The #Rword – Times have changed but still there is work to do

best-buddies-r-word-rally

A few years ago, I wrote the post below because an old friend of mine emailed me a flyer she found from a Bike-A-Thon we participated in when we were just 12 or 13 years old. I was shocked when I looked at it – shocked that this was acceptable back then.  But it was and I am sure we did not think a thing about it at the time.

I wrote about it because I thought it was a good example of how far we have come regarding the use of the R-word. Not quite far enough, but we have made some headway.

My belief in how far we have come has been shaken a bit and that comes as a rude awakening…..

  • When I hear my neighbor through the wall, screaming at someone “That’s ‘F-ing R-word – ed” –  I know that we still have a lot of work to do.
  • When I call someone out on Facebook for posting a meme that says “You look like a ‘F-ing’ R-word” and the response I get back is “I’m sorry if I offended you but they really do look stupid.” Not only does the reply make it glaringly obvious that they do not understand the reason why we object to the use of the word (if you mean, STUPID, then just use STUPID!) but also- I know that we still have a lot of work to do.
  • When a co-worker makes a mistake and says to me “I’m really not retarded” – I know that we still have a lot of work to do.
  • When I realize that some of the people around me only refrain from using the word because I am there and because they believe they are offending me because of DC and not because they understand why it is offensive and degrading to be used with anyone at any time – I know that we still have a lot of work to do.
  • When the use of the word “Libtard” has become so commonplace recently, that no one seems to object to it…….

I am SURE that we still have so very much more work to do…..

So, take a look back to see and be proud of just how far we have come, but remember that there is still so much more work to do.

From April 2015:

Bicycle races are coming your way…. (How the times have changed)

 

Bicycle Long ago (long, long ago) when I was 12 or 13, my friend Sue and I participated in a Bike-A-Thon. We met up with a couple of friends Joe and Ron, who were also participating. I remember it being a lot of fun with the exception of Susan smashing into and ruining Ron’s bike gears. We had so much fun that we went around the route twice (much to the dismay of the people who pledged by the mile – I was young; this did not occur to me at the time).

For years afterwards I tried to remember what this Bike-A-Thon was for. What cause were we supporting? No one I asked could remember either. As an adult, when I think back on it, yes we had fun, but I am horrified that this organization thought it was okay for a bunch of 12 and 13 years olds to ride their bikes down these very busy main roads. It was not like it is today, roads were not closed or even sections roped off. We were on our own on these very busy main roads, most with no sidewalks or shoulders, until we came upon a check point. But this is the way it was. We didn’t think a thing about it back then.

Well, Susan was cleaning out her mother’s attic a week or two ago and found the actual map of the course we took on this Bike-A-Thon and on it was the name of the Bike-A-Thon.

Backing up for just a minute. This morning I read an article that had the R-Word in the title. It was a good article and I wanted to share it (I eventually did), but I was so apprehensive about the R-word in the title. It needed to be there, it really did, but I was so uncomfortable with it that I really thought a lot about it before sharing it.

Having said that, below is the map that my friend found. She was just as apprehensive about sending it to me as I am sharing it here. Bike-A-Thon My heart skipped a few beats when I first saw it. I sat on it for a few weeks, but I thought that if you are as appalled as I was (and still am) at reading the name of the Bike-A-Thon, then let’s look at it as a glowing example of how times really have changed. It is so hard for me to believe that back then, this and a few other words I am guilty of using as a child were just okay. We didn’t know any better back then. We certainly should know better now.

I have gotten into plenty of discussions over the use of this word. Most of the discussions have been with people who really didn’t understand what the problem was as long as they were not using it to disparage someone with a special need – but they ARE! They are using it as slang for “stupid”. They are taking a word that was once used as an actual diagnosis and using it to describe “stupid”. I really do not understand why this is so hard to explain to people.

