide through a day in the life of middle school.  My person’s name was possibly the most Greek name in the history of the world.  When I got home, my mom told me that my guide was probably new to our country and I should make her feel at home by learning about the history of her land and culture.  So I sat down to read information on Greece from our ancient, outdated encyclopedias.  The next day I was positive that I would be making a connection with this Greek guide-ess, because I did exactly what my mother suggested.  Well, when I met her she was like any other kid in the class. Her heritage was Greek, her grandparents may have been the first generation here in the US, and despite my many enthusiastic attempts to talk about something we both theoretically had knowledge of (all things Greek), she continued to look a little puzzled every time I opened my mouth and I don’t think she ever spoke to me again.

Those encyclopedias were classics though… I believe they were published in the early 60’s, so by the 1980’s they were fairly outdated, but still they were my only source of information for writing papers for school. After all, children, this was pre-internet.  For some reason I thought the library was for people who were not fortunate enough to own their own set of encyclopedias.  As my folks weren’t involved in my academics aside from comparing me to cousins and family friends and pointing out my foibles and failures, I was responsible for figuring out what and how I was supposed to get by.  I didn’t know until high school that there were techniques for structuring essays (clearly I have disregarded them in my adulthood, my apologies) or methods by which to gather information.  If I had been an alien from another planet, observing human life, I would have incorrectly assumed that essays are written by yelling and shaking a fist in the air and throwing desk accessories and walls and people, while the younger member of the species sits in a chair, head hung low, and smudges the paper with pencil and tears and eraser dingles.   I am so grateful, now, that I have these memories though, as I remember writing endless papers (yeah, there is a surprise) and reading the encyclopedias from cover to cover (starting at age 4) and now it is so clear why all of my papers were returned with red question marks next to every fact.  It just took me a long time to grasp that information provided by parents is not always 100% accurate.  It took the challenge of educating my own child, for me to realize the important of accurate and up to date information to be used for academic purposes, and also where it was ok to to make some things up along the way.

Anyone want to share some of their childhood silliness?  Promise I’ll laugh but only if you do!

xo

B

Label Making.

23 Apr

labels

Labels.

Originally uploaded by CleverIndie

Awhile ago, before we really understood what was going on with Alex, I blogged about my label maker…

I really have stopped using it (yeah, not so much disorganized as trying to get rid of the unnecessary things and not commit to keeping them by putting them in a box and labeling them, but not totally committed to….let’s just say my brain is elsewhere… and at this rate I don’t know if I could find it if I needed to)

Before Alex started pre-school he was obsessing over my label maker.
As a reward for doing his best (with anything really) I would let him use my dymo handheld label maker to print one label.

I figured he might type his name, maybe the alphabet A-Z, perhaps some numbers…He took to typing things out in the way one might use a speak & spell…

This image consists of all of the labels he made over the course of a couple of weeks.

Today.

28 Jan

We see glimmers of what my brain is calling “interactive Alex” today…

But not much, not as much as has become the norm for our family.

Alex tries his hand in imaginative play on occasion, but he is pretending to pretend if that makes sense. He checks back every couple of minutes “it’s just pretend”  if we join him in pretending, to encourage him to explore, he often informs us “It’s just pretend Mama” or “Daddy, we are pretending” and need reassurance that the world hasn’t actually changed into the world we are pretending and that all of us haven’t lost our marbles.

Yesterday evening, he found a pebble that he had found at school before the winter break.  We think it is a pebble. We kind of hope it is a pebble and not some petrified parking lot weirdness he picked up between Christmas carols with the rest of his school, where the kids were outnumbered by parents and cameras.

He announced “This is Fred” from the other room.

“He is my best friend” (I resisted the whole “I thought I was your best friend?!?!” thing, not the time or place).

He was holding him sweetly in his little cupped palm.  I waited for him to inform me “I’m pretending. Fred is just a pebble. Pebbles aren’t friends, that’s silly. *insert artificial, forced laughter here*”

But he didn’t.  I dipped a toe into the pool to test the imaginative waters.

“It’s almost bedtime, does Fred have a bed?”

“Oh no! Where will Fred sleep?” he quietly rubs Fred with his finger and whispers into his cupped hand, soothing Fred.

We locate the origami box we made together (together = me: folder + Alex: telling me I’m doing it wrong even though he’s never done origami in his life and he picked the paper- a sheet of orange for him, a sheet of blue for me).  Alex takes the squished origami star (from a lady in hawaii who sells them on etsy by the bag) from it’s station near his piggy bank and declared it to be Fred’s pillow.  I look for a blanket.  Alex was definitely not down with using easter grass as a mattress, but he opted to use a wad of it as a blanket, for Fred.

It was then determined that Fred really wasn’t tired, but he wanted dinner.  Apparently he eats minerals.

