Knock, Knock, Knock on Wood

Knock On Wood

Knock On Wood

Just recently I was reading a blog that I follow – Raising 5 Kids with Disabilities and Remaining Sane Blog. The title; What’s in my Purse. The post was about the many trips the family has made to the emergency room over the years and what the author learned to carry with her at all times. If you have a minute, check it out.

It made me realize how lucky I am to have made only ONE trip to the ER with DC – that is correct, ONLY ONE! (Knocking wood, Knocking Wood, Knocking Wood). The one trip came at age 21 and for the most ridiculous reason.  As you may or may not know, DC is 23 with Autism. Safety is not something he has any awareness of. He IS a little better now that he is older, but he is better because he has been taught not to do this or not to do that, not because he really understands what can happen to him. He doesn’t really understand many things unless/until they actually happen. So not wanting him to get hit by a car in order for him to understand what could happen if he were to be hit by a car….. I have to hope that making rules, and pointing out everything around him, will have some impact on him.

I mean, I have really been lucky (still knocking wood), so much so that we’ve never had to use a Band-Aid. He loves Band-Aids and wants to wear them so much that he just wears them for no reason, or invents a reason the wear them. The one and only time he cut himself when he fell off his bike – yes, he somehow managed to tip over an adult three-wheeled bike – he was so excited to have a big raspberry on his chest, he wasn’t concerned about the fall, he just wanted a Band-Aid. He was so crushed that the raspberry was much too big for a Band-Aid, that I had to make up a reason to apply one to his leg, just to make him happy.
Band-Aids, especially “character-themed Band-Aids” are on his “odd gifts list” along with the rolls of scotch tape, mentioned in an earlier blog.

No Injury - Just wanted to wear a Band-Aid

No Injury – Just wanted to wear a Band-Aid

Donald Duck - part of the

Donald Duck – part of the “Character Collection” (no injury, just a fashion statement)

Rounding out the Collection, we have Mickey Mouse (again, no injury)

Rounding out the Collection, we have Mickey Mouse (again, no injury)

A few years ago, we took a weekend trip to Hyannis, MA in Cape Cod. He arrived Friday evening. The plan; have dinner and hang out at the hotel on Friday night. Saturday we would take the ferry, and spend the day in Nantucket. Sunday, we planned to stop in and visit one of my oldest friends (from grammar school, believe it or not) before we headed home.

We arrived on Friday evening. DC was happy to be in the hotel. As far as he was concerned, we could just stay there. He loves hotels. Saturday, as planned, we took the ferry to Nantucket. He loved the ferry. We searched out a few book stores as we must (see “Off to the Book Store We Go”), looked around, had lunch and took the last ferry back to the hotel. It was a nice day.  We had a good time.

Sunday morning was going to be spent just hanging out in the hotel room until it was time to check out. DC was watching a movie on his kindle, Doug was on the deck and I was packing up the bathroom items. I was only in the bathroom for a few minutes. When I came out, DC was sitting at the desk; right where I left him. He yelled “Mom! Tears.” DC, as a rule almost never has tears, his eyes never water -even when he cries, he rarely has tears. When he is really upset and really crying and wants to make certain I know how upset he is, he will use water or spit to create tears, just for effect.  Even as a baby, he did not have tears when he cried. But here I could see he had tears running down his face…… real tears.

“Tears!”

I thought possibly his allergies were hitting him harder than usual – Doug had the deck door open and the deck was right on the golf course. “DC, what’s wrong, do you have something in your eye?”

“Mom! Tears! Ear!” On one hand he was excited about the real tears on his face but his excitement was mixed with a bit of panic.

I had no idea what he was trying to tell me. Then he showed me the ear bud from his Kindle. There were rubber covers on the ear buds and one was missing. Panicking, I yelled out to Doug something that probably made no sense,  and ran DC into the bathroom. I couldn’t see anything in his ear. DC started to panic now that he realized that I couldn’t get it out right away.

This entire exchange above…. Tears, Ear and showing me the ear bud would normally be cause for celebration – DC being able to tell me that something  is wrong and what is wrong is a very BIG  deal, but all celebrating had to wait because he was getting more panicky by the second.

