It may not be all about the cake…

Posted by TakingItAStepAtATime

This was not supposed to be another month of updated re-runs, but I keep running into the same situations or anniversaries so that is what has happened. I do have plenty of posts banging around in my head; I just haven’t gotten around to writing them.

DC’s Dad just came back from seven months in Florida and we are up against the same situation as in the post below. DC does not want to go out of his way to see him. Not because he doesn’t like his Dad – he just has gotten out of the habit of seeing him. He’s been gone for as I said 7 months and now here comes this guy trying to mess up his schedule.

He called and asked to see DC on Sunday as Sundays turned out to be DC’s pick last year, but he immediately said no. He said no to Saturday as well until his Dad offered to take him out to dinner. He agreed but wanted to be sure that he was coming home right after dinner.

I am sure he will get over this as he did last year. I can not blame him for feeling the way he does, nor will I ever force him to go. I want him to know it is his decision. Once he gets used to him being back, I am sure he will come around, if he doesn’t then I’m sure we will figure out something so he will see his Dad without stomping all over his decision.

So it may not be all about the cake this year, but I am sure, it will not be refused if offered…

Will there be cake? (from 5/2015)

DC’s father was in Florida for the winter. He left in mid-November. DC did get to see him on the day after Christmas for dinner when DC, Doug and I were in Florida on vacation.

His dad came back from Florida in May for the summer. One of DC’s first visits with his dad was on a Sunday. They went to his Aunt’s house for DC’s belated birthday party. His dad was not here for his birthday and his Aunt was ill at the time, so the party she planned to have for him right around his birthday had to be put on hold. They made up for it that Sunday though. DC was happy, he loves his birthday and nothing could be better than to be still celebrating his birthday two months later and let’s not forget the cake! Cake is very important to DC!

His father asked to take him on the following Wednesday, so DC went to his father’s house and came home in the morning in time for his transportation to take him to work. It was only a few days later on Sunday that DC had his seizure. He was supposed to go to his father’s on the following Wednesday, but we decided to cancel since it had only been a few days since the seizure and I was not comfortable letting him out of my sight.

A week later, his dad took him to his Aunt’s house again, this time to celebrate Father’s Day with the rest of his family. DC came home happily listing everything he had to eat because that is what is important. (He did ask me about “cake” before he left that morning and I told him that there may not always be a cake every time he goes to his Aunt’s house…..but yes, there was a cake 🙂 ).

When his dad returned him on that Sunday he asked if he could take him again on Wednesday. DC got frustrated and said “No! I don’t want to!”. He does this at times – he says no, without meaning to or without really listening to what he is saying “no” to. I told him not to worry, we had nothing scheduled on Wednesday and it would be fine for him to go to Dad’s. After his dad left he continued to go on about not going. I thought that he might be confused so I brought him to the calendar to show him that there was nothing going on that day. I wrote “Dad’s House” on the calendar. DC got angry and yelled “Cross Out! No!”.

From the many years spent crawling around in DC’s head trying desperately to figure things out, I had an idea about what was going on here, but I left it alone for a while. When I talked to him again a few hours later and got the same response, I decided I had to call his dad the next morning. As I said, I had an idea about what was going on but first I wanted to be sure that nothing happened, even something as small as the power going out for a split second, or the dog jumping on him, or a piece of furniture in different place, would be enough to cause this anxiety. There was nothing that he could think of.

I told him what I thought this was all about. DC hadn’t seen him in over 6 months. He was now used to not seeing his dad and only talking to him on the phone. Even before he left for Florida, he had not taken DC twice a week for many years, it was always once a week – every other Sunday and every other Monday. Now he is home and DC, with his own agenda in his head, and also quite used to not seeing Dad, feels as if Dad is “cramping his style” for lack for a better term. That, combined with his seizure and probably not wanting to sleep anywhere but home was making him a bit anxious. He loves to see his dad, don’t get me wrong, but he is used to what he is used to and it will take a little time for him to get used to something else. His dad suggested that I ask DC what day he would like to go to his house.

Later that day I did ask DC if he wanted to pick a day that he wanted to go. There was no fussing and no anxiety, it was his choice. He immediately wrote “Dad’s House” on Sunday. I told him that I would call his father to see if he was available that day. As it turned out, he wasn’t. I told DC that Dad had to work on Sunday (he didn’t, but it was easier than trying to explain “other plans”) I asked him if he wanted to make another choice. He chose Wednesday! The same day he was so adamant about not going!

Wednesday came and he was happy to go and he was still happy when he came home.

What have I taken away from all of this?

~ He needs time to get used to the fact that his father is going to be a part of his schedule again, at least until winter comes.

~ We need to make sure that DC is allowed to have some say in the matter and give him a choice of dates.

And….. you might think I am trying to be funny or making a joke, but I know my child…..

~ I am absolutely 100% certain that when I first gave him a choice and he opted for Sunday right away, it was only because he thought there would be cake……

#WeWishWeCouldGoBack #LOST

Posted by TakingItAStepAtATime

To commemorate the 6th anniversary of the series finale; I give you this year’s ‘Lost-aversary’ gifts

and my post from the 5th anniversary….

Happy Lost-aversary #LOST #WeHaveToGoBack (from May 23, 2015)

It has been 5 years – 5 years since the LOST series finale. May 23, 2010 – Five Years! It does not seem that long.

