Putting the Screws to the Adults that Fall In-Between

If my posts seem to be a little more “downbeat” than usual lately, it is because that is the way I am feeling with all that has gone on and is going on with heath care, medicaid, (let’s not forget our whole Social Security fiasco) and now new regulations regarding work/agency programs that can also directly impact my son.

Just look at all you have to look forward to when your child becomes an adult.

A few months ago I wrote the post below about Sub-Minimum wage and how, as much as people seem to want to do away with it all together, it has been beneficial for DC (please read the post below, Sub-minimum; Another View,  in it’s entirety before assuming anything about that last statement). He is working for an agency – an agency that created these jobs for people like him who will never be able to go out and get a job in the community at minimum wage without constant support. This is not to say that there are not other companies that have disabled adults working at sub-minimum that should be paying minimum wage. There is abuse and there are loopholes in any system and all entities that hold a below minimum certificate should be monitored closely. But, let’s not throw away the baby with the bath water.

He is not in a sheltered workshop. His program and others within the agency are open to the public.

A few months ago I received a letter that due to new federal regulations, all individuals making sub-minimum wage must attend “career counseling” once a year.

If you have been around here for awhile, I will just let you sit with that a minute……

??????????????

I would have liked to have been a fly on the wall for that- but okay, I get it. The government wants to be sure that there is no one working in GSE (Group Supported Employment) at sub-minimum that is capable of working out in the community. But really, every year?

Next came the notification that many of the programs at this agency (and other agencies, I imagine) have been re-designated as “Transition Programs” from GSE programs. Transition, meaning that the clients cannot stay in these programs indefinitely. They must eventually transition into community employment.

I had DC’s 6 month IP (no “E” as he is out of school) meeting today and the woman who was supposed to explain what his agency is going to do did not attend, so we will have to schedule another meeting, but this is what I have been able to piece together right now:

Because these programs are open to the public but our children do not GO OUT into the public, even though they have customers that they deal with on a daily basis, they have been re-designated as transition programs. What could possibly be the difference?

These programs/jobs that were created for our adult children who are in-between the adults that are not able to hold any type of job and the adults that are able enough to hold a job out in the community, are now to be considered transition programs leading to employment out in the community.  If they find that DC does not qualify as “able to transition” to a regular job in the community, he may end up in a day/recreation program instead of being able to go to work.

OR: The agency has to come up with different options for GSE employment; meaning sending crews or enclaves to grocery stores or other businesses at sub-minimum wage with support staff.

So, we have some states trying to do away with sub-minimum all together because they envision greedy employers who would rather pay sub-minimum wage than hire someone at minimum wage and they envision disabled adults being taken advantage of. Yet, the government is willing to do away with agency jobs that were created for our children and other adults that cannot hold a regular job, in favor of sending them out in groups with support to a grocery store (or where ever), taking a minimum wage job at sub-minimum wage. Isn’t this exactly what the sub-minimum critics are complaining about?

Even if this sort of program proves to be beneficial; there is the added obstacle of finding businesses that are willing to participate in this type of program. That is not always easy; I know this. I have heard it from many of the agencies that I visited before placing DC in his current program.

I really do not understand this at all, but once again, it is children like mine; the ones who are in the middle that no one seems to be taking into consideration….

(My caseworker did say that the wording was very foggy, so this is what they were able to decipher at this time. I will post updates and/or corrections as I learn more)

From August 2016:

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 sub-minimum 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 sub-minimum, 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.

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

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

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

But does he know……

Lost in thought NY

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

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

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

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

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

I remember starting out by pointing out the character.

“DC, do you see that boy?”

“yes”

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

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

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

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

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

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

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

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

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

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

(He LOVES Liza)

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

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

(He LOVES Sandi)

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

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

So why do I continue to talk about it?

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

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

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

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

Have I told him?  – Yes.

But does he ‘know’?

I may never know for sure….

“For Sami, Love Daddy” – Down Syndrome Awareness Month

Still, one of my favorites…..

“For Sami, Love Daddy”

Chloe and Sami

In 1992, when Sami, who has Down Syndrome, was 18 months old, her father, Rich, was the Senior Producer for the Sony JumboTron in Times Square. He began producing a series of spots to raise awareness and acceptance of people with Down syndrome to run on the JumboTron during Down syndrome awareness month. He continued to produce these PSA’s on his own until 1994, when he contacted Emily Perl Kingsley.

