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

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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

You might be an autism parent if….

You put chocolate hazelnut butter in the nutribullet to smooth out some of the natural graininess to make it more palatable for your texture-sensitive kid.

(Note:  this experiment would have worked a bit better with a larger amount of this tasty stuff.  Unfortunately, I didn’t even think of getting him to try it again until I had polished off almost the whole jar. It’s not like I went weeks without that occurring to me.  A jar of Justin’s Chocolate Hazelnut blend only lasts a couple of days, at most, around here. It’s irresistible. Really. Our supermarket and Target both carry it, and the Maple Almond (so good on cinnamon toasts). You can also find it on Amazon: Justin’s)

He did ok with the Chocolate-Hazelnut, on warm toasted baguette, but not that enthusiastic.  He did eat three pieces of toast (small pieces) slathered with it, though, and that’s freaking amazing.   I also got him to eat three (individual raviolis) Amy’s frozen Ravioli even though they clearly had some degree of tomato sauce on them (I scraped off as much as I could. How am I the only person in our family who has zero Italian roots and I’m the only one who will touch a tomato, or sauce?!).  YES!

I’m still finding protein and fresh veggies to be a challenge for him, as he won’t eat nuts (Barney Butter thankfully is smooth enough, and available at Publix and Target(woohoo!) that he accepts it as a peanut butter substitute, as PB is off our menu due to G6PD Deficiency), can’t eat legumes (again, G6PD Deficiency is a factor) and he is mostly vegetarian (we are not, but he just can’t deal with the tearing and chewing of ANY meats), so he consumes quite a bit of milk and I make him a super-smoothie every couple of days with bananas, berries, hemp seed, almond butter, chia seed, yogurt, etc..to try to get at least some variety, as far as nutrients go, into him. He also really likes Life cereal and Cheerios, so at least those are fortified. He is growing and healthy, and the kid has a brain on him, so this seems to be working. Of course, I’ll never stop introducing new foods to him and now that he is older, he doesn’t protest but instead tries everything (serious progress!), so it is easier.

You can share your “You might be an autism parent if…” moments on two fantastic facebook pages:  You might be an autism parent if. and one of my favorite special needs parenting resources/communities:  Shut Up About Your Perfect Kid (seriously, if you don’t have the book, you NEED their book AND their Facebook community/page.  This was the first thing I read when I realized that this journey was veering way off path (and at the time, through what looked like an impassable thicket, plenty of prickers, nests of dangerous beasties, etc)…  Here’s a link to the book on Amazon: Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Children.

I also got him to eat fresh cherries (not fresh picked, fresh from the supermarket… we have been mostly housebound this summer… long story for another time) WITH the stem and stone intact!  So I’m not rocking the Lady Macbeth manicure from pitting the damn cherries this go around.  Here he is, after I carefully demonstrated and gave him instructions on how not to break his teeth but still enjoy a good, sweet, juicy cherry.

A frozen cherry did not fare as well:

Peace,

Bek

Tendencies, Traits, Talents: Aspergirls

Below is a link to an excellent list of characteristics, abilities, and talents of females with Asperger’s Syndrome.  This doesn’t, and shouldn’t, serve as diagnostic criteria or as a rigid checklist.  It is, however, a wonderful start to a female profile that may guide identification and disgnosis someday.  Some people have told me, “You can’t have Asperger’s! You are a girl!”  I’m not the only Aspie female who has heard that, or some variant of disbelief regarding this very specific label many of us have struggled whole lifetimes to locate, so we can access the tools we need, so we can be understood, so we can understand…

Well, like many myths and stereotypes, this one is unfortunately heard quite frequently by women, girls, and parents who are looking for answers so that they can find the information and tools to be the best they can be and lead fulfilling lives.  I don’t think females are less likely to have Asperger’s or be Autistic, but I do know firsthand that many of us are not identified in a timely fashion.  Of course, I also saw myth and stereotype delay my son’s diagnosis, so it’s not isolated to one gender but I do think it’s more prevalent for a few reasons (these are written with more of a focus on parents and children, but can apply to an adult as well. I did not include tailored descriptions below, for ease of reading.)

1. Perpetuation of Stereotype/Myth

2.  Inadequate updating/continuing education of professionals who provide triage to those inquiring with concerns about their child’s development.

