Mother’s Day and The Macaroni Necklace

Macaroni

My only Mother’s Day gift wish when DC was little was a macaroni necklace. You know, the macaroni necklace that every child makes for their mother eventually, for some occasion or holiday or for no reason at all. I think I remember making a few of my own when I was a kid. I really wanted a macaroni necklace! Unfortunately, there was no one that was going to help him do this, with the exception of me, of course, but that would not be the same. In other families if there was not another parent or sibling to make the suggestion and help with the project, eventually the child got old enough to come up with the idea as we all did when we were young, on his own. I knew that this was also something that was not going to happen in the foreseeable future, at least.

I know it was an odd thing to be fixated on, with so many other things to worry about, but it really made me sad that my son was never going to make and present me with a macaroni necklace. I talked about it all of the time. Whenever my birthday or a holiday came around, my friends would have to listen to me whine about the fact that I would never have that cherished macaroni necklace. In my mind it was the “right of passage” of parenthood.

Now, yes of course I realize that this necklace that I wanted so badly was just a representation of the many ways our life was and would continue to be so very different from the way I had imagined when he was born.
I know that very few people end up with the life they imagine, but I knew ours would be very different.

DC was in school, but at this point in time, they really hadn’t done many of the “school gift” projects that most children come home with around the holidays ~ probably because the projects would not make it home in one piece ~ therefore my hopes for a macaroni necklace were dwindling.

One day, the Friday before Mother’s Day, when DC was 6 or 7, I opened his back pack and found a package labeled “Mom”. I called DC over and asked if this was for me. He signed “Yes”.

I opened it and there it was, a macaroni necklace! Made with HEART SHAPED macaroni, no less. Also included was a photo of DC and his aide stringing the pasta.

This was absolutely THE best Mother’s Day gift! Of course, he didn’t really understand that he had to give it to me, I had to find it in his back pack, and of course the writing wasn’t his, but there was photographic evidence that he had made it himself!

I wore it all day on Mother’s Day and to work on the Monday after Mother’s Day. He seemed to be very pleased that I was wearing it!

My office mates were happy too, believe me….. I specifically remember one saying “Thank God you finally got that macaroni necklace, I was about to make one myself!”

Now-a days DC is no longer oblivious to holidays. He knows when they are coming, he knows what they are about for the most part. His mind still doesn’t go to “Hey let’s make Mom a card or a gift for Mother’s Day”, but he now has some help for that. But he does remember to give them to me, usually early because he is too excited and can not wait. He does make the connection with the holiday and the gift and he is very, very proud of himself when he gives me a gift. Such a difference from the boy who didn’t know it was a holiday or to know that he should give me the gift he made at school sitting in his back-pack to the “man” who just can’t wait to make me happy with his gift!

There is nothing that makes me happier than seeing him proud of what he’s done and accomplished.

So, Happy Mother’s Day!

May your jewelry box runneth over with pasta and your day be filled with joy!

Just Who Is This DC That You Speak Of ? – One Year Anniversary

Posted by TakingItAStepAtATime

Happy Anniversary

It has now been full year since I began writing this blog. Over the course of this year, a few friends have asked, among other things, why I call my son “DC”.
DC is not my son’s name. This is confusing to my friends because I do post this blog on my personal face book page. Obviously my friends on my personal page know my son’s name, they know our last name, they even know where we live. BUT because this blog is public, and is shared on a number of accounts and networks via WordPress (not via my personal page), I do not use his real name, our last name or our location.

My personal face book page is set for “friends only”. Nothing I write about is anything that my friends don’t know or haven’t heard about DC. I am very proud of my child, as I am sure my friends are very aware of. 😃

As for my other accounts; they are set all up using my first name only, no location. I am sure if one tried hard enough, they may possibly be able to figure out what state we live in, but really not much else.

My Instagram account is not only first name and no location, but it is also private. 95% of my followers and the people I follow there are other autism parents and CharityMiles friends. Quite honestly, they are all wonderful people and I really would not have much of a problem divulging our location or last name to most of them. A few do know Dc’s name and that is fine with me. There I see compassion, camaraderie and the support of each other, that I really don’t see anywhere else. We all seem to have different opinions, but we all seem to embrace our differences instead of attacking each other.

Another question that I am asked every so often is why I write a blog.