Emily is an Emmy award-winning writer for Sesame Street, the author of a wonderful essay entitled “Welcome to Holland” and a personal friend of Big Bird. She also has a son with Down Syndrome.

Emily Kingsley immediately saw the value in what Rich was producing and through her contacts involved NDSS. Together they produced spots which included children with Down Syndrome from all around the country.

The response was overwhelming! All of the featured children and their families from 25 different states came to New York City to view the spots on the JumboTron in Times Square.

As there was so much interest that year, NDSS held an event in Times Square the following year, where all the families could gather to watch the video. A wonderful reception followed at Sardi’s for all the families that made the trip.

In 1995, as a result of the success of this event, the NDSS Buddy Walk was born. Again families gathered in Times Square to watch the presentation and then headed up to Central Park for the Buddy Walk.

In 2013,  Sami, then 22 years old, returned to the Square for the event that was created because of her and the love of a father for his beautiful daughter.

“In my heart the event will always be “For Sami Love Daddy”

– Which is how Rich tagged everything he produced…….

For Sami

Sami with her “Best Buddy”, Chloe were featured in the Bright Lights of Times Square in New York City on September 21, 2013.

Sami and Chloe on the JumboTron

Sami and Chloe on the JumboTron

Hi-Five as Sami and Chloe see their photo on the Jumbo Tron

Hi-Five as Sami and Chloe see their photo on the Jumbo Tron

 

(originally posted in September 2013)

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.

That’s the way it should be-eeee

 

grease 153IMG_3611A repost of an event from two years ago, in honor of my friends that always come through, put up with and go along with not only attending these events but my over the top, out of their comfort zone ideas.

They will not say that they did not have fun!

But really, they are the best!

From February 27, 2014 (Event Date)

“We go together………..”

…like Ramma lamma lamma Ka dinga da dinga dong
Remembered forever like Shoo-wop sha whada whadda Yippidy boom da boom
Chang chang changity chang shoo bop That’s the way it should be
Waooo Yeah!”

GreaseSR

These Kids Rock! They really do!

That was originally all I intended to say. I wasn’t really considering writing about this, but……. as I was thinking about just how proud I am of each and every one of them and just how much DC and his friends just rise to the occasion and always have a great time together,  I just had to mention the fact that not only does DC have the best friends anyone could hope for…. I do as well.

As I wrote in an earlier post:

***I am fortunate to have friends that are willing to go all out for something that DC loves so much; we all took a line from that song and dressed appropriately for the Sing-A-Long. He and his friends had a ball and I think after the initial embarrassment, my friends did as well.***

DC and I are very fortunate to have these people in our life. I am not just talking about the sing-a-long we just attended, but in general, these people are just the best, THE BEST!

DC and his friend BB love Grease. BB is a long-time fan, DC became a fan because of him. When I heard the local theater had scheduled a Grease Sing-A-Long, I knew we just had to attend. Everyone agreed to attend and then I proceeded to harass them for months about costumes. I will admit that I can be a little bit high pressure when it comes to costumes (just a little bit), but I am sure they expected it and if they didn’t, they put up with me anyway. I am sure the last thing the adults wanted to do was to wear a costume again (Halloween is over, can’t we get a break?) but they agreed.

But…. did they expect to be wearing toilet paper rolls? I doubt it. I think they actually thought I was joking when I first brought it up. They quickly realized that I never joke about costumes so the “roll collection” process began. BB and his Mom, Donna were not able to attend the Sound of Music event with us, so as BB was looking forward to wearing his “Grease Garb”, I don’t think Donna realized that she would also be in costume as well until about a week before the event.

We collected our toilet paper and paper towel rolls and headed to Tonya’s house one Sunday afternoon. Tonya being the craft genius and glue gun wizard, was able to figure out just how to do this.

Talk about “Above and Beyond”; she sat there for hours gluing toilet paper rolls to foam strips! All that we had to do was supply our heads.

Glue Gun Wizard

Glue Gun Wizard

They looked fantastic! They were unexpectedly comfortable too!

We headed out to the theater on Thursday night in single-digit weather – not wanting coats to muck up the costumes – it was COLD! We had 10 seats in the first row of the upper orchestra section. Coincidentally a friend of mine had the rest of the seats in that row! Together, we made the best row of costumes there (my opinion only, but I firmly believe this to be true 🙂 ).