****

A version of this article was published on The Mighty – When an Old Flyer Reminded Me How Far We’ve Come With the ‘R’ Word

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Holy Inappropriate Conversation, Batman! – Stories from the Dental Chair

DENTAL

I had a dental appointment last week. Years ago, I requested never to be scheduled with one particular hygienist. The first time I saw her, I left there feeling as if my mouth had been ripped apart. As it turned out, she has a child with autism. I made the mistake of telling her that DC also has autism. Mistake? Yes! Mistake! This was the most uncomfortable and painful appointment I have ever had! Painful – because the more she talked about her son the more aggressively she cleaned my teeth. Uncomfortable – because the stories she felt compelled to tell me about him were just unbelievably inappropriate (in my opinion) and very uncomfortable for me.

I have friends and we do feel relatively comfortable talking about our many issues with our children, but never, ever would I speak of these things with a stranger or here in this blog. Her stories went above and beyond anything I could even imagine. In general, I am usually willing to talk with anyone about autism. I am no expert and can only speak to DC’s autism, but I am always willing to talk about it if someone feels the need. It did not take long for me to realize that she was not looking for someone to talk to, she was just really looking for someone to shock and this conversation was not just for my benefit, it was for the benefit of the entire office.

When I arrived for my appointment last week I discovered that they had scheduled me with her again. I couldn’t ask them to switch because she was standing right there. She didn’t remember me, and I specifically did not mention DC…. but it didn’t matter – she had just gone through a divorce…….

sigh………

I left there with my mouth torn to pieces.

This appointment and the memory of my first appointment with her reminded me of a post I wrote a few months back which was written about what I will share or not share. I am re-posting it below as a “summer rerun”. Everyone has different ideas about what they feel comfortable sharing, but there are some things that I, personally am not comfortable in sharing here – that’s just me. I am sure there are people that think that I share too much and that is fine too – I am comfortable right where I am..

What to share? That is the question…..

The answer….. for me, not everything.

A few days ago I came across this post from Diary of a Mom – online privacy – part a million. Coincidentally  I had just had not one but two similar conversations just last week.

Yes, I do write about my son DC. Whether he understands it or not, I do tell him that I write stories about him. I do tell him what I am writing about. I try very hard not to write about anything that might embarrass him even if I believe he will not or does not understand it. There are so many topics I will not write about.

Good Grief ! I was so on the fence about writing a story about toilet paper that it took me two days to hit “publish” and when I did finally publish, I had to disguise it as paper towels:

In a post a few months back, I wrote that I do not buy paper towels and I do not, but just for the sake of this post, let’s just say that I do…….

(you can see, I am over that now)

I find it much easier to explain autism, HIS autism by telling specific stories about how his mind works, the things he does or says, the many things he is obsessed with, his likes, his dislikes and some of the issues we face. At times I will use humor to tell a story because at times he is funny, the situations are funny! He knows he’s funny. I tell him he is funny. I may be laughing at the situation –  I am never laughing at him.

I have some very good friends, many of whom also have children with special needs. I am thankful for them. We are all somewhat in the same boat and even though autism is not the common diagnosis, we all seem to have many of the same issues. They are the people I can share the “Holy S#!T, how is this my life?” moments with, because at times we all just need to tell someone. They share with me as well. You really don’t want to be in the room when we are all together, trust me. We are able to discuss issues that I can only assume most NT parents do not and would not discuss with their friends (DC is my only child so, that is only an assumption on my part). Those conversations remain between us. They are not written about – ever.

Recently a few people suggested that stories about certain behaviors, “growing pains” and other such topics should become a part of this blog. They will not be…

I understand that people might look at this type of information as knowledge or what they may have to look forward to – I do, but there are plenty of other resources and blogs out there that will and do share this sort of information, some cringe-worthy (to me, maybe not to anyone else) and some handling the subject quite delicately but I don’t feel the need to do that here. I am not saying they are wrong. I am certainly not judging anyone – people have different views on the subject of sharing, this is just mine. It is not for me.

We have our good days, we have our bad days and I almost always learn something from the bad days. I may sometimes write about or mention the bad but not usually in specific detail.  I will just about always write about what we’ve learned or have been able to figure out from both the good and the bad. I hope I have not written anything that would embarrass him, I don’t think I have. Everyone’s perspective being different; maybe to some, I have. I do hope that in my almost two years of blogging you might by now have a small snapshot about DC, HIS autism, his triumphs, the progress he still continues to make, the way his mind works and most importantly that he is a happy guy who loves his life.

