2016 Top 5, #2 – Understanding Death Is Not Like a Disney Movie

My second most popular post in 2016 about understanding death and dying. Not an easy concept for DC to grasp.

Understanding Death Is Not Like a Disney Movie 

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.

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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.

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(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.”

 

 

 

 

 

 

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2016 Top 5 Posts, #3 – Not the ‘Real’ Autism?

In at #3 for posts written in 2016 – a post that was not written all that long ago….

 

Not the ‘Real’ Autism?

me-and-dc

DC was agitated all last night. He gets agitated often but these days it does not seem to last as long as it did when he was younger. It usually comes and goes in bursts and then it is over – sometimes not, but for the most part now-a-days, it does not last too long unless something is really bothering him.

DC and my conversation last night:

DC: Mom, come here.

Me: What is wrong?

DC: Nothing wrong. I feel all right.

Me: You don’t feel well?

DC: (Getting angry) I feel all right! Behind me!

Me: What’s behind you?

DC: (Still angry) NOTHING BEHIND ME! I feel all right.

When he came back downstairs, still with that look in his eyes I asked;

Are you sure you are all right?

DC: Behind me!

Me: Does your back hurt? (I checked his back – there was nothing)

DC: NO!

Me: Is your back itchy?

DC: NO! I fine!

Me: DC are you sure you are feeling okay?

DC: YES!

Worried that he didn’t feel well I told him to rest on the couch with his ipad.

One of the many things that I worry about is DC having something medically wrong with him and I will not be able to tell.

Unless he has a fever, vomits or passes out right in front of me (try catching a 200lb boy at 3am) there is really no way for me to know. He doesn’t really let on when there is a problem and when there is, his behavior is pretty much the same as it always is. I don’t know if he doesn’t feel pain like the rest of us or he just doesn’t process it the way we would expect. This guy can run full speed with a sprained ankle!

When he got settled, I tried again.

Me: DC, you know that it is very important that you tell me if anything ever hurts. If your head hurts, if your stomach hurts, if your tooth hurts or anything else hurts, you always have to tell me. Promise?

DC: Yes, I promise.

Me: Tell me what you are promising to do.

DC: I promise never to hurt. 

Me: DC, every one has hurts some times. If something is hurting, you have to promise to tell Mom.

DC: I promise.

Me: Tell me again what you are promising.

Blank Stare…

Me: What are you going to do if your stomach hurts?

DC: Go to the bathroom.

Me: Okay…. but what else?

Nothing…

Me: You are going to tell Mom. What should you do if your head hurts?

DC: Rest.

Me: Good, and what else?

Nothing, again and I had to prompt him to say “Tell Mom”.

 

I keep seeing posts on line talking about the ‘Real Autism’. How my child being happy is somehow doing a disservice to the autism community. I will never apologize for my child being happy. He is, for the most part a happy guy. He’s funny and certainly a charmer and he knows how to use those charms to his advantage. When he does something like tape the sides of  his mouth with scotch tape to keep a smile on his face, it is funny but it is also impressive to me that he came up with it.

I find it much easier to explain autism, HIS autism by telling specific stories about how his mind works, the things he does or says, the many things he is obsessed with, his likes, his dislikes and some of the issues we face. At times I will use humor to tell a story because at times the situations are funny.

The fact remains that he, an adult, can not even communicate to me when/if there is something wrong or something bothering him.

No, he may not be a 25 year old in a diaper but..

my son will never be able to live on his own. He will never be able to take care of himself. He will not know when/if he’s being taken advantage of. He does not understand danger or safety. He is verbal but really not able to communicate if something might be wrong.

What about this is this not ‘Real Autism’? Everyone is different, DC’s autism is certainly different than your child’s without a doubt. Different does not mean ‘Not Real’.

Even with all that DC has accomplished over the years, 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 and will long out live all of us. He will at some point 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.

Even though I try to write in a more upbeat fashion, I think I have made this point perfectly clear over the years.

What about this is not ‘Real Autism’?

We are all fighting on different fronts in the same battle – the battle for our kids to lead productive, safe and happy lives. But I can not write about your child’s autism, I can only write about my child’s autism.

If you are adamant about spreading awareness about the other sides/levels of autism then DO THAT! We need to show the public every single side that we can. Start a blog, write and submit articles to online publications – there are enough of them out there, ask to write a guest post…. do something other than admonishing people for their views and stories.

DO SOMETHING!

I choose to tell our story they way I choose to tell it. It is OUR story.

You have to be the one to tell your story.

There is room for everyone.