I never really intended to write a blog. My blogging began one day when I was writing an extremely long response to a blog post that I had just finished reading. After I hit “post” I decided that writing a response to this post on someone else’s blog was not going to make me feel better about the topic being discussed. I opened an account with a local on-line news publication and pasted the response I had just written onto a blog page and published. After a month or so and only a couple of posts; finding the local publication blog not-so-very user-friendly, and because it was local, I felt I could not share it anywhere else and still remain somewhat anonymous, I moved to Word Press. I was so worried that I would never have enough to say to sustain a blog, but I went for it anyway. It turns out that I do have a lot to say. I don’t know how many people care to hear what I have to say, but I say it anyway.

Originally, I did not even post the blog on my personal Face Book page, only on my “community page”. Before posting it there, I went through 3 years of posts on the community page and it’s accompanying website , deleting anything that could be considered too “local” of a story. I wanted to be sure that our location was not too apparent AND that the names and locations of the people featured in these now deleted local stories were also not on display.

(I have just discovered that there is a way to post local news and events on that community page to a specific audience, so I can begin posting local events and news again.)

I did begin posting the blog to my own page at the urging of a friend. No, I am not naïve enough to think that private postings or ‘friend only’ postings are really 100% private, but I have taken all of the precautions I feel that I can and I am always looking for others. I will continue to call my son, DC and write about “a local theater”, a “local college”, a “local baseball league” or a “local ice cream shop”.

I read many blogs as well. Many of the blogs that I do come across are written by parents of younger children. Most are wonderful and very informative. There are many that I absolutely love, but I always feel that the parents of adult children do not get to have an equal voice in this community. We are cast aside, or worse, berated. I am not in any way saying my blog is the voice of parents with adult children, I don’t think there are enough people that actually read it, in the first place, to even consider that, but I am ONE voice and ONE opinion in a sea of blogs and opinions that do not seem to make room for the parents that have been at it for many years now.

I was very tired of being preached at by those who have not reached this point in their child’s life and constantly being told how to feel. I understand where they are coming from and in turn I believe they can or should try to understand where I am coming from. Whatever else you might have to say about me, I have done a good job of raising DC. Of course there was help along the way but as a single mother going on 21 years now, most of it fell to me alone. I truly resent the fact that we, as parents are being made to feel as if after all these years, we’ve got it all wrong.

I’m hoping a little insight into what comes after “school age” may go a long way in getting people to stop and think before making blanket decisions, accusations and statements that may not affect their child the same way it will affect mine (more about this at another time). There has got to be some give and take. Everything is not good for everybody.

Having said that, I have learned quite a bit from other parents by virtue of this blog. I don’t always agree with every opinion and my readers, I’m sure, do not always agree with me, but I truly believe writing this blog and getting some of the feedback has helped me see some issues a bit differently or at least why some parents see things the way they do. I can only hope I can and will be afforded the same courtesy; and so far I have.

Life tends to be very different when your child “ages out”of the school system and at other times, it is exactly the same. When you are waist deep in school, therapies, programs and IEPs, what happens after 21 is not high on your priority list. Of course it is a priority and of course it is in the back of your mind but, the here and now takes precedence. There are so many new and different issues to consider, and it all comes to hit you in the face much faster than you expect. Your views and opinions can change dramatically from what you hoped for when they were young and what you hope for now. Your life changes drastically, while not changing at all.

In an earlier blog I wrote:

“If I were to live forever, I would not change a thing about my son. He’s happy almost all of the time. He loves his life. He is in his own little happy world, but he won’t always be able to live in his own world, he will someday have to live in the real world. Then what?”

He will, someday have to live in the real world without me.

So I will keep writing with the hope that a few people might read and think a little bit about the future. I would never say that spreading awareness is not a good idea, it IS definitely necessary, but…..

all of the awareness in the world is not going to keep DC safe and happy when I am no longer here to protect him…..

“Please allow me to introduce…..”

Posted by TakingItAStepAtATime

(This post probably qualifies as more of a facebook status, but it made me laugh, so a blog it is!)

