First Day of “College”

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…

ts

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… 

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

Camp, Old Friends and a Little Bit of Anxiety

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.

camp 20151

 

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…..

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!

 

 

 

 

 

 

 

Favorite Camp Day – Silly Hats..

IMG_6137

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

 

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 ……

award

It may not be all about the cake…


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)

cakeDC’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.

IMG_0478

 

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…..

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, 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!

 

 

 

 

 

 

 

His Title Remains Firmly Intact…..

Brave

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”needle“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)

(A reenactment, of course)

“They call me sir DC, the brave,

and history someday will rave

I’m valiant and daring, and noble of bearing

Courageous and gallant, a mountain of talent.

No wonder folks curtsey and wave

I’m Robin, Sir DC, the brave.”

Later I asked him what movie he remembered that song is from.

The Frog Prince – the Muppet version, of course.

He was brave, very brave. I am happy he is so proud of himself. Hopefully this means that the next time might go much easier.

Now next up…. the MRI……

That should be something!

(video begins at 2:44 – at the song)

Flap like a Chicken

It has been a little bit of an odd week here in DC-land. Some plusses but just all around odd. At this point even the positives worry me since he began having seizures. Right before both he was hyper-aware and oddly communicative. I just haven’t relaxed enough yet to take the positives as totally positive. So, I worry.

On the plus side, he tried and ATE zucchini! TWICE! – That is MAJOR!

Most of the “oddness” we’ve encountered this week are not out of the ordinary things they just seem to be elevated.

I know I’ve written previously that DC does not cry – never has. When he hurts himself or is upset, he will yell or scream, but he never cries. Even as a baby his crying was more like screaming and he really never had tears. To this day, it is very rare for him to have tears. When he does, it is usually due to allergies and still even with allergies, tears are rare. He will at times use water to make tears so he can look at himself in the mirror and see “tears”.

He started taking seizure medication back in August with really no adverse side effects except for one day about 3 weeks in, he was watching a YouTube video and just started bawling, uncontrollably complete with tears and “ugly cry face”. This went on for a good hour. When I asked him what was making him sad, he said it was the Barney song.

(If anyone should be crying over the Barney song, it should be me. I have had to listen to that song for 24 years now. He’s been watching that show since before it hit PBS, back in the days when Barney was dark purple (and a little scary looking, if you ask me) and Sandy Duncan played Michael’s mother. Yes, I am still looking for that Barney support group.) 

I chalked the crying up to the meds and I did inform his neurologist. It never happened again, until this week, when three times he went into the same over the top crying, like “overly emotional” me crying over a Hallmark commercial.

Each time he said it was because of the Barney song. The last time he did also say that he missed his Aunt Kim, who he is going to visit tomorrow. Now I have to wonder if it is/was a side effect from the meds why did it happen 5 moths ago and not again until this week?

****

Mrs. H reported that on Friday, he came home from work out-of-sorts which seemed to stem from his immediate need to change his shirt. He couldn’t wait. Now clothing issues are ongoing here, but as annoying shirts go, this one really shouldn’t have caused him that much anxiety. Years ago, yes – but really not so much anymore. It was just a plain black shirt, no buttons, no pockets, no collar, no tags – pretty much, a long sleeved t-shirt, but it had to come off… immediately.

****

Today DC and I went to meet my mother for lunch. We were going to an Italian restaurant that we have been to a few times before. DC always has a hard time finding anything to eat there. They do not have even one item on “DC’s Restaurant Triad” – Burgers, Wings or Pizza, so I have to plan ahead when we go there. I have to remind him more than once and check the menu on-line after which he chooses mozzarella carrozza (but we must call them mozzarella sticks, even though they are triangles) and garlic bread also with mozzarella – always.

At the restaurant; his order placed, he heard me order grilled chicken and insisted on having grilled chicken as well! Now, this ‘boy’ loves chicken. He eats chicken just about every day, but it has to have bones. “Chicken with bones and sprinkles” (Mrs. Dash) or wings or tenders (tenders are not required to have a bone). He never wants chicken without the bone unless they are tenders. This…. another MAJOR plus in my book – a fourth menu option!