LOST was one of the handful of TV shows that I always made a point of watching in real-time (Eureka and the Walking Dead are the others). First thing in the morning when I arrived at work the day after a new LOST episode *Al and I would discuss the entire show from beginning to end – theories, theories, theories. As soon as lunchtime hit, *Dustin would be in my office and we’d go through the whole thing again. *Al commented more than once that we needed a support group – and looking back on it- we all probably did. Out of the office, the conversation always turned to LOST after our monthly Human Services Committee meetings with at least one and at times two of the Town Staff that were in attendance.

May 23rd – LOST-aversary, as it has come to be known is celebrated every year. Greeting cards are mailed and LOST gifts are presented.

: Al’s office

: My Office – Mr Eko

: My office – Desmond Hume

: Dustin’s Office

: My office – Card

This year I am away on vacation. I don’t know at the time I am writing this what kind of internet or phone access I will have.

So…. it is the 5th annual Lost-aversary and……

There will be no annual “Make Your Own Kind of Music” and “Shambala” voicemail messages to kick off the day.

The greeting cards were not mailed because they would arrive much too early.

But….. the gifts have been purchased and this post has been pre-scheduled so with any luck *Cracker will see the post and it will remind him make his deliveries.

I am sorry I am missing it, but at the time this post is scheduled to publish, we should be having a Dr. Who Experience which almost totally makes up for missing the 5th Lost-aversary.

Many things, good and bad have been said about the way this show ended.

The only disappointment for me was never hearing or seeing Libby’s full back story and…… was Hurley’s imaginary friend Dave, really Libby’s dead husband? His name was David and…… it sort of looked like Libby was seeing him at the table with Hurley at the institution …… Yes, I still obsess and go right back into “theory mode”, when the subject of “LOST Unanswered Questions” comes up.

I haven’t watched the series again since it ended. I haven’t wanted to. There are some television series I can and do watch over and over again, like Eureka, Firefly, The West Wing, Homicide; Life on the Streets and Angel – all of which I absolutely love and there are others like LOST that I have no desire to watch again, not because I didn’t just love every single minute of it (with the exception of season two, The Tail Section season) but because I want to remember it the way I remember it. Maybe on the 10th Lost-aversary, but not now. I have watched the last episode over a good many times, though.

Say what you want about the way it ended, but……

(spoilers!!!)

These people left the island and went on to live their lives. One by one as in real life, they died – all at different times and at different ages and stages of their lives. Afterwards, they moved into a sort of ‘holding pattern’ where they lived completely different lives (Flash-sideways) oblivious to the life they once had and unaware that they were there, in this new life waiting for each other. They lived their new lives until all were there, united and were ready to remember – to remember their previous life, the most important part of their life and the people that they loved. They lived these lives until they were ready move on into the light….. together, as it should be.

Christian Shephard to his son, Jack: “Well, there is no “now”, here. This is a place that you… that you all made together so that you could find one another. The most important part of your life was the time that you spent with these people on that island. That’s why all of you are here. Nobody does it alone, Jack. You needed all of them, and they needed you.”

And I just love that.

“See you in another life, brother”

5th Anniversary gifts

The aftermath…..

Posted by TakingItAStepAtATime

I wrote about the passing of my step-father and DC’s understanding of the situation in an earlier post (Understanding Death is not like a Disney Movie). Not to diminish how difficult it may have been on anyone else, but this was a very difficult time for DC and this blog for the most part is about DC and the way his autism affects him and his life. It is about the way we go about things and the way he handles situations.

I have said before that I do not always look for accommodations for DC – I want him to try everything. There are times when the “regular” way of doing things need to be adjusted a bit.

If he needs to stand in the receiving line with me, then he does.

Everything does not have to be done “by the book” or the way it has been done for years. Adjustments can be made and those adjustments should not be looked upon as failure. I understand that people who do not know any better actually think we can “train” our kids to do everything the way that they think it should be done or the way it has always been done or better yet, we should be able to train our children to control themselves at all times. No, but we can try to help them manage situations and manage the anxiety.

If DC needs to flap or cluck like a chicken, then he does.

It helps him. I will try to find a spot where his flapping will not cause damage to anyone or anything. Letting him do these things helps him to calm himself down. Keeping him from doing these things to release his anxiety will only cause something more epic or disruptive later when he just can not control himself any longer.

Knowing my son, I decided that it would be easier on him and everyone in attendance, for him to stand in the receiving line with me at the wake on Friday. Yes, it would be a lot of pressure and hours of people shaking his hand or hugging him but I thought that might be easier than having him sit with Doug with nothing to do for hours. This was a brand new situation for him and I know my son. If sitting away from me, eventually he would begin yelling “Vickie*, come here please” or running through (trying to, anyway) the receiving line to get to me. If he couldn’t get to me or was redirected from trying to crash the line, he could have gotten quite loud. Standing with me in the line was definitely the lesser of two evils. If it got to be too much for him, Doug was there to take him outside for a break if need be. Because she gets it, my friend Carrie actually thought to bring him a few Kit Kats when she came through the line.

If he needs to eat Kit Kats in the receiving line to help get him through this, then he does.

I have to hand it to him though; he didn’t even try to open one until there was a lull in the line.

I have to say that he did exceptionally well. I could see that it was difficult but he held himself together. He was a bit agitated but really pretty much in control. Of course, he had to work hard to stay in control and he was very relieved when it was over.