 

 

 

 

2016 Top 5 Posts, #4 – “You can’t stop the signal, Mal”

Coming in as the fourth most popular post written in 2016; a post about technology and the iPad – also known as “Shooting Myself in the Foot”

“You can’t stop the signal, Mal” 

serenity

“Everything goes somewhere, and I go everywhere” ~ Serenity

 

Well Mr.Universe, apparently the signal can indeed be stopped and unfortunately wherever the “somewhere”  where everything goes is; it is definitely far from here……

During almost the entire month of November on through early December my internet was down more than it was up. After weeks of “talking” to “The F word’s” Customer Service people, getting a new modem and visits from service techs, I threw in the towel and switched my internet/Wi-Fi provider.  Although this provider is so much better than “The F Word”, my internet goes down at least once per week – for days at a time or the signal is so bad that I do have internet but it is equal only to a very bad dial-up connection from the old days. “It’s true, there’s no beacon”*.

I have to believe that I must live on “the edge of the galaxy”, (in) “that place of nothing*”. In a void. In “the darkness. Kind of darkness you can’t even imagine. Blacker than the space it moves through”* ……. or I just have exceptionally bad luck with anything having to do with technology of any kind.

We had a snow day recently and I found myself thankful that when I upgraded DC and my IPhones a month or so ago, I purchased a tablet that can run on my AT&T data when there is no Wi-Fi. It was then that I had a “What were you thinking?” moment.

I bought DC an IPad for Christmas. Why? I do not know. I don’t know what I was thinking.

Well… I do, I guess. It is extremely difficult coming up with Christmas gifts that DC will like. Basically he wants DVD’s and Books (and of course the standard Band-Aids, scotch tape, pens, paper and mustaches), all of which he receives throughout the year. He does also receive them at Christmas time as well, but it is difficult finding DVD’s or Books that he does not already have. So I decided that he really would love an IPad. He does love it – maybe too much.

DC is 24. He grew up without the benefit of all of this technology, so keeping him occupied, especially when we were out, was a battle. When he was young he really loved watching Disney videos (VHS, for you youngsters), but there was nothing “portable” for him to take with him. Still, he developed and obsession with watching these Disney VHS tapes to the point where he did not want to do anything else in anticipation of watching these movies. I had to limit his movie watching to weekends only. If you think THAT went smoothly, you are very mistaken.

When they came out with those little portable DVD players, I bought one for DC… but he was only able to use it when we traveled or when there was a day off from school and he had to come to work with me. He never used it at home, so it did not occur to him to want to use it at home. When those bit the dust, I would let him watch his DVD’s on my lap top when he came to work with me. Somewhere along the way he discovered YouTube. I did not even know he knew how to use the internet – apparently they showed him how to do this at school and really, you only need to show him once.

So okay, he was now allowed to use the computer and/or watch his movies on the weekends. After he crashed my computer…. twice, I was happy when he won a laptop in a raffle, but still it was to be used only on the weekend, when we traveled, or when he came to work with me.

Moving on….

When he was in his transition program (18-21) before he left the school system, I decided that he really needed to have a cell phone. The phone is something that he does not grasp 100%, but I really needed to know he could call me or someone if he needed to.  I started out with a TracFone because I did not know if he would be able to keep track of this phone and not lose it. Once I saw that he was very good about knowing where it was at all times and carrying it with him, I upgraded him to an IPhone. It wasn’t long before he discovered he could get to YouTube and his Facebook page. That was fine with me. He only used it in the car. This was one of those rules he makes up in his own head – there are a lot of those – he would only use it in the car or on the bus.

He does have a Kindle that he really is not all that thrilled about. He would rather carry 20 lbs. of books in his backpack and of course, he can’t edit a book on Kindle. Then for some reason he got over his “only in the car” rule for his IPhone. He would use it at home, but only for about a half hour so that really wasn’t a big deal for me.

Then in my infinite wisdom, because he hates his Kindle and likes the IPhone, I decided to buy him this IPad. Well….. I have single-handedly created a new obsession. It was new, so at the beginning of course I let him use it more than I should have. In my mind (and really, my mind should have known better, but the “should have known better” part of my mind was overridden by the “wanting to give him something he really loves for Christmas” part of my mind) I really thought he would just replace the IPhone half hour with a half hour on the IPad.

Well, it did not work out that way. He loves it and I am glad that he does, but he wants to use it all of the time and when he freaked out about the internet going down and I found myself being grateful that I had the tablet that uses my data, I knew I had created a big problem.

I was able to manage all of these years without the benefit of the IPad and I am really disappointed in myself for creating this issue. We will be working on this and it will be limited, but I am really angry at myself for creating a situation that needs to be worked on.

On the other hand, I am angry because he loves it and I feel bad because I should know; I DO know that everything goes from zero to obsession and why do I always have to put limits on the things that he loves?

 

*Firefly ~ Bushwacked

 

 

 

 

 

2016 Top Five Posts, #5 – The aftermath…..

Happy 2017!

2016 was not a banner year for many and I will admit that it has been THE worst year that I, personally, have had in quite a long time – quite a very long time.

