Tuesday, May 27, 2014

So… we’ve had quite the week in the news, haven’t we?

Study: ‘Significant’ statistical link between mass murder and autism, brain injury” ~ Washington Post – May 21, 2014
Yes, that was the headline. If you read the rest of this article, it really doesn’t say anything of substance at all, but the headline screams “AUTISM  and MASS MURDER!”
In fact, somewhere mid-article it reads:
“The researchers stressed the study is “clearly limited” by the “anecdotal and speculative” nature of some of the published accounts. Lead researcher Clare Allely, of the University of Glasgow, emphasized the study did not suggest those with autism or Asperger’s are more likely to commit murder”
- But Still the Headline Reads Significant’ statistical link between MASS MURDER and AUTISM, brain injury”
Readers that may have taken the time to read further, are assaulted with a photo of Jeffrey Dahmer. The inference is, in this article at least, that due to some of the characteristics he had displayed, he may or may not have had some form of autism.
After displaying the photo of this very recognizable face, the article does go on to say:
“Despite the patterns that emerged in the study, researchers cautioned against sweeping conclusions. Neurodevelopmental disorders, they said, do not portend mass murder.”
I am sure very few people made it that far into the article. With the headline “Autism – Mass Murder”, and a photo of Jeffrey Dahmer, how much more would anyone need to read?
If one were to look closely enough at any of us, I am sure we all have one or more traits that can be similar to person with autism. These one or two traits, does not a diagnosis make.
Not all Autistics are loners or isolated as not all loners, shy or isolated people are Autistic.
Let’s not create a diagnosis to fit the ‘study’.

Santa Barbara: - May 25, 2014
My heart goes out to all of the victims and their families of this senseless act of violence. It is a tragedy that seems to be happening much to often.
This tragedy could have been prevented. There were warning signs, the parents saw these signs. They did what we have all been told to do after each and every tragedy that came before it – they reported their suspicions to the police.
“Police visited and interviewed the 22-year-old on April 30, after a family member became alarmed about YouTube posts by Rodger that mentioned violence and suicide. While Rodger’s parents and social worker were concerned, police found the student to be polite during their interview. He had taken down the alarming posts. Police cleared the call and left without taking any action. They determined that he did not meet the criteria for an involuntary mental health hold,”  –  It does not seem that the authorities have learned very much from these recent tragedies.
And again, right in the middle of the first article I read about this shooting were the words,  “the shooter had been diagnosed as a child with ‘highly functional Asperger’s syndrome.’ -  written just like that, in the article as if to say that the Asperger’s diagnosis was the reason behind the shootings, exactly the way it had been done in the Sandy Hook articles.
Just as in the Sandy Hook articles, this claim of an actual diagnosis is being disputed:
In an article published on May 25, The L.A. Times reported that Rodger family friend Simon Astaire said Eliot Rodger, the prime suspect in the shooting, was not diagnosed with Asperger’s syndrome, but that the family suspected he was on the spectrum. The claim contradicts an earlier statement made by the family’s lawyer
Both shooters may or may not have been diagnosed with Aspergers, we may never know for sure, but the fact remains that there is no evidence to support the claim that an Autism or Asperger’s diagnosis, played any part in either of these tragedies. They may have had that diagnosis or that diagnosis may have been suspected, but THAT diagnosis is not the reason behind these acts. Clearly there were other, possibly undiagnosed issues at work here.
They may just as well reported that these shooters had “blue eyes”.
“Now we  caution against ‘sweeping conclusions’ based on eye color, but we just felt the need to mention the fact that this shooter had ‘Blue Eyes”.
Once again, Autism is made the scapegoat for an unexplainable horror.

Toni Braxton: – May 26, 2014
Toni Braxton wrote a memoir. Included in this memoir was her confession that she once believed that God  had punished her for an abortion she had  years ago by giving her son Autism.
Parents receiving a diagnosis of autism go though many, many layers of emotions and have many different thoughts. I do not have a problem with whatever she may have been feeling at the time. We all feel than think differently. We all handle it differently, there is nothing wrong with that.
There ARE some thoughts that should be kept to one’s self, especially when your child is involved. She may have felt guilt, she may have truly believed that this was some kind of punishment, due to her religious upbringing, but that thought should have been kept between her, her pastor and/or her therapist – forever.
Yes, I write many stories about my own Autistic son.
I write about him because I am so proud of him. – I write about him because he makes me laugh and smile everyday. – I write about him because I worry about his future. -I write about him because, I am told it helps others to understand autism (his autism, at least).
My son will come away from all of my stories knowing that his mother loves him and was never anything but proud of all that he is.
Toni’s thoughts about autism are her own. I would not disparage anyone for having whatever feeling they may have about that diagnosis.
But, this thought should have remained her own. It should not have been written about, printed in a book or spoken about in interviews. The fact that she no longer feels this way doesn’t negate the fact that her son will read and know that at one time, he was seen as her punishment. You can not take that back, no matter how much your views may have changed along the way.
You can not take that back …………………..

Sunday, May 25, 2014

Seafood anyone?