****

The minus… He got very anxious at lunch, which is not really all that uncommon. He said he needed to “flap his wings”. The restaurant was not busy and there was no threat of him hitting anyone with his flapping so I said it was fine but to try to keep the ‘clucking’ at low volume. He did, but I could see that it wasn’t working for him. I asked if he wanted to go outside for a bit. First he said no, but then he decided he would since he was done with his appetizer and the rest of our food had not arrived yet. Normally, he would think he was being punished if I asked him to go outside – I always tell him that this is not the case but that is what he thinks, so I was surprised that he agreed.

There we stood, on the sidewalk in front of the restaurant clucking and flapping. The clucking was even more intense than usual. The only way I can describe it would be that it looked like his head was motorized. I do not know how he was doing it. I have never seen such extreme clucking. We stood outside for a good long while until he decided he was ready to go back inside. We were not inside for very long before he decided he needed to go out again. More flapping more intense clucking. Eventually he calmed down and I could see a bit of a smile on his face so I knew this would probably be our last trip outside. We went back in and he was fine for the remainder of our time there.

He had a hard time; the minus –  but really the plus side is that he agreed to go outside and he decided for himself that he needed to go back outside the second time.

****

I know that these incidents may not seem like a big deal to many of you. Years ago, all of the above would have been much worse but we are over a lot of that now or I should say that it all comes in lesser degrees now, so all of it combined plus the continuous repeating of random words as if the needle is stuck on a record and the out of control over the top laughing is making me nervous that he is gearing up for something.

He will be going to visit his aunt tomorrow. This will be the first time (other than when he is at his job, with “trained professionals”) that he has been anywhere without me, Mrs. H or Doug since his seizures started (our world has gotten much smaller) and given his odd behavior this week, his poor aunt will have to listen to pages of instructions tomorrow when she picks him up. Fortunately, she is used to me.

Over the years as I gave my lists of instructions to his Dad (I’ve always had many instructions even before the seizures), more than once he’s asked, “You think I am stupid, don’t you?” ……………………………………..

 

To the many other people who have had to listen to my barrage of instructions, I will say, No, I don’t think you are stupid. Yes, I know that you probably know all of this. On the slim chance that there might be one little thing that you do not know, I am going to say it. I will not feel better unless I say it out loud even though I am sure you probably already know it.

He is excited to go to his aunt’s tomorrow and I am sure he will be fine. I have every confidence that she is ready for my list and that there may be a quiz 🙂 –

Just kidding, no quiz…. maybe just on oral exam…

Yes, I am very fortunate that she has had many years to get used to me and is able to put up with me.

 

 

 

 

 

“Don’t you cry no more” #Supernatural

Autograph

Earlier this month we attended Rhode Island Comic-Con in Providence. It was an experience to say the least.

(I have a lot to say about our visit to the Rhode Island Comic-Con. Some good; some not so much. Everyone we met was very nice. Now I understand that they are supposed to be, but we all know that it isn’t always the case. There were a few people who were just extraordinarily wonderful to DC, so I want to be sure I mention all of them. Because I have so much to say about the entire event; Autism-related and not,  I have decided to split the story up into a few parts, by category rather than in order by the day) 

Let me first say that I am a huge fan of  Jim Beaver. I have been since his time on Deadwood.  Jim Beaver was one of the reasons I became a fan of Supernatural – yes, Sam was Dean on The Gilmore Girls so I may have been leaning in that direction anyway, but Jim Beaver gave me the push I needed.  DC is also very aware of the show, but other than Sam and Dean (who were not there), Jim Beaver (aka Bobby) is really the only other cast member that I knew for sure he would recognize. Why is DC familiar with Supernatural (or the “Don’t you cry no more” show) you ask?

Well DC loves music, but his musical choices do not usually come from what he hears on the radio unless it is a Disney song or a song from a movie he has seen. There are only a handful of songs that I can think of that he knows specifically from the radio – Carry On Wayward Son, just happens to be one of them. He zoned right in on the “Don’t you cry no more” line and it has been a favorite of his since.

For those of you who may not be fans of the show, Carry On Wayward Son opens the last episode of almost every season. DC picked up on that right away and as everything is related, he began watching the show.

