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.
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.
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!
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!
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
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).
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!
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….