Quarantine Diaries Part 15 – High School Musical 2

We had a storm and lost power (more about that later in Part 16).

The power was restored but the WiFi was not.

DC, already on edge about the power going out, could not cope with the WiFi being out after everything was supposed to be back to “normal”.

My friend Peg mentioned that all they have been doing was watching DVDs and it occurred to me that – yes, DC could watch his DVDs in the living room.

It has been so long that he used the TV to watch his DVDs that I had forgotten that we did have a DVD player.

DC was not very excited about the prospect of watching his movies in the living room.

Not excited at all.

He begrudgingly got some of his DVDs out and started watching them, but I could see that he wasn’t comfortable.

Believe me, I have done my time watching his movies over and over again, complete with the rewinding of specific scenes and even specific words also over and over again.

I’ve gone to work humming or singing the Winnie the Pooh or other DC favorite movie songs because they had been drilled into my head for so long.

I have done my time.

About 7 or 8 years ago, DC got his first lap top. He actually won it in a raffle. Since then he uses only a laptop to watch his movies, which saves me from having to watch and listen to them.

(Again, I did my 22 years. I did my time.)

Seeing how uncomfortable he was watching in the living room, I told him that he could still watch his DVDs on his lap top, there just wouldn’t be any internet.

He tried but abandoned that quickly.

He has to be able to pull up YouTube clips or IMDB pages for the DVD he is watching. He couldn’t do that, which took the pleasure out of DVD watching on the laptop for him.

He finally resigned himself to the living room and after a while he did get used to it.

I, on the other hand had forgotten how unbearable it was to watch a movie with him rewinding and playing scenes in slow motion. But he was calm so it was a sacrifice worth making.

He started out just watching and rewinding.

He moved on to watching half, rewinding to the beginning, going to the kitchen to his spot to “Do the Writing” while listening to the half he just watched. Apparently the coffee table just doesn’t work for his “Princess Papers”.

Day Two of no internet:

DC: (yelling at random intervals) Oh! I wish I had the ‘inter-let’!
(Me too buddy. If I have to watch “Air Bud” one more time I WILL lose my mind.)

Every once in a while, he would switch from “Air Bud” to something else.

Today he chose High School Musical 2.

While he was watching, I was folding laundry, scrolling, reading and not really aware of how much I was paying attention to the movie.

When he went to switch movies before the end (something he does all of the time), I yelled louder than I meant to:

Hey! I wanted to see how it ends! Put it back!

Sigh…

This is what I’ve come to.

It’s been a LONG week.

*****

Quarantine Diaries – All

Week One of The World Shutting Down

Posted by TakingItAStepAtATime

Please understand that I am in no way complaining about or making light of the situation, but his blog is about autism; my son’s autism and the way his mind works and deals with things and that is just what I am going to write about.

The first hurdle was my birthday (Friday the 13th). Restaurants, stores and just about everything else were still open but I did not feel comfortable taking him “out to eat”.

As you know, my birthday is only important as a stepping stone to his birthday and as an opportunity to go out to a restaurant. He was very upset by this so we got his favorite foods and cake and celebrated at home. He was eventually all right with this – there was cake…

Overall, DC had a happy “Mom’s Birthday”. My day, on the other hand…

Friday the 13th sure lived up to it’s end of the deal …..
(sucky day… that is all)

The two boxes of Girl Scout cookies that came home with me after work yesterday…. gone.
#WhatCanIEatNext

Not going anywhere on my birthday lead to “a bit of” anxiety over his upcoming birthday. His birthday this year, was supposed to be spent in Pennsylvania for one of his Winter Guard shows. We were going to spend the weekend and do “DC stuff” (he always loves a hotel).

2019

DC was really looking forward to this show this year. We were going to stay over (nothing is better than a hotel and his “spot” at the desk for his computer and everything else) and make it his Birthday Weekend (the show was scheduled right on his birthday). Of all the things I had to tell him were cancelled, I think this was the toughest for him.

The small bright spot (for me, anyway) was that other people were cancelling all of these events and it wasn’t me keeping him from attending.

It is not my fault…..

DC is good about washing his hands before he eats and after using the restroom but he does not really understand why. It’s a rule. He does not understand germs (because he can’t see them) and keeping his hands away from his face.

He has gotten pretty good with all of the additional hand washing and fortunately I am here to remind him to keep his hands away from his face.

Because I don’t know what to call this so DC understands, I find myself calling what’s going on “The Sickness” so he understands that it’s more serious than a cold or the flu (and so he doesn’t blame me that everything is closed or cancelled). But every time I say it I feel as if I’m in some apocalyptic TV show…
The Phage?
The Pulse?

We have been going out for walks quite a bit.

Boredom Buster: This is how we walk with friends. Meet there. No handshaking, fist bumping or hugging and keeping a few feet of personal space between. We walked 3.1 CharityMiles for Special Olympics.