Knowing how much he fought to keep himself together and what his reaction would be going back into the same situation the following morning, I talked with him at length about what would happen the next day. I explained that we would have to go back to that same room in the morning but we would not be there very long before we got back into the car to go to the church. I knew going back there was going to be very difficult for him. DC really does not have a great sense of time, so explaining that we would only be there for an hour does not really mean much to him – a little while, and not very long, seemed the way to go. But as much as he seemed to be listening to me and understanding, I was very worried about the next morning.

On Saturday morning, the family met at the restaurant where the reception would be held later, to meet the limo. He began to get anxious as soon as we got into the limo and the rain only added to his anxiety. I told him to do whatever he had to do while we were in the car – flap, yell, whatever. He did not want to hear any of it. He was in full blown anxiety mode before we even made it through the door of the funeral home. I asked him if he wanted to sit with Doug – he didn’t. He wanted to stay with me, but he could not control himself. I took him out to the lobby to let him get it out of his system – I asked him if he needed to flap – “NO”, I asked him if he needed a hug (more for the pressure than the actual hug) – “YES”, but it did not help. Each time he said he was ready and we went back in, it began all over again and back out to the lobby we went. We were still in the family only viewing part of the morning before the general public came in. For me, his “semi-meltdown*” would have been much easier if it had happened in a room full of strangers rather than just family (if that makes any sense). Over and above my growing anxiety over trying to keep him together, all I could think about was we were now trapped there without a car. What if he just could not pull himself together? I began thinking about our options to get back to the car during the second time-out in the lobby. Thankfully by the third lobby trip he seemed to begin calming down and we were able to go back inside for the duration. Once again,

if he needed to be in the receiving line with me, then that is where he was going to be

and if he needed to have his “Babes in Toyland” book with him, then that is what he needed to have.

He made it through the viewing and we got back into the limo to go to the church, still anxious, but he was able to control himself for the most part. The cemetery in the rain was not easy but we were not there very long. Arriving at the restaurant and seeing that our car was still there made him feel much better, less trapped I think and he was back to his old self.

This was a long couple of days for him and I really debated about going to my mother’s house on Sunday. Once again I did not listen to that little voice in my head and we went. He was already on the edge. Then came a comment “smiles and ice cream”, which led DC to believe there was ice cream. After convincing him that there was no ice cream, next came the insinuation that pizza was part of the food order that was going to be picked up. Although dinner had been ordered and was waiting to be picked up, pizza had never been part of that order. Was this supposed to be funny? A Joke? I can not even offer an explanation about this but not only was there no pizza, but there was not one single thing that he would even think of eating…. That was the end, the very end. He’d had enough. This “semi-meltdown*” was worse than the morning before.

People who are not around him on a regular basis are often surprised when/if they happen to witness an outburst but they happen all of the time, maybe not to this extreme anymore, but they do. His behavior was actually a surprise to the people in the house.

Really?

THIS IS AUTISM!*

I have never tried to mold him into someone else’s idea of “normal”. I have spent years trying to help him navigate situations in a way that he can handle without too much anxiety and disruption to others. For those who did not get the memo; there are going to be outbursts and times when he just simply can not control himself. THAT IS AUTISM! This was more extreme than usual but it is certainly not something that has not happened before. He knows what is happening and he knows he can not control himself, which only adds to his anxiety and makes him feel that much more worse. Keeping him from doing what he needs to do to get over it also makes matters worse. Unfortunately he was past the point of hugs (pressure) and flapping.

Then came the full sentence with correct pronoun “I just want to go home”. Asking to leave Grandma’s house is a very big deal for him. It is not something he would normally do, ever. But I got a full sentence with the correct pronoun. I knew he was serious… so that is exactly what we did.

He had a very difficult time the following day (Monday) and the next, especially in the morning. In other words, the mornings were brutal. By Wednesday we were pretty much back to our normal morning issues but not anything close to what we had been through during the days before.

I am sure that in addition to the anxiety of a whole new experience and a very long weekend, he also has many feelings and emotions about his Grandpa’s passing that he is not able to express. We talk about it often and I hope that if he does not completely understand, continuing to talk about it will help him understand eventually.

*****

*Vickie – Yes, DC does call me Vickie at times. He knows that he is an adult and assumes that he should call me by my “adult” name.

*Semi-Meltdown – I use that term because DC hasn’t had an actual full blown meltdown in years. I can only compare to what his meltdowns were like when he was younger and in comparison, this was “semi”. Although I did not go into detail about his actions, it was getting to be very close to the full meltdown.

*THIS IS AUTISM – This is HIS Autism. As the saying goes: “If you’ve met one person with Autism, you’ve met one person with Autism”

*You better believe that we stopped for ice cream on the way home!

This is the post that never ends….

Posted by TakingItAStepAtATime

and it goes on and on my friends…

Not really but if I continue to add to it every year it very well could be the post that never ends.

For a split second, I thought I had made the same mistake that I made last year in letting him make plans with his friends ahead of time not realizing that those plans fell on Mother’s Day. After frantically going through my texts, I realized that I had not. This year DC and I will get to spend all day together. He’s made his Mother’s Day plans; plans that are all about him. He views every holiday as an opportunity to go ‘out to eat’ so that is what we will do. I am sure that a trip to the bookstore is on his agenda as well. He likes to roll things out a little bit at a time.

