Friday, December 27, 2013

Sunday, December 22, 2013

How do you solve a problem like.......

One of DC’s favorite musicals – and there are plenty- is the Sound Of Music.

He was introduced to the Sound Of Music by his cousin Erica, who gave him his first copy of the movie in VHS form when he was 6 or 7. I never imagined he would watch it, let alone learn every word to every song, but he did. It is still one of his favorites.

He has the DVDs, the soundtrack, the album insert,  books (which were not easy to find), Christmas ornaments, music box,  he dressed as “Snowflakes that stay on my nose and eyelashes”

for the “Sound Of Music Sing-A-Long” a few years back….. you get the picture…… he loves it.

**I am fortunate to have friends that are willing to go all out for something that DC loves so much; we all took a line from that song and dressed appropriately for the Sing-A-Long. He and his friends had a ball and I think after the initial embarrassment, my friends did as well.
 A few weeks ago I found myself being tortured with “The Sound of Music Live”**. My fault! I told him it was on! I then regretted that for the next 2 hours.  DC informed me over and over again that this was “Not Julie Andrews”, but he loved it anyway.
While I was trying to endure this version, my mind went back to DC’s time in the school system and more specifically, the mainstream portion of his time there……
….this is the way my mind works……
I am all for inclusion and mainstreaming, IF it is done properly. In Dc’s case, there were many battles over many years because it was not.
Just a few examples: His history class was studying Apartheid and DC was coloring pictures of Africa.
His history class was studying Nazi Germany and he was sent off to watch “The Sound of Music” (because that’s a true and complete picture of Nazi Germany) .
Inclusion? -  I don’t think so! I understand that these concepts were somewhat out of his reach, but if nothing else, shouldn’t this inclusion include social interaction with peers and some sort of participation in and with the class? How did they call this “Inclusion” when he was coloring in the back of the room or in another room watching an entirely different movie?
As we were watching “The Sound of Music Live” and singing “Edelweiss” together – as is mandatory, I remembered one teacher, years ago; his second grade teacher, Mrs. Fair* . She went out of her way to not only include DC in the class BUT, believe it or not, to also include the entire class in activities that DC enjoyed. She made him a part of this class. He was not an observer or off on the side lines, he was a part of the class.
I can give you many examples of the things she did to achieve this, but the one that came to mind that night was; She was aware of DC’s love for the “Sound Of Music” and his love for “Edelweiss”. She had the entire class learn all of the words to the song and once or twice a week, she and DC would lead the class in song. He loved it!  She made sure he was part of this class, she made sure his “inclusion” was not just one- sided, she made sure he was comfortable with his classmates and better yet, they were comfortable with him. He just adored her.
It is unfortunate that she was the exception and not the norm. He still remembers her all these years later and the Sound of Music is still one of his “Favorite Things”
*Name changed
**Yes, he is getting the DVD and soundtrack for Christmas, but he can watch/listen to it in his room


Saturday, December 14, 2013

For Sami, Love Daddy (archives -September 2013)

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 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…….

Sunday, December 8, 2013

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!

Thursday, December 5, 2013

Paranoid? Who? Me????

One could (and would) say I am a little bit paranoid, just a tad…… especially when it comes to children. I drive myself crazy watching other people’s children. I’ve pulled drowning kids out of pools and lakes while their parents were not watching them, grabbed kids away from traffic, ledges or anything that may cause an injury, again while their own parents were not watching. When we go to a fair or some other type of event where there are a lot of people, there is a good chance I will be bringing a lost child to security or helping him/her find his/her parents. There’s more; but you get the picture. I can’t help this. I have always been like this and have always said that I am just too paranoid to be anyone’s mother.

So why not give me a child with Autism…..

Welcome to a whole new level of paranoia…..

I was talking to my friend, Al at work last week. His son had just been sick; trip to the Emergency Room sick. He’s just fine now, but I can imagine how frightening it must have been at the time. This particular day was the day of his follow-up appointment. From there we moved on to the subject about his own paranoia. He insists on taking his kids to the doctor for everything (in his words). I get that! It’s always worth a trip to the Doctor to hear everything is alright than to continue to worry that a cold may not be just a cold…..just for the peace of mind. But he was beginning to feel that he was being overly protective.

Now, he has heard plenty of my DC-obsessed stories before but I decided he needed to hear a few more.