3.  Some behavior typically described as “autistic” is more acceptable (historically) in girls than boys.  Thankfully this is changing, but the remnants of “ye olde gender stereotypes” still hang about like a thick, slippery fog.

4.  Lack of mindfulness & dismissal of parental concerns, by professionals, because of the perception that a simple, casual inquiry equates to the parent being a stifling, growth suppressing “helicopter parent”.  I’ve known a few moms who were scolded by their physicians for just asking questions about autism and their child.  It’s like the obsession with healthy parenting and healthy development and the concerns about “hovering”, perpetuated by those tireless soldiers of the mommy-wars, has become more of a concern to professionals than identifying legitimate concerns and addressing them in a mindful manner.   I worry that the obsession about “over parenting” does damage to first time parents and children.  We are all trying to figure it out.  We are all works in progress.  I think those that under parent and neglect their children are a greater worry, but it’s easier to criticize the parent that actually comes into the office with a concern than the one who doesn’t bring their child in and who doesn’t share their concerns with the physician.

It just worries me, bothers me, angers me, that one can still go to a specialist who will look at your child and say “but your kid doesn’t act like Rainman!”…  I’ve brought prints of the diagnostic criteria with us to educate where we find outdated information.  I do what I can.  I do this because I hear all too often of delayed diagnosis, missed disgnosis, and parents who won’t let the label be given because of myths, stereotypes, and misperceptions about what it means to be Autistic, in this era, in this country, and in our society.

We all need to stand up and spread the truth about autism, about autistics, about parenting autistics.  One extremely vital component of that is  the different ways certain traits manifest differently in males and females.

Click to go to Tania Ann Marshall’s fantastic “Moving Towards A Female Profile: The Unique Characteristics”, Abilities and Talents of Young Girls with Asperger Syndrome.

For a fantastic read on Aspergirls, please check out Rudy Simone’s “Aspergirls” at Amazon.com.  As an adult female Aspie, I found the book to be very helpful in understanding our inherent strengths.  It does offer suggestions for Aspergirls and their parents.  There is also a list which Tania Ann Marshall’s list reminded me of.  Rudy Simone’s list is more a chart comparing manifestations of traits in males and in females.

Surfers For Autism

We had the best day ever on Saturday.  Seriously.  EVER.

Biggest thanks ever to Surfers for Autism, the surfers, the founders, the volunteers, Fort Myers Beach, and FMB PD & FD.

I’ll be updating this post as I sift through the 789 images I took on Saturday when we were guest of Surfers for Autism.

They say that we (people with autism) are “Rock Stars”  so if we are, then I’d have to say that knowing them and being there with them on a gorgeous Saturday on Florida’s SW Gulf Coast was like the worlds most epic fantasy jam session ever, because we think they are worthy of the title as well.  Seriously.  If you had three wishes and could wish for anyone to play together, for you… That’s the fantastic and awesome I am trying to express here.

Where to begin…

We rarely go to the beach as days off and not-too-sick days rarely line up.  Also, the beach is sensory overload wearing a disguise that suggests that she (the beach) is a serene environment, but for us it can be overload starting at the application of sunscreen and escalating from there.

We did it though.  We went on Saturday.  I have proof!

Before the first run of the day:

Fort Myers Beach FD brought over a truck and handed out paint! Everyone painted and tagged! It was great fun and quite a masterpiece!

Alex painted these words on the wheel well trim: fire, 911, emergency, truck… I found a blank spot and painted his name, some hearts, and an orange penguin.

Alex didn’t know where to start so I told him, “just find a space that doesn’t have any paint and start painting!” So he painted words (you can see 911 in this image) and then he proceeded to paint all of those little rubber feely-bobber hairs on the tire orange. Nobody else had thought of that! (by the way, those feely bobber hair things are left over from the injection molding/tire making process. The NASCAR peeps have to cut them off their tires! Ahhh Viva La Google!)

Alex’s first surfers/guides/volunteers. The dads on the short kept commenting, “Oh that kid has it rough! Three total babes in bikinis!” It was pretty funny. They weren’t just gorgeous, they were incredibly patient and kind and warm and really made Alex feel so secure in that new and alien environment. I’m very thankful (for his surf goddesses! :-) When he came back to shore he had two more with him! One of the dads said to me, “That kids got talent!”.

