Sub-minimum; another view

Posted by TakingItAStepAtATime

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

Posted by TakingItAStepAtATime

One 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)

Opinions, Opinions and More Opinions

Posted by TakingItAStepAtATime

As parents of autistic children, we as a community seem to receive a good amount of unsolicited and unwanted parenting advice and opinions from family, friends and even strangers. Why these people seem to be under the impression that this is appropriate behavior or conversation, I do not know. If someone should ask my opinion about their neurotypical child I may give them my opinion – I may not, (especially since I do not have a neurotypical child to base my opinion on) but either way, I will most certainly not tell them that they are “doing it all wrong” or give an opinion in front of their child. As a general rule, if not asked I will keep my mouth shut. I do not understand why it always seems to be open season on us, our parenting skills and our children….

Dear Everyone At The Table:

Let’s just get this all over with now so I don’t have to listen to it in increments throughout the evening, shall we?

1. “Can’t he do that himself?”

Yes, he is perfectly capable of getting up and getting his own food, but I am closer and offered to do it for him. What about this could possibly concern you?

2. “Does he use that much salt at home?”

No, as a matter of fact he doesn’t use ANY salt at home. (See post) – I do not even buy salt as I don’t use it either. He and I together probably consume less salt than any single average person would. Someone along the way must have shown him that salt is used for something other than fairy dust so he does feel the need to use it when we go out to eat.

3. “Does he eat that much at home?”

No he doesn’t. Not even close. He would if I let him, but I don’t. Yes, he gets a little bit carried away when we are out, but one of his favorite things in life is going out to eat so what would be the fun in it if he doesn’t get to have what he likes?

4. “You should make him order a salad with his meal. Does he eat any vegetables?”

He eats a good amount of vegetables, probably more than you do. In his mind, salad and vegetables are not “out to eat” foods. (See answer #3) I don’t believe that I will have to rush him to the hospital for not having vegetables at this one meal. He eats a good amount of fruit too, but I am sure you will now point out how much sugar there is in fruit so I guess I may as well be giving him candy.

5. “Does he exercise? He looks like he could use some exercise”

He walks and goes to the Y at least 3 to 4 times a week. Not to mention the jumping and dancing he does quite continuously when he is at home. He also runs cross country in the fall and takes Zumba every time the class is offered.

6. “He’s put on a lot of weight. You really need to watch what he eats.”

He is on seizure medication – this is one side effect of said medication. I watch what he eats every day (see answer #3).

He exercises daily (see answer #5)

So with all of that being said; Would it be possible to reserve this and any further conversation about his weight or eating habits for a time when he is, you know, not sitting right here. My preference would be at a time when I am not here either.

If you should have any other comments or unsolicited opinions on any subject regarding my child, please reserve them for that same time.

While I am not or have ever been in the habit of commenting on everyone at this table’s parenting skills, I do have a list in my head going way back over the years that I can access at a moments notice. I am not afraid to use it…

(It’s a pretty extensive list)

Best Regards,

Vickie

THE Ultimate Toothbrush….really!

Posted by TakingItAStepAtATime

DC always had a problem with brushing his teeth. Like most things hygiene-wise, if he can not see it, he does not understand it. If his hands are not dirty (dirt that he can actually see) then why should he have to wash his hands so often? Why take a shower, wash his face, brush his teeth? If he can’t see it, it does not exist. No amount of explanation on my part makes it any clearer to him. He does all of these “chores” because I tell him to and only because I tell him to. And because it is something that I am telling him to do he, not really understanding, will pretty much just go through the motions. Yes, he is sent back to do it again and yes, many times I have to stand there to be sure he is doing it correctly or just do it myself.

Brushing his teeth was always the hardest for him.