Pleased to meet you

DC loves to make introductions. I don’t believe he really understands the point of introducing people. He notices people making introductions in the movies he watches and in the books that he reads. It doesn’t matter if the people he is introducing already know each other. It doesn’t matter if he knows they already know each other, when he gets to urge to make introductions, he does. He is usually very formal about it as well –

“I would like to introduce my mother, Vickie Lastname”

“It is my pleasure to introduce to you, my mother, Vickie Lastname“

or (my favorite)

“Please allow me to introduce my ‘lov-er-ly’ mother, Vickie Lastname“

Recently we attended a pasta dinner fundraiser to benefit the summer camp DC has attended since he was 5 years old. We purchased enough tickets for DC, Doug, my mother and myself and we sold a few more to friends and family members.

Seated with DC and I were,

– My mother (DC’s grandmother)

– Doug (who was also pulling DJ duty)

– DC’s grandparents on his Dad’s side

– DC’s Dad – Tracy

– DC’s stepmother (I generally do not use the stepmother title to describe her because DC is so very much into Disney that there is no explaining to him that all stepmothers are not evil) Karr-ee-anna – in DC-speak

-DC’s Aunt K

-Her husband R

– My friend Tonya

– and DC’s friend, Salli

Due to the crowd, Doug’s father and sister had moved over to the next table.

DC was very excited that everyone was there at the same time. He sat at the table as if he were “holding court”. He then decided that introductions were in order.

Turning his attention to his father, Tracy:

“Tracy, this is my mother Vickie Lastname”

and

“Vickie, I would like to introduce you to my father, Tracy (same) Lastname”

~ Insert Dramatic Pause ~

“Um…….”

“we’ve met”……………………..

Dc and Friends Dancing the night away! Photo Credit: “Tonya”

Don’t Forget to Call Mom

Posted by TakingItAStepAtATime

Don’t forget to call Mom

There are many times, even at this point that I really do not know if DC really understands certain things or if he is just going through the motions; the motions that were taught to him. There are other times that I am surprised to find that he really does understand, even if he is using one of his scripts to communicate it. It is not always easy to tell the difference. I don’t think it will ever be easy, but I do not think that using the telephone will ever be one of those things he completely understands.

I have worked long and hard over the years but DC still has a hard time using the telephone. To begin with, he just doesn’t like it, he doesn’t. When he was younger, he couldn’t even bear to have the receiver on or near his ear. He has always had a very low tolerance for anything having to do with his ears, so using the telephone or just listening to someone that wanted to say hello to him was just unbearable for him.

Secondly, as I stated above, I really do not think he understands it completely. If he dials incorrectly, he doesn’t understand that he should hang up and dial again, he just keeps dialing. I finally got him to the point where he could tolerate the phone on his ear. He has memorized our phone number, but as he doesn’t always understand the question “What is your phone number”, I don’t know if he would be able to give it to anyone if he needed to. He does know how to call me.

He is still not all that thrilled about using the telephone, though. If he does get a call, it has to be brief. When he’s had enough, he will say nothing and just hand me the phone. I have to tell the party on the other end (who is usually still talking to him, not knowing he’s passed off the call to me) that DC is done talking. Not very long ago when he was talking to his father, he handed me the phone when he decided he was finished, as usual. I handed it back to him and said “DC, you have to say good-bye to people on the phone when you are finished.”

He took the receiver back and said “Goodbye to the people”

He does have an iPhone now. He knows how to use it. He is very good at using iTunes and YouTube, but still the phone part of it is difficult. He is supposed to call me on my cell phone when his transportation arrives to pick him up from work; he does, but it is a script.

“Hello Mom”

“Hi, DC. What are you doing?”

“I am going home Nowwww”

He says this the same way in the same tone, with the same emphasis on the “Ow” in “now” – every day.

“Did you have a good day?”

“Great”

“Okay, call me when you get home”

“Okay”

When he gets home he is supposed to call me from the house phone because I want him to know how to DIAL my phone and memorize my cell number as well.

He does call just about everyday. There were and still are a few days that he forgets and I have to call him. Hearing the phone ring, must remind him he has forgotten to call me so instead of just answering the phone, he picks it up and dials my number while I am on the phone, and then goes though his “at home” script. If for some reason it is not me calling him, the person on the other end gets the script and then he hangs up.

“Hi, Mom I am home”
“Hi DC, is Mrs. H there?” (she has already texted me to let me know she is there)
“Yes”
“What are you going to do today?”
“Go to ____” (enter, Library, Track or whatever activity depending on what day of the week it is)
“That sounds like fun. Okay, I will see you in a little while”
“Okay, Goodbye Mom.”