It was not until Tuesday when I had to go into the office, that he fell apart. He is having a hard time keeping track of things and the schedule keeps changing.

You know he was having a hard time when he completely missed St. Patrick’s Day!

He hasn’t mentioned St. Patrick’s Day at all this year; possibly due to our calendar having so many things crossed out that he didn’t notice? #HappyStPatricksDay

I began writing his schedule for the next day down for him the night before so he could relax and stop obsessing about it, but of course, things change and to him it was like I lied.

I was supposed to go into work again on Friday, but it was changed to Thursday – that threw him into another tailspin. (Also, I was supposed to have a Dr’s appointment and get my taxes done, both of which had to be cancelled due to the schedule change). The “writing things down” stopped working at this point.

His program finally closed officially yesterday – he hadn’t been going, but now I could tell him that THEY closed.

Not my fault.

The highlights of his week have been walking and grocery shopping. Explaining the shortage situation to him has not been easy but seeing the shelves empty did help him to understand it a little bit more – some of the time….

Some substitutions had to be made when grocery shopping…. Doug insisted that fake Cheerios are just as good as real Cheerios (we ALL know that is not true)
DC, this morning after trying them (he did try them, so I’ll give him that)
“Different Cheerios” and went to the kitchen to dump the bowl.
“Gross-nest” (DC-Speak – grossness?)
#StopHoardingCheerios

While we are on the subject, if any of you ever happen to meet or run into Doug, please let him know that Tootsie Rolls are not anyone’s idea as a substitute for chocolate. NOT EVER!

We were able to find the real Cheerios the following day. Phew!

We had to buy “rainbow carrots”. Let’s see how this goes..

Surprisingly, “Rainbow Carrots” went over just fine. It was one of those “trying new foods” situations when you put whatever it is in front of him and don’t make eye contact – You all know what I mean. NO EYE CONTACT!

The “Social Distancing” police was out in full force today. With umbrella in hand to point at offenders, I was drunk with power. We walked 3.0 Charity Miles for Special Olympics.

A good indication of just how bored DC is just being home every day is his willingness to walk in the rain. No complaining. No screeching “I’m getting all wet”. He was just happy to be out and also able to see his friend, BB – at a distance, of course.

DC heading out the door for a hike with Mrs. H.
Me: No hugging. Don’t touch benches or anything…
DC: And don’t get lost.
#ThatGoesWithOutSaying

Still, every once in a while the entire situation gets the better of him and it takes him a while to calm down again, but HE is coping much better that expected. I am really proud of him and I tell him so daily.

#ConversationsYouNeverThoughtYouWouldHave
Firstly: I don’t have a lot of room here, so I don’t buy things to have “just in case” – which put us at a disadvantage when the hoarding began. Secondly: I don’t buy alcohol unless I know we are having company or something, but this was a sucky week at home and ever suckier at work so I asked Doug to pick up some wine on his way over….
Doug started to open the wine for me..
Me: Wait! Wash your hands!
Doug: I was going to open the wine and then wash my hands.
Me: But I already sanitized the wine bottle and now I have to do it again!

Tomorrow is DC’s 29th Birthday (Twenty-Nineteen in DC speak). He has resigned himself to an at-home celebration and the promise of a birthday dinner out in one of his favorite restaurants after “the sickness” is over. I hope that is good enough for him. It makes me sad that he can’t have the birthday he wants. There is no one who loves their birthday as much as this guy.

Unfortunately this lead to the constant inquiry as to when the “Sickness will be all done.”. He wants a specific date to put on the calendar and I can’t give him that.

I wish I could.

***

Quarantine Diaries – all

The Little Things That Aren’t So Little

Posted by TakingItAStepAtATime

I know I have said in one post or another that there is always progress. Maybe not the progress he made when he was younger, but there is always something. It may be just a little thing but it is always cause for celebration.

Here is one:

Yesterday, DC attended his Camp Spring Picnic. He loves camp – you have heard that before if you have been around here long enough. Even though this is something he WANTS to do and even though he was so excited about it that I had to hear about it every hour it seemed, all week – there is still that “Arrival Anxiety” when he first arrives.

He did not skip that step yesterday.

You may have also read about DC’s phone skills or lack there of at times. DC can use the phone. He will call anyone THAT HE IS TOLD TO. He calls me every day when he is leaving his program (because he is supposed to) and the conversation rarely veers from the script he uses.

He will not use the phone spontaneously. This is something I really want him to understand. I want him to think to call me if something is wrong or if he happens to get lost or for any reason at all. I want it to occur to him if something goes wrong, that he should use his phone. I really am not sure that it would occur to him. I’ve gone over this many times, but as many times as he says he understands, I don’t think he does. He has never called anybody spontaneously, he has just about never asked to call anyone. After all this time, he still only uses the telephone when he is told to, to call me from his transportation and to call me when he gets home.

