Our Kids Are People.

I have read and shared a couple of pieces just this week (here and here) about a subject that many people just do not seem to understand.

Our Kids Are People.

One might think that this would be something that should not have to be explained, but believe it or not, it is. Praising your child for spending time with or eating lunch with the SPED student or someone who is viewed as different is in reality, teaching your child that our kids are not people and that treating them as you would treat anybody else is cause for celebration.

*The TSA agent who decided that because DC is autistic, there was no reason to speak to him or treat him like a human being. He just grabbed him and patted him down. The mere mention of autism led the agent to believe that DC did not have to be treated as a “person”.

People do at times overlook him completely and direct their questions to me instead of talking to him. I do always ask him the question myself and make sure he gives the person the answer himself. I mentioned earlier in the post that I thought that there was no way on earth that the security guards did not understand even before I explained that DC has autism.  Now as I think about it, I wonder if they actually did understand and decided that due to his autism, they did not really need to talk to DC directly at all…… and THAT is a problem.

*The “Volunteer” that we will talk about in the post below.

*The people who refuse to even respond to DC when he attempts to socialize. It happens quite often.

These people have decided that DC has a disability and therefore does not deserve to be treated as a human being – he doesn’t know any better. Well, he does know. He can and does get his feeling hurt.

Along these same lines… if you or your child are going to volunteer for some sport or activity, please be sure you/they are doing it for the right reasons and remember that our kids are people too.

Originally Posted in April 2018 on the other blog:

Attention Awareness, you missed a spot

Doug works as a job coach in a transition program. Like the program that DC attended through our school system (18-21) but located at a local college, the program Doug works for is through that town’s school system and is located in their local college. Doug will also volunteer his time to DJ dances for his students.

While on our way to one of DC’s events, I asked Doug how the dance went the night before. He said that it went well. Then he began telling me that one of the college’s sports teams had to do some community service hours – I thought he was going to say that they volunteered at the dance….

…but no.

They opted to have dinner with some of his students in the cafeteria before the dance. Basically, they took 45 minutes < Insert Sarcasm Font> out of their busy day to have dinner in the cafeteria with these kids <End Sarcasm Font>.

So…….. having dinner with one of our kids is now considered community service???

I wonder if there will be a video?

Awareness……. FAIL!

******

After hearing the volunteer/dance story in the car, we arrived at DC’s event.

DC is a participant in a few sports teams. As with most of the teams he participates in, each participant is assigned a “Buddy” who carries their equipment, directs them to what they are supposed to be doing and where they are going and helps them out during the game.

DC has a buddy who does not acknowledge him at all. She doesn’t say hello, she really does not even look at him. I thought maybe she was just shy at first, but she has no problem talking to her two friends (who are also ignoring their participants for the entire time we are there).

DC knows he is supposed to stay with his buddy, so he got a little bit nervous when she and her two friends walked through the halls on the way to the gym in the front of the line and DC was way in the back (they are supposed to walk with their buddies). Later in the “holding area” where they were waiting for their turn, she stood with her two friends, back to DC who just stood there alone – the entire time. Twice I had to go and move DC over because she had his equipment over her shoulder and I was sure she was going to hit him in the face with it each time she moved. I thought maybe she would get the hint, but she did not. She never even acknowledged he was there.
This is not the first game where I noticed this and Doug (who notices nothing – his words not mine) actually brought it up to me more than once.

When it was finally their turn to play, they went out to the gym (no, she did not walk with DC), had their turn and then…….. she just walked out of the gym leaving DC standing there in the middle of the gym by himself. Fortunately I was close enough to get to him before he ended up in the middle of the crowd at the doors, where if he got that far, I would still be looking for him now.
She did not even turn around to see where he was – she just left.

I did report it via email to the coach (after we left the building because I just did not trust myself to be civil to this girl and just wanted to leave the area).

After I got over the whole safety issue of him getting lost in the crowd (I have nightmares of him getting lost in a crowd – always), I began to realize that this was not about her being shy, this was not about her not knowing what to do – this was about her treating him as if he were not a person.

A shy person would say hello. A shy person might maybe look in his general direction once in a while. A shy person would at least acknowledge his existence. She does none of those things…. not one. If you were there to see this, you would understand that this is NOT just a case of her wanting to spend time with her friends.