About a year ago, I was reading a post from Autism-Mom about dental hygiene (the post below is an updated version of the post I originally read). A portion of that post was devoted to a toothbrush specially designed for children on the spectrum. Just by looking at the photo, before even reading the particulars, it made perfect sense. I ordered some for DC and while I was at it I ordered some for myself, since I seem to spend my life in the dentist’s office. It couldn’t hurt, right?

I have to say that even when he just goes through the motions this toothbrush has improved his brushing enormously. I rarely have to send him back to brush again and I have not had to do it for him – not even once.

Here’s the kicker….

I had a dental appointment this morning (with the good dentist and the good hygienist at the good dental practice – not the periodontist ). I only just opened my mouth and she said “Oh My God! You have no stain! What have you been doing?”

I drink A LOT of coffee and staining, specifically behind my front teeth is always a big job – a power tool – worthy job. I told her that the only thing that was different was the new toothbrush. She immediately looked it up on Amazon, called another hygienist in to see it and decided she would buy a few. I told her that the last time I was at the periodontist – the last time I stayed for the appointment – that is, he had made the same observation. The lack of stain was what first impressed her, but once we got past that excitement, it seemed that everything had improved, even after missing a cleaning.

(I do normally have a cleaning every three months, alternating between the periodontist and my regular dentist but I missed my last appointment with her because it was scheduled on the Monday after my step-father’s wake and funeral weekend and it just slipped my mind.)

It always seems as if I am fighting a loosing battle with my teeth, which were perfect until I was pregnant with DC and my teeth seemed to go straight downhill. This was THE fastest and least painful cleaning I have ever had. For the never-ending amount of time that I usually spend in the dental chair, this was a fantastic thing!

DENTAL HEALTH – BRUSHING HIS GUMS – via: Autism-Mom (reprinted with permission)

As the Navigator gets closer to entering puberty and adolescence, I have been thinking about how to add an increasing number of personal hygiene tasks to his routines.

Especially since we are still struggling with basic tooth brushing.

The Navigator doesn’t like brushing his gums. We have tried traditional toothbrushes, followed up by rubbing his gums, but he was not remotely interested in doing that. It took too long as far as he was concerned.

He liked using an electric toothbrush with a spinning head, but that did not solve the issue of his uncleaned gums.

Please Visit Autism-Mom for the rest of the post…

http://autism-mom.com/dental-health-brushing-his-gums/

*****

I do not receive any compensation of any kind for writing about this product. I am writing about our experience only. It works well for us.

Favorite Camp Day – Silly Hats..

Posted by TakingItAStepAtATime

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

From 2015:

Hat Day

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

and later ……

I tell ya it’s frightening… (Happy 4th)

Posted by TakingItAStepAtATime

A repeat from last year. DC’s opinion about thunder, lightening or fireworks has not changed in the slightest. It’s unfortunate that firework season falls right around the same time as thunder storm season. But once I convince him that it is not thunder I will be chasing him out the door and hopefully this year will remember not to put the pajamas on too early. Happy 4th!

Thunder and Lightning – Happy 4th!

I know that fireworks are at times a big issue for children and adults with autism. This time of year is difficult for DC. It is not only Thunder and Lightening Season, but as we know, the firecrackers seem to begin exploding around the middle of June in anticipation of the 4th. I generally spend these two or three weeks explaining to DC over and over again that the noise he is hearing is not a storm, it is just someone shooting off fireworks. He is okay with that. For a child (man) that just cannot stand a storm, he was always fine with fireworks. He actually really LOVES fireworks, he always has.

To look at him when the first few go off, one would think he is terrified. He nearly jumps out of his skin and covers his ears, even when he knows they’re coming, but then he laughs and after the first few the ear covering is ends and he is stimming away.

We are fortunate that we never really have to go anywhere to see a really great 4th of July fireworks display. Someone in town (and I still really haven’t determined who) puts on a really fabulous display every year. At one time there were two big displays, one earlier in the evening that we could see perfectly from the front of the house and the other larger display that we could see perfectly from the back of our house.

