“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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That’s the way it should be-eeee

 

grease 153IMG_3611A repost of an event from two years ago, in honor of my friends that always come through, put up with and go along with not only attending these events but my over the top, out of their comfort zone ideas.

They will not say that they did not have fun!

But really, they are the best!

From February 27, 2014 (Event Date)

“We go together………..”

…like Ramma lamma lamma Ka dinga da dinga dong
Remembered forever like Shoo-wop sha whada whadda Yippidy boom da boom
Chang chang changity chang shoo bop That’s the way it should be
Waooo Yeah!”

GreaseSR

These Kids Rock! They really do!

That was originally all I intended to say. I wasn’t really considering writing about this, but……. as I was thinking about just how proud I am of each and every one of them and just how much DC and his friends just rise to the occasion and always have a great time together,  I just had to mention the fact that not only does DC have the best friends anyone could hope for…. I do as well.

As I wrote in an earlier post:

***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.***

DC and I are very fortunate to have these people in our life. I am not just talking about the sing-a-long we just attended, but in general, these people are just the best, THE BEST!

DC and his friend BB love Grease. BB is a long-time fan, DC became a fan because of him. When I heard the local theater had scheduled a Grease Sing-A-Long, I knew we just had to attend. Everyone agreed to attend and then I proceeded to harass them for months about costumes. I will admit that I can be a little bit high pressure when it comes to costumes (just a little bit), but I am sure they expected it and if they didn’t, they put up with me anyway. I am sure the last thing the adults wanted to do was to wear a costume again (Halloween is over, can’t we get a break?) but they agreed.

But…. did they expect to be wearing toilet paper rolls? I doubt it. I think they actually thought I was joking when I first brought it up. They quickly realized that I never joke about costumes so the “roll collection” process began. BB and his Mom, Donna were not able to attend the Sound of Music event with us, so as BB was looking forward to wearing his “Grease Garb”, I don’t think Donna realized that she would also be in costume as well until about a week before the event.

We collected our toilet paper and paper towel rolls and headed to Tonya’s house one Sunday afternoon. Tonya being the craft genius and glue gun wizard, was able to figure out just how to do this.

Talk about “Above and Beyond”; she sat there for hours gluing toilet paper rolls to foam strips! All that we had to do was supply our heads.

Glue Gun Wizard

Glue Gun Wizard

They looked fantastic! They were unexpectedly comfortable too!

We headed out to the theater on Thursday night in single-digit weather – not wanting coats to muck up the costumes – it was COLD! We had 10 seats in the first row of the upper orchestra section. Coincidentally a friend of mine had the rest of the seats in that row! Together, we made the best row of costumes there (my opinion only, but I firmly believe this to be true 🙂 ).

We sang, we danced, we had many, many photos taken of us as a group and of us with strangers. We were interviewed and photographed by the local news paper. Those under the delusion they would not be noticed, were wrong.
The “kids” had so much fun singing, dancing and using the props provided by the theater. They just ate up all of the attention they were getting.
The adults had a great time, singing and dancing as well..

except for this guy……..

Except this guy - Grease Sing A Long - Beauty School Drop Out

Except this guy – Grease Sing A Long – Beauty School Drop Out

Those still under the delusion of anonymity, had that shattered when they were plastered all over the news on Saturday.

 

 

The Theater's Facebook Page

The Theater’s Facebook Page

The Theater's Facebook Page

The Theater’s Facebook Page

 

 

As the show was on a Thursday night and not on a weekend, we weren’t able to go out to eat in full dress afterwards – this had to be some consolation to the adults anyway……

But all joking aside, we did have a wonderful time. I can’t say enough about all of them.

Walking around in public wearing toilet paper rolls….

the truest measure of friendship….

Thanks to all of you!

*Thanks to my friend *Al at work, who always comes up with a fantastic photo of our outings

December reruns

Last week I wrote about DC anxiously awaiting “Peter Pan Live” on Thursday.