We didn’t have a lot pre-scheduled for Friday night at Comic-Con. One op I had scheduled was Brent Spiner who had cancelled his appearance a few weeks earlier (“From this moment on, you are my mortal enemy!”) so I thought we would use Friday night to just go and get the lay of the land before Saturday when I was sure it would just be mobbed. We really did not expect to see many people or do very much that night, I just really wanted to figure out where everything and everybody was going to be. As it turned out, Friday was the best day of the event for us. It was not crowded at all and we got to do and see an awful lot.

As we were walking and looking around I noticed that there were no lines at many of the autograph tables. Then we came upon the “Don’t you cry no more” room. The first table belonged to none other than Jim Beaver (be still my heart) – he was not there but the tablecloth was not turned up covering the photos for sale as others were so I assumed that he would be right back. We did have a photo op scheduled with him on Saturday, but photo ops are usually very hurried, so I thought this would be a good opportunity for DC to see him and not feel so overwhelmed and rushed. When we went over to stand at his table and wait, a boy who looked to be about 12 came over to us and asked us if we were in line. DC, who seldom initiates a conversation or a greeting, took one look at this boy, who looked just like a younger version of his friend *Ron from Camp and excitedly in his high-pitched squeaky DC voice squealed  “Hello there! My name is DC Last Name. How are you? It is nice to meet you!”. He grabbed his hand and shook it so hard the boy’s entire body was shaking.  The boy was so very nice.  He was not taken aback by DC’s squealing  and excitement. The smile never left his face. He answered him, let him shake his hand again and told him his name (which unfortunately I do not remember). He then went back to stand with his mother just outside the room.

While we were standing there, I noticed Samantha Ferris at the next table. I asked DC if he wanted to go over there while we were waiting. He said No – he didn’t want to get out of line – even though we were the only ones in said line;  we were in line and in DC’s mind, that was all there was to it. I told him that we would not miss Jim if we went to the next table for a minute. Samantha is a pretty woman with long hair so I knew he wanted to go over there if not for anything else but the long hair  but…. he was in line. I finally convinced him that we could go and come back to Jim’s line afterward. He finally agreed.

Once there, he did get very excited. He told her his name and told her where he lived. Again, he was more conversational than usual. She was wonderful with him. She asked me questions but she also directed some questions to DC (which we know does not always happen). She asked how he became a fan and I explained the song connection. She sang a few bars of ‘Carry On’ for him – which just thrilled him to death. She asked him if the show ever frightened him. He said “No”. I began to explain to her how we talk about the fact that the show is only…. – DC piped in with – “Make-believe”. We talked about one of the loves of his life, Felicia Day (a recurring character) who he had the opportunity to meet a few years ago at NY Comic-Con. Samantha certainly added a new fan to her list that night!

 

DC and Samantha Ferris

DC and Samantha Ferris

 

As soon as we were finished there, DC immediately wanted to go “back to the line” (there was still no line) and Jim had not returned. Samantha told us he would be right back, so back to the “line” we went. DC started getting a little bit anxious while waiting but fortunately not too over the top. Someone ran by us and said “We’ll let him know someone is waiting” and before I had the chance to finish telling them that it was not necessary to rush him, they were gone.

Eventually when he did come out, he looked a bit out of sorts; not the “I don’t want to be here”  out of sorts – he looked as if something was wrong or something had happened. I felt bad and hoped that the powers that be did not make him come out just for us. He apologized and said there had been a slight emergency, which I absolutely believe due to the almost shaken look on his face. Now I felt even worse. Of course the first thing out of DC’s mouth was “I have been looking all everywhere for you”.  Then for some reason, probably because he was zoning out a bit at this point , he called him “Jake” instead of Jim or Bobby. He got his “DC picture” as he called it, so he was happy.

We turned to leave and there was the boy from earlier. DC again very excitedly , shook his hand, gave him a hug and told him he loved him (the asking permission before hugging anyone rule went completely out the window that weekend) – the boy, as before, went along with all of it thankfully.  What an extraordinary child! I wish I could send him many gifts!

During the course of the weekend we ventured back in to the Supernatural room many times.

On Saturday he met Curtis Armstrong (Metatron – aka “The worst angel ever”), Mitch Pileggi (Samuel)

DC and Curtis Armstrong

DC and Curtis Armstrong

 

Mitch Pileggi and DC

DC and Mitch Pileggi

and Alona Tal (Jo).  There was no explanation of character necessary for DC here – she is a pretty blonde and that was all he needed to know!