Instead of running a post with a list of my top 5 (or 10) posts in 2016 – I think I am just going to begin 2017 re-running the top 5 – one each day. Hopefully by the time I finish, I will maybe feel like writing something new. I have not really been in the mood for that either lately.

Full Disclosure; I did not receive (or it is possible that I deleted it accidentally) the official WordPress end-of-year notification so I am going strictly by my stats and by the stats alone, there are 3 that were not written in 2016. Technically the post below is # 8, but #5 in new posts.

The following was written after my step-father’s funeral.

 

 The aftermath…..

 

NY May 6-8, 2011 080I 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 in the family, 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!

 

 

 

 

 

 

 

‘Froggy’ Windows, Hearts and The Way He Looks at Things….

fog

Yesterday while standing in front of the door waiting for DC’s transportation to come, I decided to draw a few hearts on the fogged up window. DC loves to draw on windows when they are all ‘froggy’ (DC-speak), so I asked him to draw a heart for me. He did, and in true DC fashion he started with a V and continued around in one stroke to make the heart, instead of drawing one side and then the other. I still find it amazing the way he sees something as simple as a heart. It still comes out the same way, but he sees the drawing of it quite differently than I do. It always makes me wish for that 5 minutes in his head to see, through his eyes the way he sees the rest of the world around him.

The heart reminded me of an earlier post about this very subject (and ummmmm…. full disclosure – the hula hoop is collecting dust in the same spot I left it back then).

Perception, Hula Hoops and a little bit of Firefly…. 

 

fire

Last week I was talking to my friend Geri at work and somehow we got on the subject of hula hoops. I proceeded to tell her that I was quite the expert hula hoop-er when I was a kid. I could hula hoop 4 at a time, I could do all of the tricks. I could start at my wrist and hula hoop to my neck, waist, hips to my knees and all the way back up again. I could walk down the street while hula hooping. I was pretty good, if I do say so myself.

Later, back at my desk, Al rang my extension to tell me that he had been in Target that past weekend and he noticed that they had a few Firefly characters on the shelf, “You know, that guy that you like with the Hawaiian shirt”.

“That would be Wash”

“Why is he holding a dinosaur?”

“[sigh….] ‘We will rule over all this land, and we will call it…This Land’ “ – He did not get it. I e-mailed him a clip, he would not watch it.

After only watching for 20 minutes a year ago (he insists it was more), Al has determined that he HATES Firefly. With every ridiculous reason he gives me, it becomes only another reason for me to make it my mission to get him to watch it.

I told him I had planned to stop at Target on my way home anyway so I would check it out.

I stopped at Target as planned and looked in the toy department for the Firefly figures. They were sold out. – What does this tell you, Al? I would not have stopped in the toy department if it were not for the figures but while there I happened to notice hula hoops. On a whim, I bought two, one for me and one for DC.

I brought them home and DC was not impressed at all. I tried mine out and much like anything that is different to him – as my first pair of glasses that he insisted that I “Take off glasses, NO!” or anytime I happen to put my hair up “Mom! Hair! No!” – he did not like it at all. He kept grabbing it to make me stop. I finally got him to stop grabbing it and hula hooped for about 15 minutes. It was exhausting, because, you now – I’m old, but it was also kind of fun. It was so exhausting that I wondered if this could actually be a workout – I googled it and yes, there are quite a few hula-hoop workout videos on you-tube. So I’ve found my new workout routine. We’ll see how long this lasts.

This story (I really am going somewhere with all of this) is really about DC’s perception of things, many things. The way he sees things and how difficult it is for him to process what he is seeing at times.  I can never take for granted that what he sees and how he processes what he sees is same way I see it.

His elementary school O.T. pointed this out to me. For example, when DC saw and wrote the letter X, he did not see it as two diagonal lines intersecting

X

– he saw it and wrote it as two V’s (or arrows) connecting.

V

When he first started riding horses he had a very difficult time figuring out how to get on the horse. His inclination was to put the foot closest to the horse in the stirrup which just ended with his foot in the stirrup and the other leg dangling at his side. It took him a long time to understand that he had to put the opposite leg, the one farthest from the horse in the stirrup and swing his other leg over. He got it eventually, but it was not second nature to him, he had to learn it.

For years when he went swimming, he would walk around the pool stroking with his arms. He thought he was swimming because looking at it from outside or above the water, he thought that was exactly what everyone else was doing.

So after I completed my 15 minutes of continuous hula hooping the other day, DC decided to jump on the band wagon. He ran into the living room with his hula hoop and yelled “Hey watch this” and proceeded to spin the hoop. But instead of the hip action it takes to keep the hoop going, he spun himself around. Of course the hoop fell, but this did not stop him, he thinks he is doing it correctly.

“Hey, watch this” again and again.

We are working on this……..

*****
Just for fun……… EVERYBODY SING!

Branches, Branches, everywhere..