I suppose technically Mother’s Day is all about him, right?

Even though the plans tend to favor him, he does understand that it is a little bit about me. He has made it a point to say “Happy Mother’s Day, Mom with my heart” numerous times every day since he realized that Mother’s Day was coming.

I am looking forward to the ‘secret’ hearts and flowers picture that he told me that that he is going to draw for me, going out to eat and even the trip to the bookstore because truth be told, there is nothing I would rather be doing then spending the day with my boy……..

Have a very Happy Mother’s Day!

Now, the rest of the post….

*****

“Ooh, you’re a holiday… every day …such a holiday” – Happy Mother’s Day (2015)

“Now it’s my turn to say….. and I say you’re a holiday”

The day before Mother’s Day 2014, I wrote a post about my obsession with a Macaroni necklace. I thought that it would be my post for Mother’s Day, but on the following day on Mother’s Day I just HAD to write an update.

Since I am still in awe about the ‘updated part’ and the progress my boy has made – I am re-posting both of those posts together today. I am blessed with this wonderful child and he is absolutely a holiday to me, every day…

DC is spending tomorrow with his friend BB at the circus. BB’s Mom bought the tickets ahead of time not realizing it was Mother’s Day and I said that he could go ahead of time, also not realizing it was Mother’s Day.

-insert sad face-

So we will be going out for Mother’s Day breakfast and apparently there is at least a card involved. Never able to keep a secret, DC, when he walked in the house on Thursday night made it a point to announce, more than once that he left Mom’s Mother’s Day card in the car. After breakfast DC will have a good time at the circus with his friend. I’m sure we will get to spend some time together later in the evening.

Wishing you all a very relaxing and happy Mother’s Day!

Mother’s Day and The Macaroni Necklace (2014)

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!

Mother’s Day update

I just had to write an update to my Mother’s Day Post from yesterday, “Mother’s Day and The Macaroni Necklace”.

DC loves to draw and he does draw quite a few pictures for me. His favorite subjects are flowers, cakes and once in a while, pizza. He draws pictures for me for no reason at times but usually his “Flowers for Mom” drawings are reserved for the times he thinks he is in trouble and the times he IS in trouble. When you see “Flowers for Mom” pictures laying about when you walk into my house, chances are DC is in trouble for something. He never draws for a holiday or birthday, unless it is suggested to him.

Less than 12 hours after I wrote..

“His mind still doesn’t go to “Hey let’s make Mom a card or a gift for Mother’s Day”, DC woke up and the very first thing out of his mouth was, “Happy Mother’s Day, Mom!”.

We went to the kitchen and I started making coffee, I turned around and there was DC at the table drawing.

He stopped when he saw me look at him as if I wasn’t supposed to see; “Sorry, Buddy, I won’t look”, and he continued on.

A few minutes later he presented me with this picture, with no prompting and no one to tell him it what a good idea it might be!

Less than 12 hours after I wrote…..

Such a difference from the boy who didn’t know it was a holiday or didn’t know that he should give me the gift that he made in school sitting in his back- pack to the “man” who just can’t wait to make me happy with his gift!”

there was more…………….

Happy Mother’s Day!

***********

Ooh you’re a holiday , every day , such a holiday……

Now it’s my turn to say , and I say you’re a holiday ~ Bee Gees

His Title Remains Firmly Intact…..

Posted by TakingItAStepAtATime

I had to take DC for bloodwork for the second time ever, this week. Because of his seizure medication, bloodwork will become a regular part of his life. I am thankful that due to the type of seizure medication that he is on, he will not have to go for bloodwork every month or even close to as often as some of his friends do – small favors. After all of the chaos during his last visit and even though he realized in the end that it did not hurt at all, I was worried that the ‘not hurting’ part was not going to be what he remembered. The ‘needle’ part is what makes him anxious.

I put his bloodwork off for a couple of weeks because I was scheduled for a physical myself which normally includes bloodwork. I was hoping that we would be able to go together so he could watch me and see that there is nothing to be afraid of.

We talked about it for weeks. I reminded him that it did not hurt. He seemed relatively calm – until we arrived and were in the waiting room. His reaction was just like, if not worse than it was the first time.

The people at the lab were nice enough to let us go together. I wasn’t sure if they remembered him from the last time or if it was just about him losing it at the reception window, or both – but they obliged.

Still, I was not sure if me going first was THE best way to go. I was on the fence. This could go very wrong. On one hand; he could watch me and understand that it does not hurt – on the other hand; THE NEEDLE – he would be watching the needle.

I was still debating in my head when we were called inside and at the last second I decided to go first. He watched every move the lab tech made very intently. He was interested, not fearful at all. When it was his turn, he sat in the chair and insisted on watching the whole thing. He saw the needle and he watched the whole procedure without making a sound. Even with all of the prep beforehand and watching me, I never thought it would go that easily.

The second they were finished, he lost control – jumping, stimming and yelling. Maybe it took a lot out of him to keep himself in control for the needle and he just had to let go when it was over, I don’t know. I do know that even with the before and after commotion, this time was so much easier than the last.

In my opinion, his “Sir DC the Brave” title remains firmly intact….

*****

From August 2015:

“They call me Sir DC the Braaaave”“and history someday will rave…….”

DC had to go for blood work today. He has never had to have blood drawn before. They did take blood in the ER after his first seizure but he was so “out of it” that he did not give them a problem about it at all.