Dc and Alona Tal

Dc and Alona Tal

 

Supernatural room = Success!

Saturday was even more crowded than I expected.

We had three photo ops scheduled on Saturday. I purchased Jim Beaver way back in July and the others at later dates. The only information listed when purchasing a photo op on-line was the day; Friday, Saturday or Sunday.  When they did finally post the scheduled times I discovered that Jim Beaver and another were listed at the same time. I have to imagine that this happened to many other people as well.

On our way to the most unorganized photo op room I have ever seen, DC announced that he needed to “Flap his Wings”. It was just too crowded for him to flap where we were at the time but we did manage to find a corner almost under the bleachers for him to flap. I had him jump up and down a bit too while we had the space,  just to try to get it all out. Then we headed to the area where the photos were to be taken. Jim Beaver was scheduled for 12:45 – 1:15 and the other was scheduled for 12:45 – 1:30. We we decided to get Jim Beaver done first. Explaining the conflict to a volunteer in order to find out how early we could get in line for Jim Beaver, I took out my printed ticket with bar code that clearly stated: You must present this ticket with the Bar Code and your e-mail address to double check the time I had written on the ticket. She looked at it and told us we could probably get in line at about 12:30. We walked around a bit and revisited the “jump and flap” area for one final go. Then we went back to get in line at the time she had given us. I gave the same volunteer my ticket and she said “Oh no, we can’t take those paper tickets. You have to get in that line over there and trade them in for cards.”

What?!?

I followed the direction of her pointing finger to the mob scene, she referred to as a line, and questioned the ticketing process. This was supposed to be our ticket. “I don’t know, I’m just a volunteer, but don’t worry; he’s not here yet”. Firstly, I can not tell you how many times I heard “I don’t know, I am just a volunteer” that day and secondly, the issue was not whether he was there or not, it was about trying to get closer to the front due to our time conflict. We went over and got at the end of  the “card” line. While waiting and out of the blue, DC decided to hug the man dressed as Mr. Spock who was in front of us in the card line. Fortunately again, Spock had no problem with this random hug from a stranger. He explained that he has three children on the spectrum, so he was not fazed by it at all. We talked special needs programs for a bit until it was our turn to trade in our tickets. We finally made it out of that line with our “cards” but by the time we got back to the photo line the entire fenced in area was full and our place in line was outside of the roped in area. The volunteer saw us and yelled. “Don’t worry, he’s not in there yet” – again, not the point!

(I will revisit these paper tickets and photo op lines again in another post)

Doug, who unlike me can usually put up with just about anything, went ahead and spoke to a volunteer at the head of the line. Shortly thereafter a different volunteer came and moved us to the front of the line. I have written before that I do not generally look for accommodations for DC and I did not here. I always want him to try. I did purchase VIP tickets because of DC but this is not Comic-Con or the convention center making accommodations for my son, that is me paying more money to accommodate my child on my own. We did what we were supposed to do. We discovered the scheduling conflict. We planned ahead to get in line early, not earlier than anyone else would be allowed to, but as early as was allowed. We had the proper tickets, only to be told that we didn’t.  So for anyone that might be wondering or is waiting to pounce; we were not moved to the front due to DC’s autism – we were moved to the front due to the total unorganized way that this event was run (there is more, trust me).

After all of this, it was finally our turn to see Jim Beaver. DC did attend one photo op on Friday night (paper tickets were accepted then and there was no mention of a card ticket). Because of the Friday op, DC was expecting Jim Beaver to be standing on the same side of the room as the person was the night before. He wasn’t – he was on the side of the room closest to the curtain where we entered. DC walked into the room, and headed straight to the other side never noticing Jim Beaver standing right there. DC was looking around very confused so  I turned him around and brought him back to Jim, who was looking rather confused himself and probably wondering what was going on.

The photographer took one picture and asked if he would take off his glasses for another. DC, who does not like to part with his glasses immediately said “No”, but he did give in and give them to me. Now he was wearing his crabby face. As soon as they pointed that camera at him, DC being DC,  immediately put on his big photo smile. One of the assistants commented about just how quickly he was able to turn on that smile. Yes, sir. That’s my boy – always the ham. One can not point a camera at or around him and not get that smile.  As soon as the picture was taken DC’s only concern was getting his glasses back. He started walking out without even saying good-bye or thank you, he just wanted the glasses. He did remember his manners after being reminded. I do not usually have to remind him but I know that all that he was thinking at this point was getting out of there before anyone tried to take his glasses again.