We sang, we danced, we had many, many photos taken of us as a group and of us with strangers. We were interviewed and photographed by the local news paper. Those under the delusion they would not be noticed, were wrong.
The “kids” had so much fun singing, dancing and using the props provided by the theater. They just ate up all of the attention they were getting.
The adults had a great time, singing and dancing as well..

except for this guy……..

Except this guy - Grease Sing A Long - Beauty School Drop Out

Except this guy – Grease Sing A Long – Beauty School Drop Out

Those still under the delusion of anonymity, had that shattered when they were plastered all over the news on Saturday.

 

 

The Theater's Facebook Page

The Theater’s Facebook Page

The Theater's Facebook Page

The Theater’s Facebook Page

 

 

As the show was on a Thursday night and not on a weekend, we weren’t able to go out to eat in full dress afterwards – this had to be some consolation to the adults anyway……

But all joking aside, we did have a wonderful time. I can’t say enough about all of them.

Walking around in public wearing toilet paper rolls….

the truest measure of friendship….

Thanks to all of you!

*Thanks to my friend *Al at work, who always comes up with a fantastic photo of our outings

These Three

Best BuddiesThese Three…. they are truly amazing. As their parents, my friends and I know this. We know the progress they have all made.  Sometimes though in dealing with the day-to-day, we do not always remember the journey until someone who has not seen them in quite a while points it out.

We lived it all but we tend to concentrate on the here and now and the future – how we got here is not always uppermost in our minds. We deal with today.

Last week we ran into our kids’ Special Olympics swimming coach at a Best Buddies Christmas Party. She was there with another friend of ours. She has recently moved out-of-state so she was filling us in on what she has been up to since her move. She was also their volleyball and golf coach for many years as well so she has been a part of our kids’ lives for quite a long time – since they were very young.

 

As she was watching our kids at the party, she commented on just how much progress they had made over the years. DC’s friends stories are not mine to tell, but her comments about DC made me sit back and really think about just how far he (and his friends) have come. As she watched him socialize in this crowded room she said “Who would have ever thought that he would be able to sit in this room and tolerate the crowd and the noise?”  She was right; attending this activity would not have been a pretty sight back then. Never mind the noise, he would have never been so social with anyone of his own age or anyone but me for that matter. Then there were the times when I really should have just thrown in the towel and not taken him to practice at all. Now-a-days we can pretty much go anywhere with out too much of an issue.

She knew us and she knew our kids inside out. She always went out of her way to make the process as easy as possible for us and most importantly, for our kids. Special Olympics lost a fantastic coach, when they lost her due to her work and school commitments.

SoGolfSoVolleyball

 

These Three have been through a lot both separately and together. We have all hit some potholes along the way; some deeper than others, but for the most part we have traveled this road together. It is nice to sit back and remember this very long journey that they have taken with each other. They have grown into amazing young adults and yes, we know this, but it is always nice to have someone point it out and bring it all back for you.

Although the stories of his friends are not mine to tell,  I will say that I am as proud of them as I am of him. As we live with new and different struggles and challenges, we should take the time to remember just where we all started and all that These Three have accomplished over the years.

There has been so very much.

Sometimes is just takes someone else to help us remember.

And we should remember and we should be proud of all of it.

These Three………….

They are impressive.

They are amazing.

IMG_2649

 

 

 

 

 

 

Easing my “Elf Envy” with ornaments and clues….

DC is most definitely what I would call the ultimate ornament collector. In 2013, I decided that I would start hiding them around the house to make receiving new ornaments more interesting and to ease the “Elf Envy” I was feeling by not participating in the whole Elf on the Shelf thing.

He did so well with the random hunting of ornaments by the end of that season that last year I decided to make it even more interesting by leaving clues instead of just hiding the ornaments for him to happen upon. It took a little while for him to get it, but he did and I think he had some fun with the hunt.

Below is a post from 2014 – our first attempt at hunting ornaments with clues. We have already begun our hunt this season and at this point, really all I have to say is “Here’s a clue” and he knows there is an ornament to be found somewhere.