He does not understand voicemail or answering machines, even though I let him listen to mine and try to explain what it is, I just can’t seem to come up with an explanation that he can understand. If he does leave a message on my phone, I don’t think he realizes he is leaving a message, he just goes through his script and hangs up, thinking I must not have a lot to say that day???

He will not use the phone spontaneously. This is something I really want him to understand. I want him to think to call me if something is wrong or if he happens to get lost or for any reason at all. I want it to occur to him if something goes wrong, that he should use his phone. I really am not sure that it would occur to him. I’ve gone over this many times, but as many times as he says he understands, I don’t think he does. He has never called anybody spontaneously, he has just about never asked to call anyone. After all this time, he still only uses the telephone when he is told to, to call me from his transportation and to call me when he gets home.

We’ll keep working on it….

A few days ago, I had to leave work early for a dental appointment and then a doctor appointment. The appointments went quickly, so I was home before his aide arrived to meet him after work. He called me from the car as usual. When he arrived home both his aide and I were there. I was talking to Mrs. H in the kitchen. DC came in, he said hello to me and Mrs. H and gave me a hug.

Mrs. H and I were still talking in the kitchen, while DC went into the living room, I thought to have his snack “alone” (he likes to be alone when he has his snack). My cell phone, which was charging right in front of the phone in the living room, started to ring and I said “I’ll bet he’s calling me”.

From the kitchen, I asked:

“DC, what are you doing?”

“Hi, Mom. I’m home” (from the living room talking into the phone, probably to my voicemail).

When he is doing what he was told to do, I try not to do anything to throw him off or make him forget to call me the next time, so I went with it.

“Is Mrs. H. there?”

“Yes”

“What are you going to do today?”

“Go to the Li-ber-ary”

“Okay, I’ll see you in a minute”

“Okay, Mom, see you later!” and he came back into the kitchen.

Yes, Rule – followed……

but there is still some work to do………………….

Book Store Blues

Posted by TakingItAStepAtATime

DC has a favorite bookstore. I mean a very favorite bookstore! It is located in Salem, MA and everytime we visit there – which is quite often, that store must always be one of our first stops. We are spending this weekend in Boston and decided to take a side trip into Salem. DC was excited to go to his favorite book store.
Let me tell you, this place, The Derby Square BookStore has books piled up everywhere. It was always frightening for me. I am always afraid that if he moved just one book the wrong way, everything would come tumbling down on us.

(A few photos from a few years back)

DC and BB

But he just loved it!

He loved it so much that his cousin drew a picture of him in the store for Christmas one year.

On our way to Salem today, I said to Doug, and I don’t know why, “Someday we are going to show up at this store and find it gone”.

Jinx…….

We arrived at the store and found a table outside with some books on it, the door blocked by the table, a few people looking at the books outside and a sign that said “Closed! Reopening in June”.

OH NO! (screaming in my head)

DC would not understand this. He couldn’t understand why he couldn’t go in. I tried to have him look at all of the books on the table hoping he would find just ONE that he was interested in – but he did not. The new owner saw how upset he was getting. We didn’t have to say anything to her or ask; she shuffled DC and I inside and let him look around. We had to be careful as everything was being boxed up, but honestly we really didn’t have to be any more careful than we always had to be in there.

There wasn’t much that was not already in boxes but he managed to find 3 books.

“Phew, put hand to face” as DC would say.

As I was paying her for his books and thanking her profusely, she told me that she had just purchased the store and that it was going to take a while for her to go through everything, get it all in some sort of reasonable order, and renovate the inside so it didn’t give the impression of the walls caving in on you.

I can’t picture this, but I can’t wait to see it.

I thanked her again. DC thanked her as well. It was such a nice thing for her to do! She has no idea how she single-handedly saved the rest of the day for us! I didn’t get to go into that kind of detail with her because she was busy with other customers. I wish I could have.

Crisis Averted!

Now all I have to do is be sure we do not make any trips to Salem until after June!

(This post was written quickly and on my phone – I DID wear my glasses, but even so, please forgive any typos, run on sentences …. Etc.)