DC and Jim Beaver

 

DC (always the actor – wiping his forehead) “Phew, I did it!” 

He had his picture, he had his autograph, both of which will be added to his wall of fame at home and he got his glasses back. Even with the all of the confusion and chaos (there was more), my boy really did a great job of it. We will put the Supernatural portion of our weekend in the win column!

****

Coming soon: The Walking Dead, Dr. Who and his most favorite experience of the Con…

(Our internet has been sporadic this entire week. This post was written partially on my phone and partially on my tablet – typing is difficult enough for me on either of these devices but editing is next to impossible  – my apologies for any and everything I may have missed or made worse by trying to edit on my phone)

 

 

 

 

 

A Conversation – “The Training School” revisited

Recently I wrote a post about a training school. I was a little apprehensive about writing the post because I know my friend Beth has had to place her son in a residential program for behavioral issues and safety. I know that there is a difference between an Institution (as the one in the late 60’s, described in the post) a Group Home and a Residential Program.  I know she is trying to do what is best for her son and her family.  I also know that she has to endure quite a lot of abuse from other parents about having to place her son in the program. Many treat her as though she is  institutionalizing him or locking him away. This is hardly the case.  She is trying to do what is best for her child with the minimal supports that are open to her in the rural area where she and her family live.

I know that this is not the situation she was hoping for,  but in order to help her son and her family this was the only real choice that she had. She wanted to get the proper help for her son that they could not – try as they might –  provide for him.  She wants what every parent wants, a chance at a better life for him. This was not a decision she was happy about making,  believe me – but she believes that this program is what is best for her son and her family right now.  At this moment he needs more help than they can provide at home or in school.

I know that we can not judge other people’s children based on what we know about our own child’s Autism. To use the phrase once again – (I have used it plenty and I wish I knew where it originated) “If you meet one person with Autism, you have met one person with Autism.”

Beth and I had a conversation after I published that piece. Although I understand where she is coming from, she knows full well that many people do not. She agreed to let me use our conversation in the hopes that it may help people understand her situation. It was difficult enough for her family to have to make this decision without enduring the added pressure of other’s opinions.

Beth:  “Unfortunately, it is still the only option for many parents to have their kids live elsewhere.   If it wasn’t for my son’s aggression and property destruction, he would be living at home.  

If there were better supports for people with disabilities to be able to stay in their homes and communities we would not need places like group homes and residential schools. The difference from back then <the time frame from the post> and now is probably the ‘reason’ for the placement. Now, it is usually a last resort after trying to support the person at home or because their needs are many and too complex to be supported at home.

Many people do not make the distinction from the training school/institution that you wrote about to the program my son is in. I have had so many other parents tell me they would never do “that” to their child. There are some horrible group homes and residential programs, not much different than an institution,  just in a different location and given another name. There still needs to be a lot of change in providing better public school programs and home supports. We still have a long way to go in properly supporting disabled people in their homes and community. If that were happening we would not have had to outplace him like this”.

Me: Believe me, you were on my mind while I was writing it. You haven’t ‘done” anything to your child, you are doing what you hope is best for him and your family; because the rest of your family should matter as well. I agree, that people still do not make the distinction and there IS a difference, I know that. I wish more people did.  I absolutely agree that there should be more home supports and school supports in place even if you do not live where it is convenient for people to get to. I would like to use this conversation in a post. I think the distinction needs to be made and can be made better by someone in your situation.

Beth: “That would be fine. I am doing my best to DE stigmatize the placing of a child in a residential school or group home. That is why I share our experience on Instagram. Too many people live in dangerous and unhealthy situations with their disabled loved one because they fear what will happen when they place them.”

Beth lives in a rural area where the school system could not provide the support that her son needed. They could not get or keep support in the home due to the distance many of the support people would have to travel. Many people are not in the position to pack up and move into an area with better supports in place.  They visit him quite often. She is in constant contact with the staff and her son. He comes home for visits as often and for as long as he can handle. The goal here is to get him the help that he needs so he will be able to come home for good one day. To help him manage his anxiety and aggression so that he can come home.

 

They want him to come home…..

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