Ornament Hunt 2014 (and one Elf on the Shelf)

As I wrote in an earlier post (There’s no elf on our shelf), I do not do the whole elf on a shelf thing with DC, but last year we did start a new tradition of hiding and hunting for the numerous ornaments he receives each year before Christmas.
Last year being the trial run, I discovered he was just not noticing them as I assumed he would, so I began writing notes each time I hid an ornament. By Christmas he was getting the hang of it. This year I decided I would not only leave a note, but also a clue. Coming up with clues that he would understand was not easy and I have to admit my clues need work – below is our 2014 Ornament Hunt –
Complete with some pretty terrible clues – so don’t judge.

#1 Elsa hidden on the shelf of his DVD cabinet

frozen

 

There is a new ornament for you to find.. I hid it very well. If you should find it after you watch your movies, please give me a yell”

(he thinks I’m funny, anyway)

 ~That was the last attempt in rhyming for the season.

#2 Mary Poppins in the silverware drawer.
poppins

There is a new ornament to be found: Just a SPOONFUL of Sugar helps the Medicine go down. What do you use to help the medicine go down?”

#3 Baloo and Mogli on the towel hook

Mogli

He found Baloo and Mogli before I had the chance to leave a clue….

#4 Tinkerbell in the drawer

Tink

Oh No! Tink is stuck in the bedroom drawer!”

Yes, I thought I was just giving this one away. I thought so anyway…. As it turns out, because I didn’t mention an ornament in the note – he read it, put the paper down and went about his business. When I finished laughing, I explained that he had to look for his new Tinkerbell ornament.

#5 Sully hanging on the lamp

photo1

 Sully must be very “BRIGHT” to attend Monsters University. Where is it Bright in the living room?”

It was right here that it finally clicked. He read it (no mention of an ornament) thought about it and without me having to help, looked around at the Christmas tree lights, moved on to the lamps and found it.

—–Progress, Progress, Progress——

#6 Ruby Slippers on his bedroom shelf

angel

 

Cordelia clicked her heels three times in Pylea “There’s no place like home” she said.

It didn’t work.

Who went to Pylea to save Cordelia?”

He understood the question and gave me an answer – he was really beginning to get this. The only prompting I had to give was “Do we have Angel and Lorne somewhere in our house?”

(Unfortunately, our Lorne lost his head after his last fall from the shelf, but in keeping with the theme of the hunt; he did actually lose his head temporarily while the gang was in Pylea. He just had much better luck getting it back in Pylea than he did in DC’s room)

#7 An Elf of a shelf

buddy

Your ornament is

L O S T

so take a look around to find Buddy the Elf sitting on a shelf.

Where is the L O S T shelf in the living room?”

First, let me say – There is an elf on the shelf.

Secondly, I thought this clue might be a stretch for him. That DVD set has been on this same shelf since the show went off the air. This in no way means that DC notices it at all, but I gave it a shot.

Believe it or not, he went right to it. I am always amazed by the things he notices when I think he is paying no attention at all.

#8 Brady Bunch on the wall

bb

 

Till the one day when the lady met this fellow And they knew it was much more than a hunch, That this group must somehow form a family. That’s the way we all became the Brady ‘Bump’.

Where does Doug do the ‘Brady BUMP’?”

This one needs a little it of an explanation….. Doug sings this song, he’s done it for years. He sings the Brady Bunch theme but replaces Brady Bunch with Brady Bump and crashes into the wall.

– insert my eyes rolling –

DC thinks it is the funniest thing in the world and asks him ‘crash and repeat’ – over and over again.

“One more time!”

– insert eyes rolling and head shaking –

This happens to be the spot where the singing and the wall where the crashing takes place more often than not.

-insert,  as DC would say, “Mom, put hand to face” (hand on forehead, as in OMG), shaking head, heavy sigh and eye roll-

Again he went right to the spot. Once it all clicked, it clicked!

#9 TARDIS on the clock

who

 

Dr. Who is a T I M E Lord. – He and the TARDIS traveled through T I M E hoping for a spot on your tree.

Where can we find the T I M E?”

I am 100% positive he would have gotten this with the clue I left. I hid this ornament while he was out with Mrs. H. at his theater volunteer Christmas Party and forgotten about it by the time they arrived home, when I would have guided him to the clue before he had the chance to run around putting his things away.

He spotted it and went over to take it down. I said “Oh, you didn’t get to read the clue”, so of course, he put it back. I told him he didn’t have to put it back, but all things in order; he went and read the clue out loud, then went back to claim his ornament.

#10 Princess Merida in the TARDIS

brave

Princess Merida must be very BRAVE to take a ride with DR. WHO, ROSE and K-9 in the TARDIS.