She treats him as if he does not exist, as if he is not a person.

You have to wonder what motivates her to even volunteer with this team.

Common courtesy would motivate a person to at the very least,  say hello. Apparently some people do not see our children as real people. This is a problem.

AWARENESS: Fail!

 

 

 

I have a blue light

 

I have a blue light. It is one of those energy saving bulbs that lasts what seems like forever. It has been in my outside porch light for a good 4 (maybe more) years now (and yes, I did notice that there are plenty of dead bugs at the bottom in this photo – that’s life.)

One Halloween about 4 years ago (maybe 5) it was my turn to host the annual Halloween/Trick or Treat party for DC and his friends. We would still be giving out candy so I wanted to find a bulb that would not interfere with the lights and decorations I had put up, as the regular porch light bulb would.

I rummaged around and came across an old bulb from back in the day when I used to Light- it-Up Blue.  The porch light is not easy to change and if the bulb works, I am not changing it. There it sits – four (or maybe 5) years later. Obviously, I do not turn my porch light on all that often for it to last that long.

We did not have Autism Awareness when DC was young. We did not have World Autism Day, so when Autism Awareness started to become a thing, I was all for it. I naively believed that the awareness would encompass all of the spectrum.  If your child happens to fall somewhere on the spectrum other than where the characters that we see on TV fall, you are not allowed to speak about it. Don’t get me wrong – awareness and acceptance is a necessity but some of us need more.

As I get older and DC gets older, I worry more and more about his future and his safety (don’t worry, I am not going to rehash all of my fears for the hundredth time). Awareness is/was necessary though. It brought us more programs into school systems and more understanding and hopefully, acceptance of the students. Awareness has done next to nothing for some of our children as they become adults.

With funding for the disabled being one of the first things to be cut in every budget, even some of those school programs are going away now. I have already said that DC, after all of the people I have put in place as guardians after I am gone are gone, will have to live in a group home. What if there is no funding for that sort of thing when I am gone? What if everything I have put in place falls apart due to these cuts or due to one little miss-step? What would have happened if our whole Social Security debacle happened after I was gone? (A debacle that turned out to be Social Security’s  fault, but they were perfectly willing to take his benefits away, knowing full well that it was their fault – this is a 3 part-er so if you are interested, start here). Who will be there to fix it all for him? Will he be out on the streets or institutionalized? He would not survive. He is in a staffed day/work program right now. He loves it. What happens when their funding gets cut (as it does every year)?

April is a very depressing month for me now-a-days. It really is. Please do not tell me that I am undervaluing my son’s life by saying that. I am not in any way.

He is happy.

You should be so happy.

I love our life.

He loves his life.

I would not change a thing about him, except for his future.

I worry for his future and it is not for you or anyone to judge a parent, any parent who is just worried for their child’s future. His future is not your future, it is not your child’s future, you cannot compare.

I do not disparage those that are celebrating. I do not disparage the associations/charities they choose to support or not support. I do not disparage Autism Awareness at all. I am glad there is push for awareness and acceptance, but it needs to encompass everyone and we need more – much more. 

So I will just continue on my way, writing stories – some with humor and some not, some about progress made and some not. But through-out those stories, it should be apparent to you just how much I love this “boy” and how proud I am of him every day. If it is not in your face apparent in one or two; all I can say is that everybody has a bad day once in a while. I will continue to write about DC and our life  just to raise awareness to another side of the spectrum. I will continue to call and email my representatives whenever the threat of more cuts are in the air. I will continue to plan and research other methods of making sure he is safe and taken care of.

So yes, I have a blue light. It is left over from Halloween, 4 years ago (maybe 5). It may be turned on if someone is stopping by  after dark, but it means nothing other than the fact that I am just too lazy to switch out a perfectly good, working light bulb.

I am glad there is an awareness day and an awareness month. I am glad it has also become an acceptance day and acceptance month.

We need more.

 

 

 

 

“For Sami, Love Daddy” – Down Syndrome Awareness Month

Still, one of my favorites…..

