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“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

Bunny Deux: Electric Bunnaloo

13 May

It took two weeks of caring for my wee baby bunny, Frankie, to realize a couple of things:


1.  I am a rabbit person. 


I love dogs. I tolerate cats (allergic to most, with the exception of Maine Coon Cats). I am obviously not a cat person (before anyone gets all knotty in the britches, I like cats if they belong to other people. I just don’t want felines of my own.)  I am surprised to find out that maybe I am not a dog person either.  I am a rabbit person.


2.  Baby rabbits have boundless energy.  I do not. 


3.  Having only my one kid (the human one) has been gnawing at me forever and as I have been closing in on forty it has been gnawing less idlly and more with the ferocity of a beaver on a dam mission or a wood chipper on a past it’s prime Christmas tree.


4.  No. 2 has helped emmensely in coming to reasonable terms with No. 3.



Still, No. 2 kept needling at me kind of in the way Frankie’s tiny baby bunny talons do as he climbs all over me like I’m the strategy board for his future takeover of everything that is and will be.  


I read up, like the diligent autodidact I am and came to realize that the guinea pigs were a gateway pet and now, to preserve sanity (mine) and improve the life of my newest little one, I would have to find a suitable, Lagomorph life partner for Frank.  Also, playtime with the piggies wasn’t cutting it (though it was adorable as there was a definite kinship and the piggies followed him around with the glee of toddlers after an older sibling, complete with adorable waddling and urinating during play) and as Frankie started physically eclipsing Oliver and Dave, the safety of the pigs was becoming a concern (guinea pigs are extra delicate when challenged by the strong hind quarters and boisterous boinging of a bunny). 


There were many considerations.  Most of them had much to do with avoiding the conception of a billion baby bunnies in my condo.  As I was planning on having Frank, and any additional rabbits, neutered/spayed, I decided another boy bunny would be the best partner for him, unless I could find a snipped cougar bunny and fast as he needed bunny companionship to help meet his energy.  


And then this showed up on Craigslist: 

  

  

There was a note on the listing saying that the last rabbits would have to be sold by 5pm or those baby bunnies would be heading for “Freezer Camp”.  The picture is of the blue Silver Fox buck/boy.  He was the same age as Frank. FREEZER CAMP. 


*gulp*


I knew I was in trouble.  I knew I, even though I am not a vegetarian, would not be able to withstand the burden of knowing this particular creature was killed because I didn’t take action.  (Don’t fret, herbivore friends, I battle with my own hypocritical thoughts and behaviors each and every time I slip on my shoes or raise a physician prescribed nibble of flesh to my lips. I do.)


I talked to my kid about it and read him the craigslist ad.  


“We need to go get that bunny, Mama.”


So we did.


We put Frank in his hamper, hopped in the car, and drove up to Port Charlotte to meet Otis.  


That’s when we learned that Frank is a really tiny, possibly dwarf, rabbit.


Otis is a meat rabbit.  READ:  very large.  Frank: 1.5lb  Otis: over 8lbs. (Frank has since grown quite a bit but is clearly the racing model to Otis’ utility/tank/steamroller body type). 



Here’s Otis, at home, the first week.

  


  



There is more to the whole Otis tale, but it just dawned on me that I have gone completely non-linear.  I think I failed to post anything about how I went to go get hay for the Guinea Pigs and there were baby bunnies and I put my hand in their enclosure and this little black and white bunny, who looked kind of like a Boston Terrier and a bit like a French Bulldog with bigger ears, immediately started licking my hand.  I asked to hold him. I did. And an hour later Frankie was settling into life at home and I was frantically reading everything about rabbits. 


Here’s baby Frank:  


  




And fast forward a couple of months…

  

Before you are pummeled by the irresistible cute of a baby bunny,  please please please do your research to prepare for their needs.  They are a joy and require very specific and constant, involved care.  One fantastic resource is the House Rabbit Society. 





Rare Disease Day Festivities

1 Mar

Whooo has a rare disease?  

I do. It’s not really that rare in this country, it’s just that we don’t routinely screen parents prenatally (they didn’t check for it in the two rounds of genetic counseling I went through, having nearly zero family medical history, and hahahahahahhahahah, of course I have mutations from both sides of the gene swamp.  The universe is a $&@!ing comedian.) and worse, only two states in the US routinely screen newborns.  For the love of Pete!

This is wrong wrong wrong wrong wrong.

