“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)

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Everything is related – Toy Story

The second in a series of “Everything is Related” entries:

Everything is related; from an earlier post – Everything is related – Mary Poppins to New York City:

– Everything being related, many times, is the ability to relate one movie or actor to another. This has helped him to be more open to watching something that may not be Disney-based. This was not always the case, but now he can go and enjoy a movie with his friends or at an ARC activity without issue……..

Everything being related, oftentimes just explains his love for a particular city, game, song or some of the many other things that he does or says.

Everything being related,  has, many times been used as a learning tool. “

This post is about just that…

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DC as Woody and Candy as Jessie from Toy Story – Halloween

 

EVERYTHING IS RELATED – TOY STORY…..

Again we start at Disney. Disney, Disney, Disney anything Disney. When the first Toy Story came out way back when, I wasn’t sure DC would really go for it at all. Yes, it was Disney, but it was not the Disney he was used to. There were no princesses, no castles, no Haley Mills and most of all, no music. Of course I know that there was music, but not the “Hollywood musical” type of music – characters would not be belting out a song at the drop of a hat. DC was never a “toy” kind of kid. He never really liked or played with toys, so the toys in the movie were nothing that he would be familiar with. But, to my surprise, he loved it AND the two that came after. This boy who does not like toys actually owned a Woody, Buzz, Mr. Potato Head and a Jessie. No, he did not want to play with them, he just wanted to own them.

Tom Hanks brought him to “The Polar Express” and of course “Saving Mr. Banks” (also related to Mary Poppins).

Tim Allen…..Tim Allen….. he loves Tim Allen. That love brought him to “Jungle to Jungle”, all of the Santa Clause movies, “Christmas with the Kranks” and “Home Improvement” (yes, woo hoo, an actual TV show)…. but there is more…..

When DC was younger, transitioning into a new school was never easy, but it did seem to be easier on him than some of his other friends (and me).  “School age” for Special Education here is 3-21 years of age. So there were many moves and many transitions during his time in the school system – kindergarten building to elementary, to middle school, to high school. The school handled these transitions very well. They started early with many tours of the new school, picture books with photos of the classroom and other areas of the school and a few visits (orientations) with parents. DC was always anxious about these moves but he always did rather well due to all of the work the school system and I put in to make the transitions go as smoothly as possible.

The number of children in SPED in DC’s age group seemed to be much larger that the kids moving up in previous years. This meant that the schools they were moving up to had a lot more students to accommodate at one time than ever before. We always joked that our kids always seemed to be the “test subjects” for these new or expanded programs. At times this did not go well.

When DC was in his junior year, I started looking at alternate programs for him to attend for his last two years of school. DC would walk with his class at graduation at the end of his senior year (at 18) and then either spend two more years in the high school or I could have him out-placed into a different program that focused more on getting him ready for the next phase – a work/day program and life. I already knew I did not want him in the high school for another two years and I was already leaning towards another program the next town over. Mid-senior year, the high school announced that they were creating a transition program of their own in conjunction with a local university. It would be up and running in time for our kids to start that September. The program they came up with sounded wonderful but, our kids would be the first ones through and again the “test subjects”. This worried me.

On the other hand, I was torn because it had only been over the previous couple of years that DC recognized “friends”. He had real friends. Not just the children of my adult friends, but real friends. People that HE considered friends. Friends that he did things with and wanted to do things with. DC had always gravitated more towards adults and with the exception of his friend of many years, BB, did not pay much attention to kids his age at all. I didn’t want him to lose that connection. I rationalized that “social skills” were one of his major issues and if I tried this program and really did not like it, I could always move him to the other program I was looking at earlier.

Putting this program together was a long process. Obviously there are many legal issues to address when creating this type of program. By mid-summer the other parents and I were beginning to panic that this program was not going to be up and running by September. Fortunately by August it was a go, but they had lost all of that transition time they would have had during the school year. We did get to visit a few times before the school year started and I did talk to him about it all summer. Some of my friends children have siblings that went off to college so in turn their children expected to go off to college too. DC doesn’t think like that. He doesn’t have any expectation of what should come next. He lives in the ‘now’ until the ‘now’ changes to a new ‘now’, but we were calling it ‘college’ for everyone’s benefit. “College, College, College” he was going to college. I was still worried, having missed all of that transition time.

Toy Story 3 had come out right around this time. We bought the DVD and watched it at some point during that summer. It didn’t even occur to me while we were watching it or even up to the point when DC was standing at the front door waiting for the bus on the first day of school, that he made a connection in his head with the movie…..

He turned to me and said “Mom, I am going to college, just like Andy in Toy Story”

….. and he was.

With that, everything was just fine.

“Mom, we have to see Peter Pan Live on ‘Firsday’ – Please!”

DC loves Peter Pan. (If you are not yet aware of this, please read “Second Star to the Right and hang a left”)

He has just discovered that NBC will attempt a live performance of  Peter Pan (Peter Pan Live) this Thursday night. It is already written on the calendar so there is no way out of it. I was required to add it to the calendar the moment he saw the commercial.

Last year, I suffered through “The Sound of Music Live” and I was really hoping to avoid “Peter Pan Live” this year. Yes, I knew it was coming but I remembered that they released the “Sound of Music Live” DVD in time for Christmas last year, so yes, I pre-ordered the “Peter Pan Live” DVD this year because no, I don’t want him to miss out on it altogether, I just really didn’t want to have to watch it myself as he watches his DVD’s in his room or on his laptop. My plan really didn’t work out all that well…. he saw the commercial.