I told him that when DC was little I would calculate the time that he would be alone until my ex got home from work if I dropped dead, “right now”.  I’d make sure there was nothing around that could hurt him if something like that were to happen. I had no reason to believe I’d be “dropping dead” at any time, but just in case.  I forgot to tell him that I would also force myself to watch Rescue 911 when DC was little and then have nightmares about all the horrible things that happened. When his father asked why I insisted on watching the show if I had nightmares because of it, I told him that I was afraid that they would show something that I hadn’t considered happening and I would miss it.  – And there were actually a few accidents that I wouldn’t have come up with in my own head, believe it or not, unless I had seen the show. So there!

I also forgot to tell him about the time I called my poor sister-in-law at her cottage about 10 times because his father took him camping at the beach, near her cottage and didn’t call for two days! What if something happened to him and DC was in some tent on a beach of all places, by himself? – Fortunately his Dad’s sisters are used to me…..

I’ve been a single mother for 20 years now and I wouldn’t have it any other way, but being alone with a child with special needs can be, for me frightening at times. Anytime I am sick I wonder again, if I dropped dead “right now”, how long would it take before someone knows he’s alone? What would he do? Would he be safe until someone figures this out?  As you can see, it’s not the “dropping dead” that I worry about, its DC being by himself for who knows how long.

The final nugget from the “tales from the paranoid mind” for Al was to tell him that when DC was young and we went grocery shopping; he would get in the car, I would unload the groceries and then I would walk the 20 feet to put the cart back, in full view of the car. But I would be sure to leave his door wide open because if I happened to get hit by a car in those 20 feet (or drop dead), no one would know he was sitting in the car and I can’t say for sure that he would get out or let anyone know he was there. He could be sitting there for hours before someone notices. At least someone might wonder why there was a car door wide open in the parking lot and take a look inside.

 – In any situation, I can come up with at least a dozen disaster scenarios.  I can and do make myself crazy over this child, but he’s worth every second of the craziness.

(We won’t talk about the 6 days with no power, no phone and no cell service during the snow-pocalypse a few years back………)

Needless to say, Al went home that day feeling much better about himself.


And yes, He’s 22 and I do still check to see if he’s breathing when he is asleep

Sunday, December 1, 2013

#TravelingWithDC - Puerto Rico with a side of Disney and Harry Potter

(January 2011)
The plan was not go to Disney. I did not want DC to think that every airplane lands in Disney, but....
it always happens...
"How can we be this close and not go?"

We headed to Orlando specifically to go to Universal for the new (at the time) Wizarding World of Harry Potter, then onto Puerto Rico. Disney was not to be in the mix.

But..... knowing how much he loves Disney, we couldn't skip it.

I have already written about the Disney leg of the trip in "Looking Handsome in the Princess Room" so I will just give you a few photos of that and Universal and move on to Puerto Rico....

There was quite a big storm the morning we left and it was doubtful that we would even be able to take off. If I remember correctly, ours was one of the very flights few that did.

The plan was to go to Downtown Disney first and then to The Magic Kingdom around 5 or 6 since it was not in the original plan. Universal would be the following day so we could spend more time there than we did during the last trip.

When we arrived at Disney at 5:30 we discovered that it was CLOSING at 6 pm!!!!!!! The entire park had been rented out for a private party!!!!!

Try explaining THAT one to DC!!!

This meant that we had to try to do both parks the following day.. So much for spending extra time at Universal.

We should have stuck to our "No Disney" plan, but it was too late for that.


I am a big baby and cannot (will not) go on the bigger rides. But..... it is a requirement that I be the one that rides The Cat in the Hat with him. When there is not line (even when there is), he just wants to get off and go right back in line and do it again. I have been on this ride more times that I can count or care to remember.

Moving on to Harry Potter... It was so, so crowded....

On to Disney: I believe this was the trip that we discovered Story Time With Bell was gone!

Me doing a Happy Dance:

But.... as a punishment for the aforementioned Happy Dance, we were required to see the castle show more than once... much more than once.

Finally... On to Puerto Rico (MY favorite place)

We left home during a storm a few days before and apparently they continued to get more snow.
DC seemed to be enjoying his "snow day" on the balcony...

A slide is always a hit, but the swim-up lunch was even better.

Walking (and riding) around Old San Juan

Please note the Hard Rock bag.... if there is a Hard Rock to be found, DC will find it.

It always amazes me; he is terrified of dogs, cats and most other animals, but horses.... not at all. (His terror of all animals has decreased a bit over the years)

DC loves to dance and joined the Cha-Cha lessons they were giving at the hotel. He did a lot better than I would have.

More sightseeing:

 More dancing the following night.. I do not know the name of the dance they were learning but DC did a great job again!

Puerto Rico was a hit with him. I was worried, but he did really well.

Just so you know...... Doug's choice of footwear was bad enough but WITH socks......

was NOT happening.....

No, No. NO!

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