The Camp is closed up for the winter so the water was just turned back on in time for the picnic. Apparently something happened between the turning on of the water and the day of the picnic because when we arrived, the director was waiting for the repair man to come. There was no water. Not a big deal. There was bottled water to drink. There was also a BIG bottle of hand-sanitizer on the counter for hand washing purposes.

But….

I had to explain all of this to DC ahead of time. I did not want him to find out when he went to wash his hands in the restroom. I am sure his reaction would have been worse if he found out on his own, but the news did not go over as smoothly as I had hoped. He just wasn’t having it. The anxiety he was already having shot up a few notches.

He did not need water at the time and probably would not need water until he used the restroom, but just knowing that there was supposed to be water coming out of the faucets and it was not there was too much for him.

Something is supposed to be there and it is not – even if he doesn’t need it; it bothers him and he cannot shake it.

I took him outside so he could do whatever he had to do – flap, stim, run, yell – whatever he needed to do to calm down. He did all of “the above” and few more just for good measure but it did not seem to be helping. When he got back inside he started running to the faucets and turning them on. He went to the hand-santizer and used it – then he used it again – and again – and again. He was fixating on the hand-sanitzer because there was no water.

Finally he calmed down enough so I could leave to go for coffee with *Tonya, *Salli’s Mom.

You know… coffee without someone yelling “Mom, Mom! Excuse me, Mom!” throughout our conversation? Yeah, that.

Tonya was outside speaking with another parent, so we did not leave immediately after I left him in the Arts and Crafts building. At some point, he must have noticed that I was still outside and decided to come charging out to the driveway.

I understand that he was upset. I understand that he wanted to see me. I understand all of this, but running out of the building to the driveway is about his safety and I am NOT going to let that go.

I told him that he should NEVER leave the building without telling anyone where he was going. NEVER. He should not be running out near the driveway. It is dangerous.

NEVER!

I understand his issues with the water and the hand-sanitizer and how he was a having a hard time getting over it (once he does get over it; he is OVER it), but this was about safety. He needs to understand that it is dangerous. He cannot make a habit of leaving places (even if he sees me outside) without notifying the people in charge and he certainly cannot go running out close to possible traffic. Yes, it was a remote driveway, but there are no gray areas with DC.

He knew I was upset and started one of his apology tours. Fearing the loss of computer privileges for the weekend, he put that aside a little bit (although I was sure I would get the full package later) and went back inside without too much of an issue.

We finally made it to Dunkin Donuts and got our coffee.

As we were sitting there, my phone rang.

It was DC’s phone.

I panicked for a second, thinking something was wrong.

I answered.

“Hello Mom. I am sorry for ‘the’ running outside”

It was bothering him and he decided to call me.

He decided to call me.

No one told him to. No one suggested it to him (trust me, I checked with the director)

He decided to call me.

It occurred to him that he could call me.

He has really only done this once before.

Once could be a fluke, but twice is – I hope – him understanding that he can use the phone if he is having a problem.

I made sure I praised him up and down about it and reiterated that he can always call me at any time – when ever he wants to.

Believe it or not, that one little phone call made me feel like he is “getting it” which of course made me feel a whole lot better.

(and I received my first dandelion bouquet of the season)

Progress. It comes in the little things, but it is there.

***

Doug, who has witnessed many of DC’s never-ending, in my face every 10 minutes apology tours (see: Chosing My Battles) had a good laugh halfway though. He could imagine the apology tour, me finally getting to have coffee and thinking I was getting a short reprieve from the said “apology tour”, only to have the phone ring with “I’m Sorry Mom!”.

Honestly, I was so thrilled by the spontaneous use of the phone that this did not even occur to me.

First Day of “College”

Posted by TakingItAStepAtATime

I had already decided which old post I was going to re-post for Finish the Sentence Friday’s “Share an Old Post” when I came across this status in my Facebook memories from 8 (gulp) years ago and decided (being that it is so timely) I would share the post related to the “college” status instead.

From the “Everything is Related” series:

Everything is Related – Toy Story

– Everything being related, many times, is the ability to relate one movie or actor to another. This has helped him to be more open to watching something that may not be Disney-based. This was not always the case, but now he can go and enjoy a movie with his friends or at an ARC activity without issue……..

–Everything being related, oftentimes just explains his love for a particular city, game, song or some of the many other things that he does or says.