DC fell asleep on the couch last night. I happened to notice a scrape on his elbow. I went over to check to see if it was actually a scrape and accidentally woke him from a dead sleep. I apologized and told him that I was just looking at the scrape he had on his arm. In his half-asleep/half-awake fog, he felt for it. I asked him what had happened –

and even in this not fully awake –  really mostly asleep state; his answer was the same as it always is. Already drifting back to sleep,  he  whispered,  “Tree Branch”.

From earlier this year:

Those pesky tree branches…

tree branch

I know that I have written more than once about DC’s inability to communicate to me or anyone else if/when something might be  wrong. There have been very few times that he has actually volunteered information to me when he was not feeling well or when something hurt or was bothering him.

Most of the times when he does communicate a problem to me, it is really just a ploy to cover himself in Band-Aids:

DC: “Mom, my leg is killing me.” (there was nothing wrong with his leg, I checked)

Me: “What happened to your leg?”

DC:”I broke my leg.”

Me: “How did you break your leg?”

DC: “Tree branch. Ouch!” (we are in the house)…

The lengths that he will go, to plaster himself in Band-Aids.

A tree branch seems to be the number one culprit in many of his injuries. This leads me to believe that at one time or another a tree branch was indeed the reason for an injury. When? I have no idea, but once he comes up with an answer he likes, it usually becomes one of his standard answers.

More often than not the answer I get is Nothing ‘wong’ or Nothing happened. Although DC almost never really gets cuts or scrapes – which I assume is the reason for his obsession with Band-Aids and really is not what I’d call accident prone, he does always seem to have an odd mark or “spot” somewhere or another. These “spot” mysteries oftentimes take a good amount of time for me to figure out. He is not always a big help in that area.

There was the one time that he came home from his senior class picnic with a red mark (scrape, but not really band-aide worthy) on his arm. When I asked him what happened, he told me that his IA (Para, to some of you) Mrs. G. pushed him into a bush and he fell down. Now, if I were a more paranoid person (hahaha, who am I kidding, we all know I am) I would have believed this because He Was Actually Telling Me Something, but I have known Mrs. G for years so his explanation did not hold water. Of course I did not tell him that I didn’t believe his story because: 1. He actually told me something and I didn’t want to discourage him from doing so in the future and 2. I assumed that he probably really did fall into a bush and Mrs. G was there to help him out. ~ It’s all in the translation. I spoke with Mrs. G the next day and yes, my version was correct.

Or the time that I noticed a large quarter sized mark on the side of his leg/hip one morning before camp. I could not for the life of me figure out what happened. He was offering no information at all. I asked the camp nurse to take a look at it. She did not think it was any kind of bug bite (I am always concerned about bug/tick bites when he is at camp). I asked DC again what happened he just kept saying “swing”

“Did you fall off of the swing?”

No, swing.

“Did you get stuck on something on the swing?”

No! Swing (he was beginning to get upset – so I had to stop because if I ask too many questions he thinks he is getting it wrong and changes his story).

After thinking about it for quite some time, I realized that he was actually telling me what happened. It was the swing. DC loves the swings at camp. He will spend any free time and all of the outdoor rec. portion of his time on the swings. He is a big boy. The swing was rubbing against his hip every day, causing something that resembled a very large healed-over blister. Once I figured it out, we just kept it covered with Band-Aids, so as not to cause so much friction. This was one of the very few times where Band-Aids were applied for a legitimate reason .

Then there was the big stripe down the side of his neck, which is a regular occurrence now, but the first time I noticed this mark, it scared the life out of me.

“Oh My God! What happened?”

“Tree branch”

He was in the car with me all day. He did not come in contact with a tree branch. Once again, it took me a while to figure this one out. When we are driving he rocks back and forth in his seat with so much force that it shakes the whole car (very distracting to the person driving). Because we had been driving so long, the seat belt was rubbing against his neck with every rock for a good long time, causing this large red stripe down the side of his neck. I do not think he even felt it. I have always believed that he does not feel pain the way we do or he does not process pain the way we do.  This and the fact that he is not always able to communicate what might be going on is and will always be a huge worry of mine. Verbal does not always mean communication.

Last week, I noticed a mark on the back of his leg. I asked him what happened. “Nothing happened”

He hates for me to look at these things because he is afraid that he will have to go to the doctor. After a lot of back and forth and ‘egg – guo – ing’ he let me put some anti-bacterial cream on it and he went on his way. He brought it up again the following day on his own as his way of apologizing for giving me a hard time the day before. “Feels much better now, Mom! Thank you! Thank you!”.

I asked him again what happened and he rattled off a list. I am sure the answer may be in there somewhere if I think about it long enough – and then again, maybe not… one never knows.

“The swing” (which would have made perfect sense as it looked similar to the swing injury –  if he had been on a swing.)

