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

Posted by TakingItAStepAtATime

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

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

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

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

It turns out that I am not……

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

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

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

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

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

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

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

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

Because…..he’s an adult now………

“Hi, Mom! Did you have a nice day?”

Posted by TakingItAStepAtATime

Many of you may know that DC is obsessed with food. He has breakfast and he is already worried about lunch. After lunch we move on to:

“Dinner is later after that” – he always seems to add “after that” when he talks about “later”.

He must give me his breakfast order before he goes to bed every night. There is never anything different about his order from one night to the next, but he feels compelled to tell me every night before he goes to bed.
There were a few times (very few) when DC forgot for one reason or another, to remind me of his breakfast order before he went to sleep. On those occasions, he came into my bedroom to wake me up in the middle of the night so that he could give me his breakfast request.

Most days, when I get home from work DC does not even say hello. He gets his wallet, holds it open and says “Only two dollars”. This is his way of telling me that he wants money for lunch at work the following day (and for some reason, there always seems to be two dollars left in his wallet).
His only concern at that moment is his lunch the next day.
My reply is usually “Hi, Mom! How are you? Did you have a nice day?” – at this point he realizes that he did not even say hello before asking for money, he says hello, but then gets right back on the subject at hand – his wallet.

We run through this same routine very often…..

…………………..until the other day, that is.

DC came over to me, with open wallet in hand, as usual.

But instead of telling me that he only had two dollars, he ran through every greeting he could come up with all in one sentence as if he was just trying to get it all over with. It was such a monotone, run-on delivery, that it took me a second to understand what he doing:

“Mom, how are you feeling, hello, nice day, yes, nice to see you, good day, happy, hi there”–

Then when he ran out of random greetings……

“Mom, only two dollars”

Seafood anyone?

Posted by TakingItAStepAtATime

Just a quick post just because I am so proud of my boy. I have told him so many times since yesterday that DC finally said, “Mom, write story”.
I don’t know if he asked me to ‘write story’ because he is proud of himself too or that he just wants me to stop telling him every 5 minutes, but either way, his wish is my command.

DC and his dad gave me a gift certificate for Mother’s Day for a seafood restaurant. The restaurant is very popular I am told. I had never been there, but DC has been there with his Dad and a couple of other times on field trips with an organization where he participates in many of their activities.

The restaurant is about an hour away, so we decided to make a day if it.
For a kid that loves to go ‘out to eat’ almost as much as he loves going to the bookstore, he didn’t seem all that excited when we finally arrived. Also, for a kid who remembers EVERYTHING, he didn’t seem to recognize it and told me more than once in the parking lot that he did not want to go there (I think he was a little bit out of sorts to begin with yesterday).

Once inside, he saw that they had cheeseburgers on the menu and he also seemed to now recognize the place so he stopped telling me he didn’t want to stay there. DC’s standard order anywhere we go is: wings, cheeseburger, french fries and coke. I could see they did not have wings on the menu so I was surprised when he ordered “fried chicken” with his cheeseburger. I did not see that on the menu either and tried to explain this to DC. He was getting upset and luckily the girl at the counter stepped in and corrected me and said that, yes they do have fried chicken and we CAN order one piece as a side dish/ appetizer. I should have known that he of course, would remember what he had when he was there before.

– SAVED by the counter girl –

I told DC that he was correct and that Mom was wrong, which just put him in a better mood, because he LOVES when I tell him I am wrong. 🙂

We took a seat and not too long after, our food was ready. In the booth behind DC was a family; parents and three young children. In the seat directly behind DC’s head was the mother and two of the children, they looked to be about 3 years old. The two children were on the inside of the booth climbing all over the place and screaming, two inches from DC’s head. At first I didn’t pay much attention because there are times that noise really bothers him and other times he seems oblivious to it. This seemed to be one of the oblivious times, until all of a sudden, he looked at me, lifted his fists straight up next to his head, clenched his teeth and just shook! There are many times when I don’t immediately know what is wrong, but this time it was apparent.

I told him that I understood what was bothering him and told him that it might be better for him if we just moved his food to my side of the table and sit with me. First he refused, because he was all situated where he was, but after thinking about it for only another second, he agreed. He moved over to my side of the table, he looked at me, put his hand to his forehead, pretended to wipe it and said “Phew!”

It was a simple fix, but I was so proud of him for keeping himself under control. Yes, he shook his fists and clenched his teeth, but he did not make a sound, he did not yell, he did not lose control. He found his own way to let me know he was having a problem and he let me help him to correct it. I’m sure the people in the booth didn’t even know anything was happening. I praised him over and over again for keeping himself in control and letting Mom know there was something wrong and letting me help him.

I also took it as an opportunity to explain to him that when he sometimes gets loud in a restaurant that this might be how the other people feel; this is why I always ask him to try to keep his voice down. I’m really not sure if he understood the connection, but I have to try to make it, when the opportunity presents itself.

He went on to enjoy his fried chicken, cheeseburger, fries and coke in the seafood restaurant without incident and in a much better mood for shopping and bookstore visits to come later.

(this post was written entirely on my phone, please excuse any typos and run on sentences)

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………………….

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”

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……………)

For Sami, Love Daddy

Posted by TakingItAStepAtATime

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

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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