–Everything being related, has, many times been used as a learning tool. “

This post is about just that…

DC as Woody and Candy as Jessie from Toy Story – Halloween

Again we start at Disney. Disney, Disney, Disney anything Disney. When the first Toy Story came out way back when, I wasn’t sure DC would really go for it at all. Yes, it was Disney, but it was not the Disney he was used to. There were no princesses, no castles, no Haley Mills and most of all, no music. Of course I know that there was music, but not the “Hollywood musical” type of music – characters would not be belting out a song at the drop of a hat. DC was never a “toy” kind of kid. He never really liked or played with toys, so the toys in the movie were nothing that he would be familiar with. But, to my surprise, he loved it AND the two that came after. This boy who does not like toys actually owned a Woody, Buzz, Mr. Potato Head and a Jessie. No, he did not want to play with them, he just wanted to own them.

Tom Hanks brought him to “The Polar Express” and of course “Saving Mr. Banks” (also related to Mary Poppins).

Tim Allen…..Tim Allen….. he loves Tim Allen. That love brought him to “Jungle to Jungle”, all of the Santa Clause movies, “Christmas with the Kranks” and “Home Improvement” (yes, woo hoo, an actual TV show)…. but there is more…..

When DC was younger, transitioning into a new school was never easy, but it did seem to be easier on him than some of his other friends (and me). “School age” for Special Education here is 3-21 years of age. So there were many moves and many transitions during his time in the school system – kindergarten building to elementary, to middle school, to high school. The school handled these transitions very well. They started early with many tours of the new school, picture books with photos of the classroom and other areas of the school and a few visits (orientations) with parents. DC was always anxious about these moves but he always did rather well due to all of the work the school system and I put in to make the transitions go as smoothly as possible.

The number of children in SPED in DC’s age group seemed to be much larger than the kids moving up in previous years. This meant that the schools they were moving up to had a lot more students to accommodate at one time than ever before. We always joked that our kids always seemed to be the “test subjects” for these new or expanded programs. At times this did not go well.

When DC was in his junior year, I started looking at alternate programs for him to attend for his last two years of school. DC would walk with his class at graduation at the end of his senior year (at 18) and then either spend two more years in the high school or I could have him out-placed into a different program that focused more on getting him ready for the next phase – a work/day program and life. I already knew I did not want him in the high school for another two years and I was already leaning towards another program the next town over. Mid-senior year, the high school announced that they were creating a transition program of their own in conjunction with a local university. It would be up and running in time for our kids to start that September. The program they came up with sounded wonderful but, our kids would be the first ones through and again the “test subjects”. This worried me.

On the other hand, I was torn because it had only been over the previous couple of years that DC recognized “friends”. He had real friends. Not just the children of my adult friends, but real friends. People that HE considered friends. Friends that he did things with and wanted to do things with. DC had always gravitated more towards adults and with the exception of his friend of many years, BB, he did not pay much attention to kids his age at all. I didn’t want him to lose that connection. I rationalized that “social skills” were one of his major issues and if I tried this program and really did not like it, I could always move him to the other program I was looking at earlier.

Putting this program together was a long process. Obviously there are many legal issues to address when creating this type of program. By mid-summer the other parents and I were beginning to panic that this program was not going to be up and running by September. Fortunately by August it was a go, but they had lost all of that transition time they would have had during the school year. We did get to visit a few times before the school year started and I did talk to him about it all summer. Some of my friends children have siblings that went off to college so in turn their children expected to go off to college too. DC doesn’t think like that. He doesn’t have any expectation of what should come next. He lives in the ‘now’ until the ‘now’ changes to a new ‘now’, but we were calling it ‘college’ for everyone’s benefit. “College, College, College” he was going to college. I was still worried, having missed all of that transition time.

Toy Story 3 had come out right around this time. We bought the DVD and watched it at some point during that summer. It didn’t even occur to me while we were watching it or even up to the point when DC was standing at the front door waiting for the bus on the first day of school, that he made a connection in his head with the movie…..

He turned to me and said “Mom, I am going to college, just like Andy in Toy Story”

….. and he was.

With that, everything was just fine.

****

This has been a Finish the Sentence Friday (5th Friday of the month) post –

Share anything previously written! Post an old post for some new eyes, write something new and link that to an old one…

Hosted by Kenya G. Johnson of https://www.kenyagjohnson.com/

and Kristi Campbell of https://findingninee.com/

Camp, Old Friends and a Little Bit of Anxiety

Posted by TakingItAStepAtATime

Yesterday was the first day of summer camp for DC and Salli. DC has talked about nothing else since I told him he would be going on Thursdays and Fridays for the summer. I did not tell him too early because…….

enough said.

He was excited, to say the least.

Not only would he be going to camp but his his favorite ex-group leader, “Giselle” (everyone is named for a Disney character or Princess) would be taking the head position in the after camp program this year!

What you need to know about DC is that no matter how much he wants to go somewhere or how much he is looking forward to going, there is always an element of anxiety that hits him when he arrives…. I like to call it “Arrival Anxiety”.