His anticipation of the production led me to remember the previous years production of the “Sound of Music Live”, which in turn led to a repeat my Sound of Music post from December 2013.

(By the way, DC’s review of “Peter Pan Live” – “Two eyes closed” – he fell asleep after only an hour… take from that what you will).

The “Sound of Music” post contained photos of a Sound of Music sing-a-long we attended with friends. That and the fact that DC had been watching “Grease” this weekend, led me to the “Grease – Sing – a – Long” we also attended.

Because everything is related and this is the way mind works…….

From March 2014:

“We Go Together……..

…like Ramma lamma lamma Ka dinga da dinga dong
Remembered forever like Shoo-wop sha whada whadda Yippidy boom da boom
Chang chang changity chang shoo bop That’s the way it should be
Waooo Yeah!”

GreaseSR

These Kids Rock! They really do!

That was originally all I intended to say. I wasn’t really considering writing about this, but……. as I was thinking about just how proud I am of each and every one of them and just how much DC and his friends just rise to the occasion and always have a great time together,  I just had to mention the fact that not only does DC have the best friends anyone could hope for…. I do as well.

As I wrote in an earlier post:

***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.***

DC and I are very fortunate to have these people in our life. I am not just talking about the sing-a-long we just attended, but in general, these people are just the best, THE BEST!

DC and his friend BB love Grease. BB is a long-time fan, DC became a fan because of him. When I heard the local theater had scheduled a Grease Sing-A-Long, I knew we just had to attend. Everyone agreed to attend and then I proceeded to harass them for months about costumes. I will admit that I can be a little bit high pressure when it comes to costumes (just a little bit), but I am sure they expected it and if they didn’t, they put up with me anyway. I am sure the last thing the adults wanted to do was to wear a costume again (Halloween is over, can’t we get a break?) but they agreed.

But…. did they expect to be wearing toilet paper rolls? I doubt it. I think they actually thought I was joking when I first brought it up. They quickly realized that I never joke about costumes so the “roll collection” process began. BB and his Mom, Donna were not able to attend the Sound of Music event with us, so as BB was looking forward to wearing his “Grease Garb”, I don’t think Donna realized that she would also be in costume as well until about a week before the event.

We collected our toilet paper and paper towel rolls and headed to Tonya’s house one Sunday afternoon. Tonya being the craft genius and glue gun wizard, was able to figure out just how to do this.

Talk about “Above and Beyond”; she sat there for hours gluing toilet paper rolls to foam strips! All that we had to do was supply our heads.

Glue Gun Wizard

They looked fantastic! They were unexpectedly comfortable too!

We headed out to the theater on Thursday night in single-digit weather – not wanting coats to muck up the costumes – it was COLD! We had 10 seats in the first row of the upper orchestra section. Coincidentally a friend of mine had the rest of the seats in that row! Together, we made the best row of costumes there (my opinion only, but I firmly believe this to be true 🙂 ).

We sang, we danced, we had many, many photos taken of us as a group and of us with strangers. We were interviewed and photographed by the local news paper. Those under the delusion they would not be noticed, were wrong.
The “kids” had so much fun singing, dancing and using the props provided by the theater. They just ate up all of the attention they were getting.
The adults had a great time, singing and dancing as well..

except for this guy……..

Except this guy - Grease Sing A Long - Beauty School Drop Out

Those still under the delusion of anonymity, had that shattered when they were plastered all over the news on Saturday.

The Theater's Facebook Page

The Theater's Facebook Page

As the show was on a Thursday night and not on a weekend, we weren’t able to go out to eat in full dress afterwards – this had to be some consolation to the adults anyway……

But all joking aside, we did have a wonderful time. I can’t say enough about all of them.

Walking around in public wearing toilet paper rolls….

the truest measure of friendship….

Thanks to all of you!

*Thanks to my friend *Al at work, who always comes up with a fantastic photo of our outings

….and they cancelled Halloween – Part Two

~As you may have read in Part One – during the “Halloween Nor’easter of 2011, we lost power on Saturday night, October 29th~ Now it was Monday.