Just a quick post just because I am so proud of my boy. I have told him so many times since yesterday that DC finally said, “Mom, write story”.
I don’t know if he asked me to ‘write story’ because he is proud of himself too or that he just wants me to stop telling him every 5 minutes, but either way, his wish is my command.
DC and his dad gave me a gift certificate for Mother’s Day for a seafood restaurant. The restaurant is very popular I am told. I had never been there, but DC has been there with his Dad and a couple of other times on field trips with an organization where he participates in many of their activities.
The restaurant is about an hour away, so we decided to make a day if it.
For a kid that loves to go ‘out to eat’ almost as much as he loves going to the bookstore, he didn’t seem all that excited when we finally arrived. Also, for a kid who remembers EVERYTHING, he didn’t seem to recognize it and told me more than once in the parking lot that he did not want to go there (I think he was a little bit out of sorts to begin with yesterday).
Once inside, he saw that they had cheeseburgers on the menu and he also seemed to now recognize the place so he stopped telling me he didn’t want to stay there. DC’s standard order anywhere we go is: wings, cheeseburger, french fries and coke. I could see they did not have wings on the menu so I was surprised when he ordered “fried chicken” with his cheeseburger. I did not see that on the menu either and tried to explain this to DC. He was getting upset and luckily the girl at the counter stepped in and corrected me and said that, yes they do have fried chicken and we CAN order one piece as a side dish/ appetizer. I should have known that he of course, would remember what he had when he was there before.
- SAVED by the counter girl -
I told DC that he was correct and that Mom was wrong, which just put him in a better mood, because he LOVES when I tell him I am wrong. :)
We took a seat and not too long after, our food was ready. In the booth behind DC was a family; parents and three young children. In the seat directly behind DC’s head was the mother and two of the children, they looked to be about 3 years old. The two children were on the inside of the booth climbing all over the place and screaming, two inches from DC’s head. At first I didn’t pay much attention because there are times that noise really bothers him and other times he seems oblivious to it. This seemed to be one of the oblivious times, until all of a sudden, he looked at me, lifted his fists straight up next to his head, clenched his teeth and just shook! There are many times when I don’t immediately know what is wrong, but this time it was apparent.
I told him that I understood what was bothering him and told him that it might be better for him if we just moved his food to my side of the table and sit with me. First he refused, because he was all situated where he was,  but after thinking about it for only another second, he agreed. He moved over to my side of the table, he looked at me, put his hand to his forehead, pretended to wipe it and said “Phew!”
It was a simple fix, but I was so proud of him for keeping himself under control. Yes, he shook his fists and clenched his teeth, but he did not make a sound, he did not yell, he did not lose control. He found his own way to let me know he was having a problem and he let me help him to correct it. I’m sure the people in the booth didn’t even know anything was happening. I praised him over and over again for keeping himself in control and letting Mom know there was something wrong and letting me help him.
I also took it as an opportunity to explain to him that when he sometimes gets loud in a restaurant that this might be how the other people feel; this is why I always ask him to try to keep his voice down. I’m really not sure if he understood the connection, but I have to try to make it, when the opportunity presents itself.
He went on to enjoy his fried chicken, cheeseburger, fries and coke in the seafood restaurant without incident and in a much better mood for shopping and bookstore visits to come later.
Seafood? Or just "see food"
Seafood? Or just “see food”

(this post was written entirely on my phone, please excuse any typos and run on sentences)

Thursday, May 22, 2014

New Wordpress Blog address

I have changed the address of my wordpress blog. All if the content on this blog is also posted there - the old links on each post here may not work, but all content is at the new address. I will continue to post here with the new address linked. Thank you! 

Sunday, May 18, 2014

Missing 14 year old #autism

Missing #autistic 14 year old Anyone with information about Cortez’s whereabouts is urged to contact the NYPD’s Crime Stoppers hotline at 800-577-TIPS. The public can also submit tips by logging onto the Crime Stoppers website or by texting tips to 274637 (CRIMES) and entering TIP577.

Tuesday, May 13, 2014

Mother's Day Update

Mother’s Day update | Taking it a Step at a Time - Autism

I just had to write an update to my Mother’s Day Post from yesterday,Mother’s Day and The Macaroni Necklace”.

DC loves to draw and he does draw quite a few pictures for me. His favorite subjects are flowers, cakes and once in a while,  pizza too. He draws pictures for me at times for no reason but usually his “Flowers for Mom” drawings are reserved for the times he thinks he is in trouble and the times he IS in trouble. When you see “Flowers for Mom” pictures laying about when you walk into my house, chances are DC is in trouble for something. He never draws for a holiday or birthday, unless it is suggested to him.

Less than 12 hours after I wrote..

“His mind still doesn’t go to “Hey let’s make Mom a card or a gift for Mother’s Day”

DC woke up, announced, “Happy Mother’s Day, Mom!”. We went to the kitchen and I was making coffee,  I turned around and there was DC at the table drawing.

He stopped when he saw me look at him as if I wasn’t supposed to see; “Sorry, Buddy, I won’t look”, and he continued on.

A few minutes later he presented me with this picture, with no prompting and no one to tell him it what a good idea it might be!