For his 2nd run, he had another two fantastic guides. Corey and Marlene Lilly. Corey looks uncannily like Russell Brand and I was surprised when he spoke and his accent wasn’t British. He’s a really kind and mellow guy. He finds and picks up sand dollars with his feet. He brought one over to show us. I’ve never seen a live one… Corey also stopped by Alex’s sand digging extravaganza and talked to him and his dad.  And remembered his name.  These surfers, these volunteers, are brilliant at making each person feel wonderful about the experience.  Alex had a good second outing with Corey and Marlene and he was definitely more relaxed and chomping at the bit to get back in the water! After this we had lunch. Alex’s Oma (my mom) showed up just before he went for his 2nd paddle. We were so excited that she came by to see him surf!

That is my kid STANDING UP and SURFING and nobody is holding onto him! He stood up from his paddling/kneeling position, unaided, with the board gliding toward shore! I know! I was doing fine most of the day but that was it. I let my camera drop around my neck, started flapping my hands and started to cry some very happy tears and cheering loudly. His guides from the 3rd outing are not seen here but they were two guys named Jeff and Jim (or Bill. Spoken language keeps getting more challenging for me over time. It sucks, but it’s also a positive because it makes me more sensitive and aware when delivering any information to Alex who has a similar challenge).

I made this for him today:

Yeah.  I’m still getting goosebumps when I think about him surfing into the shore, with his hands out.  He amazed me.  He amazes me each and every day and has since he was born.  It’s not that I think he can’t do something, because he can do nearly anything he puts his mind to.  That being said, he can’t be neurotypical and neither can I.  We can put on an act that works in some situations, but that’s not us.  Surfers For Autism  has an incredible calm to it, that I rarely feel when with anyone other than my kid or by myself.   The reason for the calm, in a very large group of autistic people and their families, is that everyone there can just be themselves.  We pulled up to the lot next to Crescent Beach Park and I saw 5 kids in maybe 15 feet of sidewalk flapping and walking tiptoed.  I said, “It’s going to be a good day”.

And it was a good day.  It was the best day we’ve had in a very long time.  We deserved that and I will treasure that feeling probably forever, though we will have days to match once the 2013 Surfers For Autism season kicks off.

xo

B

40 Open Education Resources You Should Know About | Edudemic

A fantastic list of resources for adults and kids.  Documentaries, programming, information.  Oh my!  Check it out…

40 Open Education Resources You Should Know About | Edudemic.

I plan on looking at each resources and sending my kid links to “assignments” (watch, read, do, etc…) and cc’ing his dad on them so that maybe we can get out of the SSDD of summer break.   Not that my kid is just sitting in front of the TV, but he has been more self-propelled this year than ever before.  He has been teaching himself how to use Raspberry Pi, Linux, Python, Scratch, and more things that made me finally understand how overwhelmed and somewhat alienated and antiquated my parents felt when I became more tech savvy in the late 80’s/early 90’s.   I couldn’t remember a keyboard shortcut the other day, and I pride myself on my resourcefulness (read: I don’t ask for help unless it’s a last resort.  The results of this creed have found me in numerous situations learning experiences that would have escaped my eager grasp, had I not been endowed with such tenacity) but I went to holler an inquiry to Alex instead of seeking the answer the “me way”.

It’s surprising, to me, how technology has grown since I left the traditional workforce over nine years ago, due to illness.      It’s mind blowing, to me, that Alex’s education is largely technology based, but more organically than I would have imagined a few years ago.  Technology is there as a medium and I can’t imagine it having more impact than in a classroom for children with communication disorders, as the technology offers the versatility, when combined with traditional analog methods, to meet the needs of the kids concurrently.   Kind of neat.

So Alex has been playing with technology, this summer and  I have been flexing my problem solving skills. I’m trying to explore how we can integrate technology into our world, here at home, without investing in some of the ready to go tech that is so out of reach for us, financially, and in a pseudo-organic way so that it is less of a distraction, more of a functional tool, and less of a superpower with the ability to create human islands in a little condo in SW Florida.

Anyway, check out the link and the resources on that list.  There were some that I was familiar with and others that made me giddy with anticipation.

Did they miss any?  Please share, in the comments, if there are any you would add and I will do the same.

Hope your summer is going well!

B