I never really know what night they will go off, until they start. Generally I forget all about them until they start. I guarantee you that whether it be tonight or tomorrow night, as soon as DC realizes that what he is hearing is not thunder we will be standing outside in our pajamas.

Maybe this year I will try to think ahead and remember not to get changed so early……

“Mom, do you love meeee?”

Posted by TakingItAStepAtATime

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

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

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

But, back to me….

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

Is it just learned behavior and not real emotion?

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

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

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

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

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

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

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

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

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

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

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

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

Mom, I love you ‘Magly’.

No corrections necessary……….

It may not be all about the cake…

Posted by TakingItAStepAtATime

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

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

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

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

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

Will there be cake? (from 5/2015)

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

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

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

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

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

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

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

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

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

What have I taken away from all of this?

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

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

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

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

#WeWishWeCouldGoBack #LOST

Posted by TakingItAStepAtATime

To commemorate the 6th anniversary of the series finale; I give you this year’s ‘Lost-aversary’ gifts

and my post from the 5th anniversary….

Happy Lost-aversary #LOST #WeHaveToGoBack (from May 23, 2015)

It has been 5 years – 5 years since the LOST series finale. May 23, 2010 – Five Years! It does not seem that long.

LOST was one of the handful of TV shows that I always made a point of watching in real-time (Eureka and the Walking Dead are the others). First thing in the morning when I arrived at work the day after a new LOST episode *Al and I would discuss the entire show from beginning to end – theories, theories, theories. As soon as lunchtime hit, *Dustin would be in my office and we’d go through the whole thing again. *Al commented more than once that we needed a support group – and looking back on it- we all probably did. Out of the office, the conversation always turned to LOST after our monthly Human Services Committee meetings with at least one and at times two of the Town Staff that were in attendance.

May 23rd – LOST-aversary, as it has come to be known is celebrated every year. Greeting cards are mailed and LOST gifts are presented.

: Al’s office

: My Office – Mr Eko

: My office – Desmond Hume

: Dustin’s Office

: My office – Card

This year I am away on vacation. I don’t know at the time I am writing this what kind of internet or phone access I will have.

So…. it is the 5th annual Lost-aversary and……

There will be no annual “Make Your Own Kind of Music” and “Shambala” voicemail messages to kick off the day.

The greeting cards were not mailed because they would arrive much too early.

But….. the gifts have been purchased and this post has been pre-scheduled so with any luck *Cracker will see the post and it will remind him make his deliveries.

I am sorry I am missing it, but at the time this post is scheduled to publish, we should be having a Dr. Who Experience which almost totally makes up for missing the 5th Lost-aversary.

Many things, good and bad have been said about the way this show ended.

The only disappointment for me was never hearing or seeing Libby’s full back story and…… was Hurley’s imaginary friend Dave, really Libby’s dead husband? His name was David and…… it sort of looked like Libby was seeing him at the table with Hurley at the institution …… Yes, I still obsess and go right back into “theory mode”, when the subject of “LOST Unanswered Questions” comes up.

I haven’t watched the series again since it ended. I haven’t wanted to. There are some television series I can and do watch over and over again, like Eureka, Firefly, The West Wing, Homicide; Life on the Streets and Angel – all of which I absolutely love and there are others like LOST that I have no desire to watch again, not because I didn’t just love every single minute of it (with the exception of season two, The Tail Section season) but because I want to remember it the way I remember it. Maybe on the 10th Lost-aversary, but not now. I have watched the last episode over a good many times, though.

Say what you want about the way it ended, but……

(spoilers!!!)

These people left the island and went on to live their lives. One by one as in real life, they died – all at different times and at different ages and stages of their lives. Afterwards, they moved into a sort of ‘holding pattern’ where they lived completely different lives (Flash-sideways) oblivious to the life they once had and unaware that they were there, in this new life waiting for each other. They lived their new lives until all were there, united and were ready to remember – to remember their previous life, the most important part of their life and the people that they loved. They lived these lives until they were ready move on into the light….. together, as it should be.

