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

If you can’t laugh at yourself……

Posted by TakingItAStepAtATime

This post was originally scheduled to run in recognition of April Fools Day, but due to other circumstances occurring on that day (here), it did not seem appropriate to let it run.

This post is a rerun from last year. No, they are not April Fools gags or pranks (I could only wish they were) but, if I can’t laugh at myself, someone else will do it for me.

Having said that, I just remembered another that probably never made a Facebook status because it was quite a while back, but adding to the evidence of my inattentiveness and another I will blame on my poor eyesight (Those are my stories and I am sticking to them):

I was reading an article in the town paper about all of the businesses that were either moving out of town or just closing their doors completely due the outrageous rents they were required to pay. At this point I had lived in this town a good 10 years, so when I saw a business name that I didn’t recognize at all, I asked Doug:

“Where is Ken’s Taco Hut?”

He just looked at me oddly.

“I’m reading this article about businesses closing and I have never heard of “Ken’s Taco Hut”. Where is it?”

Odd look again…. then he took the paper and proceeded to laugh for quite some time (in all honesty, I don’t believe he has completely finished laughing ) and said, “You’re kidding right?”

“No! I’ve never heard of Ken’s Taco Hut! Has it been here long?”

Yes, it had! It was a fast food place that DC and I has been to quite often that was a combination of Kentucky Fried Chicken, Taco Bell and Pizza Hut, hence the nickname Ken-Taco-Hut (exactly the way it was written in the article).

and…

From my car, I always thought “Tony’s” was an odd name for a Chinese restaurant . Today while walking my @charitymiles, I discovered that #IJustNeedGlasses

From July 2015:

Something’s coming…Could it be? Yes it could…….Old Age or just losing my mind?

This is one of those posts that I put together and save to post later when we are away or when I am really busy and really don’t have the time to write (or, when I have been sick most of the week). Like the “Blog Title Series” (Series? Yes, there’s more), they are very often off topic or “fluff”. I like fluff, sometimes fluff is fun.

So when I say “the other day”, it may have really been the other day when I wrote this, but I never know how long these posts will sit before they are actually published….

To be honest, “the other day” or “last year” or “just recently” in my mind can mean just about anything these days. I often think something happened just a few years ago, only to find it happened 10 or 15 years back. I seem to have no sense of time anymore – which leads me to the point of this post….

I don’t think about my age all that often, unless of course I make some sort of mistake and then of course I blame it on my age. It is a perfectly good excuse for many things.

Then there are days like today when I start to wonder if it really is just an excuse. Granted, I have had a few things on my mind lately but still, I am beginning to wonder….

I stopped at a convenience store on my way to work this morning. I stop there quite often and almost always park in the same space. This morning my that space was taken so I parked on the other side of the building. When I came out of the store I headed towards my parking space. I looked at the car and while I was trying to open the door, I said to myself “Why does my car look so dark?” – yes I actually said that to myself! I didn’t think “Oh this is not my car” instead I thought it somehow magically changed colors!

This incident reminded me about another day a few weeks back when I pulled into the drive-thru at the bank. I pulled up to the drawer and was fishing around in my purse when a heard a voice from the speaker coming from behind me “Can I help you?”. When I looked up I realized that I had passed right by the drive-thru window and was sitting in front of the night drop drawer.

Keeping all of that in mind, I was going through my face book looking for something. Everytime I start looking for anything on-line, in the house or anywhere, I never seem to find it. I do usually come across other things that distract me from what I was originally looking for. Here are a few status updates of mine that I came across:

So I guess you can’t teach an old dog new tricks…6 months with the new car and I still forget to put it in park before turning it off and am I the only one who forgets to put the cup under the KEURIG?

After looking at the pictures we HAD to have taken for work, I realize I really need to have eyelid surgery (this is, of course above and beyond all of the other issues I already knew I would see). ‪

You know you’re getting old when you can throw out/ hurt your knee just getting into the car!

Okay, so I haven’t driven an automatic in the snow since 1984! To quote DC, “I’m getting very nervous about this”

I don’t really understand what this “poking” thing is, but okay……

Remember when you could just open a toy and take it out of the box? I’ll pay cash for someone to open this!!!! 💰💰

So you know how facebook is always trying to get you to “complete your profile”? What does it say about me that the only option showing under “Which musicians do you like” is: GILBERT O’SULLIVAN????? ….and yes, I do know who he is……………………

I may or may not have just washed my spoon at work with Windex because I was too lazy to walk back downstairs to the kitchen ….

