Are We Defending or Unwittingly Keeping It Front and Center?

 

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I agree 100% and wholeheartedly that children – ALL children should be off limits.  No matter who/what you support or do not support; their children should be left alone. They should not become fodder for the press or the general public.

I was happy to read that a television writer may have been fired (or at least suspended) for her tweet and very glad to see so many people letting go of their political views to come to his defense. This is a topic that we should all be able to agree and come together over.

But I worry that in our rush to defend, all we are doing is keeping the stories in the public eye long after they would have died down on their own? Sharing news stories over and over again with his name in the title and likeness as the lead, in my mind is not helping, it is rehashing the issue in the name of defending him and bringing all of the unsavory information back up for all to read – using his name like a banner.

I get that we all want to defend the things that have been said and intimated about him. I do as well.

I do not think we need to keep using his name and his photo to make our point.

I do not.

Children should be off limits. Children should not be speculated about.  Yes, we should be defending him. I do not think we need to use his name or his likeness to do that.

I just don’t….

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2016 Top 5 Posts, #1 – “Mom, do you love meeee?”

I am happy that the following came in at Number 1 in 2016; it is one of my favorites.

We still have the same conversations and he still says it exactly same way. I will surely never correct him and I hope that no one else will either…..

“Mom, do you love meeee?”

I love you Magly

From the time that I was old enough to think about it, I always promised myself that if I were ever to have children that there would never be a second in their lives that they would not know that they are loved. This would never be something that they would have to wonder about – not for a single moment…

I think I have lived up to that promise to myself.

DC can and does tell me that he loves me many times a day – complete with and accompanied by the “I love you sign”. I know that he understands in his own way, what that means. This is not to say that I believe it is always all about me. Much of the time it is, but there are times when he just needs to have something to say. It is kind of a comfort thing for him. He says it over and over again when he is in an uncomfortable situation or a place that is new to him.

But, back to me….

I especially love it when he, at 25 reverts back to “I love you Mommy” instead of Mom, Mother or Vickie.  He is probably one of the most lovable people around and I am willing to take complete credit for that.

Is it just learned behavior and not real emotion?

Is it comparable to the times that I have to make a rule because I know he does not understand something?

Is he just, in his mind, following another rule?

Is he just going through the motions because that is what he thinks he should be doing or how he should be acting?

I used to wonder about that when he was younger but now I am convinced that although I am sure that some of that lovability was originally something that he learned, it IS also very full of emotion.

All of the above does not mean that he does not hear his fair share of yelling because let’s face it, every behavior can not be blamed on his autism.

When these situations arise and he is “in trouble” and after I start finding his apology notes everywhere – we always sit down and have a talk.

“No matter how upset Mom might get when you do something you are not supposed to… I always love you. When you are in trouble, I always love you. You never ever have to worry about that.”

When he is “in trouble” and we have not had the talk in what he thinks is a timely manner, he will come to me and say “Always ‘loves’ you.” He knows it, but he needs to have the talk. It’s a ritual and it is comforting to him.

DC’s ongoing “I Love you” campaign has evolved recently. While all of the above still holds true, he has added, ” Mom, do you love me?” (in his high pitched squeaky voice with the emphasis on the “me”).  I know he is not questioning the fact. I know he knows this and I know that he just wants to hear it again. I also know that this line must be something he picked up from a book or a movie because he is using the correct pronouns.

Just to change it up a bit, my response to this question is: “I love you madly”.

Just to change it up a bit more, I will ask: “DC, do you love me?”

His response is another in the long list of words/phrases that he uses that I know I should correct speech-wise, but I do not because I love the way he says them. I hope that this response never changes.

Mom, I love you ‘Magly’.

No corrections necessary……….

2016 Top 5 Posts, #2 1/2 – But does he know……

The following post was not written in 2016. It was written two years ago. I am including it as part of my “Top 5 Week” because it actually received more views this year than it did when it was originally posted. I also have a post banging around in my head that runs along this line, so I decided to give it it’s rightful place in the line up.

Two years later; I still really do not know…..

