Opinions and Closed Cases

A few months ago, in anticipation of a social gathering that we were scheduled to attend still weeks away in the future, I published a “rant” – plain and simple – it was a rant. I already had myself worked up.

 
 

Now I do write my fair share of rants but I would say that 50% or more do not ever get published (okay so I published “sort of” a rant just last week, but usually they do not see the light of day).  Although I have every intention of hitting the publish button at the time, just the writing down of it tends to calm me down and said rant goes unpublished. There are times when the writing down of it does not calm me down and in most of those cases I sit on it, sometimes for months until I am able to edit and bring down the hostility level a bit.

 

Then there are the times when I do not sit on it (while still trying to edit out some of the hostility) and just hit publish.

 
 

After I published the post below, managing to bring that level down, my blogger friend Autism-Mom published a post that said everything in a graceful and more civilized way. If you missed it, you can find her post right below my rant. It is worth the read.

 
 

So………..The holidays are upon us. Need I say more?

 
 

Opinions, Opinions and More Opinions

 
 

As parents of autistic children, we as a community seem to receive a good amount of unsolicited and unwanted parenting advice and opinions from family, friends and even strangers. Why these people seem to be under the impression that this is appropriate behavior or conversation, I do not know. If someone should ask my opinion about their neurotypical child  I may give them my opinion – I may not, (especially since I do not have a neurotypical child to base my opinion on) but either way, I will most certainly not tell them that they are “doing it all wrong” or give an opinion in front of their child.  As a general rule, if not asked I will keep my mouth shut. I do not understand why it always seems to be open season on us, our parenting skills and our children….
BeingHumanUK

 
 

Dear Everyone At The Table:

 
 

Let’s just get this all over with now so I don’t have to listen to it in increments throughout the evening, shall we?
1. “Can’t he do that himself?”
Yes, he is perfectly capable of getting up and getting his own food, but I am closer and offered to do it for him. What about this could possibly concern you?
2. “Does he use that much salt at home?”
No, as a matter of fact he doesn’t use ANY salt at home. (See post) – I do not even buy salt as I don’t use it either. He and I together probably consume less salt than any single average person would. Someone along the way must have shown him that salt is used for something other than fairy dust so he does feel the need to use it when we go out to eat.
3. “Does he eat that much at home?”
No he doesn’t. Not even close. He would if I let him, but I don’t. Yes, he gets a little bit carried away when we are out, but one of his favorite things in life is going out to eat so what would be the fun in it if he doesn’t get to have what he likes?
4. “You should make him order a salad with his meal. Does he eat any vegetables?”
He eats a good amount of vegetables, probably more than you do. In his mind, salad and vegetables are not “out to eat” foods. (See answer #3) I don’t believe that I will have to rush him to the hospital for not having vegetables at this one meal. He eats a good amount of fruit too, but I am sure you will now point out how much sugar there is in fruit so I guess I may as well be giving him candy.
5. “Does he exercise? He looks like he could use some exercise”
He walks and goes to the Y at least 3 to 4 times a week. Not to mention the jumping and dancing he does quite continuously when he is at home. He also runs cross country in the fall and takes Zumba every time the class is offered.
6. “He’s put on a lot of weight. You really need to watch what he eats.”
He is on seizure medication – this is one side effect of said medication. I watch what he eats every day (see answer #3).
He exercises daily (see answer #5)
So with all of that being said;  Would it be possible to reserve this and any further conversation about his weight or eating habits for a time when he is, you know, not sitting right here. My preference would be at a time when I am not here either.
If you should have any other comments or unsolicited opinions on any subject regarding my child, please reserve them for that same time.
While I am not or have ever been in the habit of commenting on everyone at this table’s parenting skills, I do have a list in my head going way back over the years that I can access at a moments notice.  I am not afraid to use it…
(It’s a pretty extensive list)

 

Best Regards,

 

Vickie

 

IMG_6191

 

CASE CLOSED – Autism-Mom

Open: When I was ready to have a child, I read many books on pregnancy, learning the best ways to do take care of myself for the health of my child.

Closed. The reality of working full-time, pre-eclampsia edema and hypertension meant I had to adapt to meet my own needs as well as my child’s, even if it was different from what the books recommended I do.

Open: After I delivered, the nurses in the maternity ward, books, the internet, my friends and family, told me what I needed to do to take care of my baby.

Closed. I cared for my newborn the way that worked best for us after learning who he was, what he needed, and even if it was different from what the nurses books, the internet, my friends and family suggested I do.