DC has always been very healthy so his doctor and I had decided to put off blood tests unless it was necessary because having blood drawn would entail making an appointment at the hospital to have him put out – an all day affair. He is big and he is strong. Even when he was younger and had to have a vaccination, I had to bring reinforcements to the Doctor’s office. Most of the time we had, his Dad, Doug, me, the assistant and the doctor in the examination room. No one could hold him, no one. It was exhausting and even with all of us trying to hold on to him, the doctor would eventually have to resort to chasing him around the room until she had a semi-good shot at sticking him. I often wondered if he ever actually got everything that was in the needle.

Well, we could put if off no longer. Due to his seizures and medications, he had to have blood drawn. He did let the paramedics put an IV in during his second ride to the hospital and he was much more alert that time. Hoping that he remembered this, I decided we would try to go to a regular lab. I talked to him and explained what they were going to do. I also explained that if he did not let them take the blood at the lab we would have to go to the hospital to have it done. He did NOT want to go to the hospital again.

He was all right until we got to the waiting room at the lab. He was in full-on anxiety mode – yelling “I do believe in fairies, I do believe in fairies, I do believe in fairies.”, jumping up, yelling and making his noises quite loudly.

We got him into the drawing room and into the chair and at this point he had calmed down enough that I really thought we would be able to do this – until he saw the needle.

Let the battle begin.

The technician called for back up and fortunately Doug had come with me as reinforcement. Still no one could hold him. It had gotten to the point where as great as the staff was, I knew they could not do this much longer. They gave it one last try with Doug actually laying across his free arm and all of us holding the “needle arm”. As soon as he saw the needle go in he stopped fighting and let them finish. Sometimes the anticipation is worse than the actual event.

He was fine. He was proud of himself. “I did it! I did it!”

When we walked out of the room all eyes were on us from the now very crowded waiting room. I am sure they wanted to see who had been causing all of that commotion. I could not care less. He did it and that was all that mattered. DC, with a wave and a smile yelled “Good-bye Ladies” and we were off.

In the car on the way to breakfast before heading to work, DC was so proud and not wanting us to forget it, began singing a song. I recognized it from when he was young, but I hadn’t heard it in years. I could not even remember where it came from:

(his name has been muted out of the video)

(A reenactment, of course)

“They call me sir DC, the brave,

and history someday will rave

I’m valiant and daring, and noble of bearing

Courageous and gallant, a mountain of talent.

No wonder folks curtsey and wave

I’m Robin, Sir DC, the brave.”

Later I asked him what movie he remembered that song is from.

The Frog Prince – the Muppet version, of course.

He was brave, very brave. I am happy he is so proud of himself. Hopefully this means that the next time might go much easier.

Now next up…. the MRI……

That should be something!

(video begins at 2:44 – at the song)

Cinderfella Revisited

Posted by TakingItAStepAtATime

We are spending the weekend in the Cape, celebrating Mary’s birthday. Mary is one of my oldest friends, Alison’s mother – the matriarch of my favorite family.
While we are enjoying our weekend with the best people in the world, I give you a post from last year at this time….

CINDERFELLA

I think this may have been the title of an old Jerry Lewis movie, so if I haven’t dated myself with “Gimme a head with hair”, I am certainly dating myself now….. but on with the story.

We just came home from a weekend trip to Cape Cod. As I mentioned in my last post, I was invited to the birthday party for the mother of a very old friend, Alli. I spent quite a lot of time at their house when I was young so it is always an honor to be invited to these birthday events.

The Cape is a good 3 1/2 hour drive (4 1/2 with me in the car) so again, we opted to make a weekend out of it. There was plenty for DC to do at the hotel even if the weather did not cooperate – it did, eventually. We arrived on Friday afternoon and on Friday night, we had dinner with Rhoda who had flown up from Georgia.

Saturday was a busy day. I met Rhoda and Alli for breakfast. DC and Doug went for their breakfast earlier because DC could not wait until 10:00 to eat breakfast, “second breakfast”, maybe but not first breakfast. They went directly to the indoor pool afterwards. It was nice to be able to spend some time with my friends and catch up without interruptions.

After breakfast DC, Doug and I went out for a drive just to see what was around in that area. We came back to the hotel around 1 and I went down to the banquet room to help set up for the party. We finished about 4.

Back in the room, it was almost time for me to start getting ready for the party. DC and Doug were busy making plans to go to the bookstore (yes, DC did spot a Barnes and Noble while we were out earlier) and out to dinner.

Doug is not one for big parties like this and DC, as much as he loves to dance and eat, would not have made it through the whole thing. As I could almost guarantee there would be no wings on the menu he was happy to go to dinner with Doug. So I would be attending the party with Rhoda.

Needless to say, I did not see a lot of DC on Saturday.

At about 11:30, the party-goers were starting to thin out. Under direct orders from the birthday girl, I went back to the room to bring DC down to the party for a visit. There was no doubt that he would be awake. He wouldn’t go to sleep before I came back and I figured that Doug probably needed a break from “Mom is coming back soon?”.

He had a good time. He visited the cupcake mountain and the candy buffet and had a Shirley Temple with Mom. He danced for quite a while, by himself and with two beautiful ladies.

