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…..

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 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….

Posted by TakingItAStepAtATime

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….

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, Dud Gramley 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), Dud 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, Dud? 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

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

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..

Posted by TakingItAStepAtATime

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

Posted by TakingItAStepAtATime

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….

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

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?

Posted by TakingItAStepAtATime

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.

Yes Fezzes are still cool

Posted by TakingItAStepAtATime

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”

(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.

– 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.

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.

Of 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……

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.

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.

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

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.

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!

Social Security, Adult Children, Lessons Learned and a Heads Up

Posted by TakingItAStepAtATime

If you follow my Facebook page at all, you may have seen the status below. I wrote it out of aggravation but mostly because it was something that I unknowingly did (or didn’t do) that I wanted to share it in the hopes of keeping someone from making the same mistake.

If you did read the status earlier, do not stop here. There is more to the story and it only gets worse, so please read on…

Before I get to that I want to say that I always did everything for DC ahead of time. I never waited until the last minute for anything. I wanted everything in place for the time when I was no longer around to look after him. When you are a single parent of a child with no siblings and you begin to get older, this moves to the forefront of your mind. If you have followed this blog for any length of time, you know that this something that completely occupies my mind.

Here is the beginning of the story. The account in question as it turns out, had a cash out value of $2600.00. Owning the account in question was technically my fault, not for lack of doing my due diligence but more for the lack of not receiving the correct information from people who were supposed to know. But really, even if this was something that I had not checked into or something that I had forgotten about, this was a mistake – a plain and simple mistake.

We had our annual Social Security assessment the other day.
I may be the most unorganized person in the world, but not when it comes to my child. I go out of my way to make sure everything is done on time and properly. 12 years ago we had the paperwork drawn up for his “Special Needs” Trust – that will be funded with a “second to die” policy. I made sure NOTHING was in his name. I made sure that everyone knew not to buy him savings bonds or leave money to him in their will. When DC turned 18, we had to apply for SS in order to apply for Title 19, in order to keep our DDS (Department of Developmental Services) caseworker and DDS funding for his work program and for future placement when I (and his Dad) am gone as he will most likely be living in a group home because there is no one else.

Years ago through my job, I purchased a life insurance policy for myself. It was one of those policies that they offer at a very low premium that never increases even if you leave the employer that you purchased it through. DC was an infant at the time.

They also talked me into a policy for DC. When they first brought it up, I though it was odd. Why would anyone buy a policy on their child?

It was explained to me that the benefit of buying it then and at an even smaller premium than my own was that when he turned 18, I could turn it over to him. It would be his policy to do with what he wished. He could cash it out for the cash value or he could keep it as his own life insurance at the same premium. He was an infant at the time so of course I did not know that when he was 18 he would not be able to understand money, hold a regular job, tell time or even understand what a life insurance policy is.

Because he does not understand any of this I never transferred it over to him. The premiums were paid electronically all of these years from my checking account and the premiums were combined with mine and so small that I really just didn’t pay attention any more – I really just forgot about it. I would get a statement once a year, but other than that, it was not anything that was on my mind. I had at one time planned on closing it since, not having transferred it over to him made it of no benefit to him, but since it was not his account and there was no urgency to close it, I just let it go. I was involved with so much other paperwork at the time, this was the last thing on my mind.

I DID mention this account to anyone and everyone that asked, the attorney who did our trust, and SS when we had our re-determinations. The only reasons I would not have mentioned it every single time were, 1. it didn’t happen to be a question they asked at that particular time or 2. because I had been told that since I did not turn it over to him, he had absolutely no rights to the account. I was the owner, it was not his account.

For some reason during our last re-determination this policy became an issue. Again, as I never turned it over to him, I am the account owner. If he were capable of understanding what a policy is and said “Oh let me cash this out.” he would not be able to do so because I am the owner of the account. No one could do anything with this policy but me. But, because it exists, and he is the insured even though he does not own or will ever benefit from the account and could not access the cash out value or even be given any information about the account due to privacy laws – I was told that his benefits would be suspended until I could get the account closed, spend the money and prove I had spent it on him. Which is fine, I could do that, but these things are what my nightmares are made of. I am glad this happened while I am alive to fix it, but what if it happened later when it accumulated even more money?