“A rock”

“A spindle – ouch” (my personal favorite)

‘The chair”

“Tree Branch”

So…..

Sometimes I do get the answer I am looking for albeit in a round-about way,

and other times…..

I am just left with a tree branch..

 

 

 

 

 

 

 

 

 

 

Opinions and Closed Cases

A few months ago, in anticipation of a social gathering that we were scheduled to attend still weeks away in the future, I published a “rant” – plain and simple – it was a rant. I already had myself worked up.

 
 

Now I do write my fair share of rants but I would say that 50% or more do not ever get published (okay so I published “sort of” a rant just last week, but usually they do not see the light of day).  Although I have every intention of hitting the publish button at the time, just the writing down of it tends to calm me down and said rant goes unpublished. There are times when the writing down of it does not calm me down and in most of those cases I sit on it, sometimes for months until I am able to edit and bring down the hostility level a bit.

 

Then there are the times when I do not sit on it (while still trying to edit out some of the hostility) and just hit publish.

 
 

After I published the post below, managing to bring that level down, my blogger friend Autism-Mom published a post that said everything in a graceful and more civilized way. If you missed it, you can find her post right below my rant. It is worth the read.

 
 

So………..The holidays are upon us. Need I say more?

 
 

Opinions, Opinions and More Opinions

 
 

As parents of autistic children, we as a community seem to receive a good amount of unsolicited and unwanted parenting advice and opinions from family, friends and even strangers. Why these people seem to be under the impression that this is appropriate behavior or conversation, I do not know. If someone should ask my opinion about their neurotypical child  I may give them my opinion – I may not, (especially since I do not have a neurotypical child to base my opinion on) but either way, I will most certainly not tell them that they are “doing it all wrong” or give an opinion in front of their child.  As a general rule, if not asked I will keep my mouth shut. I do not understand why it always seems to be open season on us, our parenting skills and our children….
BeingHumanUK

 
 

Dear Everyone At The Table:

 
 

Let’s just get this all over with now so I don’t have to listen to it in increments throughout the evening, shall we?
1. “Can’t he do that himself?”
Yes, he is perfectly capable of getting up and getting his own food, but I am closer and offered to do it for him. What about this could possibly concern you?
2. “Does he use that much salt at home?”
No, as a matter of fact he doesn’t use ANY salt at home. (See post) – I do not even buy salt as I don’t use it either. He and I together probably consume less salt than any single average person would. Someone along the way must have shown him that salt is used for something other than fairy dust so he does feel the need to use it when we go out to eat.
3. “Does he eat that much at home?”
No he doesn’t. Not even close. He would if I let him, but I don’t. Yes, he gets a little bit carried away when we are out, but one of his favorite things in life is going out to eat so what would be the fun in it if he doesn’t get to have what he likes?
4. “You should make him order a salad with his meal. Does he eat any vegetables?”
He eats a good amount of vegetables, probably more than you do. In his mind, salad and vegetables are not “out to eat” foods. (See answer #3) I don’t believe that I will have to rush him to the hospital for not having vegetables at this one meal. He eats a good amount of fruit too, but I am sure you will now point out how much sugar there is in fruit so I guess I may as well be giving him candy.
5. “Does he exercise? He looks like he could use some exercise”
He walks and goes to the Y at least 3 to 4 times a week. Not to mention the jumping and dancing he does quite continuously when he is at home. He also runs cross country in the fall and takes Zumba every time the class is offered.
6. “He’s put on a lot of weight. You really need to watch what he eats.”
He is on seizure medication – this is one side effect of said medication. I watch what he eats every day (see answer #3).
He exercises daily (see answer #5)
So with all of that being said;  Would it be possible to reserve this and any further conversation about his weight or eating habits for a time when he is, you know, not sitting right here. My preference would be at a time when I am not here either.
If you should have any other comments or unsolicited opinions on any subject regarding my child, please reserve them for that same time.
While I am not or have ever been in the habit of commenting on everyone at this table’s parenting skills, I do have a list in my head going way back over the years that I can access at a moments notice.  I am not afraid to use it…
(It’s a pretty extensive list)

 

Best Regards,

 

Vickie

 

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CASE CLOSED – Autism-Mom

Open: When I was ready to have a child, I read many books on pregnancy, learning the best ways to do take care of myself for the health of my child.

Closed. The reality of working full-time, pre-eclampsia edema and hypertension meant I had to adapt to meet my own needs as well as my child’s, even if it was different from what the books recommended I do.

Open: After I delivered, the nurses in the maternity ward, books, the internet, my friends and family, told me what I needed to do to take care of my baby.

Closed. I cared for my newborn the way that worked best for us after learning who he was, what he needed, and even if it was different from what the nurses books, the internet, my friends and family suggested I do.

Open: As he grew older, I listened to his teachers, therapists, specialists, counselors, learning the best ways to support him in his growth and learning, including related to his Autism diagnosis.