I still could not see anything in his ear.  I dumped everything that I had just packed out and could not find the tweezers. I sent Doug down to the front desk to ask for a flashlight and tweezers, while I tried to keep DC’s fingers out of his ears and tried keep him from flipping out any more than he already was. Doug came back; the desk had no tweezers (?) and no flashlight (?).

We took DC down to the desk, he would be okay for a minute or two and then he would freak out. The man behind the counter did not seem to understand what we were talking about. I am sure he thought we were all crazy. I was somewhere between panic and laughing hysterically at the ridiculousness of the whole situation while DC was making very loud noises, yelling out random words, flapping, stimming and doing everything else that comes with his anxiety.  I’m not sure what the man at the desk thought was going on and why we needed a flashlight and tweezers, but seeing DC in the middle of the lobby absolutely loosing it; he looked frightened and asked his assistant to go check again. She came back with no flashlight and no tweezers. Seriously,  what hotel doesn’t have a flashlight?

I was so trying to avoid the Emergency Room. It hadn’t been all that long since DC finally became comfortable with doctors. I didn’t want a long and scary emergency room visit to erase the years of progress he had made. The other issue was it was his EAR! For years, when we went to the doctor, he would get unbelievably upset and totally meltdown if anyone went near his ears. I remember one of the doctor’s assistants, who was either new to the office or had not had to deal with DC getting his ears checked saying, “Oh! I was wondering why we had to bring extra trash cans into the examining room! I get it now!” – Yes, every single time, he would get so worked up, screaming and fighting that he would vomit. This went on for years. The very last thing I wanted to do was to bring him to an emergency room to have someone poke around in his ear.

The desk clerk gave us directions to the nearest pharmacy and we took directions to the ER too, just in case.

I rode in the back seat with DC to keep him from pushing the ear bud in farther. Doug ran in to the pharmacy to buy the tweezers and flashlight. Now we are all in the backseat of the car, armed with a flashlight and tweezers, trying to see inside his ear. I can’t imagine what the other people in the parking lot must have been thinking. DC had enough at this point and was not cooperating at all anymore…and….. I still could not see anything.

I knew we had to suck it up and head for the Emergency Room. I still wasn’t positive that there was anything in his ear at all. Did he just think that it went into his ear and it was really just on the floor somewhere at the hotel? I didn’t know, but he was so out of control,  I had to assume it was in there somewhere.

We arrived at the emergency room. It was a weekend in a tourist area;  I was expecting hundreds of people waiting. I didn’t know how I was going to keep him calm and keep his hands away from his ear while we waited. We walked through the door and there was only ONE person in the entire waiting room! I wasn’t sure if that was a good or bad sign but I was going with good. I took him to the desk and explained the situation to the clerk. One look at him flailing around and she asked if he needed to be sedated. I told her (with fingers crossed) that he would not.

They took us right in! (I love this place). They put DC in a bed, the doctor came and checked his ear. DC LET him check his ear! He really must have wanted this thing OUT! He told me he could see it but it was in there deep and he would need to use another tool to get at it. All I could think was “No way he is going to let you do that!” but I SAID “Okay, he’ll be fine with it”.

I explained the situation to DC and told him what was going to happen, not really knowing if he would understand what I was telling him, but he said “Yes! Ear!”, so I think he did understand.

The doctor went in with some sort of funnel-looking thing. I was truly amazed that DC was cooperating and keeping still. He was finally able to get the thing out. Of course DC had to examine it completely before they got rid of it, just to be sure, I suppose, that it was out.

DC calmed down immediately and we made a big deal about how brave he’d been! All of my worrying about the doctor, his ears, traumatizing him with an ER visit was for nothing. He was totally unscathed by the whole thing and was very proud to tell people that he had been in the ‘hos – i – bull”.

We were done and over it in time to get back to the room, finish packing – where he wanted to put those things right back into his ears!

“NO, NO, NO!” a thousand times, no.

We were also able to visit my friend as planned.

Visiting Friends

Visiting Friends

I went on a hunt for new ear buds without any rubber or removable parts as soon as we got home.