So, here’s how we can make the medical establishment pay attention (that isn’t as likely to get us hauled in like my previous plan to flash my pale, porcelain white boobies while holding up an anti-legume placard to illustrate that not only darker skinned males, but also pasty females, can have this disorder. Don’t fret, my dears,  I’m not flashing anyone (not on purpose, anyway. Sorry about the other day, new neighbors across the way).)

In honor of all of those living with Rare Diseases, please (PLEASE PLEASE PLEASE PLEASE) consider signing the petition over at G6PDDeficiency.org.

Dale Baker, the force behind the site and a lifesaver, is collecting signatures to present to hospitals and physicians to super-emphasize what all of us know, that routine newborn screening will save lives.

It will take you just a minute, but it can save lives and make all of our communities healthier. After you sign, or even if you don’t sign, please consider tweeting a link to the petition or this blog post. Awareness is powerful. Thank you. Thank you.

Thank you.

You are the best.
G6PD Deficiency Newborn Screening Petition

Tiny Drawings

6 Nov




Originally uploaded by The Happy Aspie

Alex hands me his completed homework & announces “I like to draw a picture with my name. I draw a different one everyday. Today, I made a square wave, sawtooth wave, triangle wave, and a sine wave.”

Whoa.

These things are tangible and for him, they come easier than multiplying single digits.

He also vocalizes the different sounds which correspond to the various waveforms.

I’m officially lost but not as far lost as when my last math teacher attempted explaining the concepts to me ad nauseam. I get it more now.  Maybe. 

Thankfully, this kid has great patience for his Mama, when it comes to sharing what he has learned thus far.

Whoa.

No Beans About It.

20 Jul

Fantastic article on G6PD Deficient patient diet suggestions.

I am a person with G6PD Deficiency (and female so I got my mutations from both genetic parents, which is a little more rare as far as probability goes, but not as rare as once believed.) I am raising a son with G6PD Deficiency and doing my best to not have him endure the oxidizing damage due to contraindicated substances that I have endured in my lifetime. I am hoping that by spreading the word and correct information regarding G6PD Deficiency that awareness will smother ignorance and stupidity that seem to come into play all too often.

Historically, it has been considered a disorder mostly of everyone but white females (and men, but men have been more widely studied and they only need one affected X to be fully deficient…) Women, need mutations on both x’s (one from each parent) to be considered deficient so we are less likely to be fully deficient, and more likely to be partially deficient, meaning we have one x with the affected gene instead of on both x’s. Once upon a time, the term carrier was used but the term partially deficient is coming into vogue as for many women, due to the particular variant or due to lyonization, it is a more accurate description. Of course, as is the case with many disorders that are believed to either include or exclude a particular gender, race, or geography, it is revealed that the excluded race or gender was never really studied, due to many circumstances, but it really is starting to look like an unfortunate tradition that has killed and injured so many people just because they didn’t fill the prejudicial mold and were believed to be categorically exempt or that it was an incredible rarity.

As it turns out G6PD is not as rare as once believed, particularly in females. G6PD Deficiency is one of the top 5 genetic disorders of pre-natal origin causing 26% of global common birth defects.

It is real and it goes beyond avoiding fava beans. The website G6PDDeficiency.org is a phenomenal resource on many aspects of G6PD Deficiency, including handy lists of contraindicated medications (don’t assume your doctor knows what is safe. Check and double check. I have found that a good pharmacist is worth their weight and seem to have a better knowledge of contraindications, but still I would check and double check and check again for good measure.

The article/page I have linked to, below, offers an excellent rundown of how we do need to be vigilant about what we put in our bodies, as there are different degrees of deficiency just like there are over 400 identified variants of this particular enzymopathy.

Why G6PD Deficient Patients Should Avoid Legumes.

I’ll post more about our experiences living with G6PD Deficiency as I get around to it. Awareness does seem to be growing in the USA. I was thrilled to see that the writers of the USA Network’s “Royal Pains” included a female patient they eventually diagnosed with Favism/G6PD Deficiency. I was even more excited when they suggested testing her young daughter due to the hereditary nature of the disorder. It was really fantastic to see awareness of this disorder and that it can impact females, as well, raised in entertaining “Royal Pains” fashion. Pretty great.

PLEASE PLEASE PLEASE consider signing the petition over at G6PDDeficiency.org.  Dale Baker, the force behind the site and a lifesaver, is collecting signatures to present to hospitals and physicians to super-emphasize what all of us know, that routine newborn screening will save lives.  It will take you just a minute, but it can save lives and make all of our communities healthier.  After you sign, or even if you don’t sign, please consider tweeting a link to the petition or this blog post.  Awareness is powerful.   Thank you. 

G6PD Deficiency Newborn Screening Petition
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