I’ll leave the rest to others…….

 (Here is another post from Autism-Mom along the same lines that has been published since; PROTECTING HIM ONLINE – be sure to give it a read.)

 

 

 

Bicycle races are coming your way…. (How the times have changed)

Bicycle Long ago (long, long ago) when I was 12 or 13, my friend Sue and I participated in a Bike-A-Thon. We met up with a couple of friends Joe and Ron, who were also participating. I remember it being a lot of fun with the exception of Susan smashing into and ruining Ron’s bike gears. We had so much fun that we went around the route twice (much to the dismay of the people who pledged by the mile – I was young; this did not occur to me at the time).

For years afterwards I tried to remember what this Bike-A-Thon was for. What cause were we supporting? No one I asked could remember either. As an adult, when I think back on it, yes we had fun, but I am horrified that this organization thought it was okay for a bunch of 12 and 13 years olds to ride their bikes down these very busy main roads. It was not like it is today, roads were not closed or even sections roped off. We were on our own on these very busy main roads, most with no sidewalks or shoulders, until we came upon a check point. But this is the way it was. We didn’t think a thing about it back then.

Well, Susan was cleaning out her mother’s attic a week or two ago and found the actual map of the course we took on this Bike-A-Thon and on it was the name of the Bike-A-Thon.

Backing up for just a minute. This morning I read an article that had the R-Word in the title. It was a good article and I wanted to share it (I eventually did), but I was so apprehensive about the R-word in the title. It needed to be there, it really did, but I am so uncomfortable with it that I really thought a lot about it before sharing it.

Having said that, below is the map that my friend found. She was just as apprehensive about sending it to me as I am sharing it here. Bike-A-Thon My heart skipped a few beats when I first saw it. I sat on it for a few weeks, but I thought that if you are as appalled as I was (and still am) at reading the name of the Bike-A-Thon, then let’s look at it as a glowing example of how times really have changed. It is so hard for me to believe that back then, this and a few other words I am guilty of using as a child were just okay. We didn’t know any better back then. Now we certainly should know.

I have gotten into plenty of discussions over the use of this word. Most of the discussions have been with people who really didn’t understand what the problem was as long as they were not using it to disparage someone with a special need – but they ARE! They are using it as slang for “stupid”. They are taking a word that was once used as an actual diagnosis and using it to describe “stupid”. I really don’t get why this is so hard to explain to people.

A version of this article was published on The Mighty – When an Old Flyer Reminded Me How Far We’ve Come With the ‘R’ Word

Just Who Is This DC That You Speak Of ? – One Year Anniversary

Happy Anniversary

Happy Anniversary

It has now been full year since I began writing this blog. Over the course of this year, a few friends have asked, among other things, why I call my son “DC”.
DC is not my son’s name. This is confusing to my friends because I do post this blog on my personal face book page. Obviously my friends on my personal page know my son’s name, they know our last name, they even know where we live. BUT because this blog is public, and is shared on a number of accounts and networks via WordPress (not via my personal page), I do not use his real name, our last name or our location.

My personal face book page is set for “friends only”. Nothing I write about is anything that my friends don’t know or haven’t heard about DC. I am very proud of my child, as I am sure my friends are very aware of. 😃

As for my other accounts; they are set all up using my first name only, no location. I am sure if one tried hard enough, they may possibly be able to figure out what state we live in, but really not much else.

My Instagram account is not only first name and no location, but it is also private. 95% of my followers and the people I follow there are other autism parents and CharityMiles friends. Quite honestly, they are all wonderful people and I really would not have much of a problem divulging our location or last name to most of them. A few do know Dc’s name and that is fine with me. There I see compassion, camaraderie and the support of each other, that I really don’t see anywhere else. We all seem to have different opinions, but we all seem to embrace our differences instead of attacking each other.

Another question that I am asked every so often is why I write a blog.