I did just that. I closed the account, spent the money on things that he would be needing anyway. I sent all of the information to the Social Security office and I hoped that because I got the account closed and the money spent before the deadline his benefits would not be interrupted.

Well, I received a letter yesterday with the the results of the review. The good news is that his benefits will not be suspended because I was able to close the account and spend the money.

The bad news?

Because he had over 2000.00 in resources (that could not be withdrawn or accessed by him <I am going to keep saying that>, in an account that was not his and he was not the owner of) we have to pay back 12,000.00 – I’ll spell that out for you – Twelve Thousand Dollars – in benefits that he received between his last re-determination (May 2015) and this current re-determination in September 2016. Because he had 600.00 too much during that time period, he should not have been able to collect Social Security benefits and it has to be paid back.

My choices are – Write a check for 12,000.00 (they want it all in one lump sum, not in payments) or they will deduct 73.00 from his monthly checks. He will be paying this back for 13 years!

Listen, I am one for following the rules – always and for everything – I admit that I can be a little bit obsessive about it at times and I fully admit that this was my fault, an honest mistake. I was not keeping it a secret – if I had, they would not have known about it. I was sure there would be some sort of penalty to pay and being that this was my mistake, I was perfectly willing to pay it to keep his benefits in place so I do not have to worry about him later.

It is unfortunate that this system we have for people with disabilities is set up so these people (our children) are required to live in poverty. It is designed that way. I understand that in order to maintain this level of poverty recipients can not have over $2000.00 at any given time. People make mistakes, honest mistakes. We as parents should not have to live in fear that we may have over-looked something or that a family member might leave our children money against our wishes and without our knowledge, make them a beneficiary on a life insurance policy or in this case, have an account that was supposed to be fine because HE WAS NOT THE OWNER and had no rights to the account – and so many other scenarios that I can’t even come up with now that are out of our control (Give me a few days to obsess about what else can happen and I am sure I can add to that list of “what if’s”). I agree that there should be consequences and penalties for errors. I don’t believe that my child who was not responsible for any of this should be made to pay back 12K in Social Security benefits for the next 13 years. I would have been perfectly willing to transfer that $2600.00 from the account (that he had no rights to and could not access) directly to Social Security.

Although I do believe in following the rules and owning up to my mistakes, twelve thousand dollars for a 600.00 dollar mistake seems a bit extreme.

So the moral to this story is:

If you believe you are being careful and following every rule, you may find out otherwise.

If you’ve done your due diligence and looked into anything that may be a problem, you probably need to look further.

If you have a question about anything you or your child have and even if you are told that it is fine – it may not be fine after all.

I am sure that this will not be the end of the story but I just wanted to share it to possibly save someone else from making the same mistake.

***

My apologies if this is littered with typos or half sentences – anger does not enhance my already poor proofreading skills in the least…

****

Follow Up!

But Wait! There’s More!

There’s Still More (and I was right all along)

Small Battle – Small Victory

Posted by TakingItAStepAtATime

From my October/Halloween 2015 Archives and as I discovered this week…. a small victory:

Choosing my battles……..

We went away this weekend to NYC and Sleepy Hollow. We try to take a Halloween Weekend every year to somewhere either “Halloweenish”, Spooky, Historical or where costumes are involved. We will be going to a ComicCon the weekend after Halloween (that counts) so we decided to do just a quick overnight to Sleepy Hollow this weekend. Our usual Halloween destination is Salem MA, but we’ve switched it up the past couple of years mainly due to the fact that Doug is <insert colorful metaphors> of going to Salem – I, on the other hand, never tire of it.

We had already done a weekend in Sleepy Hollow a couple of years back. We did just about everything there was to do with the exception of the BLAZE. I did not know that in order to do anything in Sleepy Hollow in October, tickets must be purchased on-line ahead of time. Fortunately, once I discovered this and by the skin if my teeth, I was able to get tickets for everything else.