Baltimore, Over the Rainbow and Back – Part 2

Posted by TakingItAStepAtATime

After the fun-filled experience boarding the ship (Baltimore, Over the Rainbow and Back – Pt 1) things were looking up. DC had his cheese burger, I had my wine, everything was calm.
The remainder of the day (Friday) was spent exploring the ship. DC as usual, loved the cabin, as small as a ship cabin is, in his mind it is a “hotel room” and a hotel room is way up there on his list of favorite things.
The “Travel Gods” were on my side too; there was NO Disney Channel in the room!!!! (Happy dance!!!) – so DC moved on to his “default channel” (at home he calls it “Two – Five”) TNT, which is perfect with me.
The lifeboat drill, as usual was difficult for him; not because it frightens him, I don’t think he pays enough attention for it to frighten him, it is just the standing in line in a crowd, for that length of time for reasons that he really doesn’t understand and has no interest in. Thankfully wearing a life vest is no longer a requirement, but it is still torture for him and for me as I held my breath and hoped he would make it without incident. He did make it; he got a little loud at times but he made it. He was not happy, no matter how many times I told him how proud I was of him, it took him a good long while afterwards to get himself out of his “anxiety mode”. I’m hoping the lifeboat drill is one of the items taken into consideration (if it hasn’t been considered already) by Royal Caribbean regarding their new“Autism Friendly” cruise status. I understand that attendance is important for safety reasons, but there has to be another solution – even if the solution is as simple as a designated area away from the crowd.

Saturday was our first scheduled stop in Cape Canaveral; the stop where we scheduled the surprise bus trip to Disney World. DC knew there was a surprise trip coming. He knew the ship was going to Florida, so I was sure he’d figure it out. I asked him where he thought we were going to go when we got off of the ship. He answered “Bookstore”. I told him that I was sure there would be somewhere to buy books on the surprise trip. I asked him again as we were waiting to get off of the ship “What else are you hoping to do on your surprise trip?” – He thought about it and said “Toys R Us!”. I realized that even though he knew the ship was going to Florida, that really didn’t mean anything to him, he didn’t make the connection. He thought he was going to New York City, his other favorite place! Seriously, if you gave him the choice between Disney and New York City, he just might have to think about it!
I was a little worried for a minute that he had his heart set on New York, so I decided I would tell him that no, we were not going to New York City, but I was sure he would love this trip just as much. We were hoping that we would be able to keep it a secret until we were on the bus, or better yet, until the bus drove up to Disney World, but the “Follow your Lollypop” (sign) announcements started and we were sure he would pick up on the “Follow the Disney World Lollypop” announcement eventually; we decided that we would not be able to keep it a secret any longer. Doug gave him a card. He opened it and inside were a couple of Disney World gift cards. It took a minute, but he put it all together in his head and yelled “Disney World!!”
We only had 7 hours including the bus ride, which sounds like a good long time, but at Disney World, it is not a long time at all. We had to plan every move to be sure we made it to all of his favorite places and we weren’t going to worry about the rest.

The first stop as always was the Castle Show. The last 3 or 4 times we were there, the show had been “Like A Dream” – DC knows it by heart; he’d seen it every time we were there (and a few times, more than once in a single visit) and he has also found many clips on YouTube so he has it memorized. Today the show was……… drum roll please; you guessed it…… “Like a Dream” (I don’t really know if this is the actual name of the show, but it is one of the songs that I have embedded in my brain), but…… it is still 100 times more tolerable than having to watch “Story Time with Belle” once, twice or three times per visit. Story Time is gone now, and I for one am very happy.

We headed next, to Ariel’s Under Sea Adventure and on to Ariel’s Grotto to meet Ariel. I am again, thankful that the Grotto is now located in another area of the park. It is a whole new Grotto, redone, so now much of the time spent in line is in the shade (and I suspect that there may be more than one Ariel in there; which makes the line go much quicker than it used to, but I can’t be sure)

Next stop, the Princess room…….

I reminded DC of the rule; “Do not pick up the Princesses” before we got in line. I asked him again while waiting in line about the rule, and he remembered, and one more time just before we went inside….. “Do not pick up the Princesses” he answered, so into the Princess Room we went….. THE MOST exciting part of his day! He was a charmer, as usual.

: Cinderella meets Prince Charming

: Cinderella and The Prince Dancing

: Sleeping Beauty

: Sleeping Beauty (Aurora)

And then, of course……..