I never really intended to write a blog. My blogging began one day when I was writing an extremely long response to a blog post that I had just finished reading. After I hit “post” I decided that writing a response to this post on someone else’s blog was not going to make me feel better about the topic being discussed. I opened an account with a local on-line news publication and pasted the response I had just written onto a blog page and published. After a month or so and only a couple of posts; finding the local publication blog not-so-very user-friendly, and because it was local, I felt I could not share it anywhere else and still remain somewhat anonymous,  I moved to Word Press. I was so worried that I would never have enough to say to sustain a blog, but I went for it anyway. It turns out that I do have a lot to say. I don’t know how many people care to hear what I have to say, but I say it anyway.

Originally, I did not even post the blog on my personal Face Book page, only on my “community page”. Before posting it there, I went through 3 years of posts on the community page and it’s accompanying website , deleting anything that could be considered too “local” of a story.  I wanted to be sure that our location was not too apparent AND that the names and locations of the people featured in these now deleted local stories were also not on display.

(I have just discovered that there is a way to post local news and events on that community page to a specific audience, so I can begin posting local events and news again.)

I did begin posting the blog to my own page at the urging of a friend. No, I am not naïve enough to think that private postings or ‘friend only’ postings are really 100% private, but I have taken all of the precautions I feel that I can and I am always looking for others.  I will continue to call my son, DC and write about “a local theater”, a “local college”, a “local baseball league” or a “local ice cream shop”.

I read many blogs as well. Many of the blogs that I do come across are written by parents of younger children. Most are wonderful and very informative. There are many that I absolutely love,  but I always feel that the parents of adult children do not get to have an equal voice in this community. We are cast aside, or worse, berated. I am not in any way saying my blog is the voice of parents with adult children, I don’t think there are enough people that actually read it, in the first place, to even consider that, but I am ONE voice and ONE opinion in a sea of blogs and opinions that do not seem to make room for the parents that have been at it  for many years now.

I was very tired of being preached at by those who have not reached this point in their child’s life and constantly being told how to feel. I understand where they are coming from and in turn I believe they can or should try to understand where I am coming from. Whatever else you might have to say about me, I  have done a good job of raising DC.  Of course there was help along the way but as a single mother going on 21 years now, most of it fell to me alone.  I truly resent the fact that we, as parents are being made to feel as if after all these years,  we’ve got it all wrong.

I’m hoping a little insight into what comes after “school age” may go a long way in getting people to stop and think before making blanket decisions, accusations and statements that may not affect their child the same way it will affect mine (more about this at another time). There has got to be some give and take. Everything is not good for everybody.

Having said that, I have learned quite a bit from other parents by virtue of this blog. I don’t always agree with every opinion and my readers, I’m sure, do not always agree with me, but I truly believe writing this blog and getting some of the feedback has helped me see some issues a bit differently or at least why some parents see things the way they do. I can only hope I can and will be afforded the same courtesy; and so far I have.

Life tends to be very different when your child “ages out”of the school system and at other times, it is exactly the same. When you are waist deep in school, therapies, programs and IEPs, what happens after 21 is not high on your priority list. Of course it is a priority and of course it is in the back of your mind but, the here and now takes precedence. There are so many new and different issues to consider, and it all comes to hit you in the face much faster than you expect. Your views and opinions can change dramatically from what you hoped for when they were young and what you hope for now. Your life changes drastically, while not changing at all.

In an earlier blog I wrote:

“If I were to live forever, I would not change a thing about my son. He’s happy almost all of the time. He loves his life. He is in his own little happy world, but he won’t always be able to live in his own world, he will someday have to live in the real world. Then what?”

He will, someday have to live in the real world without me.

So I will keep writing with the hope that a few people might read and think a little bit about the future. I would never say that spreading awareness is not a good idea, it IS definitely necessary, but…..

all of the awareness in the world is not going to keep DC safe and happy when I am no longer here to protect him…..

 

 

Pants on Fire

Pants on Fire

Pants on Fire

We have heard a lot about RESPECT, AWARENESS and UNDERSTANDING over the past few weeks (End the r-word) and we will hear quite a bit more next month during Autism Awareness Month.