Closed: I took all of the information I had, applied it to what I knew about my son, and moved forward, even if it was different from what the professionals recommended I do.

Why? Because I am the parent and the decision is mine.

Please read the remainder of this post at Autism-Mom

Thank you for the support, Elizabeth!

****

Happy Thanksgiving to you all!

Not the ‘Real’ Autism?

me-and-dc

DC was agitated all last night. He gets agitated often but these days it does not seem to last as long as it did when he was younger. It usually comes and goes in bursts and then it is over – sometimes not, but for the most part now-a-days, it does not last too long unless something is really bothering him.

DC and my conversation last night:

DC: Mom, come here.

Me: What is wrong?

DC: Nothing wrong. I feel all right.

Me: You don’t feel well?

DC: (Getting angry) I feel all right! Behind me!

Me: What’s behind you?

DC: (Still angry) NOTHING BEHIND ME! I feel all right.

When he came back downstairs, still with that look in his eyes I asked;

Are you sure you are all right?

DC: Behind me!

Me: Does your back hurt? (I checked his back – there was nothing)

DC: NO!

Me: Is your back itchy?

DC: NO! I fine!

Me: DC are you sure you are feeling okay?

DC: YES!

Worried that he didn’t feel well I told him to rest on the couch with his ipad.

One of the many things that I worry about is DC having something medically wrong with him and I will not be able to tell.

Unless he has a fever, vomits or passes out right in front of me (try catching a 200lb boy at 3am) there is really no way for me to know. He doesn’t really let on when there is a problem and when there is, his behavior is pretty much the same as it always is. I don’t know if he doesn’t feel pain like the rest of us or he just doesn’t process it the way we would expect. This guy can run full speed with a sprained ankle!

When he got settled, I tried again.

Me: DC, you know that it is very important that you tell me if anything ever hurts. If your head hurts, if your stomach hurts, if your tooth hurts or anything else hurts, you always have to tell me. Promise?

DC: Yes, I promise.

Me: Tell me what you are promising to do.

DC: I promise never to hurt. 

Me: DC, every one has hurts some times. If something is hurting, you have to promise to tell Mom.

DC: I promise.

Me: Tell me again what you are promising.

Blank Stare…

Me: What are you going to do if your stomach hurts?

DC: Go to the bathroom.

Me: Okay…. but what else?

Nothing…

Me: You are going to tell Mom. What should you do if your head hurts?

DC: Rest.

Me: Good, and what else?

Nothing, again and I had to prompt him to say “Tell Mom”.

 

I keep seeing posts on line talking about the ‘Real Autism’. How my child being happy is somehow doing a disservice to the autism community. I will never apologize for my child being happy. He is, for the most part a happy guy. He’s funny and certainly a charmer and he knows how to use those charms to his advantage. When he does something like tape the sides of  his mouth with scotch tape to keep a smile on his face, it is funny but it is also impressive to me that he came up with it.

I find it much easier to explain autism, HIS autism by telling specific stories about how his mind works, the things he does or says, the many things he is obsessed with, his likes, his dislikes and some of the issues we face. At times I will use humor to tell a story because at times the situations are funny.

The fact remains that he, an adult, can not even communicate to me when/if there is something wrong or something bothering him.

No, he may not be a 25 year old in a diaper but..

my son will never be able to live on his own. He will never be able to take care of himself. He will not know when/if he’s being taken advantage of. He does not understand danger or safety. He is verbal but really not able to communicate if something might be wrong.

What about this is this not ‘Real Autism’? Everyone is different, DC’s autism is certainly different than your child’s without a doubt. Different does not mean ‘Not Real’.

Even with all that DC has accomplished over the years, 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 and will long out live all of us. He will at some point 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.

Even though I try to write in a more upbeat fashion, I think I have made this point perfectly clear over the years.

What about this is not ‘Real Autism’?

We are all fighting on different fronts in the same battle – the battle for our kids to lead productive, safe and happy lives. But I can not write about your child’s autism, I can only write about my child’s autism.

If you are adamant about spreading awareness about the other sides/levels of autism then DO THAT! We need to show the public every single side that we can. Start a blog, write and submit articles to online publications – there are enough of them out there, ask to write a guest post…. do something other than admonishing people for their views and stories.

DO SOMETHING!

I choose to tell our story they way I choose to tell it. It is OUR story.

You have to be the one to tell your story.

There is room for everyone.

 

 

 

 

 

The Babe With the Power…. a Halloween Wrap-Up

babe-with-the-power

Back in September:

When DC and I picked out his costumes two weeks ago for this, my favorite holiday, I was a little bit disappointed.

Until… after the chosen costumes arrived of course, we came upon something so much better. I was not thrilled about the Santa and Elf he had chosen for us to wear on Halloween night (I know… not… about… me) so I was glad and he was excited to happen upon a fabulous replacement.

