Dc’s Letter to His Best Buddy, Steve

DC has been involved in the Best Buddy program, since he was in middle school. Steve has been DC’s Buddy for the past three years. As I’ve told him many times, he is the best, most involved Buddy DC has ever had. Steve will be graduating from college this May. He will be either heading to Boston or back home. In either case, he will not be living close by any more. We will be sorry to loose him. DC will be assigned a new Buddy next year and that buddy has very big shoes to fill! I am hoping that Steve and DC will keep in touch after he leaves even though he won’t be his official Best Buddy anymore. DC hopes so too.

Read More:

http://vcdale.wordpress.com/2014/04/13/dcs-letter-to-his-best-buddy-steve/

Conversations

Conversations….

At Work:
Jamie: Vick, I just wanted you to explain the payment system we use; is it like PayPal?
                  *This is a system that has been in place for the past 3 years and has been explained many times*
Me: I guess you can describe it that way.
Jamie: I just want to be clear about how it works. They can use their credit card, correct?
Me: They can use their credit card

Read More

http://vcdale.wordpress.com/2014/04/04/conversations/

Knock, Knock, 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 
(Read More) http://vcdale.wordpress.com/2014/03/27/knock-knock-knock-on-wood/

Knock, Knock, 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

(Read More) http://vcdale.wordpress.com/2014/03/27/knock-knock-knock-on-wood/

Pants on Fire

image

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 not 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 employing 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.

http://vcdale.wordpress.com/2014/03/13/pants-on-fire/

Baltimore, Over the Rainbow and Back – Part 1

 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)

Link to Video:

http://s1093.photobucket.com/user/vcdale/media/tasanotherstep/cruise319_zps4a41077d.mp4.html

Our ship was to stop 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 past 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 on the line 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.

I opted for something a little bit stronger…..

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..)

http://vcdale.wordpress.com/2014/03/10/baltimore-over-the-rainbow-and-back-part-1/

Night of Friendship - Best Buddies #rword #endtheword #bestbuddies