The Lights Go Dim in The Chocolate Factory

I saw Willy Wonka and the Chocolate Factory when it first hit the movie theaters in the early 70’s. I think I was about 11 or 12, but even at that age when I was supposed to be way too cool for movies like this –  I loved it. I don’t remember being afraid to admit it either and I loved Gene Wilder.

I remember a few years later going to see Young Frankenstein when it first came out as well. I can still watch that movie and laugh just as hard as I did back then. There were plenty of other movies, but those were the two that made the impression on me. They were the ones that brought Gene Wilder front and center for me.

Willy Wonka has become one of DC’s favorite all-time movies and I am glad I was able to introduce him to something that meant so much to me during my childhood and that he loves it just as much if not more that I did. It is a classic and it is timeless. Willy Wonka and Gene Wilder will live on forever in our hearts.

In honor of my and DC’s love for the great Gene Wilder, I am re-running an “Everything is Related” post from last year.

RIP Gene Wilder…..

Everything is related – Willy Wonka

In a few weeks we will be leaving for our trip to London.

One of the items on our agenda is going to see Charlie and the Chocolate Factory – The Musical at the Theatre Royal Drury Lane. DC is so very excited. Willy Wonka has been a favorite of DC’s since I can remember.

Wonka through the years

Wonka through the years

In honor of Charlie and the Chocolate Factory – The Musical – here is the third installment in the “Everything is Related Series” – you can find the first and second here and here.

Among the many other reasons:

  – Everything being related, has helped him to move on to a more diverse realm of TV shows and movies (while still loving all of the originals he has loved since he was a baby). When attending an ARC movie activity or even just a movie night with friends, for instance, a Disney or animated movie may not be the choice of the others attending. Relating one movie or actor to another has helped him to be more open to watching something that may not be Disney-based.

For the first time so far in this series, we do not begin with Disney. DC, for some reason decided that Willy Wonka and the Chocolate Factory, even though not a Disney Movie was just fine with him. He has been watching it for years. I’m sure I had to bring it to his attention originally but this one he actually liked the first time around (this is not always the case – he hated Shrek – refused to watch it for the longest time. Now he is Shrek’s biggest fan).

Yes I do realize that Willy Wonka does not have much to do with London, but I am going with it anyway.

It is entirely possible that Jack Albertson had something to do with DC green-lighting Willy Wonka. Jack Albertson was “the voice of” Amos Slade in The Fox and The Hound…..

and there it is…..

the Disney connection.

DC knows “the voice of” just about any Disney character you can name. His love of the original Willy Wonka brought him to the Charlie and the Chocolate Factory movie and to Johnny ‘Deep” (DC-speak). For quite awhile after that version came out, I did hear quite often that it was “Not ‘Jen Wonder’ (Gene Wilder)”, but I think he just felt the need to tell me that. It did not deter him from watching. Johnny ‘Deep’ opened up a whole new world for him, some Disney based…

DC as the Mad Hatter

DC as the Mad Hatter

..and some not – but he was instrumental in getting him to watch other types of movies. As I said in the first post and above – it is important for him to be open to other movies when he is attending an activity or out with his friends.

When DC was younger he did seem to like the Harry Potter movies. The books were just too much for him at the time. I was always on a hunt for Harry Potter type books that were a little less intimidating for him. I was really never successful, but I did come across the Spiderwick Chronicles Series. I bought him all of the books that were available at the time and I discovered that there was even a movie out on DVD. I tried desperately to read these books with him every night and I tried and tried to get him to watch the movie. He was not having any of it.  So, after years of them sitting on the shelf collecting dust, I finally gave up and got rid of them.

It was only a year or two ago that I was flipping channels in the living room, not really paying attention when DC ran in screaming “Freddie Highmore, Freddie Highmore!!!” – I had no idea who that was or why he was screaming.

“Charlie Bucket! Charlie and the Chocolate Factory!!!”

The Spiderwick Chronicles was on TV and he was so excited. He watched the entire thing – which is a big deal since it was a weekend and he was giving up some computer time to watch – and yes, we did have to go out and buy  the DVD and the books all over again. This movie that I tried so hard to get him to watch when he was younger is now among his favorites.

The original Willy Wonka is by far his favorite version. Meeting the real Mike-TeeVee saved him from an anxiety attack at NY ComicCon a few years ago.
mtv

But , Johnny ‘Deep” has broadened his horizons.

DC’s latest obsession is the latest version of “Into the Woods” with Johnny ‘Deep’. He does have the original version from the 80’s or 90’s but this new version is without a doubt his new favorite movie.