This anxiety is not anything new with DC, it just seems to be a little more intense, and dare I say, loud since he has been on his seizure medication. It is as if someone flips a switch and there it is. It can be brought on by anything or nothing at all. It just “is”. It also takes him a little bit longer to shake it off now-a-days. For camp drop off, this means a big production until the switch gets flipped back and I am able to leave.

My other concern was that DC, as soon as he heard he’d be going back to camp, began asking for his friend Ron (see story below). Ron had moved out of state a few years ago but still came up to visit his aunt (who was the camp director) and volunteer at camp each summer. With his aunt stepping down as director I was not sure that Ron would be volunteering any longer.

I tried to prep DC ahead of time, just in case Ron was not there this year. He seemed to understand, but with DC one never knows if he is “getting it” until he’s faced with whatever I was hoping he was understanding.

I saw that flip switch before we even left the house.

“Please DC, don’t do this today. Try to calm down and breathe before we get there”. Yes, I know that I can’t just talk someone out of anxiety, but still one can hope.

By the time we picked up Salli, he was “roaring and growling”. It wasn’t looking good.

Somewhere between Salli’s house and camp, he turned a corner and he was just the happy, goofy guy he had been before he went ’round the bend earlier at home. It stops and starts just that quickly, with no warning and often no explanation.

I did not know what snapped him out of it in the car but I was relieved for the moment. I knew that this did not necessarily mean it was over as we hadn’t actually “arrived” yet, but I was hopeful.

Still holding my breath, we pulled into the driveway and got out of the car….. and there was Ron!

ALL HAIL the the Spirit of Chief Gotchabagollie (it’s a camp thing, don’t try to figure it out)!!!!

They hugged each other and DC announced something like “It’s a beautiful day” – that was not exactly what he said, but I knew what he meant and his day was now made.

As DC would say; Phew!

More about Ron and DC (from 2015)

Best Camp Ever!

Yesterday was DC’s last day of camp. The last day is also always “Awards Day”. When DC came home I asked him if he got an award. He said he did. He didn’t have anything with him so I asked him where it was – “At the camp”. (I don’t know if he actually won an award). I asked him what award he won…..
“Best Camp Ever!”

I am sure he did not win an award for “the best camp ever” although he reported it that way to more than one person. I do know that he was really excited about camp that day.

Feeling bad that he had to miss so much of the little bit of time he was scheduled to go to camp this year, I arranged for him to attend on the last two days instead of just his scheduled Friday. It did not make up for the rest of the summer but at least he would be there two days in a row during the last week.

When I called to ask if he could attend the extra day the director let me know that her nephew *Ron would be there volunteering that week. Ron is one of DC’s favorite people at the camp. Ron has been around and volunteering for quite a few years. Like most of the volunteers, he spent a good part of his summers at camp.

DC really, really likes Ron and when DC likes someone – he really LIKES them, to a point that he really needs to be reeled in so as not to frighten the subjects of his admiration. DC really does not understand that not everyone wants to be hugged, not everyone wants him right in their face all of the time. He gets so excited over these chosen few that I really worry that he will end up pushing them away. You have not experienced fear until you see this guy come barreling at you at full speed. Even though at this point I know he is running to give me a hug and even though I know he will be able to stop before mowing right over me, as he is coming at me and in the moment, I am still convinced that he is going to knock me into the next town.

The friends that he sees often are used to this and because he sees them often do not always get the in-your-face DC…… not continuously, anyway. There are a chosen few that he does not get to see all that often, that really get the full DC-experience. If I know we may be coming in contact with any of these people ahead of time, I do try to have a conversation with him before we arrive.

He is supposed to ask permission of the person before hugging, unless of course it is someone we have already established does not mind being on the receiving end of that back crushing hug. Normally when I have to make a rule, DC is good about adhering it. This particular rule seems to give him a bit of trouble. He just gets too excited to think about the rules.

He has had a few experiences where someone was absolutely NOT happy with DC’s attention. In one instance it caused a schoolmate to have meltdown. This upset DC for days. He doesn’t understand. It is not clear to him why he can hug some friends and not others. Some just try to avoid him, a few put up with it because they understand and others do not mind at all and actually are happy to see him. Ron is in the “happy to see him” group.

A few years ago, Ron moved down south with his family. DC continued to look for him at camp and every camp event throughout the year. As soon as he was aware that a winter camp activity was coming the very first question would be about Ron. It took a good long while for him to understand that he had moved far away. I am still not sure that he quite understands ‘moved away’ but he does finally understand that Ron will not be there all the time as he once was.

Ron does come back on vacation to visit his aunt during the summer and comes to volunteer while he is here. In case you missed that…… He spends his vacation volunteering at the camp. Impressed? I certainly am.

DC was so happy to hear that Ron would be there and I am so glad I opted for that extra day. Ron doesn’t seem to mind having DC all over him all day. He is very good with him and I don’t feel as if I have to give DC too many instructions beforehand because I know Ron can handle it.