When the party was over and DC and I were walking back to the room, he started reciting a story. This was nothing new, he loves books and stories and knows almost all of his stories by heart. He did spot the “Ballroom” sign on his way into the party, so I knew there would be more than one Cinderella reference on the way back to the room. He started his scripting (or what I thought would be scripting) and I realized that this was different. Speaking very clearly, like a narrator, he said:

Once upon a time –

The best boy in the whole world came to the ball.

and noooooo one knew who he was.

He ate cakes

He ate candy

He ate golden jellybeans

and

danced

and danced

all night.”

After he told this “story” a second time, I said “Oh No! Should we go back to look for your shoe?”

“No”, he laughed and called me silly.

Here’s the thing though…. as many books and stories as I’ve heard him recite over the years, he never veers away from the original stories. They are told as they are – and in his mind, as they should be. As much as he loves his stories, his books and movies and as much as he may relate one to another or to a place or an event, he almost never relates them directly to himself or I should say, he never adds himself into the mix.

He not only altered the original story, but he altered it to include himself….

and………….

he got the shoe joke…..

*****

Post posting update:

DC made an appearance at the party as he did last year.

DC Dancing

He also told me a story on the way back to the room. It was a slightly adjusted version of “Cinderella”. Although he did not insert himself into the story this time, he did add:
“And she just ran out of the ball for no reason. She was so rude.” 😃

Understanding Death Is Not Like a Disney Movie

Posted by TakingItAStepAtATime

My step father passed away this week. DC adored his Grandpa and the feeling was quite mutual. When I had to look for a few old photos for the service, there were two that I was determined to find. The first was of DC on a bike with his Grandpa running along side him, holding him up.

The other was from my brother’s wedding when DC was about 5 or 6. The photo was from the hotel room before the wedding. I was standing off to the side and there was DC and his Grandpa, in their tuxedos standing in front of the mirror, arms out to the side as if they were saying “Taa Daa! Look at us”. As I searched and searched for this photo I remembered standing there watching this moment between them in front of the mirror and thinking I was about to take THE cutest photograph that had ever been taken, when my mother walked right through the shot. I had missed the moment with the camera. I realized that this photo that I had been searching for existed only in my head. All these years later, it is still right there in my head as if it was yesterday; as if I had actually taken the picture.

I was not sure how to explain his Grandpa’s passing to him. He has never lost anyone close to him before. I was not sure that he would understand. I have tried many times and in many different ways to explain this to him in the past, when people we knew had passed on, but I was never sure that he really understood.

In his Disney movies, characters may die but usually someone comes along to give them a kiss to wake them up. (I truly believe that this was part of the reason that DC insisted on kissing him on the forehead more than once at both the wake and the funeral a few days later). As many times as I have tried, I have never come up with a good, understandable way to explain this to him.

That afternoon when he came home from work I made the attempt to tell him what had happened before we left to go to my mother’s house. I told him that Grandpa had been very sick and he was very old (I added that so I would not frighten him into thinking that if he got sick, the same thing would happen to him) and because he was just so sick, he died. I specifically did not use the phrase “passed away” so as not to confuse him with different words.

“Do you understand what that means, DC?”
“Yes”

“Grandpa loved you very much and he did not want to leave you. It was not his fault”

“Yes”

“This is not like your movies. He will not be able to come back, like Snow White. He died like Cinderella’s father. Do you remember that Cinderella’s father did not come back after he died? I am sure he wanted to come back but he couldn’t.”

“Yes”

His Grandpa had been suffering from dementia for the last few years and was well past the point of recognizing anyone, so DC really had not seen him in quite awhile. He would ask for him every once in a while when we went to my mother’s and Grandpa was not sitting in his chair. We explained to him that Grandpa was sick and was in his room at his new home where there were lots of people who could take care of him. I am not sure that he ever really understood that and I sometimes got the impression that DC just thought that Grandpa was upstairs taking a nap.

Both DC and I had birthdays in March. We had planned more than once to get together with my mother but she was sick herself for a good few weeks and did not want to infect DC or I with whatever she had. When we arrived at her house that night she brought out the gifts that she had been holding on to. DC opened his card and as he always does, read the card in it’s entirety out loud. Then he reached the signature and read: “Love, Hugs and Kisses, Grandma and Grandpa”.

He stopped and he looked at me. I could see he was a bit confused. Then he said “Grandpa ‘is’ died”.

Honestly, I did not expect that. He really had been listening, paying attention and possibly understanding a little bit of what I had explained to him earlier. I told him that Grandpa wrote the card on DC’s birthday a few weeks back and that he was very lucky to have this card that Grandpa wrote for him before he died.

(Of course, Grandpa was too sick to really sign the card, but DC really did not need to know that)

This seemed to make sense to him and he no longer looked so confused.

On the way home that night, I mentioned to Doug how I still was not really sure that DC understands what death means and how much I really want him to understand it.

Doug asked me why it is so important to me that DC understands. Why couldn’t I just let him believe what he believes, the way he believes it and leave it at that?

I understand that thought process. I understand wanting to protect him from anything bad or sad, I do. So why is it so important to me that he does understand?

“Because one day I am going to die and I want him to understand that it is not something one wants to do. I never want him to think that it was my choice. I NEVER want him to think that I just left him.”

Twenty-Five

Posted by TakingItAStepAtATime

This week we celebrated DC’s ‘twenty-five birthday’ (DC-speak).

TWENTY-FIVE!!!!