He randomly will announce to me that ‘Merue Strip’ plays the wicked witch, just in case I have forgotten……

Meryl Streep………yes! I can work with that!

But it all began, long ago with Gene Wilder.

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Sub-minimum; another view

money

I just received a letter from the agency that DC “works” for. To paraphrase; there are new federal rules that will impose limits on people earning less than minimum wage. The clients that are already earning sub-minimum can continue to do so, but they will be required to receive “career counseling” annually. Basically, they will no longer be able to accept new clients at sub-minimum.

I know that there is cheering and celebration going on after reading the paragraph above but I ask that you take a minute to read another side to this issue, because there are two sides to this. If your child is not an adult and out of school, the reality of the “other side” for many may not be something you might be thinking about right now.

I agree that EVERYONE is entitled to be paid minimum wage, EVERYONE! The reality is that some of our children will never be able to work at Walmart, Target or hold a “regular” job. Should they earn minimum wage if they do not hold a regular job? Absolutely! Do I think my child deserves minimum wage? Absolutely again, but unfortunately the funding is not there to support it.

When DC was young and in school, I had no idea how any of this worked. I did not understand agencies or Group Supported Employment at all. I would have had the same knee-jerk reaction to him working at subminimum wage. I would have envisioned sweat shops and whatever other horrors that you might be envisioning right now.

My son works for a non profit agency – Group Supported Employment. He works in their greenhouse which is open to the public. He has staff supporting him all day, everyday. He earns less than minimum wage.

DC is 25 and will never be able to work without support – a good amount of support. The agency that provides his work program is funded by the state. Funding is cut each and every year – each and every year. We can all scream and yell that these programs need more funding, but the reality is that funding for programs for the disabled is cut every year. If his agency is made to pay their clients minimum wage, they could only afford to keep 6 of the 12 clients working in the greenhouse. Where would that leave my son and others like him? He has the right to feel productive. He has the right to do something meaningful with his time every day. Where would that leave him? Sitting home all day or in a day program (like a day care)? He loves his job. He likes to go to work every day. Basically what this letter is saying is that they will no longer be able to accept ANY client at subminimum, which in reality means they will not be able to accept ANY new clients at all – at least in their work programs. So where will all of the students leaving the school system go if they are not able to work at a regular job out in the community?

I do believe that agencies holding a below minimum certificate should be monitored closely, but to do away with them blindly is doing a disservice to those that are not able to hold a regular job.

This agency also supports and trains clients who are capable of going out and working in Walmart, etc. Those clients, after they are trained DO make minimum wage or more because they are paid directly by the company that hires them – while still getting support when needed and at times, transportation through the agency.

If your child is lucky enough to be able to work without support out in the community, that is great! If not, I hope that in the future these agencies are able to receive the funding and support that they need, because all of our children deserve that. Until then, please do not take away their opportunity to have a job like everyone else and benefit from the interaction with the public, while still having the support of staff to help them throughout their day.

I am in no way advocating for anyone to make less than minimum wage, I am saying that right now, this is the reality for my child. He is working like everyone else. He is in a place with staff, he is safe and he is being looked after.

For those of you that may be envisioning the “sweat shop” scenario; the “clients” attend the program for 6 hours per day. They do as much work as they are capable of doing. They are not forced to work. They are not doing hard labor or strapped to a chair to meet a quota. They are learning, they are socializing they are out in the community and making contact with the public. They are surrounded by and supported by agency staff. These “businesses” are created for the soul purpose of providing “employment” for their clients. They are not booming businesses and most of them are not profitable. Even though they are open to the public, they are providing a service to our kids, more than to the public (I can only speak of the agencies in our area, but I imagine that it is about the same in most agencies).

While the states continue to cut the funding of programs for people with disabilities, the Federal government in turn expects these already struggling agencies to now pay minimum wage. They are required to maintain a certain level and staff to client ratio, but when the funding disappears, the level of staff still must me maintained.

Think for a minute about where you think your child will be after he/she finishes school. Will he/she be able to go out and get a job and work without support? If the answer is no, or maybe not, then think about just what they will be doing instead. Will they stay home all day? Enter a day program/daycare? What do you think they would want to be doing? Would they like to say they have a job like everyone else around them?

As much as DC lives in the present and “what comes next” is not what is in his head most of the time, he does know that Mom is an adult and has a job. He knows that Doug has a job. He knows his friends have jobs. He knows that most adults have jobs. He knows that he is an adult. He likes that he goes to work. He likes that he has a job. But, unfortunately the government would rather see a large portion of this population sitting around at home or attending day/recreation programs than do something that might make them feel productive…. to have a job like everyone else.