Where is ROSE and the TARDIS?”

I realized that I did not think this one through completely – He just received a TARDIS ornament a few days before. I was sure he would head straight to the ornament now hanging on the tree. I was correct in my assumption, he went to the tree. After a little bit of prompting “But where else do we have the TARDIS? Where is Rose and K-9?” , he did find it.

I still felt he should still have a few to just happen upon as he did or as I tried to have him do last year, hidden in places that I knew he would go eventually.

Trial run of 2013, over. I am declaring the 2014  Ornament Hunt a success!

Just to update you on my friends’ progress this year. As I said, if I am not going to do it, they very well better be creative about their elf!

~ Yes, it is hard to be my friend……..

Year 2 of  “The harassment of *Al” – my constant badgering to hide elf in a Rice Krispies box. (I’d seen photos, I e-mailed, texted and showed him photos and nothing). Finally he decided he would use this as one of his Elf setups. Geez!

He texted his wife while she was out shopping and asked her to buy Rice Krispies. She replied that she had Crispy Rice. He told her he wanted the real Rice Krispies. She asked why and he said he wanted to make Rice Krispie(s) treats. (Why he wouldn’t tell her what he really wanted them for, I do not know).

She bought Crispie Rice.

I told him that I had just seen a photo of someone using a Crispie Rice box, I had actually e-mailed it to him a few days before, but he said it would not be the same.

The following morning when I was getting DC’s breakfast ready it occurred to me that I had a box of the ‘real’ Rice Krispies, so I took the cereal out and brought him the empty box.

krispies

And there you have it!

*Geri has also done a few very creative things with Derek the Elf, but still being in the training portion of the program, she has not gotten the hang of remembering to take a photo of everything Derek gets himself into.

~Maybe next year

The Santa Train revisited….

train s

December, is the time for reruns. I love reruns, especially holiday reruns. The following is a post from December 2014 about the important lesson DC and BB learned while riding the Santa Train.

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Lessons learned on the “Santa Train”

train

(Code word of the day: “Supplement”)

The other day, I read a post from one of my favorite bloggers, Autism-Mom. The post, FEELING THE MAGIC was about her son questioning the existence of Santa Claus. Give it a read if you have a minute, it is wonderful.

As parents, we all come to this crossroad sooner or later. It is a sad milestone. It begins to be difficult for them to understand and believe in something that they can not see. Sure we see Santa and his helpers quite often during the months before Christmas, but never during his Christmas Eve deliveries. This causes our children to question his existence. Why can’t they see him? Why must they be asleep? As I explained to DC, Santa has a job to do. If he took the time to stop and visit with the children in every house he delivered gifts to, even with his magic, he would never be able to finish in time to get back to the North Pole to celebrate Christmas with Mrs. Claus and the elves.

It took DC many years to understand Santa. He knew he would receive gifts, but the whole idea of Santa was not something that could be understood easily. His not understanding, did not stop Santa from leaving him gifts.

When it finally clicked and he did finally get it, he was all in! Now that he does understand, he would never and will never question his existence.

The one problem was, DC ‘s Christmas requests have always been small (in size) gifts. Santa could very well bring him 20 DVD’s, but the pile of gifts (visually) would be very small. DC doesn’t understand cost/size vs. number of gifts. He expects a very big pile of gifts. So, over the years I would always “supplement” the Santa pile with gifts of my own.

Being a single mother for more than 20 years now, I am the sole “supplement-or” (yes, I know that is not a word) of DC’s gifts. Which means I not only “add” to what Santa brings just to make the pile look more exciting for DC, but I also, of course, have to buy additional gifts from ‘Mom’. This gets to be a little bit overwhelming for me, not only in cost, but in trying to come up with other gifts ideas to make that “pile” he needs to see.

Now that DC is an adult, and the items he asks for are smaller still, it is becoming harder and harder to “supplement” Santa’s  gifts, to make that Christmas gift pile”,  I did finally have to confess to him that some parents, with adult children, have to help Santa out a little bit. Santa has so many little children to deliver packages to on Christmas Eve, that it is hard for him to get to everyone. So now that the is an adult, Santa only delivers his stocking and the rest of the gifts in his pile are from Mom. Santa always did a pretty good job with his stocking, by the way. He was fine with this. As long as Santa is coming, even just to bring a stocking, all is well.