Monday, morning came. It was Halloween and still no power. I regularly take Halloween off from work, so luckily we did not have anywhere to be. DC had his ‘un-toasted’ toast for breakfast. I realized in my fervor to find coffee the day before, I never had anything to eat (“The Storm Diet” was a ‘terrific’ diet while it lasted) – so I joined DC for some ‘untoasted toast’, went to work again on the ‘*RS Room’ and began mapping out a new coffee hunt.

Before we left on our coffee hunt, DC’s Dad showed up. He delivered a contraption that he made from a car battery. This was, in my opinion THE best thing ever! A place to charge phones, plugs for lights or whatever else I needed to plug in, although the coffee pot did not occur to me at the time, lights for DC, did.

293835_3926409243267_1941068327_n

The downside…… he wanted to take DC with him to his house. Now of course I want DC to be somewhere warm, with power, water and without a RS Room, but on the other hand, I don’t ever want DC and I to be separated during any sort of emergency type of situation; I just want him with me, plain and simple.

Now feeling very cut off from the world, I began my ‘coffee quest’ alone. The Dunkin Donuts I found the day before was no longer open. I stopped at a nearby hotel – knowing full well that there were no hotel rooms available in the state, but I was there, so I may as well check it out. I felt silly even asking and of course there was nothing available.

Tonya, Coach and I tried to keep tabs on each other during this whole fiasco, but with my phone not really working, it was difficult. Fortunately, Tonya called while I was still out driving. She called to say that another friend, Pat, had just had her power restored. She had invited us all to come for dinner and trick-or-treating in her neighborhood. Our kids trick-or-treating together has become somewhat of a tradition. No matter how many Halloween parties DC attends and no matter how many different costumes he gets to wear before Halloween, he still wants to wear a costume ON Halloween. I, for one was tired of the stares and comments when out trick-or-treating with an 18, 19, 20-year-old alone. Going out in a group just seems to work out better.  I immediately called DC’s Dad and told him he could keep him there for the day, but he needed to be home at 5. He was not going to miss Halloween if I could help it and if Pat had her power back, it wouldn’t be long for us to have our power restored.

I kept myself occupied the rest of the afternoon alternating between working on the RS Room and searching for coffee. Finally DC came home. I got him into his costume while it was still light out. I have to say, we planned this costume well…… “Elf” complete with a snowy background.

DC was happy to see his friends, happy to be celebrating Halloween and happy to be somewhere with power. Pat and her neighbors were happy not to be stuck with all of the Halloween candy they had purchased ahead of time.

 

 

bam bam

 

Elf, “Gabriella Montez” (from High School Musical), Sly Stallone and Pebbles were ready to hit the road for trick-or-treat. Surprisingly, almost every house was ready for this last-minute Halloween. Trick- or- Treating with snow on the ground was an  experience they will not soon forget, I am sure. I will never forget it, for sure.

After covering the neighborhood, carrying full bags of candy, it was time to head home. I was still living under the delusion that this would be over by the time we arrived home that night – it was not. We piled on our “storm wardrobe”,  comforters, blankets, etc. and went to sleep. I had to be back at work on Tuesday and when Tuesday morning arrived I still wasn’t sure that there was power at the office, but off we went. Driving to work, I realized that I was preoccupied with hanging branches. This preoccupation lasted for many months after this storm. Even now, when it is windy or stormy, I find myself watching the trees as I am driving.

There was power at the office and DC was able to sit and watch some movies on his laptop. I was just considering bringing him back there that night to sleep in my office, when my mother called. Her power was back so we made plans to go there.

The next two days went pretty much the same as Tuesday. Work, home, check for power, work on RS Room, pack some things and go to Grandma’s before it got dark.

In the morning –  stop home, check for power, work on RS Room, go to work with DC. I really have to say that for a child so very afraid of storms, lightning, clouds, thunder and the power going out – he was a real trooper. I was proud of him. It was almost as if he was able to put his fears and the behavior that goes along with those fears on hold for the duration of this storm and aftermath.