“For Sami, Love Daddy”

Chloe and Sami

In 1992, when Sami, who has Down Syndrome, was 18 months old, her father, Rich, was the Senior Producer for the Sony JumboTron in Times Square. He began producing a series of spots to raise awareness and acceptance of people with Down syndrome to run on the JumboTron during Down syndrome awareness month. He continued to produce these PSA’s on his own until 1994, when he contacted Emily Perl Kingsley.

Emily is an Emmy award-winning writer for Sesame Street, the author of a wonderful essay entitled “Welcome to Holland” and a personal friend of Big Bird. She also has a son with Down Syndrome.

Emily Kingsley immediately saw the value in what Rich was producing and through her contacts involved NDSS. Together they produced spots which included children with Down Syndrome from all around the country.

The response was overwhelming! All of the featured children and their families from 25 different states came to New York City to view the spots on the JumboTron in Times Square.

As there was so much interest that year, NDSS held an event in Times Square the following year, where all the families could gather to watch the video. A wonderful reception followed at Sardi’s for all the families that made the trip.

In 1995, as a result of the success of this event, the NDSS Buddy Walk was born. Again families gathered in Times Square to watch the presentation and then headed up to Central Park for the Buddy Walk.

In 2013,  Sami, then 22 years old, returned to the Square for the event that was created because of her and the love of a father for his beautiful daughter.

“In my heart the event will always be “For Sami Love Daddy”

– Which is how Rich tagged everything he produced…….

For Sami

Sami with her “Best Buddy”, Chloe were featured in the Bright Lights of Times Square in New York City on September 21, 2013.

Sami and Chloe on the JumboTron

Sami and Chloe on the JumboTron

Hi-Five as Sami and Chloe see their photo on the Jumbo Tron

Hi-Five as Sami and Chloe see their photo on the Jumbo Tron

 

(originally posted in September 2013)

Knock Three Times

knock three times

DC and I attend many events, activities and parties. Many related to his autism or specifically geared to special needs children and adults, many are not. Although I do write about some of these events or trips, I certainly do not write about all of them as, in most cases, there is nothing significantly related to DC and his autism to write about. This event was not going to become the subject of one of my posts; it had nothing to do with Autism, there would be no princesses, no wizard, no costumes, no bookstore – just DC, my mother and I attending a fundraising event hosted by an old friend of mine.

After attending, I do feel the need to write about it, and write about it from the perspective of DC and his autism and how, at times people really do go out of their way to make DC comfortable.

An old friend of mine invited us to his annual fundraising event.  We could not make it last year, I can not remember why, but we were available to attend this year. We invited my mother to go along with us. Knowing full well that a sit-down-dinner at a table with probably 6 to 8 other people would be tough for him (and me), I tried, as I always do, to relate* the event to something of interest to him.

Tony Orlando, The Honorary Chairperson, would in attendance. Now, I am old enough to know who Tony Orlando is, but I didn’t know how to relate him to something in DC’s world. There have been many times where I am surprised by who DC does know. Usually I find out that they are “the voice” of a character  in one of his movies. I checked on-line to see if Tony Orlando might have been the “voice of” anyone DC might relate to. He was not. But then I realized that whenever we hear “Knock three times” on the radio, I make DC sing along with me. We’ve done it enough times that he does now recognize the song. It is also one of the few songs that DC does not say, “Mom, please STOP singing!”

First hurdle, relating this event to something in his world – check!

The event was being held in the midst of our Halloween party season. We had already attended one party and we had a few more on the schedule in the next few days. The event’s description indicated that it would be a 40’s style gala. I did not know what that really meant but I went out and purchased a 40’s style men’s hat to go with DC’s suit.

Second hurdle, turning the event into a “costume party” – check!

My greatest concern was the seating arrangements. As I talked about in an earlier post, there are not many things that we avoid because of DC’s autism, but we do try to avoid situations where we will be seated at a crowded table with strangers.  There are times when it can not be avoided, and we get through it, but if I can avoid it, I will.

I am usually not a big fan of eating in the dining room with DC. The tables are crowded with strangers. I get anxious because DC, although pretty well-behaved in restaurants, can get a little bit loud and chewing with his mouth closed does not come naturally to him, he has to be reminded continuously. When he does remember on his own, he feels the need to point it out to me throughout the entire dinner. He likes to bring a book with him whenever we go out to eat, but at these crowded tables, it is not always possible, there just isn’t enough room.