Coincidentally, the morning I read the post from Autism-Mom, was the day that DC, his best friend, BB, BB’s Dad, Doug and I were going to take a ride on the Santa train.

Earlier this week, BB had just been told by one of his other friends that he was too old and should not still believe in Santa. He was upset by this, but BB knew better. He knew he was correct in believing.

Both DC and BB were very excited about riding the train. They always have the best time when they are together anyway.

stst2

Santa boarded the train a few minutes into our trip. He received more hugs that he expected, I imagine.

BB mentioned to Santa, what his friend had said to him that week. Santa took a little bit of time to talk about it with BB and DC.

(This video below is very poor quality – it was dark on the Santa train, but you can hear some the conversation and Santa’s advice to BB)

“Those who don’t believe, well they are the one’s that are missing out” ~ Santa Claus

So there you have it, straight from Santa’s mouth. BB felt much better. He knew it before but now he really knows that he was right all along…

 

 

 

 

 

 

 

 

Devil Dogs, Root Beer and Memories of the Training School

I read a blog post recently which brought back some memories for me. The post, a good but sad read, written by Erik Weiner stayed with me for days (read the article here), as it reminded me of my step uncle’s brother, whom I met only once when I was young.

I am guessing that I was about 9 or 10 years old. One day, out of the blue my parents told my brother and I that we would be going out with our aunt and uncle. We had been sent to their house before for babysitting purposes but never for an “outing”.

They came to pick us up and we were told that we were going to take my uncle’s brother out to lunch. I knew my uncle had a sister. She lived right across the street from him and she and her family were there for every holiday. We were around her often enough to also call her Aunt and her husband, Uncle. Never had I heard any mention of a brother.

We pulled up to a very large building, really rows of buildings. My uncle went inside, while we waited in the car with my aunt. She told us that we could not go in because it wasn’t safe for us to be inside. I got a bit worried at that point.

I was and still am a terrible judge of age, but I am guessing that my aunt and uncle were somewhere in their 40’s. Eventually my uncle came out arm-in-arm with a man who seemed to be about the same age. They put him into the car, in the front seat between them. He was very excited to see us, it seemed, very excited – I was still a little bit afraid.

His name was Freddy. I don’t remember hearing him speak, I don’t think that he could. There were a lot of grunts and noises. He seemed so happy to be out and so happy with the Devil Dogs, his brother brought for him. I remember devil dog remnants being everywhere. My uncle was really good with him, which led me to believe that even though I had never heard mention of him and he was really not spoken about (that I knew of), this visit was not random. He was so good with him and prepared so for everything that I had to believe these visits were quite regular.

My aunt explained that Freddy was mentally challenged – of course back then they used different words, and could not take care of himself. This was why he lived at the “school”.

It did not take me long for my fear to subside and to warm up to him. I’m sure, now feeling comfortable and with my interest piqued, I asked far too many questions. I wanted to know what happened, how he got that way, why he didn’t know how to eat, why he couldn’t or didn’t talk. I don’t remember the exact answer I got to those questions, quite possibly because no answer they could give me would have been good enough of an explanation in my mind. It was probably that he was born that way.  This was confusing to me. I wanted to know if he lived there all of his life, why I never heard about him, why he didn’t come to family holidays, but was afraid to ask. I think this may have been my first experience with anyone with special needs.

We took Freddy for a drive and then stopped at A&W Root Beer for lunch. He really enjoyed that. A&W was close to the “school” where he lived so after lunch we drove back to bring him home.

I was glad that I has the opportunity to meet him. I really liked him. I am sorry to say that this was the first and last time that I ever saw him and I never heard him mentioned again. I didn’t feel comfortable asking about him but I always think of him when I see a devil dog or see an A&W Root Beer, or read an article like the one mentioned above and every time the “school” is mentioned. This was not residential housing or a group home, it was at the time, an institution, probably one of the few options available at the time. I believe it is still in operation today, whether or not it is still considered an institution, I do not know.

Now that  I am an adult, I understand that this is the way things were handled back then. This is where people like Freddy went to live. I also understand, after working in a convalescent home many years ago and from his reaction to us, that it probably wasn’t dangerous in the true sense of the word for us/children to have gone inside. It was probably more like the seniors at the convalescent home, who would get so excited, overly excited and sometimes frighteningly excited to see young children. I could be wrong about this, I have never been inside but that is the way I explained it to myself.