This year we thought ahead and got tickets for the BLAZE early. Since that was all we were going to do in Sleepy Hollow, we decided to first spend the day in New York City (DC’s favorite place), check into our room in Sleepy Hollow and go to the BLAZE at 9:30 PM (the only time available when we purchased the tickets).

I had not been feeling well all week and would have opted to skip the whole thing and stay home on the couch, but DC had already been told about the trip and he already added it to the calendar so that meant it was engraved in stone.

Knowing his propensity to over-pack DVD’s for the sole purpose of stacking them next to him while he watches YouTube on his computer, and knowing full well there would be a visit to a bookstore at some point during the trip, I told him that he could only bring 5 DVD’s and 2 books. I said it more than once. I just didn’t want to have to keep track of a bunch of unnecessary stuff and try to carry a bunch of unnecessary stuff. I just wanted to pack light and get this over with. (I did forget my jacket in the room, so I really couldn’t manage to keep track of the necessary stuff – turns out, they don’t ship forgotten things. We have to go back and get it).

5 DVD’s and 2 books.

“Okay Mom!”

He went about packing his laptop, his DVD’s, his books, and pens to edit said books.

“DC, how many DVD’s did you pack?”

“5 DVD’s – 2 books”

“Are you sure?”

“Yes, I promise”

When I went to grab the charger for his phone, I found that he already packed that as well. I found THAT to be a bit impressive. He is usually only concerned with his books, DVD’s and laptop.

I told him how proud I was that he remembered his charger by himself. He took that compliment and added that “I am proud of the 5 DVD’s and 2 books” – he was just pointing out the fact that I forgot to tell him in that sentence that I was proud that he followed the rules.

We spent the day in New York City. We visited all of his favorite places and headed out for Sleepy Hollow about 3 pm. All I wanted to do was sleep for a little while before dinner and the Blaze. In the room I was just telling Doug what a great job DC did packing only what I told him to and remembering his charger, when I noticed a good 15 to 20 DVD’s sitting next to his laptop. Now, this has been an issue before and the celebration over him being sneaky and figuring out that he could just hide them is long over with. I do have to give him props for figuring out if he packed his own charger there would be no reason for me to go into his backpack (a new level of sneakiness), but like Tonya in ‘All the …..small things’, I have to be the mother, even though I knew full well what would be in store for me after reprimanding him.

As soon as he realized that I noticed just how many DVD’s he had with him, it started…..

“I am sorry Mom. I will never lie again!”

“I am so sorry, Mother!”

DC only gets to use his laptop and DVDs on the weekends. That has been the rule for many years. Losing his computer privileges is the only thing that EVER makes any kind of impression on him.

“DC, you lied to me again. I told you the last time you lied to me that you only had one more chance before your lost your computer for the weekend. This was your last chance, so no computer for the weekend.”

(Seriously, as punishments go, this is really not much of one. It was all ready Saturday night. We would be going out soon and we were leaving the hotel the next morning, but this did not matter to him).

Now, 2 inches from my face……

“I promise to never tell a lie again”

“Mom, I’m sorry!” – those of you that know DC, you know that:

He is sorry for absolutely everything! Partially he believes “I’m sorry” will get him out of anything. Like a typical man, he thinks that saying “I’m sorry” even if he doesn’t know what he’s sorry about will get him out of anything or at least get me to stop talking. If he really wants to bring it home, he goes to: “I’m ‘ter-bly’ sorry” or “I am soooooo sorry”. He’ll even throw in a “Can you ever forgive me?” (movie line), if he thinks it’s necessary.

He says he’s sorry, WHILE he’s doing something he shouldn’t, and will continue right on doing whatever it is because he’s covered, he already said he was sorry. Or he’ll say he’s sorry when he’s about to do something he knows he’s not supposed to do. He’s covered, he said he was sorry!