I was never of the mind that other people should be made to just accept DC’s behavior. Yes, if I am trying to manage the situation I can live without the stares and comments – but letting him do whatever he wants in the name of awareness, is not something I ever subscribed to. I do not believe that every behavior can or should be blamed on his autism – it is never used as an excuse.

 

I was told that I had to e-mail someone for reservations before purchasing tickets. I am not one that ever asks for special treatment or accommodations for DC, but since I had to send an e-mail, I decided I would just mention that DC tends to get a little bit anxious in crowds and if they happened to have a table that was not full; would it be possible to be seated there? I didn’t want them to go out of their way or change anything around, I just thought that if there was already such a table available, I would appreciate it if we could be seated there. It wasn’t a deal-breaker, we were going either way, but since I had someone’s ear I thought it could not hurt to ask.

DC has issues with many types of clothing, more-so now than when he was younger, but there is nothing better, in DC’s eyes, than wearing a suit. I suspect the fact that people tell him how handsome he looks is the number one reason – if you neglect to tell him just how handsome he looks, believe me he will bring it to your attention. Add the hat “costume” to his already handsome apparel and he was over the moon.

The very first thing DC noticed upon arrival was the sign for the “Grand Ballroom”. I had not thought of this aspect when looking for things relatable for DC. Not only was he going to see the ‘voice of’ “Knock Three Times”, while looking handsome in costume, but we were going to the “Ball”! How did I miss that one?

We were in the lobby with quite a few others who had arrived a few minutes early. We were told that we had to wait a few minutes as the staff was still in the process of setting up. DC was having the normal anxiety he has upon arriving anywhere. I always know it is coming, he just needs a little time to shake it off. The woman at the door noticed he was having a difficult time, and shuffled us into the ballroom. We were away from the crowd and he didn’t have to ‘wait”. He would have been alright waiting with everyone else, but it would have taken him longer to shake his ‘arrival anxiety’, so I was very appreciative that she let us in.

We found our table. It was the very last table all the way in the corner. It was perfect.  DC, who generally is not aware of anything around him in terms of pushing his chair out, getting up from the table without looking to see if anyone is coming or putting his coat on, arms flying outward to accidentally hit anyone that might be in range, had room behind him so he would not bump  into anyone else’s’ chair or knock anyone over when he got up from the table. There was no one behind us to bother if he felt the need to get up and dance. We were the only people in the ballroom other than the staff and a few people I assume were with the organization, for quite some time. Not long after, Tony Orlando came down the stairs. I do not like to bother people. DC has had his picture taken with many people over the years but it was almost always as a photo op. I just do not feel right asking people that are not there for that reason, to take a picture. My mother, had other ideas. She reached into her box of ammunition and pulled out the ‘Mom Guilt’….. “Oh you have to!” , “He won’t mind, he’s used to it” (that went on for awhile),  she stared at me for awhile and then resorted to the sideways glance, “Now, Vickie” in a tone I hadn’t heard in years, I finally gave in, only under the condition that SHE had to do the asking.

She went over and asked him and of course he said yes. I don’t know what else she said to him, but he was happy to do it.

First, he told DC that he looked like a movie star. You know that won DC over completely. I told him that his friend BB and Mrs. H will be so jealous. (That is usually DC’s line when we go somewhere that he is excited to be, but I decided to use it just as an added incentive to help move him out of his anxiety).  Mr. Orlando was very good to DC. They had a little chat and he told DC that they would be “friends forever”, and DC certainly believes they will.

I am officially adding Tony Orlando to the list of people I will always hold in high regard  for not only taking the photo with him, but taking the time to actually try to have a conversation with him and making him feel special.

 

When they began letting all of the other attendees into the ballroom we realized that we were the only people that would be sitting at our table. One of the women that I had e-mailed before we purchased the tickets stopped by to be sure we didn’t feel as if we were being isolated. It was a perfect table and we did not feel isolated at all. We didn’t expect them to go that much out of their way to give us our own table, but I was so glad they did. DC had room for his ever-present book, he was able to get up and dance behind the table when he wanted to. There was a window right there that helped to keep him occupied; he loves to stand and just look out the window. When it got dark outside, the window then served as his own personal mirror.  There is no one that loves looking at himself in a mirror or any reflective surface more than DC does, especially that night , while wearing his new hat.