Special Delivery and throwing a wrench in the routine

IMG_5387One of DC’s IP (no “E”- he is out of school) goals is for his staff to work with him on being home alone for small amounts of time. Anyone that knows me, knows that I am not comfortable with this at all but as he moved through middle school and high school his dismissal time got earlier and earlier. As he got older there were less to almost no options for after school care. He is verbal but does not communicate well so hiring and trusting a stranger was not an option and I was running out of people I knew to hire.  After his freshman year of high school when I lost my last babysitter to college, I knew I really had to teach him to get into the house by himself and safely. I had cut my hours as much as possible without losing my full time status, but still the race with the bus was tight and a nerve-racking experience. I knew he really should learn how to get in, lock the door and call me, just in case there was a time that I was delayed getting home.

I began working on this a very long time ago, long before it was an official goal. We practiced quite a long time and finally made it to the point where he was okay for a few minutes. It is actually odd that they added it to his IP as a goal just a few years ago as by that time he had already mastered it, but I suppose practicing with his staff could only enforce what he had already learned.
 

I started the process unintentionally when he was still in middle school. Everyday when we would arrive home from where ever we had been I would hand him the key and let him unlock the door. Never thinking that he would ever be in the house alone I just thought that he should learn to use a key in case he had a locker when he went to high school.

 

After losing that last baby-sitter in high school, I started by going step-by-step through the routine with him. Unlocking the door to get in, locking the door behind him, calling me,  getting a snack and waiting for me to come home. There were pictures and reminder notes everywhere. We did this for months before he got to the point where he did everything without prompting. Doing everything on his own when I am there never means he can focus enough to do it on his own.

 

So let the testing begin…..

 

I am fortunate that DC had the same bus driver and bus aide all through his 4 years at the High School and throughout the 2 year College Transition program. I am also fortunate that they were absolutely wonderful women and went above and beyond for all of the kids they drove. I knew they would cooperate.

 

My car, when parked behind the house could be seen from the main road that the bus drove down before turning onto the extension road that leads to our street. You really have to be looking for it in order to see it and my hope was that DC did not even realize that it was visible from the main road and would not be looking for it. The drivers were instructed to let him get off the bus only if they saw that my car was in back. I hoped that DC would not know that I was home and hiding in the garage. I wanted to be sure he would follow all of the steps we had gone over 100 times before, when I wasn’t there. The first day, he came home “by himself”, I could hear him barreling through the house. I waited and waited for my phone call – nothing, but I could still hear him stomping all over the house as if it he was having a dance party. Finally I dialed the house phone. The phone ringing must have reminded DC that he hadn’t called me and instead of answering the phone, he picked it up and began dialing (while I was on the phone) and began reciting his script:

 

DC:  Hi, Mom! I am home!
Me: DC, you were supposed to call me when you got home.
DC: Yes. I’m sorry Mother (pulling out the formalities and using “mother”)
Me: Did you lock the door?
DC: Yes.
Me: Okay, Go get your snack and I will be home in a few minutes.
DC: Okay, see you later.
I waited in the garage for a few minutes and then opened the garage door as if I was just arriving and then closed it again. I came up the stairs and DC was waiting at the cellar door.
I looked around and the front door was not only unlocked but wide open.

 

Closed the door – NO
Locked the door – NO
Called Mom – NO
Got a snack – Yes
I did sort of expect him to be a bit confused the first few times – it was new.

 

We went through the whole routine again and he completed every step without a problem. We went through it every single day for weeks and even though he could do everything while I was there, every day it was the same outcome when he thought he was alone. I knew that he knew what he was supposed to do, but I also knew he needed some incentive to focus on what he needed to do, so after weeks of hiding in the garage and DC forgetting to complete every single step (except for the snack, of course) – I finally had to pull out the big guns.

 

“DC, if you forget to call me when you get home and I find the door unlocked one more time, you will lose your movies and computer this weekend.” That did it. The next day, he did everything perfectly – everything!
Now, I would never threaten his movies or computer use over something that I knew he was not capable of doing. In this case he was following all of the steps without any prompting while I was there. He just could not get himself to focus when I was not there. Losing his weekend computer time was just the incentive that he needed.

 

The next test was to be sure that he would not open the door for anyone. After a few weeks of hiding in the garage, I decided it was time to ring the doorbell and …… he answered the door.  Knowing that this was not something I could test again right away because he would know it was me; I had to pull out the big guns immediately and threaten his weekend movie/computer time again. I waited a few weeks before I tested the “Do not open the door” rule and when I rang the bell, I could hear DC yelling “Do not open the door” and he did not open the door.