I heard this and variations of this throughout the evening all recited 2 inches from my face. I won’t go into the amount of times I explained to him that just because he promises not to do it again does not get him out of the punishment he was already given. I understood that he was sorry and I was proud of him for being sorry…… believe me, it was covered and covered.

*****

We did enjoy the Blaze –

but every few minutes he reverted back into his “I’m sorry” campaign.

Back in the room, he changed his tactic.

“Mom, thank you for much for the trip”

“Mom, thank you so much for the dolls”

“Mom, you are my queen.”

“I love you Mademoiselle”

“I am being so good!”

I did explain to him as I always do that I never would think or say that he was “bad” – he is not bad; he just did something wrong – on purpose.

We went to sleep (remember, I am still not feeling well). 4 or 5 times during the night, I woke up to find this boy 3 inches from my face telling me that he has “Good Behavior” and “I promise never to lie again”

There are times when DC really does not understand what he has done wrong and I will speak with him and try to get him to understand – this was not one of those times. He knew exactly what he was doing while he was doing it. I can not just let everything go, even though at this point I really wanted to get some sleep. If I gave in now he’d know that I would give in the next time.

Morning came.

He hadn’t packed any paper to bring on the trip so he resorted to writing me apology notes on the inside of his books.

As many times as he brought it up, there was an explanation for him. I love him, I always love him. I was not happy with the choice that he made to lie and sneak but I am not angry at him. If he does not do it again he would not lose his computer again.

We left the hotel, looked around Sleepy Hollow a bit, had lunch and headed home.

Monday was a holiday but the weekend was over, which meant his punishment was over. It also meant that he could not use his computer anyway because the weekend was over. He double checked the end of punishment fact with me and was extremely happy to hear that he was correct in his assumption. We were home all day on Monday and he was quite happy not to use his computer, because Monday is not “the weekend”. But he knew it was ON for the following Friday and I never heard another word about it.

(He understands the word “punishment” from Full House. I originally never used that word – that was all him)

Update October 2016:

We just returned from a non-Halloween themed trip to Nova Scotia and New Brunswick. I am happy to report that DC, with out being reminded more than once, did stick to the “5 DVD” rule.

And as a Mom who just loves Halloween, I was very proud of his choices:

That’s my boy!

********************

#TravelingWithDC – New Brunswick and Nova Scotia

You are now entering #Haven – A place to leave your ‘troubles’ behind

Good thing I did not return that “Jim Dear” hat…

Posted by TakingItAStepAtATime

The second in my Halloween 2015 re-run posts. We know that he had asked to be “Jim Dear” from Lady and the Tramp for years and this was the year I found all of those wonderful steam punk suits that would do very well as a Jim Dear costume and I already had the hat. I was excited thinking about how excited he would be and…… he said no!

This follow-up post was all about the way he decided, on his own to make use of the hat.

“No Jim Dear”…. (shhhh… it just may be)

In an earlier post I wrote about the “Jim Dear” derby hat and how after many years of asking to be “Jim Dear” for Halloween, he decided against it – after I had purchased the hat and picked out a few steampunk suit options to surprise him.

Last night we attended the 50th Anniversary Gala for the summer camp that DC attends. DC loves to wear a suit so he was all for it.
After running up the stairs a good 3 to 4 times to “look in the mirror” and admire his handsome self – he came down wearing the “Jim Dear” Hat!

hmmmm…

He ran back up to look in the mirror a few more times and returned with a moustache request. Much like his beloved Band-Aids, stick-on moustaches are another staple in our household.

I tried to talk him out of it but he insisted.

hmmmmm..

All-righty then, the moustache, it is! I was hoping that he would decide to take it off before we arrived at the party.

He did not.

He wore it a good long time. He received many compliments on his moustache and was very happy with the attention. When we were still at home, he would not tell me who he was supposed to be but as soon as someone at the party asked him if his name was Charlie (Chaplin); he promptly corrected them “No, Jim Dear!”

with Grandma

He did eventually take it off when it started to get itchy more than halfway through the event.