Christian Shephard to his son, Jack: “Well, there is no “now”, here. This is a place that you… that you all made together so that you could find one another. The most important part of your life was the time that you spent with these people on that island. That’s why all of you are here. Nobody does it alone, Jack. You needed all of them, and they needed you.”

And I just love that.

“See you in another life, brother”

5th Anniversary gifts

Mad Men – Teaching the world to sing…….

Posted by TakingItAStepAtATime

We were in Paris a year ago when the Mad Men finale aired. Being the TV junkie that I am, I took DC’s kindle (the older model that is not very user-friendly) with us because I knew I would not be able to wait until we got home to watch it – proving that I really am capable of planning ahead even though most of the time, my life seems to contradict that. Priorities, I guess…

I did have to wait until we arrived home to write about it because me, typing on a cell phone never goes well.

From June 2015:

Mad Men…. “A thing like that” – A brilliant end to a brilliant series

I realize that I am a couple of weeks behind all of the hoopla surrounding the Mad Men finale. I was out of the country on vacation the night of the finale episode. Please don’t think that I waited until I came home a week later to watch it though…. Oh NO! I made sure that I packed DC’s Kindle for this and only this reason. I did have to wait until the day after before it came up on Amazon Prime but as soon as we got back to the room on Monday night, I was watching.

I really can’t remember how I first came across Mad Men. I don’t know if previews for a show about Madison Avenue Ad(vertising) men in the 1960’s, would have appealed to me. I may have just stumbled upon it. Fortunately that stumble came right at the beginning of the series.

When we think about just how times have changed, we tend to think about the advances in technology, I do anyway. As a child of the 60’s there were so many other things this show touched upon that I had completely forgotten about. The most obvious differences of course being the way women were treated, but there were so many other differences, smaller in contrast to the treatment of women that made the show a walk down memory lane at times and at other times a shocking sprint though the “I can’t believe we are all still alive” jungle.

A scene I always use to describe all of these differences to people who weren’t there is the scene when Sally, playing with one of the neighbors, walks out of the bedroom with the plastic dry-cleaning bag over her head and covering her entire body. Her mother, annoyed says something to the effect of “I better not find all of that dry cleaning laying on the floor in my closet.” It did not occur to anyone that a child could suffocate wearing a plastic bag. Until that actually happened and I assume it must have happened to someone to warrant warnings on plastic bags – no one thought a thing about it.

No car seats, no seat belts, women smoking and drinking while pregnant and drinking butter milk as a treatment for ulcers were all par for the course. It was always the little things like the plastic bag or “It’s not like there is some magical machine that makes identical copies of things” and Don, to a child at his daughter’s birthday party, “Come on, I think there are some peanut butter sandwiches and a BB gun outside” that the creators/writers chose to include that really made the show for me.

My stepfather was never what anyone would call a drinker, but on special occasions or when we were out at some sort of social event, he would always order a “High Ball”. An “Old Fashioned” was another drink that always seemed to be ordered by one person or another. I had no idea what these were at the time and to be honest I still do not know what makes a “High Ball” or an “Old Fashioned”, but I immediately recognized the names when I heard them on Mad Men. I’m sure they are still around and maybe some people still do order them, but it’s not something you hear everyday. Alka Seltzer seemed to be the cure-all during this time period and was present in quite a few episodes. Other than my Mother, who still swears by it as a cure for just about anything, I don’t know if anyone else even knows that it still exists.

Cigarettes…… Do we remember when cigarettes could be and were advertised everywhere? Smoking was allowed in restaurants, movie theaters, bars, airplanes, in one’s office and really just about anywhere.