Open: As he grew older, I listened to his teachers, therapists, specialists, counselors, learning the best ways to support him in his growth and learning, including related to his Autism diagnosis.

Closed: I took all of the information I had, applied it to what I knew about my son, and moved forward, even if it was different from what the professionals recommended I do.

Why? Because I am the parent and the decision is mine.

Please read the remainder of this post at Autism-Mom

Thank you for the support, Elizabeth!

****

Happy Thanksgiving to you all!

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Opinions, Opinions and More Opinions

As parents of autistic children, we as a community seem to receive a good amount of unsolicited and unwanted parenting advice and opinions from family, friends and even strangers. Why these people seem to be under the impression that this is appropriate behavior or conversation, I do not know. If someone should ask my opinion about their neurotypical child  I may give them my opinion – I may not, (especially since I do not have a neurotypical child to base my opinion on) but either way, I will most certainly not tell them that they are “doing it all wrong” or give an opinion in front of their child.  As a general rule, if not asked I will keep my mouth shut. I do not understand why it always seems to be open season on us, our parenting skills and our children….

 

BeingHumanUK

 

Dear Everyone At The Table:

 

Let’s just get this all over with now so I don’t have to listen to it in increments throughout the evening, shall we?

 

1. “Can’t he do that himself?”
Yes, he is perfectly capable of getting up and getting his own food, but I am closer and offered to do it for him. What about this could possibly concern you?

 

2. “Does he use that much salt at home?”
No, as a matter of fact he doesn’t use ANY salt at home. (See post) – I do not even buy salt as I don’t use it either. He and I together probably consume less salt than any single average person would. Someone along the way must have shown him that salt is used for something other than fairy dust so he does feel the need to use it when we go out to eat.

 

3. “Does he eat that much at home?”
No he doesn’t. Not even close. He would if I let him, but I don’t. Yes, he gets a little bit carried away when we are out, but one of his favorite things in life is going out to eat so what would be the fun in it if he doesn’t get to have what he likes?

 

4. “You should make him order a salad with his meal. Does he eat any vegetables?”
He eats a good amount of vegetables, probably more than you do. In his mind, salad and vegetables are not “out to eat” foods. (See answer #3) I don’t believe that I will have to rush him to the hospital for not having vegetables at this one meal. He eats a good amount of fruit too, but I am sure you will now point out how much sugar there is in fruit so I guess I may as well be giving him candy.

 

5. “Does he exercise? He looks like he could use some exercise”
He walks and goes to the Y at least 3 to 4 times a week. Not to mention the jumping and dancing he does quite continuously when he is at home. He also runs cross country in the fall and takes Zumba every time the class is offered.

 

6. “He’s put on a lot of weight. You really need to watch what he eats.”
He is on seizure medication – this is one side effect of said medication. I watch what he eats every day (see answer #3).
He exercises daily (see answer #5)

 

So with all of that being said;  Would it be possible to reserve this and any further conversation about his weight or eating habits for a time when he is, you know, not sitting right here. My preference would be at a time when I am not here either.

 

If you should have any other comments or unsolicited opinions on any subject regarding my child, please reserve them for that same time.

 

While I am not or have ever been in the habit of commenting on everyone at this table’s parenting skills, I do have a list in my head going way back over the years that I can access at a moments notice.  I am not afraid to use it…
(It’s a pretty extensive list)

 

Best Regards,
Vickie

 

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

 

Headlines

Headlines

HEADLINE:
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 …………………..

 

 

 

 

 

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…..

 

 

Don’t Judge What You Don’t Understand

There is a convenience store in our town that my son and I stop in pretty regularly. The employees are very nice to him. One in particular seems to be very interested in him and his diagnosis and really goes out of his way to try to talk with him.

A few weeks back, there weren’t many customers so he began asking questions about him. I never mind when people ask questions; I’d rather they ask than stare or shy away from him.

One thing led to another and he began to tell me that they do not have the system that we have in his country. In his country the families take care of their disabled children. He proceeded to say (which I’m sure he thought was a compliment) that I take care of my son, but other customers who come in with disabled children and adults ask for receipts for what they are buying.

I really didn’t understand at first what one thing had to do with the other but he explained – “I ask them why they need a receipt and they tell me it is for the child/adult’s father or some company”.

In the first place, why would he ask anyone why they needed a receipt? And then why would anyone feel obligated to answer that question?

He proceeded to tell me again that, in his country, the families take care of their own children. He automatically made the assumption that if someone else is with your child, a staff person, or a person from a group home that the parents are not taking care of their own children!

Immediately the pointing finger came out (I really have to learn to control the “finger wagging”) and I said “Oh, no. Do not judge people because someone else happens to be with their child at that time!”