There are times when, we, as parents of children or adults with special needs, do have to go to extremes or try many different tactics to get information from our children. Communication is not easy with my son. He can/will tell me what he wants but anything else is difficult. An answer to a simple question, if I can get an answer at all, can take a good long time and a lot of work.

But….We do not “trick” and we do not lie.


Having said that, when I drop DC off at an activity or event, I do have to tell him verbally and in sign that I am going for ‘coffee’. For some reason, and I really have not been able to figure out why, he knows this means and I am coming back to pick him up. I consider this a “little white lie” , not a big deal. 90% of the time, coffee will be involved in whatever I am doing or wherever I am going.
If I tell him I am going home, or to the store, my departure is prolonged by :
“Mom is coming back?”
Yes, DC.
“Mom is never coming back”
Of course I am coming back, DC.
As I start to walk out of the door, he moves on to – “Mom, come here please”
…………………….and the whole process begins again.
For some reason he accepts ‘going to get coffee’ and it is all good.
For the record, in case anyone thinks he’s been traumatized at some point by being left somewhere……. I have never forgotten to pick him up, I have never even been late to pick him up from anything at anytime, so I really don’t know where this comes from, but ‘coffee’ seems to be okay with him. Why I have to use the ‘coffee’ sign is just another mystery.
This sort of thing, which actually makes him feel better, and is not hurting him or anyone else, is fine with me. I don’t really consider it a lie and it is certainly not a trick.

A few weeks ago, a friend and I were having lunch in a restaurant that is staffed by special needs adults. They do, of course have supervisors, but the wait staff and kitchen staff are all adults with various special needs.
This particular day, my friend and I were sitting at the farthest corner of the restaurant.
I am a “people watcher” by nature, but if the following exchange could be heard in detail by us, sitting so far away, it was without a doubt, heard by the customers sitting closer to the front.

I noticed a staff member approach the restaurant supervisor, who had been eating at her desk since we arrived, with some sort of candy/food wrapper. I really didn’t hear what the first staff member said to the supervisor, but the supervisor replied, “I don’t know who was just in the bathroom”. So again, being a parent of a special needs child and having quite a few friends with special needs children, I surmised from this (loud) statement  that someone was sneaking food in the bathroom.
I get this, I get how this could be a concern. Did it have to be announced? No, but I do get it.
I continued to watch because, still eating with one hand, she picked up the wrapper in a scissor hold (between her index and middle finger), lifted it up into the air over her head and turned it side to side as if she was looking for finger prints or something. The production she was making was kind of funny and way over the top. It was without a doubt entertaining, anyway. I assumed that was the end of it, but what followed was not funny or entertaining at all.

She put her food down, got up from her desk and went over to the counter that looks into the kitchen area. She raised this wrapper over her head (still in the scissor hold) and asked, “Who left this wrapper out here” (Not “Who left this wrapper in the bathroom”).
I could hear a few employees answer, “Not Me”, “It wasn’t me”.
She then said, “I just wanted to know where I can get these”. Her assistant joined in by saying “They look so good, they have raisins and ___,  (I couldn’t hear the other ingredient she mentioned) we just want to know where we can get them”.

At this point I could hear someone reply. I could not hear what they said, but someone did reply.
The supervisor then asked “Did you buy them yourself or did your mother buy them for you?”
I heard the employee reply that her mother bought them.

As they walked away from the counter, proud of themselves for tricking the employee into confessing by taking full advantage of her disability, the Assistant said, “I knew it was her” – the Supervisor replied, “Of course it was, she didn’t say a word when I asked who left it”.

Again – far side of the restaurant – we heard all of it.

RESPECT, UNDERSTANDING, AWARENESS, TRUST and let us add CONFIDENTIALITY???? What do we do when the people entrusted to care for and work with our children do not seem to know the meaning of any of those words?

Apparently, we still have so much more work to do.

(Just as an FYI, Normally I would have said something to her, her supervisor or both right away, but I was 95% sure that the person they were tricking into confessing was the son of a friend of mine. I wanted to tell my friend the story before giving the manager a heads-up and a chance to come up with a different version.)