Halfway through the last day of camp I received a text from the assistant director with this photo.

I know that DC did not win “The Best Camp Ever” award. I am sure he was telling me that he had the best day at camp ever – and a good part of that due to his friend Ron.

*****

*Name changed

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

Posted by TakingItAStepAtATime

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!

Favorite Camp Day – Silly Hats..

Posted by TakingItAStepAtATime

DC’s favorite day of camp, Hat Day. I tried to talk him into the chicken hat, but he wasn’t going with it. He chose the green hat. He chose this hat because it had the long strings that are like long hair to him. There is nothing he wants more than to have long hair, but unfortunately his hair grows out and not down. He wore the hat. He won an award. Above all else, the morning went so much easier than last year, when I was afraid his favorite day would be ruined. Much easier….

From 2015:

Hat Day

Today is DC’s first full day at camp. He has attended this camp since he was 5 years old. He loves it. Before he left the school system at age 21, he was able to attend 9 to 3 every day for 7 weeks each summer. Now that he has a “job”, he normally uses some of his allotted vacation time to attend for two weeks of the season. He does and has always been able to attend the twice weekly after camp program.

He attended when he was at the camp full-time and still attends now after work. Because we took an extra vacation this year, he was not able to take an extra two weeks off to attend camp as he usually does, so I opted for him to go one day a week on Friday in addition to the two “after camp” sessions that do not interfere with his work schedule or his time off. This works out well because I am off from work on Fridays for the summer and I don’t have to figure out and schedule how he will get there each day.

The camp has what they call “Special Days” (more about that in an upcoming ‘Everything is Related’ post) listed on the calendar. Because of DC’s schedule he has missed one of his favorites, Hat Day (or “silly hat day” as DC likes to call it) for the past 3 years. He still has every single construction paper award that he has ever won for his hats on Hat Day and he is very proud of them.

Today happened to be Hat Day. As soon as DC discovered that he would be at camp on Hat Day, it was all that I heard about. We went through his collection of silly hats and he chose the cheeseburger hat.

We arrived at camp and he got himself situated. Although the director and assistant director are aware of his seizure, I wanted to stress again the fact that I really believed it had to do with the heat and the all-around stress of the day we had that day. I also wanted to talk to his group leader personally.

We were a bit early so the staff was still in their morning meeting. DC decided that he had to use the restroom. He came right out and informed me that there was no toilet paper.

(for someone who was so uncomfortable writing a post about toilet paper that I had to use a code word – ‘paper towels’, I do get that it is odd that I am writing a post about it again)

I got him a big handful from the lady’s room and he went back in, no problem…. or so I thought. When he came out, he would not let go of the fact that there was not toilet paper in the men’s room, even though he didn’t need it any longer, it wasn’t there. I told him that I would let the director know as soon as they were finished with their meeting – but he would just not calm down about it.

When the meeting was over he came with me – still ranting – to talk to the director. First I explained to her that what was going on right then was because there is no toilet paper in the rest room. She immediately called to one of her staff to replenish the supply. This did not do a thing to calm him down. It was too late. This coupled with his normal ‘arrival anxiety’ was too much and even when I showed him the new rolls, it didn’t matter, he was too far into this now. It went on for a while.

When he finally did calm down about that, he moved right into his normal routine of obsessing about me.

“I’m sorry, calm down now. I’m sorry. Not ‘crappy’ anymore “- (DC – speak “crabby”).

As many times that I have told him over the years that he has nothing to be sorry about (and as many times as I told him this morning), this is what happens. If we are home together, this could and has gone on for hours. If I am dropping him off somewhere, I try to just get him calm enough so that I can leave, because if I am there he will continue to perseverate on me.

I was worried and having seizure flashbacks because it was hot and now he was upset, so I was afraid to leave when I normally would have. He finally did calm down to the point where I felt comfortable leaving – not to say I feel comfortable leaving him anywhere since the seizure, but as comfortable as I can be now-a-days.

As I was leaving he moved on to obsessing about whether I was going to come back and when I was going to pick him up. This is his regular obsession – I do not know why – I have never been so much as a minute late in picking him up anywhere, ever, but it has always been a thing with him.

Now that he had moved on to “Mom is coming back”, his regular routine, I was sure it was safe to leave.

I hope his anxiety this morning does not ruin “Hat Day” for him. Fingers crossed that he comes home with that construction paper award today, because that will most certainly fix everything.

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

and later ……

It may not be all about the cake…

Posted by TakingItAStepAtATime

This was not supposed to be another month of updated re-runs, but I keep running into the same situations or anniversaries so that is what has happened. I do have plenty of posts banging around in my head; I just haven’t gotten around to writing them.