After watching the Finale, I wanted to write something when we returned home, so I decided to go back to the first few episodes just to refresh my memory. I watched the first few and just continued on and re-watched the entire series. I was glad that I did. Somewhere around season 4 or 5 the first time around, I had really had enough of the Don and Rodger characters. There were scenes that were absolutely cringe-worthy. I have been a fan of John Slattery from back in the Homefront days, but there is a fine line between the handsome, charming latherio and creepy, drunk, sloppy dirty old man. Both characters took a giant leap over that line. I was much more interested in the other characters. Watching it over again did not change my feelings about either of them, unfortunately.

Pete, is another story. After watching a second time, I really noticed just how just funny his character was. There were so many times that I just laughed out loud. What a job Vincent Kartheiser did with this character. What a departure from the characters I had seen him play in the past, namely Connor in the Angel Series. He became one of my favorite characters. Yes, at the beginning he was pretty much a horrible guy. Later I realized that this attitude of his was due to his parents and his upbringing. He always felt as if he was being over looked and passed over. The way he handled this was not always admirable, but further along into the series we do see noticeable positive changes in his character (I thought so anyway).

The series covered the entire decade – it included episodes about JFK’s election, his assassination, the assignations of Martin Luther King and Bobby Kennedy right on through to the moon landing and Nixon.

I was only 3 years old when JFK was assassinated. I do remember people sitting in our kitchen while I was in the living room watching the funeral. I am not sure that I knew who he was but I did know he must have been someone very important because the people in the kitchen were so sad. I distinctly remember looking out of our front window waiting to see the funeral procession go by – because when you are a kid, everything you see on TV is right outside your window, right? The world was just that small in my mind. Martin Luther King and Bobby Kennedy, I remember more clearly and was old enough to understand what had happened. These episodes were handled beautifully, the reactions good and bad, were real.

It was always interesting watching the advertising, the pitches to clients and the products being pitched or products that just happened to be mentioned in an episode, many of which are still around today. The products and product pitches were like an intentional “wink” to us, the audience who knew full well the very popular campaigns that were coming down the pike in real life for these products in just a few years time. Who could forget Alka Seltzer’s “Pop, Pop, Fizz, Fizz”, Life Cereal’s “Mikey” or Heinz “Anticipation”? I always hoped that these characters would actually come up with one of them or a variation of one of them, but they never did…… (or did they?)

Moving into the last and final season, I was still over the Don character and I was hoping at the end of the first half that we were finished with Meghan. I have to this day never watched the “‘Zou Bisou Bisou” performance by Meghan at Don’s birthday party. I skip through it every time. (Cringe-worthy, I just know it). I have a friend that insists that I need to see it…….. I disagree. But, Rodger did seem redeem himself, in my eyes anyway. I was thrilled with the parade of characters from previous seasons in the final half of the last season. I was disappointed that there was not an update – even just a mention of the Sal Romano and Ginsberg characters, but the unexpected appearances Rachel Katz and Glen Bishop almost made up for those omissions.

The resolution of all the character’s story-lines in the finale was quite satisfying. I particularly loved Peggy’s. That was most certainly an “Awwww” moment and I’m glad they gave that to her character. At one point I did have to pause the episode, due to, I believe, watching far too many Joss Whedon productions. I was convinced that something terrible was about to happen in the next few seconds. I truly believed that Pete was going to leave Trudy’s house and become involved in some sort of a fatal accident. Fortunately, that did not happen (and that is the closest thing to a spoiler I will write in this post).

The final 5 minutes was television at it’s best! The episode ended and I thought “What?!!! This can not be the way they ended this series! This is a mistake! Are you kidding me?!” and for one minute I was cursing the day I ever started watching this show. It only took a minute afterwards for it to hit me and when it did, I thought it was the most brilliant thing I had ever seen. There could not have been a better end to this series. We knew what was next for Don. The writers did not feel the need to spell it out for us, they put it out there, sat back and let it sink in and then waited to see how long it would take for us to get it!

I will say it again, Brilliant!