Coincidentally, as I was writing this story, DC received a belated birthday gift from one of my friends. This gift included two boxes of character Band-Aids that DC is already wearing proudly.


(and yes…….. I am still knocking wood……………)

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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…

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Pants on Fire

Pants on Fire

Pants on Fire

We have heard a lot about RESPECT, AWARENESS and UNDERSTANDING over the past few weeks (End the r-word) and we will hear quite a bit more next month during Autism Awareness Month.

There are times when, we, as parents of children or adults with special needs, do have to go to extremes or try many different tactics to get information from our children. Communication is not easy with my son. He can/will tell me what he wants but anything else is difficult. An answer to a simple question, if I can get an answer at all, can take a good long time and a lot of work.

But….We do not “trick” and we do not lie.


Having said that, when I drop DC off at an activity or event, I do have to tell him verbally and in sign that I am going for ‘coffee’. For some reason, and I really have not been able to figure out why, he knows this means and I am coming back to pick him up. I consider this a “little white lie” , not a big deal. 90% of the time, coffee will be involved in whatever I am doing or wherever I am going.
If I tell him I am going home, or to the store, my departure is prolonged by :
“Mom is coming back?”
Yes, DC.
“Mom is never coming back”
Of course I am coming back, DC.
As I start to walk out of the door, he moves on to – “Mom, come here please”
…………………….and the whole process begins again.
For some reason he accepts ‘going to get coffee’ and it is all good.
For the record, in case anyone thinks he’s been traumatized at some point by being left somewhere……. I have never forgotten to pick him up, I have never even been late to pick him up from anything at anytime, so I really don’t know where this comes from, but ‘coffee’ seems to be okay with him. Why I have to use the ‘coffee’ sign is just another mystery.
This sort of thing, which actually makes him feel better, and is not hurting him or anyone else, is fine with me. I don’t really consider it a lie and it is certainly not a trick.

A few weeks ago, a friend and I were having lunch in a restaurant that is staffed by special needs adults. They do, of course have supervisors, but the wait staff and kitchen staff are all adults with various special needs.
This particular day, my friend and I were sitting at the farthest corner of the restaurant.
I am a “people watcher” by nature, but if the following exchange could be heard in detail by us, sitting so far away, it was without a doubt, heard by the customers sitting closer to the front.

I noticed a staff member approach the restaurant supervisor, who had been eating at her desk since we arrived, with some sort of candy/food wrapper. I really didn’t hear what the first staff member said to the supervisor, but the supervisor replied, “I don’t know who was just in the bathroom”. So again, being a parent of a special needs child and having quite a few friends with special needs children, I surmised from this (loud) statement  that someone was sneaking food in the bathroom.
I get this, I get how this could be a concern. Did it have to be announced? No, but I do get it.
I continued to watch because, still eating with one hand, she picked up the wrapper in a scissor hold (between her index and middle finger), lifted it up into the air over her head and turned it side to side as if she was looking for finger prints or something. The production she was making was kind of funny and way over the top. It was without a doubt entertaining, anyway. I assumed that was the end of it, but what followed was not funny or entertaining at all.

She put her food down, got up from her desk and went over to the counter that looks into the kitchen area. She raised this wrapper over her head (still in the scissor hold) and asked, “Who left this wrapper out here” (Not “Who left this wrapper in the bathroom”).
I could hear a few employees answer, “Not Me”, “It wasn’t me”.
She then said, “I just wanted to know where I can get these”. Her assistant joined in by saying “They look so good, they have raisins and ___,  (I couldn’t hear the other ingredient she mentioned) we just want to know where we can get them”.

At this point I could hear someone reply. I could not hear what they said, but someone did reply.
The supervisor then asked “Did you buy them yourself or did your mother buy them for you?”
I heard the employee reply that her mother bought them.

As they walked away from the counter, proud of themselves for tricking the employee into confessing by taking full advantage of her disability, the Assistant said, “I knew it was her” – the Supervisor replied, “Of course it was, she didn’t say a word when I asked who left it”.

Again – far side of the restaurant – we heard all of it.

RESPECT, UNDERSTANDING, AWARENESS, TRUST and let us add CONFIDENTIALITY???? What do we do when the people entrusted to care for and work with our children do not seem to know the meaning of any of those words?