Just wondering, a week later, because that is what I do…… Is it odd that I was watching a show about Zombies, blood, guts and cannibals and the guy chewing gum (or whatever) is what grossed me out?

I just un-wrapped a cough drop, threw it in my purse and shoved the wrapper in my mouth…… It’s already been one of those days…

I just tried to open the garage door with my phone

NEVER look into the magnifying side of the mirror while wearing cheaters!

It happened! I was offered a senior discount 😦

and let’s not forget The alarm went off and Mom has lost her mind

I don’t think I have to go on……. Fortunately all of the above happened in a span of a couple of years. I would really be worried if they happened all on top of each other.

Having just said that: Today I was in the office on a Saturday. I went down to the kitchen to make a cup of tea. I got the cup, tossed in the tea bag, threw in some truvia and it wasn’t until I started filling the cup with hot water from the dispenser that I noticed the unopened packet of truvia floating in the cup.

Later at home while making tea, I tossed in the tea bag, and a packet of truvia – making sure that I opened and poured the contents into the cup and put it into the microwave. When I took it out I discovered I had forgotten the water.

Again, I HAVE had a few things on my mind lately and I am notorious for not paying attention (she says trying to defend herself)…

I’m beginning to see a pattern emerging here…… and I think might be time to give up tea….

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……

********

*Wendy Darling – for those of you that do not live Disney 24/7 – Wendy Darling is from Peter Pan.

I think there’s a form for that…

Posted by TakingItAStepAtATime

Last week was DC’s 6 month review IP (no “E”, he is out of the school system) meeting. There are required reports that I have to fill out after each and every IP and review meeting (partially because DC has afternoon staff until I come home from work). Every report says just about the same thing, but still, I have to write paragraphs upon paragraphs of the same thing each time. Then, as I’ve written about before, there are the annual reports that seem to all come along all at the same time. Right before this IP meeting, I received a new report in the mail – A review to make sure that DC is still disabled.

The questions do not seem to apply to him at all. They seem to apply to a person who is on SSDI – Disability (someone who was once out in the workforce and now can not work due to an injury or an illness). I do not know how to answer any of these questions because they really do not pertain to him at all.

I was told that even though this does not have anything to do with him and it is for a type of disability benefit that he does not even receive, I still do have to complete the form and return it.

I was also informed that no, I could not just write across the page with a black sharpie “HE HAS AUTISM – IT DOES NOT GO AWAY!”

So off I go, to try to fill out another form that has nothing to do with my child, to prove that he still has autism for a benefit that he does not receive and does not qualify for (while waiting for the internet repair guy….. again).

While I do that, you all can feel free to read a post from 3 years ago (before I developed that aversion to opening my mail) about the very same subject; forms and inefficiency.

Does everything really need to be this difficult?

Please Note: The following is a rant, plain and simple; a rant, a vent, whatever you would like to call it. There is no moral to the story, no happy ending, no “Ah Ha” moment, no conclusions to be drawn (actually there are many conclusions to be drawn, but we won’t say them out loud) – just a plain and simple “I’ve had it” kind of rant.

For those of you who don’t have a child with special needs or have young children and haven’t had to think about the “adult” side of things, here’s how it works. I don’t know if it’s the same in every state, but this is the way it goes here.

When your child reaches the age of 18, depending on the severity of the disability (can he/she make decisions for themselves) the parent is required to apply for guardianship of their own child otherwise they will not have the ability to make decisions for that child. The state views them as adults, period, and this means they should be able to make their own decisions, medically, financially, etc. (Paperwork, Probate hearing)

Due to budget cuts right around the time DC was to about turn 18, anyone not covered under Title 19, lost their case worker through Department of Developmental Services. DDS is where the funding comes from for their work/day programs after they leave the school system at 21.

This is the time in our children’s lives when you really need to have a case worker. This is when you have to begin looking for a program for them when they leave school.

Before you can apply for Title 19, you first have to apply for (SSI; not SSDI) Social Security (tons of paper work).

After you apply for Social Security, you can begin the application process for Title 19. I am fortunate that my case worker, Ruthie, at the time, was there to help with this. She came to my house and my friend who has a son the same age as DC, came over and we all did the paperwork together. If not for her, I would still be sitting in the same place trying to figure it all out.