DC’s Dad just came back from seven months in Florida and we are up against the same situation as in the post below. DC does not want to go out of his way to see him. Not because he doesn’t like his Dad – he just has gotten out of the habit of seeing him. He’s been gone for as I said 7 months and now here comes this guy trying to mess up his schedule.

He called and asked to see DC on Sunday as Sundays turned out to be DC’s pick last year, but he immediately said no. He said no to Saturday as well until his Dad offered to take him out to dinner. He agreed but wanted to be sure that he was coming home right after dinner.

I am sure he will get over this as he did last year. I can not blame him for feeling the way he does, nor will I ever force him to go. I want him to know it is his decision. Once he gets used to him being back, I am sure he will come around, if he doesn’t then I’m sure we will figure out something so he will see his Dad without stomping all over his decision.

So it may not be all about the cake this year, but I am sure, it will not be refused if offered…

Will there be cake? (from 5/2015)

DC’s father was in Florida for the winter. He left in mid-November. DC did get to see him on the day after Christmas for dinner when DC, Doug and I were in Florida on vacation.

His dad came back from Florida in May for the summer. One of DC’s first visits with his dad was on a Sunday. They went to his Aunt’s house for DC’s belated birthday party. His dad was not here for his birthday and his Aunt was ill at the time, so the party she planned to have for him right around his birthday had to be put on hold. They made up for it that Sunday though. DC was happy, he loves his birthday and nothing could be better than to be still celebrating his birthday two months later and let’s not forget the cake! Cake is very important to DC!

His father asked to take him on the following Wednesday, so DC went to his father’s house and came home in the morning in time for his transportation to take him to work. It was only a few days later on Sunday that DC had his seizure. He was supposed to go to his father’s on the following Wednesday, but we decided to cancel since it had only been a few days since the seizure and I was not comfortable letting him out of my sight.

A week later, his dad took him to his Aunt’s house again, this time to celebrate Father’s Day with the rest of his family. DC came home happily listing everything he had to eat because that is what is important. (He did ask me about “cake” before he left that morning and I told him that there may not always be a cake every time he goes to his Aunt’s house…..but yes, there was a cake 🙂 ).

When his dad returned him on that Sunday he asked if he could take him again on Wednesday. DC got frustrated and said “No! I don’t want to!”. He does this at times – he says no, without meaning to or without really listening to what he is saying “no” to. I told him not to worry, we had nothing scheduled on Wednesday and it would be fine for him to go to Dad’s. After his dad left he continued to go on about not going. I thought that he might be confused so I brought him to the calendar to show him that there was nothing going on that day. I wrote “Dad’s House” on the calendar. DC got angry and yelled “Cross Out! No!”.

From the many years spent crawling around in DC’s head trying desperately to figure things out, I had an idea about what was going on here, but I left it alone for a while. When I talked to him again a few hours later and got the same response, I decided I had to call his dad the next morning. As I said, I had an idea about what was going on but first I wanted to be sure that nothing happened, even something as small as the power going out for a split second, or the dog jumping on him, or a piece of furniture in different place, would be enough to cause this anxiety. There was nothing that he could think of.

I told him what I thought this was all about. DC hadn’t seen him in over 6 months. He was now used to not seeing his dad and only talking to him on the phone. Even before he left for Florida, he had not taken DC twice a week for many years, it was always once a week – every other Sunday and every other Monday. Now he is home and DC, with his own agenda in his head, and also quite used to not seeing Dad, feels as if Dad is “cramping his style” for lack for a better term. That, combined with his seizure and probably not wanting to sleep anywhere but home was making him a bit anxious. He loves to see his dad, don’t get me wrong, but he is used to what he is used to and it will take a little time for him to get used to something else. His dad suggested that I ask DC what day he would like to go to his house.

Later that day I did ask DC if he wanted to pick a day that he wanted to go. There was no fussing and no anxiety, it was his choice. He immediately wrote “Dad’s House” on Sunday. I told him that I would call his father to see if he was available that day. As it turned out, he wasn’t. I told DC that Dad had to work on Sunday (he didn’t, but it was easier than trying to explain “other plans”) I asked him if he wanted to make another choice. He chose Wednesday! The same day he was so adamant about not going!

Wednesday came and he was happy to go and he was still happy when he came home.

What have I taken away from all of this?

~ He needs time to get used to the fact that his father is going to be a part of his schedule again, at least until winter comes.

~ We need to make sure that DC is allowed to have some say in the matter and give him a choice of dates.

And….. you might think I am trying to be funny or making a joke, but I know my child…..

~ I am absolutely 100% certain that when I first gave him a choice and he opted for Sunday right away, it was only because he thought there would be cake……

The aftermath…..

Posted by TakingItAStepAtATime

I wrote about the passing of my step-father and DC’s understanding of the situation in an earlier post (Understanding Death is not like a Disney Movie). Not to diminish how difficult it may have been on anyone else, but this was a very difficult time for DC and this blog for the most part is about DC and the way his autism affects him and his life. It is about the way we go about things and the way he handles situations.