 

A friend said “You are going to tell him that he is allowed to open the door for the police.”
Umm, no.

 

For DC there is only “You can open the door” or “you can’t open the door” – there is no in-between. Fortunately our police department has a program in place where families of special needs children and adults can register with the department. If a call should ever come in to the police department for any reason, our address is flagged and the officers responding can pull up pertinent information about DC; verbal but does not communicate well – may not answer questions correctly – may change his answer if asked the same question more than once – may become upset if asked the same question too many times – not aggressive but he may become agitated and so on. The information on file also states that he will not open the door.

 

My hiding in the garage went on for about a year until I was as comfortable as I could be with this. I spoke to the bus driver again and told her that it was okay to let him off the bus as long as they did not leave until he was in the house and had closed the door behind him. Most of the time I still made it home before him, so I would park down the street, far enough so he and the drivers could not see me, but close enough so I could see the house and the door – I wanted to be sure that they were not leaving until he was inside. Even though I was home before he was 99.9% of the time and was sitting down the street, just knowing he could do it took away a lot of the panic of racing the bus every day. The very few times that he did arrive before I did, I was on the phone with him the entire time. As an additional safeguard in case I was in an accident or something like that,  I had an alarm clock set in the living room and if I was not home by the time it went off, he was to call Doug or my mother. In case something like that ever did happen  and he was not focused enough to call Doug or my mother, I set it up with Doug that I would call him when I got home and if he did not hear from me by a certain time, he would come right to my house.

 

Not long after all of this training my DDS (Department of Developmental Services) caseworker was able to secure a grant for support services and staff, so I was able to go back to my regular working hours. As I said, hiring strangers was out of the question but fortunately I was able to hire two people from the school system. One knew DC very well from school and the other worked with and/or knew at least 4 people that I knew well. Even though he now had staff and they usually arrived earlier than DC did, they still had him go through the motions of unlocking and locking the door and calling me, so he did not forget everything he learned.

 

When we went from high school/transition program to a day/work program, we lost his beloved bus driver and aide and had to move on to a livery service (the first service was a disaster, to put it mildly, but the next service driver was wonderful and the private hire he has right now is working out just fine). These drivers were also not allowed to leave until he was in the house and the door was closed behind him.

 

Since he started having seizures last summer, I am no longer comfortable with him being alone even for a few minutes. As I said, one or the other of his staff arrives at my house every day a few minutes before he does. Both are coming from full time day jobs so there is not a lot of wiggle room time-wise, but on Monday, Tuesday, Wednesday and Friday their arrival time works out perfectly. On Thursday’s his transportation arrives earlier than the rest of the week because his friend *Salli is not in the car- sometimes as much as a half hour earlier. On Thursday’s I leave work early so I am home when he arrives.

 
On this particular Thursday,  I was home. The door was open but I didn’t hear the car arrive so I was not right in front of the door (now, due to said seizures, the driver is required to stay until he gets inside and either sees me or his staff).  I believe it was our old driver’s last day. I could hear DC making the noise he makes when something is not right or exactly as it should be. Hearing this noise I could picture exactly what he was doing; coming up the sidewalk, looking at the ground and walking his determined/aggravated walk.

DC, from my many years of trying to avoid turning everything into a routine, can be pretty flexible about some things. His “coming home and getting into the house” routine is not one of them.

Before I made it to the front door, DC came in. A split second after he came inside, the screen door opened again and a pair of hands put a package down right behind him on the floor inside the door. DC, clearly upset, would not turn around and totally ignored the person and the package but the noise he was making got louder, knowing someone was behind him. I went to the door and the mailman was just getting back in his truck and DC’s driver, seeing me, started to pull away.

We have lived in this house for about 18 years. Does the mailman see us enough to know that DC is autistic? Probably not. This poor man was probably two steps behind DC all the way up the sidewalk wondering why this guy was ignoring him, walking so quickly and not turning around and take the package (and making that noise).  DC, on the other hand was just becoming more and more  annoyed that some guy was following him and messing up his routine.

There are just some routines that are not to be altered in any way, shape or form and this routine is certainly one of them.

But really, the whole thing must have been pretty entertaining for his driver on her last day and any other neighbors that may have been outside at the time …

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

(FYI, Seeing a set of  just hands and a package coming through the door has scared the life out of me more than once)

(The photo? A re-enactment, of course – but exactly what it looked like)