I did wonder…. if he had been told ahead of time that he was going to Disney World and the Princess Room……would he have remembered to pack his comb?

We had lunch, rode the Winnie the Pooh ride, It’s a Small World, the train and on the way out, visited the gift store for books. That was really all we had time for. He saw his Princesses and bought some books so the day was a complete success.

Back on the ship, DC single-handedly won Disney Trivia. The most difficult part of the game was getting DC to actually whisper the answers in my ear so I could write them down. DC’s whisper, is not a whisper at all. What he thinks is a whisper is talking in a louder than normal volume in a whisper-like voice. He does not really understand that whispering is supposed to be quiet. After the first few answers, he did finally get it and our team won the game. He knew every single song and the movie it came from, in only a few notes! If they were to ask him the name of “the voice of” (the voice actor), he could definitely supply that answer as well.

After his big win, he went through his entire script:

“I did it!”

“I am so Proud of You” (DC reverses his I’s, me’s, you’s, ect. – he is telling me how proud I am of him)

“I am so impressed” (again, he is telling me how impressed I am with him)

“Gasp! Put hand to chest” (at which point I have to act surprised, gasp and put my hands on my chest)

Afterwards in our travels around the ship, a few passengers recognized him as the Trivia winner. being the ham that he is, DC was in his glory with all of the recognition.

Next Stop…… ~~Bahamas~~ (oops, shhhh).

DC is not a fan of the Bahamas. We didn’t mention this stop to him. We did tell him that we were going to visit Atlantis and just for that added boost that he always needs when he isn’t really interested in the activity, I added that we are going to search for Atlantis, the Lost Empire . No, Michael J. Fox would not be there, we are just going to look around at the old city (We were actually taking a trip to the aquarium, but the tour was touted as “Search for the Lost Continent”). Making a Disney or favorite movie connection always helps to peak his interest. I always make sure that he does not expect too much, though. I wouldn’t want him to be disappointed.

Two years earlier on a Royal Caribbean cruise, we opted not to take a tour in the Bahamas and decided instead to just go into town and walk and look around. It was hot and it was crowded. To say DC hated it, is an understatement! Anytime the Bahamas was mentioned after that particular trip he would sign “all done” and emphatically shout “No I didn’t! No I didn’t!”

‘No I didn’t’ in DC-speak means “No I don’t want to (go there, do something, etc.)”

He really enjoyed the aquarium. He loved looking at all of the “artifacts” from the “Lost Empire” and he was much more interested in looking at the fish than he usually is. He generally does like to see the fish no matter where we go but, like me, after a few tanks, he’s done. I think the artifacts kept him interested a little bit longer.

Aquarium…..success!

On the way back to the ship, we stopped off at the drum “stage” that I was sure he would remember. At this point he realized he was in the Bahamas.

As you can see, he was not happy “No I didn’t! No Ba-ha-ma-mas!”
As soon as he understood that we were going back to the ship; not going walking or shopping, the Bahamas were just fine with him. He even took a minute to play the drums.

It is now permissible to speak of what was formerly known as the “Island that must not be named”.

To be continued…………..

Dc’s Letter to His Best Buddy, Steve

Posted by TakingItAStepAtATime

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 lose 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.

(Steve and DC – Photos in no particular order – please excuse the quality – my way of blurring the background people that may not want to be pictured in a blog)

The following was written by DC. Of course it took awhile, he didn’t just sit down and type. I asked him questions and he answered them. His answers made up this post.

The content below are DC’s words. It was typed entirely by him (over a few days, as typing more than a sentence or two at a time, is not “fun” for him).

Nothing was corrected or edited. I love it just the way it is.

****************

dear steve

I am happy your are best buddie.

we had lots of fun together .

I liked going to parties and eating food.

I am a good dancer

I will miss you very very much wen you go home .

I hope we will talk on the telephone .

and on the FACEBOOK .

I WILL RELLY AGAIN MISS YOU**.

I LOVE BOSTON

YOUR FRIEND .

***************

and I do believe that he will miss him, very much………………….

Thank you also from me. I know it is often difficult to carry on a conversation and/or understand what he is talking about, which is usually why his former Buddies did not show very much interest, but you hung in there. He really enjoyed your company and as much as he does not like to talk on the phone, he DID really enjoy receiving calls from you. We wish you nothing but the best after graduation. You deserve it!