I tried to explain to him that, in my case, my son has been with me and I have done just about everything for him all of his life but now I too have staff people with him a couple of hours every day after he gets home from work because he needs to learn to be independent from me.  I don’t like it at all, but I know it’s the best thing for him. I’m always convinced that I am the biggest detriment to his independence.

Unfortunately, I didn’t get to finish my speech as customers were coming in and I could see that he was getting uncomfortable because he thought he’d offended me, which he did. When people make those kinds of assumptions whether it be about me or not, I DO take offence. I suppose I just could have let him believe that I was not one of those “awful” people pawning their child off on someone else; he would never know any different, but I just couldn’t let it go.

Partially, I think I react that way because I DO feel guilty when I am not with him. All I was looking for when all of this began was some type of program after school so I didn’t have to continue cutting my hours at work to make it home before he arrived from school. I’ve been a single mother for nearly 20 years, and I have to work; fulltime, always have, it’s only me supporting us.  What I ended up with was staff hours for life skills, community, and activities. And yes, I know it’s the best thing for him, but after 3 years with this staff (they are wonderful, don’t get me wrong), I still feel guilty.  His staff is only here from 3pm – 5pm, and then they accompany him to some night activities as well – activities that I would normally have taken him to. But,  I feel like I’m being judged by people, my neighbors that weren’t living here all of the years that it was just me and just people in general who have no idea what this is all about, like the man in the store.

I wanted to ask the cashier just what happens to the children is his country when the families are gone or too old to take care of these children? They’ve been sheltered all of their lives, what becomes of them? How to they adjust to having no one?  I don’t know anything about his country, I don’t even know what country he is from, but I feel that here, at least in this house, we are not trying to shelter our kids by just keeping them safe and out of the way and never learning or experiencing life, the best life they can have.  I  am hoping to help him become as independent as he can be and if that means letting someone else take the reins for a couple of hours a day, then that’s what I am going to do.

I know he’s not a bad person and I was sorry I made him feel uncomfortable, but I am really hoping to finish this conversation one day and hopefully make him see that he should not judge what he does not understand and maybe even change the way he perceives  “these parents” (myself included)…… ……….

“Happy?” – “Sorry” – What’s next?

Yes, John Lithgow is "Happy"

Yes, John Lithgow is “Happy”

Years ago, DC and I were out doing errands. We had to have stopped at 3 or 4 different stores, which at the time was very difficult for him. By the time we got to the Health Food store, he was so out of control that the cashier saw fit to stop the line to try to educate me about just what vitamins, etc. I should be giving him to combat his ADD – (Holding up a line of customers to give me advice in front of all those customers, was just what I needed that). I informed him that my son had autism, not ADD, but thank you very much!

On the way out, I said “I am not very happy today”. That one single comment led to years of DC asking everyone if they were happy. He did not have many “words” under his belt at the time, but he did manage to ask everyone he met if they were “Happy?” (Can you say “guilt”?)

* We have an autograph on a golf card from John Lithgow making it clear to DC, that yes, he is “happy” (see photo).

Eventually he stopped asking people if they were happy and the “Happy” question was replaced with “sorry”. I am sure this is my fault as well. Somewhere along the line I must have told him to say he was sorry for something and there it began.

He is sorry for absolutely everything! Partially because he believes an “I’m sorry” will get him out of anything. (**warning; slight “man-bash” ahead). Like a typical man, he thinks that saying “I’m sorry” even when he doesn’t know what he is sorry about will get him out of anything or at least get me to stop talking. When he really wants to bring it home he will move on to: “I’m ‘ter-bly’  sorry” or “I am soooooo sorry”. He will even throw in a “Can you ever forgive me?” (movie line) when he really thinks it is necessary.

He says he is sorry, WHILE he’s doing something he shouldn’t, and will continue right on doing whatever it is because he is covered, he already said he was sorry. Or he will say he is sorry when he is about to do something he knows he shouldn’t. He is covered- he already said he was sorry!

He says he is sorry when he asks a question and the answer happens to be “no”. In his mind, “no” is a negative even when it is just an answer to a question. I have tried to explain all of this to him but as much as I try to simplify there are just some things he will never understand.

Don’t get the wrong impression; he is not upset or anxious when he says he is sorry. It is just a word to him. He does not constantly think he’s in trouble. It is just something for him to say….. over and over again.

A few days ago he somehow figured out from one of his books that the word “Sympathy” in a way means “sorry”. So on that day, DC was “in sympathy” for sneaking chips.

I think I might like that better.