No worries. I knew that Santa and the Elf would not go to waste. There always seems to be an extra event or party that comes up that I did not plan for and fortunately this year there were two extra events that came up.

Once again, we had to man a fundraising table to support DC’s summer camp and like last year this table was located at a local miniature golf course that decorates for the month of October. Plain old miniature golf becomes Haunted Golf for the month. Like me, DC has no interest in playing miniature golf, but if he is going to sit at the table surrounded by Halloween, he is surely  going to wear a costume.

He was planning on wearing that “extra” Santa costume, but as it happened it had rained all day and it became so hot and humid that evening the Santa costume would have been really uncomfortable. I talked him into wearing the Elf instead. I told him that I had heard that there would be a costume dance hosted by his day/work program in a few weeks and if he wanted to attend, he could wear the Santa suit then. He agreed.

The Elf it was at Haunted Golf:

img_7155

 

He was not shy about ‘working’ those bells…

One “extra” costume down and moving on.

Two days later, DC attended his summer Camp Halloween party. He loves to see his camp friends during the off months. For this party, he chose a Wizard. Not just any Wizard, mind you… in his mind this was Merlin from the Sword and the Stone, a very old Disney movie. Now, you knew there HAD to be at least one choice somehow related to Disney. There is no getting around that.

img_7153

Later, he did mention that he was not only the Wizard from The Sword and the Stone but also Snow White’s father. I have no recollection as to just what Snow White’s father looks like, so I will have to take his word on that one.

His work dance was coming up and I asked him more than once if he was sure he wanted to go. He said he did. DC is always up for a dance. He loves to dance, but the dances given by his day/work program are usually not anywhere on his list of things he wants to do. The very first time DC used the word ‘boring’ was to describe one of these dances and the only time he has used that word since is anytime that I ask him if he wants to go to the monthly dance. If you are wondering if he is using this new word correctly…. yes, he is. They are boring – very much so. But, it is almost always an entirely different story when costumes are involved, so he agreed to go.

Well, he lasted 45 minutes. The eating of pizza took only 5 minutes so the other 40 minutes were spent wandering over to me and telling me “Mom! I’m boring!” I thought if he would just get dancing he would have some fun, but every single time he DID start dancing, the DJ cut the song off and then there was nothing but silence for a good long time. The DJ started playing Ghost Busters (one of the few danceable songs he played) at least three times and stopped it right in the middle every single time. I really don’t know if he ever made it through that song.

santa-pizza

He wanted to wear the Santa suit and he did – albeit for a total of an hour and a half (including drive time) but that seemed just fine with him. He got to wear it and that was all that mattered.

santa-and-salli

Second ‘extra’ costume, used ….Mission accomplished.

One of his favorite parties every season is the Best Buddies Halloween party. Other than the grand finale on Halloween night, he seems to look forward to the Best Buddies party the most. For this he chose the Mad Hatter. He has been both the Disney and the Johnny ‘Deep’ (DC-speak) versions of the Mad Hatter in years past and to be quite honest with you, I do not know where this particular version of the Mad Hatter comes from. He owns  so many obscure versions of Alice in Wonderland  – it could be from one of those or it could be from the new movie, Through the Looking Glass. I have no idea, but the “Dark Mad Hatter”, which was the only description I could find was his pick. As long as he seems to know what movie or book it comes from, I don’t have to.

dark-mad-hatter

best-buddies

Finally we have reached the end of the road, um… the end of the Labyrinth – Halloween! Once the costume was on he spent a good amount of his evening looking at himself in every reflective surface he came across! I think this one will go down in history as one of his favorites.

Introducing……

Jareth the Goblin King!

jareth

Of course we had to have a Baby Toby (that would be me)!

jareth-and-toby

Did anyone know who we were supposed to be? Maybe not. Most of the time that seems to be the case anyway, but we do not care about that. We know who we are supposed to be and we have a great time making everyone wonder (I do anyway). Last year there was only one person on the Trick-or-Treat route that knew he was Doctor Who and I was the TARDIS (yes really!). So I don’t think it’s us. I think it’s the neighborhood. We must have taken a wrong turn somewhere along the way through the Labyrinth.

Hope you all had a Happy Halloween!

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Yes Fezzes are still cool

My final Halloween 2015 re-run for the season (Re-run, I said. There will be a 2016 wrap-up after Halloween).

 

“Fezzes are cool”

Fezzes are cool

(The last Halloween post for 2015 – I promise. It’s a Halloween wrap, one could say.  This post is not as long as it appears to be – there are a good number of pictures because, you know…. it’s Halloween and I have no restraint)

As costumes go, this year was really not all that difficult.

  • He chose costumes that actually existed.
  • We were able to find all of his requests in his size.
  • The two that I did have to buy in pieces to make up the costumes were not all that difficult to put together because the pieces actually exist.