But he had no place to sit. I found the funny tin from the Wasabi gumballs (gross. not worth the novelty.) and a small lipbalm slide tin.  Alex declared the smaller tin to be the couch, the lid is Fred’s widescreen HDTV (Alex is precise about the names of things), the larger tin is Fred’s Den.

Anyway, at this point we are probably 30 minutes into the Fred thing. It’s a record.

The evening continues and Alex tucks him into bed, and leaves the box near the phone in the kitchen and then decides that Daddy will probably not mess with Fred and it’s ok to leave Fred on the nightstand next to Daddy’s side of the bed.

Alex was spending the night in the big bed with us, for extra snuggles and he wanted to keep an eye on us (and us on him, but don’t tell him that, he’ll deny it).

Still, no announcement of the happening of any pretending…

I was very, very worried.

He woke up this morning, mid-sentence.

“Galileo CD is not in the CD book. Baby Galileo has dark blue.”

I am used to this, we lived like this since  he started talking. He didn’t even look at me. He climbed over me and onto the floor.

“Good morning Fred” He removed the tiny pebble from it’s box and handed him to me

“Good morning Fred, welcome to your day! It’s going to be a good day!” Alex seemed happy about this.

He turned toward me but didn’t look at my face.

“And then we will put the CD in the Philips CD Player and I can hear it.”

He turned around a walked out the door.  Not his enthusiastic little tippy-toe run. He walked, steady.

He continued to describe the CD. I followed him and asked questions.  I suggested he go to the potty and I would look for the CD in the CD book.

It isn’t in the book. I started having that same old panic I haven’t seen in awhile.  Alex fixates. If I can’t find the CD we are going to hear about the CD for weeks on end.  He will not be able to function until the CD reappears.

He puts Fred on the bathroom counter and I tell him that I can’t find the CD, but I will see if we have it in itunes.

Thankfully, it seems that some flexibility has remained and he does not protest. But he does follow me around telling me about the details of the CD and singing some of the songs (he sings the notes to classical music, so I’m getting words and soundbites as he tries to reach me fully, so I understand the exact thing he is looking for. Yes I realize this is a huge thing in regards to communication, but there is so much to this that isn’t quite right that I can’t quite explain it effectively, it needs to be experienced to be understood).

Through process of elimination I figure that the Baby Einstein Galileo CD is probably the lullaby CD (there are a few shared songs), so I grab a blue cd and burn it.

He is so excited when I tell him what I am doing.  We hear the computer’s whirring stop and we go to get the CD.  I take it out and hand it to him.  His eyes are twinkly and dreamy, he is smiling, his voice squeaks “You made this for me!” and then he looks at it.

It is not the Baby Galileo CD. It is a blank blue metallic CD that I burned for him.  It does not look like the Baby Galileo CD that is taunting him from memory.

He tells me it doesn’t have the words on it.

I offer to write in the name of the CD for him.  He agrees this is a good plan.

I write the name of the CD for him and his face falls, he is getting distressed that he can’t reach me- that I can’t understand him and magically duplicate the CD-including the artwork, on demand. He thinks I don’t understand.  I do understand him, so very well, but this rigidity of thinking won’t let us meet anywhere that a solution can be found.

My sugar drops at this point and I tell him “cd from the computer or no cd”

“No CD”

I make us breakfast and we eat breakfast in bed.

And he remembers Fred.

Who is now missing.

And Alex is very upset and while he has returned to his rigid thoughts and lack of flexibility, his imagination (he isn’t pretending to pretend to blend in like he often does) is a little wilder…

I just want to hold him until everything is calm and bright again.

I want to make emergency appointments with all of the specialists and his pediatrician, not because he needs them today, but so I can say “See, this is what it was like before we learned that he has different needs!  See!  We aren’t crazy dumb parents.  This is real. Now help us and help him!”

But Alex needs hugs and he needs to sing the notes to Ode to Joy (oddly, in a Tom Waits “voice” today…) over and over and over and over and over and over and over again.

My ears are ringing, my eyes are stinging, I am exhausted and angry and sad and frustrated.

Oh how I wish there were a planet just for us.

How I wish I hadn’t taken the progress for granted the little bit I did…Did I jinx it yesterday when Jeff said “He’s doing so well all of a sudden” (while he was at school) and I tried to quiet my brain from the thought “ok, so what is going to f it up?”  Life has been that way, Jeff calls it Big Luck- amazing fortune followed by dramatic misfortune…. This is no exception…

How I wish I could express the differences without sounding as though his differences (that we love as part of him) are terrible or not of consequence or what some folks would call normal as components, but in a specific combination is means my kid needs extra care in all parts of his day.

It’s hard to paint the picture because I haven’t found the proper brush just yet….

Hugs all around,

xo

Bek

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