It is October.

He wore the hat.

He added the moustache.

Jim Dear?……………..Yes, this year.

I guess it just had to be his idea.

Good enough for me.

I will take it!

Jump Magic, Jump!

Posted by TakingItAStepAtATime

I have tried for many years to get DC to watch the movie Labyrinth. I always loved it and I just thought that he would too.

Of course he would! How could he not just love it as much as I do?

He didn’t…..

Not one bit….

This has worked a few times over the years… Shrek, not being Disney, was one that he absolutely refused to watch but now he has every sequel and every book – he chose Shrek as his costume a few years ago as well. It works sometimes, but it just was not working with Labyrinth.

He was never a big fan of the the Muppets until the movie with Amy Adams and Jason Sigel came along, but when David Bowie passed away, I decided I would give it one more try.

He watched it – the whole thing. He didn’t fall asleep – his usual escape when I try to get him to watch something that I like – he watched and seemed interested.

I did not realize right away how much he liked it until days later when he was on his iPad trying to search for “Lay-miff”. I had no idea what he was looking/asking for – usually I can get him to spell or sign what I don’t understand but he wouldn’t spell it for me and he was getting frustrated that I didn’t know. This usually leads to him giving up and saying “Nothing wrong” and then I never figure out what he was trying to tell me. So I do really try hard to figure it out before he gets to that point.

“Lay-miff”

DC, can you spell it?

“Lay-miff! Baby! It’s not fair!”

(So I should have gotten the “It’s not fair”, but thought he was telling me it wasn’t fair that I couldn’t understand him)

“Sarah! Baby, Lay-miff!”

“MAGIC JUMP!!!!”

Got it! Finally……

He’s seen it many times since and of course found quite a few YouTube clips to watch over and over and over again, boosting someone’s YouTube numbers to viral status I’m sure.

When DC and I picked out his costumes two weeks ago for this, my favorite holiday, I was a little bit disappointed. It was too easy, there were none of the regular “Only in DC’s head” costume choices that..

no one would know who he is and
do not exist, which means that I would have to try to make up and build from whatever I could find.

But as I always say, this is not about me. Not all about me, anyway.

There are the individual costumes for the parties he will attend, but there is also the “annual themed costume” for Halloween night.

His first choice was a pretty funny Tooth Fairy with me as the giant tooth – giant being the operative word as it has been a rough year and a half which led to me gaining a ridiculous amount of weight. Last year he was The Doctor and I was a giant TARDIS. The year before we were Lizard/Spock, as in “Rock, Paper, Scissors” (no, nobody got it, but I cracked myself up as giant Spock). I never thought there would come a time when I would long for the days when I was only “Slightly large – Inigo Montoya” to his Fezzik or “Not so large – Dr. Horrible” to his Captain Hammer.

Memories…sigh…..

The tooth fairy idea came of course from the movie Tooth Fairy with The Rock as the tooth fairy. Right before we placed the order, he changed his mind and decided that he wanted to be Santa. This of course meant that I would be the giant elf. I liked the tooth fairy/tooth idea more, but Santa was his final decision so that was that.

Last week while making a scheduled and promised visit to the book store, I noticed a Spirit Halloween store had opened up right next door. Our costumes had already been ordered and delivered, but we went in – because, well…. I had to. It was there.

As we were walking around looking at all of the costumes and decorations, we happened upon a costume that made both of us gasp at the same time – The Goblin King from Labyrinth! Why hadn’t I thought of that before? There was almost no discussion – he wanted it! There was only one and it just barely fit him, but I think I can do something to loosen it up a bit.

This of course means I will have to be the giant baby, Toby – so there will ultimately be a little bit (very little – it should be an easy one) of building a costume that does not exist and that is fine. I am just happy that I am no longer required to be the giant elf.

No worries, though. I am sure neither Santa or Giant Elf will go to waste…

(Coincidentally, I picked this up for DC the day before the costume store visit at a Comic-Con I attended with my brother and at the time, the costume idea, just never entered my mind)