Third hurdle – Not siting at a crowded table – check!

He enjoyed watching the ballroom dancers they had performing. At one point I did take him out closer to the dance floor where he could watch them (and follow along, pretty well, I might add) from the sidelines. He sang along with “Knock Three Times” and they even had pizza bites as one of the appetizers! What could be better!

Forth hurdle – DC’s very limited food list- check!

He had a wonderful (oops) ‘terrific’** time. Fortunately the ‘drop the chocolate, frosted, cupcake strategically down the opening of his jacket’ incident occurred toward the end of the evening; the smeared chocolate all over his shirt, tie and the inside of his jacket did not ruin the entire evening.

I did contact my friend, Joe the following day to thank him and to let him know how much his people went out of their way to make DC comfortable. I appreciated everything they had done.

They have also been added to my list.

 

*(That “Everything is Related” post I keep threatening to write IS now in progress and will be posted at a later date)

** “terrific” DC’s latest word, replacing “wonderful”.

“For Sami, Love Daddy” #WorldDownSyndromeDay

Chloe and Sami

I realize that this story was originally written about Down Syndrome Awareness Month. But it was also written about one of DC’s best friends and one of my favorite people. We have watched Sami grow up into an amazing young adult (and quite the fashionista to boot). We are lucky to have Sami and her amazing family in our life.

*****

In 1992, when Sami, who has Down syndrome, was 18 months old, her father, Rich, was the Senior Producer for the Sony JumboTron in Times Square. He began producing a series of spots to raise awareness and acceptance of people with Down syndrome to run on the JumboTron during Down syndrome awareness month. He continued to produce these PSA’s on his own until 1994, when he contacted Emily Perl Kingsley.

Emily is an Emmy award-winning writer for Sesame Street, the author of a wonderful essay entitled “Welcome to Holland” and a personal friend of Big Bird. She also has a son with Down syndrome.

Emily Kingsley immediately saw the value in what Rich was producing and through her contacts involved NDSS. Together they produced spots which included children with Down syndrome from all around the country.

The response was overwhelming! All of the featured children and their families from 25 different states came to New York City to view the spots on the JumboTron in Times Square.

As there was so much interest that year, NDSS held an event in Times Square the following year, where all the families could gather to watch the video. A wonderful reception followed at Sardi’s for all the families that made the trip.

In 1995, as a result of the success of this event, the NDSS Buddy Walk was born. Again families gathered in Times Square to watch the presentation and then headed up to Central Park for the Buddy Walk.

This year Sami, now 22 years old, returns to the Square for the event that was created because of her and the love of a father for his beautiful daughter.

“In my heart the event will always be “For Sami Love Daddy”

– Which is how Rich tagged everything he produced…….

For Sami

Sami with her “Best Buddy”, Chloe were featured in the Bright Lights of Times Square in New York City on September 21, 2013.

Sami and Chloe on the JumboTron

Sami and Chloe on the JumboTron

Hi-Five as Sami and Chloe see their photo on the Jumbo Tron

Hi-Five as Sami and Chloe see their photo on the Jumbo Tron

The CALL TO ACTION – A Memorial for Avonte

Call To Action

Call To Action

– Co-written with Gizelle Tolbert

It has been close to 10 months since Avonte Oquendo left his school, unsupervised, past security guards, through an unlocked door. It has been almost 7 months since the devastating conclusion to the search for Avonte.

I do not live in New York, I did not know this beautiful child. I do not know his family, but this story hit he straight in the heart and I did anything I could do from where I live to help in the search. I remember the fear, and the worry, wishing I could do more than just donating flyers, postage or posting and reposting his information –  and finally, I remember the heartbreaking, overwhelming and shocking feeling when he was found. All of it……… too close to home.

When Gizelle contacted me a few days ago asking if I would help in the effort to build a memorial for Avonte, all of those feelings came right back up to the surface.