On Thursday night at about 8pm, I called my landline – another thing I did regularly when we were out of the house, and the machine picked up! We had power!

My mother wanted us to wait until morning to leave but I could not think of anything else but getting the RS Room working and clean. DC was beside himself yelling, “My powers is back!” (DC-speak; his powers)

Home – RS Room fixed and clean – everything went quickly back to normal.

All but one party was rescheduled – our “cancelled Halloween” had become a weeklong event running into the second week of November.

Best Buddies held their party on the following weekend – Pebbles and Bam Bam attended – with “Gabriella Montez”, and Best Buddy, Steve of course.

 

Many of the surrounding towns officially cancelled Halloween and rescheduled it for the following week – our town did not. We did receive a flyer in our mailbox from a neighbor with young children asking that the neighborhood join in for an hour-long  trick-or-treat on Saturday night. DC and I participated and then headed out to the next town over – where Halloween was officially rescheduled – to visit a friend and celebrate “Fake Halloween”.

We just happened to have one more unused costume set on-hand that we could not let go to waste.

“Yes, Captain Hammer’s here, hair blowing in the breeze. The day needs my saving expertise”*

Because “A man’s gotta do what a man’s gotta do” * (and a Mom too)

 

I do understand that others had it much worse. My friend Steve had no power for 11 days. 11 Days!!!!! I would have had to just move away at that point. I hoped that because DC had gotten to the point during this whole ordeal where he seemed to be able to put his fears aside, that this new attitude would carry on through to the next storm – it did not.

School had been cancelled throughout this whole power outage. Between hurricane Irene in August and the Halloween nor’easter, all snow days had been used up for the school year and it was only early November.

On the UP side……….. I did loose 5 pounds on the Halloween nor’easter diet and I did get one of those store-bought contraptions from DC’s dad for Christmas that year.

It does have to be charged every few months and each time it comes out, DC gets nervous.

 *RS Room – Raw Sewage Room

(*Joss Whedon’s “Dr. Horrible’s Sing-A-Long Blog – 2008)

….and they cancelled Halloween (Part One)

(In a recent post, Second Star to the right……. and hang a left, written about our ‘escape’ from hurricane Irene, I mentioned that we were not as lucky a few months later)

It was Friday, October 28, 2011 we were gearing up for a marathon Halloween weekend. Now,  I can be a lot of pressure on Halloween, I know this, but my friends seem to put up with it and fortunately DC loves Halloween as much as I do, so the “pressure” is not too much for him; he enjoys it.

On Friday night we met my friend Coach and her daughter, Candy at the haunted mansion. The ‘kids’ looked quite terrified, but they made it through. DC, although he looked like he was about to fall apart, wanted to go again, while Candy decided to sit out the second go-round.

Mansion

Coach, Candy, DC and I met Doug at a local diner for dinner afterwards. Doug was leaving that night for another leg of his quest to golf in all 50 states. He would be away for more than a week.

After dinner we all went home to get prepared for the 3 party marathon we had scheduled for the following day, one more on Sunday and then of course, Monday was Halloween. Usually the parties are spaced out a little more, but this year they were all crammed into the same weekend. It took a lot of planning costume-wise. The parties were back to back, and DC has grown accustomed to having a different costume for each party and another for Halloween itself (I love this child!!!) so I had to plan the best way for him to make quick changes between each party.

Saturday was a beautiful sunny day. I took this photo at noon outside the house right before we left to meet Tonya and DC’s friend, Salli at their house to begin our marathon.

Puck before the storm

As soon as we arrived, Tonya told me that her husband, Rick mentioned that the weather people  were predicting snow; heavy snow. He warned that it could get really bad out on the roads and there still being  leaves on the trees, may make matters worse.

What????

It’s October!

How much snow could we possibly get in October?

(We totally missed the “leaves are still on the trees”, point – What could that possibly have to do with anything?)