I have said before that I do not always look for accommodations for DC – I want him to try everything. There are times when the “regular” way of doing things need to be adjusted a bit.

If he needs to stand in the receiving line with me, then he does.

If DC needs to flap or cluck like a chicken, then he does.

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.

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.

Really?

THIS IS AUTISM!*

*****

*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.

*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!

His Title Remains Firmly Intact…..

Posted by TakingItAStepAtATime

I had to take DC for bloodwork for the second time ever, this week. Because of his seizure medication, bloodwork will become a regular part of his life. I am thankful that due to the type of seizure medication that he is on, he will not have to go for bloodwork every month or even close to as often as some of his friends do – small favors. After all of the chaos during his last visit and even though he realized in the end that it did not hurt at all, I was worried that the ‘not hurting’ part was not going to be what he remembered. The ‘needle’ part is what makes him anxious.

I put his bloodwork off for a couple of weeks because I was scheduled for a physical myself which normally includes bloodwork. I was hoping that we would be able to go together so he could watch me and see that there is nothing to be afraid of.

We talked about it for weeks. I reminded him that it did not hurt. He seemed relatively calm – until we arrived and were in the waiting room. His reaction was just like, if not worse than it was the first time.

The people at the lab were nice enough to let us go together. I wasn’t sure if they remembered him from the last time or if it was just about him losing it at the reception window, or both – but they obliged.

Still, I was not sure if me going first was THE best way to go. I was on the fence. This could go very wrong. On one hand; he could watch me and understand that it does not hurt – on the other hand; THE NEEDLE – he would be watching the needle.

I was still debating in my head when we were called inside and at the last second I decided to go first. He watched every move the lab tech made very intently. He was interested, not fearful at all. When it was his turn, he sat in the chair and insisted on watching the whole thing. He saw the needle and he watched the whole procedure without making a sound. Even with all of the prep beforehand and watching me, I never thought it would go that easily.

The second they were finished, he lost control – jumping, stimming and yelling. Maybe it took a lot out of him to keep himself in control for the needle and he just had to let go when it was over, I don’t know. I do know that even with the before and after commotion, this time was so much easier than the last.

In my opinion, his “Sir DC the Brave” title remains firmly intact….

*****

From August 2015:

“They call me Sir DC the Braaaave”“and history someday will rave…….”

DC had to go for blood work today. He has never had to have blood drawn before. They did take blood in the ER after his first seizure but he was so “out of it” that he did not give them a problem about it at all.

DC has always been very healthy so his doctor and I had decided to put off blood tests unless it was necessary because having blood drawn would entail making an appointment at the hospital to have him put out – an all day affair. He is big and he is strong. Even when he was younger and had to have a vaccination, I had to bring reinforcements to the Doctor’s office. Most of the time we had, his Dad, Doug, me, the assistant and the doctor in the examination room. No one could hold him, no one. It was exhausting and even with all of us trying to hold on to him, the doctor would eventually have to resort to chasing him around the room until she had a semi-good shot at sticking him. I often wondered if he ever actually got everything that was in the needle.

Well, we could put if off no longer. Due to his seizures and medications, he had to have blood drawn. He did let the paramedics put an IV in during his second ride to the hospital and he was much more alert that time. Hoping that he remembered this, I decided we would try to go to a regular lab. I talked to him and explained what they were going to do. I also explained that if he did not let them take the blood at the lab we would have to go to the hospital to have it done. He did NOT want to go to the hospital again.

He was all right until we got to the waiting room at the lab. He was in full-on anxiety mode – yelling “I do believe in fairies, I do believe in fairies, I do believe in fairies.”, jumping up, yelling and making his noises quite loudly.

We got him into the drawing room and into the chair and at this point he had calmed down enough that I really thought we would be able to do this – until he saw the needle.

Let the battle begin.

The technician called for back up and fortunately Doug had come with me as reinforcement. Still no one could hold him. It had gotten to the point where as great as the staff was, I knew they could not do this much longer. They gave it one last try with Doug actually laying across his free arm and all of us holding the “needle arm”. As soon as he saw the needle go in he stopped fighting and let them finish. Sometimes the anticipation is worse than the actual event.

He was fine. He was proud of himself. “I did it! I did it!”

When we walked out of the room all eyes were on us from the now very crowded waiting room. I am sure they wanted to see who had been causing all of that commotion. I could not care less. He did it and that was all that mattered. DC, with a wave and a smile yelled “Good-bye Ladies” and we were off.

In the car on the way to breakfast before heading to work, DC was so proud and not wanting us to forget it, began singing a song. I recognized it from when he was young, but I hadn’t heard it in years. I could not even remember where it came from:

(his name has been muted out of the video)