It was a relatively easy year.

Yes, we had the whole “Jim Dear” bump in the road but luckily and unexpectedly it worked out  so – Jim Dear will be counted and included in his “costume parade” this year and of course included in his annual Halloween book that he receives for Christmas each year.

Various 207

– We do take this holiday very seriously.

We may be a little bit over the top, but he loves it and I am perfectly happy to encourage and go with it!

Onward….. his first second choice – the costume that he wore to his Work/Day Program Halloween Dance and the reason (well partially the reason) he was so excited when I brought out that nightmarish pair of glass slippers….

Prince Charming – the REAL Costume this time.

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He even had the opportunity to escort a real princess to the dance. We were not allowed to call her a princess, she is the “Zombie Prom QUEEN!” But to DC, she was a princess – just don’t tell *Salli. Her costume must and should always be identified properly using the official name. Never a Princess!

A few days later we were going to the Haunted Miniature Golf Course to work at a table to support DC’s summer camp. Wearing a costume was not something I had thought about, believe it or not. When I realized the day before I ventured into my costume closet to see if there was something in there for him to wear at the last minute.

The Costume Closet: Let’s talk about the costume closet. DC and I live in a very small duplex. There is no storage and really nowhere to put anything, but still I have an entire closet devoted to Halloween Costumes (Priorities, people!). This closet is beyond ridiculous. I really can not find anything. I don’t even know everything that is in there at this point, but I was hopeful. The other issue with pulling out an old costume is that many of them will not fit him any longer. DC is a big boy.

I saw something with a black cape. I was able to get at it without the rest of the closet caving in on me. It was a Jack the Ripper costume. The only reason that I can think of for having a Jack the Ripper costume is that I must have thought I could use all or part of it for one of DC’s requests for a costume that did not exist. I don’t recall ever using it though. It had a black vest, a black cape and a top hat. It was trimmed in red. I showed it to him and asked if he would like to wear it to the golf course. I got an emphatic “Yes”. The boy just loves a cape. We tried it on. I was worried about the vest but it fit – PHEW. He went to look at himself in the mirror.

I asked: “DC who are you?”

“Captain Von Trapp”

????!!!!?????

I have no idea why he thought he looked like Captain Von Trapp unless there is some obscure scene in the Sound of Music where either Christopher Plummer or Stephen Moyer is wearing a cape. If DC thinks so, then there probably is.

Only because I was still a bit confused about the Captain Von Trapp thing, I asked him again who he thought he looked like. This time the answer was “Doc Terminus” (Jim Dale from Pete’s Dragon for those of you that have not seen every Disney movie ever made). That actually made perfect sense. He did look like him, more than he looked like Captain Von Trapp, anyway.

IMG_1648Of course we did have a mustache on hand to complete the look.

We were scheduled to man the table a second day and fortunately I did not have to venture into the dreaded closet again. I remembered his Grease garb from a Grease Sing-A-Long that we attended a few years ago that was hanging in his own closet – SCORE!  It had a jacket which was perfect as it can get mighty cold out there and there is nothing worse than having to wear a coat or jacket over one’s Halloween costume.

Nothing… Seriously… Look it up..it is just not done!

The second best part was that it was easy and recognizable……

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except that everyone called him “Elvis” – everyone.

His camp party came just two days after the golf course. His choice……. “Hook” but not the Disney Captain Hook (yay!)- Captain Hook from the television show “Once Upon a Time” (yay, again). I was happy with this choice. It is a popular character on a current TV show. Other than the Big Bang Theory last year, he really never chooses or has any interest in anything current, so usually No One Knows What He Is Supposed To Be. 

HookPirates UNITE!

He even ran into another pirate at the party.

Fortunately no swords were drawn – it was all very amicable.

Moving on to my very favorite costume of the season!  This one for the Best Buddies Halloween party.

Dr. Who – the 10th Dr.! (DC’s favorite DR (mine as well)  and the greatest challenge of the season – David Tennant’s hair.

  • Two ruined wigs
  • DC loosing his stuff over the hair clippings – everywhere.
  • DC loosing his stuff over the hair glue (extra strength mouse, but I really think it IS glue) everywhere.

I finally had to give it up or the costume that he was so excited about would turn into something he did not want to wear or hear about – ever again. I think we still made the point even with the rather ridiculous hairdo.

bb halloween 008

One could truly say the was “The Madman with a box.”

DC and his Best Buddy

DC and his Best Buddy

Traveling in his “Big” (very, very big) Blue Box through space and time to somewhere in New England – coordinates set for October 31, 2015 and regeneration complete…….

comes…….The 11th Doctor.

Fezzes are very cool

Although David Tennant, the 10th Dr. is DC’s favorite – He would not pass up the opportunity to wear a FEZ.

But seriously……Who could??

“Fezzes are cool”

Happy Halloween!