I just cannot wrap my head around that fact. I cannot believe so much time has passed. I cannot believe that the little boy that I once carried around… everywhere, is 25 years old. I have heard about his ‘Twenty-five’ birthday all day, everyday since the calendars changed from February to March, but it really did not hit me, emotionally until the day before, when some tears were definitely shed.

‘Happy tears’ – I told him. He loved that.

He has come so far in those 25 years….

From the boy whose only word until he was almost 7 years old was “”Momma” –

To the boy that eventually moved on to –

“Mommy” – and then –

“Mother” when he’s feeling a bit more formal and/or reciting Disney.

To the man who at times decides that “Vickie” is appropriate because in his mind, he is an adult and he should call me by my adult name.

From the boy who was always the loudest person in the room but could not tolerate noise or crowds –

To the man who is still the loudest person in the room, but can tolerate noise and crowds so much more easily, most of the time.

From the boy with the very limited menu who I thought would never gain any weight –

To the almost 6ft, 200lb man, still with a limited menu, but a bit more open to trying new things.

From the boy, who due to a delayed reaction from almost choking, completely stopped eating for almost a month –

To the man who can still have the random delayed reaction, but now his Mom can usually recognize it and figure it out much more quickly.

From the boy who could not stand to be away from me at any time and had no interest in his peers and socializing –

To the man, who still must know exactly where I will be, but looks forward to spending time with his friends and attending social activities.

From the boy who, I was told would never speak –

To the man who never stops talking.

From the boy who was always lovable with me when he was a baby but had a very low tolerance for his head, ears, face and so many other touches that I remember saying, “If he wasn’t so loveable, I would think he hated to be touched”

To the man, who will still hug and kiss his Mom (and is not embarrassed to do so), but will also hug his friends, his family and just about anyone he wants to, whether they want a hug or not.

I cannot be more proud of my boy…. I cannot love this child more. He amazes me everyday. He makes me laugh everyday. He fills my life with worry. He fills my life with love. I would not trade the last 25 years for anything in the world. He is the joy of my life.

If I had only one wish; my wish would be for the rest of his life to be as happy as it is right now and that he will be just as full of sunshine and light as he is right at this moment……

Insert: ‘Colorful Metaphor’ (or: The things I am tired of hearing)

Posted by TakingItAStepAtATime

These and many variations of the same, are comments I often hear

“You are so lucky that DC can travel”
“You are so lucky that you can take him places”
“You are so lucky that…… blah, blah, blah….

Luck does not have very much to do with it! DC’s accomplishments took a great deal and many, many years of hard work. Now I do understand that all the work in the world may not always make a difference and I am certainly not saying that the parents who are having a more difficult time of it did not or are not putting in the work – but seriously, why is it always about luck?

How many times have I heard that same line? “You have it easy, DC is such a good kid.” – Why are we made to feel as though we should apologize for our children making strides and accomplishments? Isn’t that the goal? I have also had other parents tell me that they are made to feel as if they have nothing to contribute because their children are just not ‘difficult’ enough by someone else’s standards. Or the line that I love the best – “You just don’t know what it’s like”. I have heard that one many times from parents of autistic children as well as parents of NT children. No, maybe I don’t know exactly what your life is like but I can certainly say the same to you.

When DC was four years old, his school speech therapist informed me that he would never speak. He speaks. He is verbal. Conversation is difficult, but he is verbal. Would he be able to speak now if I believed the nonsense that this therapist was spewing? No, I went out and found him a private speech therapist while continuing to fight with the school system.

I can take him places because I TOOK him places. I am a single mother – have been for a good 23 years. I took/take him everywhere. If I did not, he or I would never have left the house. It wasn’t always successful, many times it was an out and out disaster. Most times we were both in tears by the time we left but we kept at it. Did I let it bother me or deter me from taking him shopping when the check-out man at the Health Food store saw fit to stop the entire line while DC was wigging out (we didn’t have the official “meltdown” word way back when) and I just wanted to pay and get out of there before I burst into tears? When he found it necessary to give me his opinions – in front of a line of waiting customers – about what vitamins and/or supplements I should be giving him to calm him down? <Insert colorful metaphor>

Should I have stopped taking him out when he would grab food off of other people’s tables when we walked through a restaurant? (I always offered to replace the food or drink he may have touched before I could grab him). No, I learned that I had to hold both of his hands and tell him over and over again that he should not touch other people’s belongings, until he learned and until I felt that I could trust him not to. That took years.

Should I have just given up and just stayed home when he had ‘meltdowns’ and frightened the other children repeatedly in his gymnastics class, birthday parties and a number of other places? I don’t think so. Keep in mind that Autism Awareness/Acceptance was not even an idea back then. There was next to no information, guidance or support. We were pretty much on our own. IPads? We barely had the internet.

I could go on and on…….. and on…and on… but I won’t.

Why are we not allowed to celebrate the accomplishments? Why should I be made to feel as though I should apologize that he is a happy guy?

Don’t get me wrong, I am not complaining about any of the work. This boy has worked just as hard if not harder than me. I am quite positive that many people are in the same boat and we will be in this boat together forever. Everyone has their challenges and we should respect those challenges, even if the challenges are not visible. We can’t just take everything at face value.