I am happy that I got over my fear quickly enough to enjoy the day with him.  I am sorry that times were as they were and parents were told that this was the only option for Freddy and people like him. I don’t know if Freddy ever lived at home, so I won’t say that this was the case with him, but it was the case with many children back in the day.

can say that Freddy did seem to be very happy and I developed a new appreciation for my uncle after seeing how kind and loving he was with him. I also imagine that Freddy might be the reason that my uncle always remembered DC on his birthday and holidays.

I can also say with certainty that I will never forget Freddy.

We sure do have some stories, don’t we?

stories

Last month I wrote a post All the….small things, based on a conversation with a friend of mine that included snippets from an old website we used to run. It turned out to be my most popular post in April.  As I was trying to get a few posts written and scheduled ahead of time to run while we were away on vacation and for the very busy week I expected after we arrived home, I decided to go back to the old website and post a few more snippets on an array of different subjects…. but mostly just plain funny stories.

“Some of the following blurbs are mine (DC was very young at the time) and some are from friends of mine”  but all of them show us that yes, we are all crawling in the dark at times – we certainly were back then and really still are to some extent – but there is always humor to be found. We might at times learn something valuable – but most of the time it is just plain funny.

More on Clothing Issues:

You don’t wear your clothes in the pool. If Mom says it’s okay to go in because we forgot the bathing suit (meaning it is okay to go in with your shorts on) you take off all of your clothes (in front of more than 20 people) faster than she can get up to stop you – and go in naked.

 You don’t wear your shoes in the water, so water shoes are out of the question.

You don’t go outside with your Pajama’s on, not even just to step out on to the porch to hold the door open for someone as they are pleading with you to hold the door while carrying the largest poinsettia plant ever grown. – Forget it if there happens to be a fire!

 Literally Speaking:

 My 6 year old plays on a T-ball league for children with special needs. The Coach, in his infinite wisdom, coaching a bunch of 6 year olds who have probably never played baseball before – continued to yell “Choke Up”. My son proceeded to clear his throat each time the Coach gave this direction!

A Kindergartner whose family was moving out of the school district mid-year, wrote a good-bye letter to her teacher. She wanted to tell her how much she will miss her. They had been working very hard on sounding out words in class so she sounded out her letter to her favorite teacher, Mrs. Sheat. She began with: 

“Deer Mrs SH#T”(use your imagination)………

 My son and I were in the kitchen picking out one of those little boxes of cereal to take on a long car ride.  When we came across “Honey Smacks”, he wondered out loud, “Why don’t they call those butt smacks – those hiney smacks…..?”  Needless to say I could not speak – I was convulsed with laughter – I had never realized that he thought the word “Honey” was “Hiney” all this time.  But I could see how he came to that conclusion after examining the picture of the cereal on the box!

butt2

 Random Funnies:

While driving to church at Christmas time, my daughter decided it was not fair that Christmas was only one day while Hanukah was eight full days.

“Mom, why can’t we be Jewish?”.

My second daughter piped in immediately “We can’t be Jewish! We’re decaffeinated!”

My son likes to help. At times he can become overly helpful……..like the time he removed all the bamboo stakes from the tomato plants (all twenty of them,) and put the stakes back in the shed where they belong, vines and all.

or…. the time he decided to “weed” the vegetable bed and pulled everything out – weeds, veggies, everything green –  then proceeded to dispose of them in the swimming pool…clumps of dirt and all.

He will also dismantle any rock wall I construct and move the rocks to their original pile in back of the shed.

Recently while grocery shopping I asked my son, to get me some orange juice. Feeling so proud that I would ask him – off he went (with his older brother just a few short steps behind him). As his brother watched in amazement, my youngest son climbed up into the cooler and stretched his arm out so far as if he was searching for something. When my oldest son came to his aid he asked “what are you doing in the cooler with your hand stuck in there?” His reply was “I’m trying to reach Florida”  – TV Strikes Again….

My son was dying to be in the Christmas play at our church. He got the part of one of the Three Kings.

Apparently he did not understand that he had to stand on the stage in front of the whole church when he took the part, until the night they were getting ready to perform. He tried to beg out at the last minute, but his father insisted that he perform.

My son searched for the largest crown he could find. When he took the stage, he stood there with the crown down over his face to his neck, throughout the entire play.

crown

Many thanks to all of my friends that contributed so many years ago.