And less than 12 hours after I wrote…..

“Such a difference from the boy who didn’t know it was a holiday or to know that he should give me the gift in the back pack to the “man” who just can’t wait to make me happy with his gift!”

there was more…………….

Happy Mother’s Day!

Saturday, May 10, 2014

Mother’s Day and The Macaroni Necklace

My only Mother’s Day gift wish when DC was little was a macaroni necklace. You know, the macaroni necklace that every child makes for their mother eventually, for some occasion or holiday or for no reason at all. I think I remember making a few of my own when I was a kid. I really wanted a macaroni necklace! Unfortunately,  there was no one that was going to help him do this, with the exception of me, of course,  but that would not be the same. In other families if there was not another parent or sibling to make the suggestion and help with the project, eventually the child got old enough to come up with the idea as we all did when we were young, on his own. I knew that this was also something that was not going to happen in the foreseeable future, at least.

I know it was an odd thing to be fixated on, with so many other things to worry about, but it reallymade me sad that  my son was never going to make and present me with a macaroni necklace. I talked about it all of the time. Whenever my birthday or a holiday came around, my friends would have to listen to me whine about the fact that I would never have that cherished macaroni necklace. In my mind it was the “right of passage” of parenthood.

Now, yes of course I realize that this necklace that I wanted so badly was just a representation of the many ways our life was and would continue to be so very different from the way I had imagined when he was born.
I know that very few people end up with the life they imagine, but I knew ours would be verydifferent.

DC was in school, but at this point in time, they really hadn’t done many of the “school gift” projects that most children come home with around the holidays ~ probably because the projects would not  make it home in one piece ~ therefore my hopes for a macaroni necklace were dwindling.

One day, the Friday before Mother’s Day, when DC was 6 or 7, I opened his back pack and found a package labeled “Mom”. I called DC over and asked if this was for me. He signed “Yes”.

I opened it and there it was,  a macaroni necklace! Made with HEART SHAPED macaroni, no less. Also included was a photo of DC and his aide stringing the pasta.

This was absolutely THE best Mother’s Day gift! Of course, he didn’t really understand that he had to give it to me, I had to find it in his back pack, and of course the writing wasn’t his, but there was photographic evidence that he had made it himself!

I wore it all day on Mother’s Day and  to work on the Monday after Mother’s Day. He seemed to be very pleased that I was wearing it!

My office mates were happy too, believe me….. I specifically remember one saying “Thank God you finally got that macaroni necklace, I was about to make one myself!”

Now-a days DC is no longer oblivious to holidays. He knows when they are coming, he knows what they are about for the most part. His mind still doesn’t go to “Hey let’s make Mom a card or a gift for Mother’s Day”, but he now has some help for that.  But he does remember to give them to me, usually early because he is too excited and can not wait. He does make the connection with the holiday and the gift and he is very, very proud of himself when he gives me a gift. Such a difference from the boy who didn’t know it was a holiday or to know that he should give me the gift in the back pack to the “man” who just can’t wait to make me happy with his gift!

There is nothing that makes me happier than seeing him proud of what he’s done and accomplished.

So, Happy Mother’s Day!

May your jewelry box runneth over with pasta and your day be filled with joy!

Tuesday, May 6, 2014

Just Who Is This DC That You Speak Of ?

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 amONE 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 worldwithout 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…..

Friday, May 2, 2014

“Please allow me to introduce…..”

(This post probably qualifies more as a face book status than a blog entry, but it made me laugh, so a blog it is!)
DC loves to make introductions. I don’t believe he really understands the point of introducing people. He sees introductions  in the movies he watches and reads about them in his books. It doesn’t matter if the people he is introducing already know each other, it doesn’t matter if he knows they already know each other, when he gets to urge to make introductions, he does. He is usually very formal about it as well -

“I would like to introduce my mother, VickieLastname”


“It is my pleasure to introduce to you, my mother, Vickie Lastname

or (my favorite)

“Please allow me to introduce my ‘lov-er-ly’ mother, Vickie Lastname

Recently we attended a pasta dinner fundraiser to benefit the summer camp DC has attended since he was 5 years old. We purchased 4 tickets for DC, Doug, my mother and myself and we sold a few more to friends and family members.

Seated with DC and I were, my mother (DC’s grandmother), Doug (who was also pulling DJ duty), DC’s grandparents on his Dad’s side, his Dad, Tracy, his stepmother (I generally do not use the stepmother title to describe her because DC is so very much into Disney that there is no explaining to him that all stepmothers are not evil) Karr-ee-anna - in DC-speak, his Aunt Kim, her husband Ray, my friend Toni. and DC’s friend, Sam. Doug’s father and sister had   moved over to the next table. So there were plenty of people there to support DC and Samantha.

DC was very excited that everyone was there. He sat at the table as if he were “holding court”, then he decided that introductions were in order.

“Tracy, this is my mother Vickie Lastname”


“Vickie, I would like to introduce you to my father, Tracy (same) Lastname”

~ Insert Dramatic Pause ~





“we’ve met”……………………..


Photo credit: Toni