Apparently, we still have so much more work to do.

(Just as an FYI, Normally I would have said something to her, her supervisor or both right away, but I was 95% sure that the person they were tricking into confessing was the son of a friend of mine. I wanted to tell my friend the story before giving the manager a heads-up and a chance to come up with a different version.)

Baltimore, Over the Rainbow and Back – Part 1

Good Morning Baltimore

 I really couldn’t write about this trip without including this part of it. This part, Part 1 is a little bit “cranky” – my apologies, in advance.

In early February we set off for DC’s third cruise, his second on Royal Caribbean. We didn’t have to fly for a change because the ship was leaving from Baltimore.
We drove down on Thursday night for Fridays boarding.
There are not many things DC loves more than staying in a hotel, so he was very happy that we were staying overnight. He was even more excited to be in Baltimore, because, of course….. “Hairspray”. I am sure he was expecting Tracy Turnblad (Nikki Blonsky) to be dancing in the streets (I prefer the Ricky Lake version, but that’s just me)

Our ship was to make stops in Port Canaveral, Nassau – Bahamas, Coco Kay – (private island) also in the Bahamas and Key West, in that order. We booked our tours ahead of time and we made a conscious effort not to mention  “Bahamas” because DC just hates it there.  The tour we choose in Port Canaveral, was a bus trip to Disney World. We kept this a secret as well, otherwise we would not hear about anything else for weeks before the trip.

Friday morning arrived and we took the shuttle from the hotel to the ship. We made our way through security, filled out our forms and went to check in.

DC is 22, but obviously does not drive. He has a State ID. He does not yet have a passport, but a passport is not necessary to go to the Bahamas. All that is required is a state ID/drivers license and birth certificate. When DC was born, I did not opt for the full size certificate. I was told at the time, that the wallet size was just as official and was much more convenient. I have never had a problem with it.

Just to back up a moment…… I am someone who will “put something in a safe place” and never find it again, so I have always carried DC’s birth certificate, along with my own, in my wallet. It has been in my wallet for 22 years, obviously not the same wallet, but in A wallet for 22 years. The top of the certificate is a little bit frayed, but all of the information and the seal is visible.

After giving the woman at the check-in counter (let’s call her “woman #1) all of our paperwork and identifications (the very same identification used the year before and the year before that) she informed me that she did not know if Key West would accept DC birth certificate! She would have to go and have it checked out.

What??? I explained that this is the same birth certificate we used the previous year.

W#1: “Yes, but Key West is really cracking down and it’s a little tattered on the top”

Me: “Well it’s 22 years old! What will we have to do if Key West decides not to accept it?” – (The last few times it has been out of my wallet, was when we checked in last year and at check in the year before that, so the condition has not changed since they approved it on the last trip)

(At this point Doug is muttering under his breath in kind of that sing-song way   “Don’t argue with them!”)

Number 1, that is what I do…

and

Number 2, I was not arguing, I was asking what I thought were valid questions.

W#1: “You will probably have to have someone  fax the long copy over”

Me: “There is no one at home that has any copies of his information”

W#1 “Oh no, well I don’t know”

– so, in my mind, what she is telling me is:

If I had a family member back home who had access to a long version of his birth certificate or another copy of the wallet size they could fax it over and they WOULD accept a fax copy with out the raised seal (???) – I’m sorry, I was now very confused by all this.

We were asked to sit down and wait in a roped off  area. The few people who were waiting there, were waiting to be seen by a doctor before boarding the ship –  (we’ll call this the “problem section”).
DC remembering everything, knew that after the check in desk, we should be boarding the ship.

DC: “Time to go to the ship”

Me: “Yes, we just have to wait a few minutes”

DC: “Going to the ship”

Me: “Yes, we just have to wait a few minutes, Bud”

– Now I’m having flashbacks of San Francisco ….