**”I WILL RELLY AGAIN MISS YOU” – just another example of Literally Speaking. DC said “I will really, really miss him” and I told him he should write that in his letter.

He then looked to me to repeat what he just said word for word, so he could type it.

I said: “I will really and then write ‘really’ again – miss you” (Meaning write really twice.)

So it came out as “I will really again miss you”

Conversations….

Posted by TakingItAStepAtATime

conversations (2)

At Work:

John: 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.

John: I just want to be clear about how it works. They can use their credit card, correct?

Me: They can use their credit card or their bank account. (#1)

John: Okay, where is the link?

Me: The payment link is at the bottom left of every invoice.

John: And they can only use a credit card?

Me: No, they can use a credit card or their bank account. (#2)

John: Okay, so if they use the link for, say a deposit, can they use the same link to pay the balance?

Me: Yes, they can.

John: I just wanted to be clear about it before I talk to my client. The link is at the bottom of the invoice and they can only use their credit card……………….

sigh

Edited March 2018 to add: (same person)

John: (yells across the office) Vick, did you get an email check from my client?

Me: An email check?

John: Yes. Did you get check through email from my client?

Me: I got a notification that they paid the invoice from their bank account.

John: Huh! I didn’t know that they could do that.

At Work:

I received an e-mail with a secure attachment. I receive this same e-mail every other week with a secure attachment that I open, enter my password and access the information that I need. I have received these specific e- mails with the secure attachment for more than five years.

The e-mail I received on this day did not have the attachment.

I forwarded (not replied, but forwarded) the e-mail back to the sender and explained that the secure attachment was not attached.

The reply:

“But were you able to open the secure document and view it?”

questionmark

After Work:

DW: I was driving to work and I saw a lot of blue signs – I don’t know what it was all about.

Me: It is Autism Awareness Month (#1). It is probably for “Light it Up Blue”

DW: No, it said something about blue lights all month so it must be for something different, because Autism Awareness is just one day, right?

Me: World Autism Day is one day, but April is Autism Awareness Month (#2).

DW: Well it must be for something else, because the ribbons on the signs were different and it said something about lights all month.

Me: April – which is this month, is Autism Awareness Month! (#3). Where did you see this?

DW: I don’t know!

Me: (??????!!!!!?????)

DW: What?! Why are you looking at me like that? It must be for something else!

Me: I asked you where you saw this and you answered “I don’t know”

*I have to wait for him to stop laughing because as usual he didn’t hear the question but pretended to and gave me a random answer that didn’t make any sense.

DW: It was here on the green, but it must be for something different because it says it runs all month.

Bang Head Here

At Work:

Joe: I didn’t know you were taking the day off. I would not have scheduled this client to come in. (*I have nothing to do with the person coming in, except to supply standard paperwork)

Me: It has been listed on the calendar for months and it was noted at the last meeting.

Joe: Well I don’t check the calendar every five minutes, so you need to tell me when you are going to be out. I wouldn’t have scheduled this client to come in.

Me: Everything you needed for the client was completed before I left. I thought the procedure was to check the calendar before we schedule anything? You wouldn’t have had to check the calendar every 5 minutes – only once, since it’s been there for months.

Joe: (yelling now) Yes! I’m wrong, but you just left (*at my regularly scheduled time) and sent an e-mail with all of the information I needed – after you left.

Me: I don’t have access to my work e-mail at home, so I didn’t send it after I left, I sent the e-mail reminding you that I would not be here and listing the paperwork that I left for your appointment – while I was still here.

Joe: (still yelling) Well, I didn’t have time to check my e-mail while you were still here so I didn’t see it until after you left!

woah

At Home:

Me: DC how was work today?

DC: (my 23-year-old son with Autism) Great!

Me: What did you do at work today?

DC: “Scoop the Dirt”

“Water the plants”

“Clean the cart”

Me: What are we doing tonight?

DC: “We going to Best Buddies dance with my friends – lots of food”

Me: Are you going to wear your new suit?

DC: “Yes, look handsome”

and finally…..

a conversation that makes perfect sense…………………………….

Knock, Knock, Knock on Wood

Posted by TakingItAStepAtATime

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

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

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

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……………)

Pants on Fire

Posted by TakingItAStepAtATime

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.)

****