So come Thursday night, you know where we will be.

In anticipation of Peter Pan Live, and in remembrance of  ” The Sound of Music Live” –  here is my post from December 2013:

How do you solve a problem like……

My Favorite Things

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”

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.

Girls in white dresses...... Snowflakes.... Silver White Winters/Melt into Spring...... Favorite Things.....

***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

 

 

 

 

 

 

“For Sami, Love Daddy” – Repost from September 2013

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.

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

Secrets, Surprises, a Little Bit of Faith and Pizza…………

 

 

The Guard

This past February all of the Winter Guard parents were asked to contribute a short story or memory about our Winter Guard Director. She would be celebrating her “-Mumble, mumble -th” Birthday in March. Her son wanted to put together a book of memories for her.

DC has been a participant with this special needs Winter Guard team for 6 or 7 years. He really loves it, even though at first he had a really tough time focusing and rarely did anything close to the moves that everyone else was doing. He didn’t care. He wanted to wave his flag. He has improved very much over the years and still enjoys participating. He loves the performances most of all. He loves the attention –  he loves the applause. He is the only one to take a bow while the rest of the team is in the “end of performance” pose. (I am sure there is a proper and official name for that, but “end of performance pose” is the best I can do)

I wrote up my memory, DC drew a picture and we sent it along to the director’s son. Had I been really thinking, I would not have told DC about the birthday. It was still 3 weeks away and DC is always very excited about birthdays. DC also does not understand  “surprise” or  “secret”.

A secret, is DC whispering in a raspy voice louder than his already very loud voice.

A secret is pizza for breakfast.

There are times, not often, but there are times, when we have left-over pizza in the house. When there is left over pizza, DC loves to have it for breakfast. This happens all of once every couple of months, but I know my son. If anyone were to ask him what he had for breakfast, he will answer pizza. If someone should ask him the next day, he will answer “pizza”, not because he had it again, but because 1) That is what he would have wanted to have 2) It becomes a standard answer because he is tired of answering questions 3) That was his favorite breakfast that week so that’s his answer and he is sticking with it.

Not wanting people to think I give him pizza every morning, we decided to call it “Secret Breakfast”. Well…. as I said, DC doesn’t understand the concept of a secret, so anytime we go out with friends for pizza, or we are at a party where pizza is being served,  he always asks for “Secret Breakfast” – then I have to explain what “Secret Breakfast” is to my friends or other parents, (because of course, they ask – wouldn’t you?) completely defeating the purpose of the secret part of “Secret Breakfast”. At this point “Secret Breakfast” is just something we call pizza, people now just ask him if he wants to take some home for “Secret Breakfast”, and yes, they also call it “Secret Breakfast” when they offer.

A surprise pretty much runs along the same lines as a secret. If we buy a gift, and I tell him not to say anything because it is a surprise, the very first thing he will do when he sees the person that we bought the gift for is:

– Go over to that person, point at them  and says (to me) “Don’t tell anyone, surprise, shhh” and many times he will even tell me what the surprise is. I suppose because he is addressing me and not the person, he thinks he is not giving it all away.

Knowing all of this, I should have realized that the next time we went to Winter Guard practice, he would ask about Mrs. F’s birthday. It was still two weeks away. I was worried that if he mentioned it in front of her, she would know that something was in the works. There would be no reason for DC to know that her birthday was coming. I reminded him over and over and held my breath for the next two weeks. Fortunately he did not give it away, not for lack of trying though –  he did mention it a number of times at practice but luckily she was not close enough to hear it.

I saved the story to post at a later date, after her birthday. My mind, being the steel trap that it is, filed it and forgot to post it.

We were out tonight for pizza with DC and his friends when DC asked for Secret Breakfast and I remembered the post – because this is the way my mind works.

Here is the “Little Bit of Faith”  portion of this post.

Happy very belated Birthday, “Mrs. F”!

 

The one event that always sticks out in my mind is the High School Ice Cream Social performance in 2011. The performance was a last-minute addition to the Team’s schedule. Being so last-minute, many of the Buddies were not available to perform with our children.

The Team had never rehearsed, never mind performed without their Buddies before, so this was something totally out of their comfort zone. But there we were anyway, with 3 buddies. Mrs. F. had faith that they would be able to do this. I am not sure that many of the parents had as much faith, but Mrs. F. did.

There was a little bit of time to do a few quick rehearsals before the show but as I said, this was a very new experience for them – a few quick rehearsals without their buddies would be like starting from scratch. Mrs. F. gave them a pep talk before and after each run-though and made it very clear to all of them that they could do this! 

She gathered them around for one more pep talk before they went out to perform. She believed in them so they believed in themselves. They knew they could do this!

And they DID! The show went off without a hitch. They gave a fabulous performance! How proud they were to be able to do this without help! Mrs. F. had faith and in turn, so did the Team (and the parents)……  All it took was a little bit of faith…….. And THANK YOU for the faith you have in, and the encouragement you give to our children!

Happy Birthday

 

 

There is no one better! Thank you for everything you do……..

 

How do you solve a problem like……

My Favorite Things

My Favorite Things

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”

Snowflakes that stay on my nose and eyelashes.

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.

Girls in white dresses...... Snowflakes.... Silver White Winters/Melt into Spring...... Favorite Things.....

Girls in white dresses…… Snowflakes…. Silver White Winters/Melt into Spring…… Favorite Things…..

***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