But does he know……

Lost in thought NY

I’ve been asked quite a few times –  twice just this past week, if I have ever told DC that he has autism and if so how did I approach the subject. Most of the questions came from mothers with children that are just beginning to or do already realize that they are different from their classmates and friends.

To be perfectly honest, I really do not think that DC is aware that he is different – I do not know if this is a good thing – at the moment I am going with – yes, but I really do not think he sees any differences between himself and other ‘men’ his age, or anyone for that matter. I really do not believe age is a factor in anything he thinks about or notices. I don’t think age means anything to him at all.

That being said, it is never perfectly clear just what he might understand and what he does not. I really do not know what goes on in his head at times. I Know that just because he doesn’t seem to notice or understand, does not always mean that he doesn’t. Going on the small chance that he may actually know that he is different… yes, I have told him. I have told him many times, since he was very young.

We don’t have “sit down and talk about it” sessions because he becomes overwhelmed with too much information. He needs examples, he needs to see something. We also can not  talk about it too often – when we talk about anything too often, it makes him anxious – he thinks something is wrong.  I never want to give him the impression that anything is ‘wrong’ with him. He doesn’t need that.

I have to take the opportunities when they come. Because he is very visual, I try to approach the subject when we are watching TV or reading something that happens to have a character with Autism. The first time I brought it up to him, we were watching TV.

I remember starting out by pointing out the character.

“DC, do you see that boy?”

“yes”

“He has autism. Do you know that you have autism too”

“yes” (he answers “yes” to just about everything)

“Do you see the way he flaps his arms? Who else does that?”

“You” (pronoun confusion – ‘you’ instead of ‘me’)

“Autism means you and the boy may think about things a little bit differently than Mom and some of your friends. Can you say ‘Autism’?”

“Autism” (usually I can type his pronunciations, but I can not type his pronunciation of the word Autism)

We’ve gone through this scenario many times – arms flapping – loud noises – whatever happens to be going on with a character or story.

We talk about it when we participate in an Autism Walk or fundraiser. We talk about which of his friends have autism. I can not get into too much into detail with him, I just point things out as they come up – a character, a fundraiser, his friends….

I point it out to him when he is watching his sign language sing-a-long DVD’s. I explain to him that his autism made it harder for him to speak at first (he was non-verbal until he was 7), this is why he went to speech therapy with Liza for so many years.

He was always very happy to see Liza every week. He worked hard.

(He LOVES Liza)

Before he learned to speak, he used sign-language.

He was always happy to see Sandi for sign. He worked hard with her as well.

(He LOVES Sandi)

Speech therapy and sign language were “good” things in his mind – fun time. This can be directly attributed to the insight and resourcefulness of both Liza and Sandi and the way they choose to make the process fun by working from his interests and incorporating them into his sessions. I am 100% sure that Liza can recite the “Wizard of Oz”, in every variation to this day. They made him happy.

We’ve discussed* it many, many times over the years and in many different ways, but for a boy who remembers everything, he can not give me the word “Autism” at any other time.  Unless I ask him to repeat it for me, he does not seem to even remember ever hearing the word. This just strengthens my belief that he really does not understand any of it. He does not know that he’s different and for now, that is fine with me. My goal here is not to make him feel that he is different.

So why do I continue to talk about it?

On the chance that he does recognize this now or later on, I don’t want him to wonder and not be able to communicate the question to me. This isn’t the sort of question he would ever be able to communicate.

And though I am relatively sure he does not understand, it is possible one day he may understand, or partially understand, but over and above all of that, if he were to hear “Autism” or “Autistic” elsewhere I want to be sure he doesn’t think it something that is “bad” or “wrong with him”.

I don’t and will not harp on it – I don’t feel the need to have those long heart – to – heart flowery discussions about it. He is happy, he knows he is loved. I will continue to mention it from time to time when the occasion arises, just so the word is recognizable to him and just in case he should ever wonder. If there comes a time when it seems that he might need to know more then I will try to explain it a little more in-depth or try to come up with a different way to explain it to him. For now, he seems to be just fine knowing what he knows and that is really all I want.

I wish I had a better answer for the people who asked…

Have I told him?  – Yes.

But does he ‘know’?

I may never know for sure….

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.”

 

 

 

 

 

 

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?

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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!