Eventually another woman who seemed to be in charge of the “problem section” came over to tell us that they were still waiting to hear from Key West (we shall call her “Woman in Charge” or WIC for short). She told us that there was an additional problem with DC’s birth certificate; there was no file number on top, just x’s. I had never noticed that and apparently no one else in 22 years – Royal Caribbean, included, noticed either. I took out my own birth certificate, issued in the same city and state and sure enough, mine had a number, his did not.
Now I was really beginning to panic – because this is also what I do. We had been sitting in this area for almost an hour. We were the only people left in the “problem section”. My only thoughts now were:

What if they decide not to accept his birth certificate?

and:

How would I ever tell him we could not get on this ship?

We had been sitting there for more than an hour, now. Suddenly realizing that it was Friday and city and state offices are open, I found the number to the department/office where our birth certificates were issued. Of course, this is a government office so I could not get passed the main menu and any option I choose, led me back to the original menu (there was no “dial zero for an operator” option). I started dialing random 3 and 4 digit extensions and finally a woman answered. I explained our situation. She explained that not everyone is issued a file number. This woman was nice enough to hold while I went to the desk and explained to the “WIC” that I had a city employee on the phone and she told me that not everyone is issued a file number.

The response: “Well YOU have one!”

(“not everyone” to most people, means that some are and some are not)

Me: “Yes I do, but mine was issued 31 years earlier than his!”

I asked if she would talk to the woman from the city, she wouldn’t. I asked if there was something that this woman could fax over to help the process (I didn’t want to lose the person on the phone before finding out what I needed in the event Key West decided not to accept his certificate).

WIC: “It’s in the hands of Key West now, I can not do anything about it”

– so W#1 told us that we would have to have something faxed over if they did not accept the certificate we had with us, but WIC wouldn’t tell me what to have faxed or the fax number to send it to now that I had someone on the line –

While I was standing there with the city employee still on the line, the WIC looked at her screen and announced that Key West has approved his certificate.
~PHEW ~ (as DC would say)

I thanked the woman holding on the phone and told her that they finally approved it and we were all set.

Still sitting in the “problem section”, she directed another woman (we’ll call her woman #3) to begin checking us in. She took our names and paperwork all over again and told us to have a seat because she needed information form the original check in person (woman #1). We sat down again, woman #3 left. She came back to her seat as another passenger walked into this “problem section”, walked up to woman #3, waved to all of the other people working the regular check in line and got herself checked in.

My assumption at the time was that woman #3 was still waiting for woman #1 to supply her with whatever information she had already entered into the system, so she decided to check in this other passenger (who obviously either works for Royal Caribbean or has some sort of connection to the line). When she finished checking in this passenger, she just sat at the counter. The “problem section” was still empty with the exception of us, so she literally sat there, hands folded with a smile staring off into distance as if she was waiting for her next passenger.
Now we’ve been sitting in the “problem section” for another half hour (One hour and 45 minutes listening to “Going on the ship”“Time to get on the ship”). I turned to Doug and said “Do you think we are still supposed to be sitting here? I’m going to go ask”

– “Just wait, they will call us when they are ready. Don’t keep bothering them.”

After another 15 minutes, Woman #3 was still just sitting there, hands folded, grinning at no one. I went up to the desk and asked the WIC who was at the computer behind “Grinning W#3” – “Should we still be sitting here or should we get back in line?”

Apparently, woman #3 should have been checking us in, but decided to wait on her friend in the middle of our check in and then just forgot about us! She wasn’t waiting for information as I assumed, she just thought we were already checked in! After WIC yelled “Why didn’t you check them in? I told you to check them in!” – she finally checked us in.

– More than two hours of – “Going on the ship”“Time to get on the ship” later, we were finally checked in and ready to board.

On the ship, thankfully lunch was still being served (what a catastrophe THAT would have been, if DC missed lunch too!)

A cheeseburger and fries took his mind off of the whole boarding debacle. Everything was right with the world in his eyes.

Cheeseburger, fries AND "Chicken with Bones"

Cheeseburger, fries AND “Chicken with Bones”

I opted for something a little bit stronger…..

Fewer Calories :)

Less Calories 🙂

 

DC WILL be getting a passport very soon….

 

And who knew it is more difficult to get into Key West than the Bahamas? Who knew?

(to be continued  in Part 2- where our trip does get better..)

“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