We decided that he didn’t know what he was talking about and even if he did – the sun was still partially shining – this probably would not even begin until much later in the day. We were used to the weather people making a mountain out of a mole hill, so we decided to go full speed ahead with our party plans.

It took only 30 minutes to arrive at Camp for the party. The change in the weather in those 30 minutes was drastic!

The snow was really coming down!

Puck in the SnowSalli in the snow

Still in denial about all of this….How long could this possibly last – It is October! We went inside and joined the rest of the party-goers that were probably in much denial as we were. It seemed as though everyone that RSVP’d  attended and no one left early. It IS October, after all.

We met up with Coach, Candy, Katie and her daughter, Kate (who was dressed as Ariel; this made DC’s day). No one seemed overly concerned about the snow, the party went on as if nothing was going on and we really intended on moving on to the next two parties…..
until we had to get back on the road, that is….

roads

Okay, so maybe we should skip the other parties – they had already been cancelled at this point, we just did not know that.

Katie and Kate witnessed a terrible accident on their way home, but made it home safely. Coach and Candy got home safely as well. We arrived at Tonya’s house to find her son in the driveway, looking at the very large tree branch that had fallen on his car.  Okay – got it –  “leaves still on the trees” – it finally clicked. Their power was out. Tonya went into panic mode (panic mode is usually my role – Tonya is normally relatively calm about everything) – yelling at everyone to get out of the driveway and out from under the other low-hanging branches. Her son, on the other hand, looked relatively calm about the branch laying on his car. DC and I got into my car which was parked under another very large, now very low-hanging branch and started home.

Okay, allright, I’ll say it…….. Rick was right.

We live only one mile from Tonya’s house but it took us 45 minutes to get home. DC was stimming wildly and scripting loudly about the power – his worst fear – all the way.

We made it home and YES we had power, a little unbelievable as our neighborhood seems to lose power quite often, but we did have power and we were thrilled.

Home safely, WITH power, DC and I went about our normal routine assuming that all of this would be over by morning. Within 45 minutes of our arrival home, the power went out. DC was screaming from the bathroom, I told him to stay there, got a flashlight and went up to get him. I hunted about for more flashlights, got DC’s pillow and blankets and brought them down to the living room. THIS IS THE MOMENT, right here that the “sleeping on the couch” situation began. 3 years later, we are still sleeping on the couch most nights.

It was early but I tried to convince DC to try to go to sleep and the power would surely be back by time we woke up – I really believed that, I really did. Of course I had to stay right there on the other side of the couch, so I tried to get some sleep as well.

We woke up on Sunday morning and still no power. Still convinced it would be back soon, DC had breakfast, under protest. Even though losing power is one of the things he obsesses about, he just can not understand that I can not make toast. He can have bread with Peanut Butter (something he ate everyday for lunch), but it was morning and mornings are for toast, not bread. There was plenty of other non-refrigerated items that he could have, but no, he HAD to have toast. He finally gave in and had some “un-toasted” toast and we set out to find coffee.

My landline was down, my cell was only working sporadically. Most of the time, I had to drive to the center of town to get any reception at all. We kept taking short trips throughout the day in search of coffee. I didn’t want to drive too far as with no information to be had, I never knew what we’d be driving into, but on the other hand I needed coffee and DC needed something to do. He loves to and will read his books for hours, normally, but not during a power outage – he is just much too distracted and upset to do any of the things he normally would do.  I have driven him around for hours in the past when we had an outage, but this was different, there was really nowhere to go, trees and branches were still falling and I didn’t want to waste gas. I didn’t know where we would find an open gas station.

It was a very odd and unsettling feeling not really knowing what was going on out there. I felt cut off from the world. Between feeling cut off  and my “dropping dead and how long will DC be alone before anyone knows?” obsession – I was not having a good time.