DC is 24 years old. He is a happy guy. He has a good life. He is the joy of my life. But even with all that he has accomplished the bottom line is, he will never be able to live on his own without full support. He will never be able to take care of himself. He does not understand safety. He does not understand many many things. He has no siblings. Even though his father and I have taken steps to be sure he is provided for, and have designated guardians in the event that anything should happen to both of us, those people are all my age or close to it. He will long out live all of us and realistically I should be looking at people his age, but I really do not have any options in that age group – again, he doesn’t have brothers or sisters. He will probably have to live in some sort of group home type environment with strangers and no one to look out for him. Dependent on strangers. At the mercy of strangers. This is devastating to me. It is what keeps me awake at night. It breaks my heart already.

He deserves to live the rest his life just as happily as he lives now; and that is the one thing I can not promise him.

How lucky is that?

**** I have written and rewritten this post many times over the last few months attempting to reduce the high on the hostility meter to at least a mid-level reading. I hope I was successful.

“What’s the matter with Ren?” …. Not a thing!

Posted by TakingItAStepAtATime

Here we have the final installment of our visit to RI Comic-Con – I did say that I had a lot to say about it, didn’t I?

Again, we are going back to Friday night – the best night of the Con, in my opinion….

We arrived in Providence on Friday afternoon. We had plans to meet with Wendy, an old friend of mine from the old neighborhood and also of Wendy Jane’s Soul Shake fame. Although we are in contact via Facebook, I do not believe that I have laid eyes on her since high school.

*Wendy Darling, as she has now come to be known, looked exactly the same and I was more than a bit jealous that she hadn’t aged a day. She brought us to The Duck and Bunny, which was only a few blocks away from her house. It was such an adorable place. The chocolate and peanut butter cupcake was exceptional and the fries served in a flower pot….. so cute! *Wendy Darling asked him a question at one point and he answered with a “yes”. He then continued to repeat the “yes” over and over again. He has done this quite often since and I am sure he has done it before this, but when you are used to someone repeating things over and over again, it doesn’t always click that it is different from the normal repeating of words or phrases. It was more obvious to me that he was stuck. Since then, I have noticed it more. He seems to get stuck on a word and can not make his way out of it. I often wonder if it is the meds, but of course that is one of those questions that can not or will not ever be answered. It only took me saying “I think you are a little bit stuck on ‘yes’ there.”, to which he answered “yes” to get him unstuck.

The convention center was very close to *Wendy Darling’s house so we said our good-bye’s and headed out.

A month or so before, a RI Comic-Con status came up on my Facebook page announcing the addition of Christy Carlson Romano to the list of Comic-Con guests. Without thinking and because DC was right there, I told him about it. This was all I heard about for the following month. I was kicking myself for even mentioning it to him because other than the announcement and her photo on the site, I could not find her listed in the photo ops, the panels, or autograph sessions. There was just no indication of where she would be.

DC was and still is a huge fan of Even Stevens, particularly “Even Stevens Influenza – The Musical” which for some reason has never been released on Video, DVD or Blue Ray. Still, he knows every word to every song and has been able to find most of the clips on YouTube. Because of Christy, he is also a big fan of Cadet Kelly and Kim Possible.

Again, I will say that I am so happy we went on Friday night! I was on a mission to find her or at least where she would be when we came back on Saturday. I knew that we could not leave RI without finding her. I would never have heard the end of it – never!

While we were waiting in the Supernatural room on Friday night, we happened upon the only helpful volunteer that we came across over the entire weekend. We asked him (very quietly) where we could find Christy Carlson Romano. Luckily, he knew who she was and he directed us to the “Animation Room”. The Animation Room was over a bridge in a different building. We headed over there not expecting to see her, but hoping to find her table so we would know right where to go on Saturday. Personally, I would have loved to have spent more time in that room – there were so many other people I would have liked to see, but we were on a mission.

We came around the corner and there she was at her table with only one person in line! I did not know whether DC would be able to control himself or not when he saw her. We got in line and DC jumped up and down and squealed while she was trying to talk to the people in front of us. Me? I was so relieved to have found her that I didn’t think to give DC my usual instructions – don’t touch her hair, don’t pick her up. The moment the people in front of us left the table, DC charged behind the table before I could stop him and gave her a back-crushing hug. I was worried that we were going to have another Snow White incident (see: Rules I thought I would never have to make), but he was able to restrain himself, or he remembered the rule without being reminded. In either case, he did not pick her up. But, “Don’t rush the table” is now officially added to THE LIST.

DC is a big ~~boy~~ man and I would not blame anyone for being frightened seeing him bounding towards them. I have to hand it to her, she was not and if she was she hid it well. She was so fabulous with him. She spoke to him in a happy excited voice, which just excited him more. She held his hands, possibly in self defense, but it didn’t matter – he loved it. She asked him questions. She sang part of the Kim Possible song. She asked him his favorite song and he went right into a partial rendition of “We Went to the Moon in 1969”

He must have really wanted to talk to her because normally if he knows the words to a song, he will not stop singing midway – he has to sing it to the very end and he did not this time. He wasn’t going to waste his precious time with Christy singing.

Meeting her was the highlight of the weekend. Yes, he was over the moon when he met Alex Kingston (see: Hello Sweetie), but this was even better. This was right up there with meeting Cinderella for the first time.

Normally no matter how much he loves something or someone when we go to an event, he will always just give me the last thing he did as a reply to “what was your favorite part?”. Four months later when asked what his favorite part of Comic-Con was, he will still tell me that it was Christy Carlson Romano, which was not even close to the last thing he did at Comic-Con.

She must have really made an impression……