Now we’re done, right? Wrong!

Every year I have to fill out the forms for Guardianship (when they come, sometimes they don’t) again – just to be sure DC is still disabled. Not a big deal, just annoying. But seriously, he has autism, it doesn’t go away.

There is an annual report for Social Security as well as an audit or two during the year “just because”. And….. now that he is in a work program and makes a tiny bit of money, I have to remember to call in during and only during the first 6 days of the month to report his wages for the previous month to Social Security, so they can reduce his monthly payment appropriately.

Also once a year we receive the annual Title 19 redetermination, which is basically as much paperwork as the original application. I’m not complaining, I can live with all of this, but it is a LOT of paperwork!

Complaining begins here:

Now, I may not look like the most organized person in the world, but I do get all of these things done, on time, always!

DC’s redetermination was due on July 20. On July 16^th I mailed a giant package with the application, the year’s worth of check stubs, his last bank statement and insurance cards – everything they asked for in the instructions. This was the fist time filling out a redetermination since he had begun working.

Done! PHEW!

Wrong again!

On Monday, August 26^th I received a letter from DSS that his benefits had been discontinued because I did not complete and return his redetermination! There was a form included so I could request a hearing. This form had to be completed and returned by August 30^{th –} in four days!

“Calm” was never and will never be a word used to describe me, so the next morning a dragged all of my “books” to work to re-copy all 43 pages of his redetermination, because at this point I can’t think about anything else.

First, I decided to try to call the number (silly, yes I know). There was really no menu item that described this situation and no way to talk to a person, so I moved on to faxing the hearing notice and the copies of the redetermination to the number provided. The fax was cutting out and disconnecting and after I don’t know how many attempts, I gave up trying to fax it all.

Knowing this was going to take more than a fax at this point, I took my lunch break at 9am so I could copy all of these forms, check stubs, insurance cards and bank statements. I decided I would mail one copy to the local office and the other to the address that was on the hearing notice. Two more giant packages in the mail – Done!

I was not confident that either of these packages would ever be seen by anyone, as they never received the original and having only 3 days now to request a hearing, I found different phone # in all of my 3 ring binder records and tried again to call. Fortunately, I was able to put the call on speaker and do some work while I waited otherwise I’d be putting in for vacation time to finish all of this! Unfortunately, all of my co-workers had to listen to “Your wait time is…. more than 20 minutes” over and over again.

An HOUR and 9 MINUTES later (just a tad more than 20 minutes), an actual person picked up. I explained the situation as calmly as I could.

Her reply was: “Oh, we’ve put a new system into place where all the redeterminations go first to our scanning facility and are in-putted into our system for us to work on. Because the system has been up and down and they are very backed up, we probably do have your original redetermination and we have extended everyone’s deadline to November 20^th. His benefits have not been cancelled.

Seriously? It may have been more effective to put THAT in the letter instead of telling me his benefits were cancelled and I only had 4 days to do something about it!

Those that know me can imagine where the conversation went from there, so I will spare all of you the details.

End result, she gave me her fax # and I faxed another 43 pages directly to her. She did explain that she is not the person that would be working on my son’s case, but I wanted them to go to SOMEBODY.

So at this point, there are 3 packages of my son’s information floating around somewhere and one more in the hands of this person who has nothing to do with my son’s case.

She also informed me (after receiving 43 pages) that they really only need the last 4 pay stubs. Hmmmm….. Maybe the redetermination instructions could say that!

So….

They lost his original packet (but maybe not, we may never know)
You can’t talk to a person at the number they provide.
They mailed letters to clients telling them their benefits were cancelled. (The person I spoke with said they received 1500 calls that morning)
They extended the deadline without bothering to tell anyone (This would have been something to send a letter about –it may have gone a long way to reduce the amount of calls they received. And really, nobody at DSS found it odd that 1500 cases were being cancelled at the same time, due to non-completion of their redeterminations? – Somebody had to MAIL all of these letters!)
They sent a hearing notice to return by fax within 4 days with a fax number that clearly doesn’t work.
And I still don’t know if anybody that actually works on his case has his forms at this point.

I feel like there was nothing accomplished here and there was an enormous amount of wasted time on both sides.

I suppose I will be in the dark until I get my notice in November.