The day was spent, dealing with what I affectionately named the “raw sewage room” -RS Room for short –  (Did I forget to mention that DC clogged the toilet the very second that the power went out? Did I forget that?) – and taking quick, not too long trips to find coffee. I did finally find a Dunkin Donuts (because apparently I always do) open at about 4pm. They did not have power and were just about out of everything but coffee was still available.  I’m not quite sure why or how they still had relatively hot coffee available with no power and I did not ask; I ordered the bucket size.

At this point, DC was no longer fixated on the power coming back, he was just defeated, very quiet, no emotion, just going through the motions. We got ready for the night to come, I made another attempt at fixing the “RS room’, we read for a while and went to bed. Worried about the cold, I had DC wearing thermal underwear, thermal socks, slippers and his very heavy robe. I began piling blankets and comforters on us and at the point when he had just about enough, he yelled, “Mom! I don’t want to be warm!” – of course he wanted to be warm, but it was his way of telling me that I was putting way too much stuff on him.

Monday, morning came. It was Halloween –  and still no power. Halloween was looking grim!

To be continued in “and they cancelled Halloween- Part 2”

(Happy Halloween to you all! Keeping our fingers crossed for No Storm today!)

“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……..

 

A year later……..I know we can’t have it both ways, but….

While driving DC and his friend to their first day of camp this summer; hearing her giggle in the back seat and watching DC “happy stim” in the front seat – both so excited to get to camp to see their “Camp Friends” again, I thought about the post I wrote last summer on their first day.

A year later, I feel exactly the same way. They were so excited to go and I felt sad that they can no longer spend their summer at camp as they used to because they are adults, out of the school system and in a work program. They have to use their vacation time to be able to attend camp for a couple of weeks every summer.

DC has attended this camp since he was 5. At first only a couple of days a week, with support because he was non-verbal at the time, and then when I noticed that he was much more responsive and receptive on the days he attended this camp than the days he attended the “main-stream”  camp, I decided to let him attend 5 days a week. Because DC would rather just sit and read a book than get involved, and this, of course is easier for the main- stream staff,  that was what they let him do. My reason for sending him to camp in the first place was to keep him occupied and involved, so he did not regress during the summer months. The main-stream camps were not providing enough support to keep him from regressing.  They weren’t making an attempt to get him involved with any of the activities, whereas this camp did.

My intention today was to write a new post about the first day of camp, but after re-reading last years post I discovered that there was nothing different about the feelings I had last year and the feelings I have right now. I thought I would be used to  “adulthood” at this point.

It turns out that I am not……

From July 2013 – We can’t have it both ways…. but it’s still a little bit sad.

Today was my son’s first day attending day camp this summer. He has attended this camp since he was 5 – he’s 22 now.

Every summer he was able to attended camp all summer long, even staying after until 8pm for a special after camp program they hold twice a week. He loves it there.

Now that he’s 22 and aged out of the school system, he is in a work program, year round. When I started looking at programs for him I was shocked that they didn’t get the summers off!

Of course they don’t, they are adults and have to do their job every day, just like we do. But it was a rude awakening for me at the time.

Everything changes after “school-age”. He’s aged out of Challengers baseball. Seventeen years of baseball….over. No more February vacations, Spring Vacations or Summer vacations. He’s “working” now, with 3 weeks’ vacation, holidays and some sick days, just like everyone else. This was probably the hardest transition for me so far. I have to think to call “work”, “work” and not “school”. It takes a minute, when I panic that I haven’t set up anything for February vacation – to realize that there is no February vacation any more. Becoming an Adult may actually be harder on me that it is on him. It’s just such a huge change.

Yes, I know we are moving into adulthood and working toward independence; as much independence as his capabilities will allow.  Yes, I know this was the goal all along, but on the other hand, he’s still so much a child. He’s still watching “Barney” (22 years of Barney! That’s a Support Group I need to form, anybody?), he’s still reading and watching Disney and is not embarrassed to hug and kiss his Mom.  On some level, for me, as much as I always work and hope for more progress, I love it,  it’s nice.