As it has been said, Avonte, brought an entire city together. His disappearance brought an often, very separated Autism community together. It cast a spotlight on the problem of wandering/elopement of Autistic children and adults.  He has raised awareness to the issues that many families face in trying to keep their children safe. Our children should be safe, at all costs…………. Avonte should have been safe in school.

– Avonte Oquendo should be memorialized, in any and every way possible.

A Call to Action
Please read below and lend your support to Avonte’s Memorial

– written by Gizelle Tolbert

– “The one year anniversary of Avonte’s disappearance, October 4, 2014,  is less than three months away. #AvontesLaw may finally pass this week, but Avonte’s Memorial at Gantry Park  has stalled.  We need to come together to be sure that both of these items are approved.


That being said, we ask that you to share, post, call and write (have your friends and family do the same) the necessary people who can help make this happen.

Please e-mail, mail, tweet or phone your thoughts to every major network, radio station, newspaper and magazine.

Ultimately, Mayor Bill de Blasio will be the person to approve or not approve, therefore, let us post to the other media entities but more-so to the mayor’s office. I have provided the contact information for his office, Twitter and FB Account.

I would like to thank everyone in advance!

It has also been rumored that a song will be released on the anniversary day as well”.
Contact:
Mayor Bill de Blasio
City Hall
New York, NY 10007 Phone: (212) 788-3000

On-Line Contact Form: http://www.nyc.gov/html/static/pages/officeofthemayor/contact.shtml

Twitter: @billdeblasio
FB: https://www.facebook.com/mayordeblasio

New York City Media Contact List  http://www.nytix.com/Links/TV/articles/newsmediacontacts.html


Additional Contact and e-mail addresses missing from the above list:
CBS News – Chris Ender – VP –  cender@cbs.com
60 Minutes – Kevin Tedesco – Director kev@cbsnews.com
NBC – http://www.NBC.com (on-line form)

 

If you would like to contact Gizelle, you can contact her on Twitter @candi_kizzez  or e-mail takeanotherstep@yahoo.com

 

Please let us all join together once more in Avonte’s name and memory…………

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…..

 

 

Seriously?

Seriously

I have read so many articles and lists recently regarding “What not to say to an Autism Parent” and “The 10 dumbest things people have said”, etc…….

And yes, yes, I’ve heard almost all of them before – more than once.

I’ve been told “He doesn’t look Autistic”

He doesn't look Autistic

He doesn’t look Autistic

At a birthday party a parent asked “Does he eat?”

Another: “Can he talk?”

Yes

“Well he’s okay then, right?”

I’ve always said that I’d rather people ask questions than stare or assume. Some people do, and I always welcome the fact that they want to learn. I have had many wonderful conversations with strangers that were genuinely interested in learning about autism – his autism, as the saying goes…. “If you meet one Autistic person, you’ve met ONE Autistic person.” ~ Unknown

Recently I was visiting DC’s work program. There was a woman standing there that looked a bit familiar to me, but I could not place her. She looked at me and said “I know you, Vickie”

I was the team manager for our local Special Olympics golf team for a few years (insert laughter, as I know NOTHING about golf) and her nephew who has autism, was one of my players.

We chatted for a bit.  As it turned out,  she was there because her nephew was transitioning into the same work program as DC.

As we were chatting,  she said:

“Your son is SO handsome. You should be thankful he has Autism so you won’t have to worry about all of the girls that would be flocking around him”

Now she is a very nice woman and I know in her own way, she actually thought this was a compliment, but……..

Seriously?????

A poem by my friend Charlie

The poem below was written by my friend, Charlie Henbury. Aside from his busy schedule as a college student Charlie spends a great deal of his time spreading Autism Awareness. He is an inspiration and I am proud to know him.

In your eyes I met like snow in the rain. Robbing comfort in the predictability and as I revel in your gaze I bleed into anonymity can I be close to you? can I admire you for a moment. Compare you with a spectacular view how can a simple glance from you be so visceral. You broke down so many of my walls like I’ve dug up my own pitfalls cold from the outside but warming rapidly as days unwind. I know I can no longer lie, no matter how hard I try.

– Charlie Henbury -December 7, 2013

I am proud of you, Charlie!

– used with his permission, of course-

You can follow Charlie’s blog at:
https://henburycharlie.wordpress.com