This should be a happy time, and of course it is. He is an adult. He is in a program that he loves, but when summer comes around and it’s time for Camp to start, it’s a little bit sad that he doesn’t get to spend a fun filled, happy-go-lucky summer at camp as he used to. He only gets his two weeks.

Because…..he’s an adult now………

 

For Sami, Love Daddy

Re-Blogged for World Down Syndrome Week (3/17-3/22) and World Down Syndrome Day – March 21, 2014

Taking it a Step at a Time

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…

View original post 172 more words

“We Go Together……..

…like Ramma lamma lamma Ka dinga da dinga dong
Remembered forever like Shoo-wop sha whada whadda Yippidy boom da boom
Chang chang changity chang shoo bop That’s the way it should be
Waooo Yeah!”

GreaseSR

These Kids Rock! They really do!

That was originally all I intended to say. I wasn’t really considering writing about this, but……. as I was thinking about just how proud I am of each and every one of them and just how much DC and his friends just rise to the occasion and always have a great time together,  I just had to mention the fact that not only does DC have the best friends anyone could hope for…. I do as well.

As I wrote in an earlier post:

***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.***

DC and I are very fortunate to have these people in our life. I am not just talking about the sing-a-long we just attended, but in general, these people are just the best, THE BEST!

DC and his friend BB love Grease. BB is a long-time fan, DC became a fan because of him. When I heard the local theater had scheduled a Grease Sing-A-Long, I knew we just had to attend. Everyone agreed to attend and then I proceeded to harass them for months about costumes. I will admit that I can be a little bit high pressure when it comes to costumes (just a little bit), but I am sure they expected it and if they didn’t, they put up with me anyway. I am sure the last thing the adults wanted to do was to wear a costume again (Halloween is over, can’t we get a break?) but they agreed.

But…. did they expect to be wearing toilet paper rolls? I doubt it. I think they actually thought I was joking when I first brought it up. They quickly realized that I never joke about costumes so the “roll collection” process began. BB and his Mom, Donna were not able to attend the Sound of Music event with us, so as BB was looking forward to wearing his “Grease Garb”, I don’t think Donna realized that she would also be in costume as well until about a week before the event.

We collected our toilet paper and paper towel rolls and headed to Tonya’s house one Sunday afternoon. Tonya being the craft genius and glue gun wizard, was able to figure out just how to do this.

Talk about “Above and Beyond”; she sat there for hours gluing toilet paper rolls to foam strips! All that we had to do was supply our heads.

Glue Gun Wizard

Glue Gun Wizard

They looked fantastic! They were unexpectedly comfortable too!

We headed out to the theater on Thursday night in single-digit weather – not wanting coats to muck up the costumes – it was COLD! We had 10 seats in the first row of the upper orchestra section. Coincidentally a friend of mine had the rest of the seats in that row! Together, we made the best row of costumes there (my opinion only, but I firmly believe this to be true 🙂 ).

We sang, we danced, we had many, many photos taken of us as a group and of us with strangers. We were interviewed and photographed by the local news paper. Those under the delusion they would not be noticed, were wrong.
The “kids” had so much fun singing, dancing and using the props provided by the theater. They just ate up all of the attention they were getting.
The adults had a great time, singing and dancing as well..

except for this guy……..

Except this guy - Grease Sing A Long - Beauty School Drop Out

Except this guy – Grease Sing A Long – Beauty School Drop Out

Those still under the delusion of anonymity, had that shattered when they were plastered all over the news on Saturday.

 

 

The Theater's Facebook Page

The Theater’s Facebook Page

The Theater's Facebook Page

The Theater’s Facebook Page

 

 

As the show was on a Thursday night and not on a weekend, we weren’t able to go out to eat in full dress afterwards – this had to be some consolation to the adults anyway……

But all joking aside, we did have a wonderful time. I can’t say enough about all of them.

Walking around in public wearing toilet paper rolls….

the truest measure of friendship….

Thanks to all of you!

*Thanks to my friend *Al at work, who always comes up with a fantastic photo of our outings