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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“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.

I think there’s a form for that…

IMG_3636

Last week was DC’s 6 month review IP (no “E”, he is out of the school system) meeting. There are required reports that I have to fill out after each and every IP and review meeting  (partially because DC has afternoon staff until I come home from work).  Every report says just about the same thing, but still, I have to write paragraphs upon paragraphs of the same thing each time. Then, as I’ve written about before, there are the annual reports that seem to all come along all at the same time. Right before this IP meeting, I received a new report in the mail – A review to make sure that DC is still disabled.

The questions do not seem to apply to him at all. They seem to apply to a person who is on SSDI – Disability (someone who was once out in the workforce and now can not work due to an injury or an illness). I do not know how to answer any of these questions because they really do not pertain to him at all.

I was told that even though this does not have anything to do with him and it is for a type of disability benefit that he does not even receive, I still do have to complete the form and return it.

I was also informed that no, I could not just write across the page with a black sharpie “HE HAS AUTISM – IT DOES NOT GO AWAY!”

So off I go, to try to fill out another form that has nothing to do with my child, to prove that he still has autism for a benefit that he does not receive and does not qualify for (while waiting for the internet repair guy….. again).

While I do that, you all can feel free to read a post from 3 years ago (before I developed that aversion to opening my mail) about the very same subject; forms and inefficiency.

Does everything really need to be this difficult?

Please Note: The following is a rant, plain and simple; a rant, a vent, whatever you would like to call it. There is no moral to the story, no happy ending, no “Ah Ha” moment, no conclusions to be drawn (actually there are many conclusions to be drawn, but we won’t say them out loud) – just a plain and simple “I’ve had it” kind of rant.

For those of you who don’t have a child with special needs or have young children and haven’t had to think about the “adult” side of things, here’s how it works. I don’t know if it’s the same in every state, but this is the way it goes here.

When your child reaches the age of 18, depending on the severity of the disability (can he/she make decisions for themselves)  the parent is required to apply for guardianship of their own child otherwise they will not have the ability to make decisions for that child. The state views them as adults, period, and this means they should be able to make their own decisions, medically, financially, etc. (Paperwork, Probate hearing)

Due to budget cuts right around the time DC was to about turn 18, anyone not covered under Title 19, lost their case worker through Department of Developmental Services. DDS is where the funding comes from for their work/day programs after they leave the school system at 21.

This is the time in our children’s lives when you really need to have a case worker. This is when you have to begin looking for a program for them when they leave school.

Before you can apply for Title 19, you first have to apply for (SSI; not SSDI) Social Security (tons of paper work).

After you apply for Social Security, you can begin the application process for Title 19. I am fortunate that my case worker, Ruthie, at the time, was there to help with this. She came to my house and my friend who has a son the same age as DC, came over and we all did the paperwork together. If not for her, I would still be sitting in the same place trying to figure it all out.

Now we’re done, right? Wrong!

Every year I have to fill out the forms for Guardianship (when they come, sometimes they don’t) again – just to be sure DC is still disabled. Not a big deal, just annoying. But seriously, he has autism, it doesn’t go away.

There is an annual report for Social Security as well as an audit or two during the year “just because”. And….. now that he is in a work program and makes a tiny bit of money, I have to remember to call in during and only during the first 6 days of the month to report his wages for the previous month to Social Security, so they can reduce his monthly payment appropriately.

Also once a year we receive the annual Title 19 redetermination, which is basically as much paperwork as the original application. I’m not complaining, I can live with all of this, but it is a LOT of paperwork!

Complaining begins here:

Now, I may not look like the most organized person in the world, but I do get all of these things done, on time, always!

DC’s redetermination was due on July 20. On July 16th I mailed a giant package with the application, the year’s worth of check stubs, his last bank statement and insurance cards – everything they asked for in the instructions. This was the fist time filling out a redetermination since he had begun working.

Done! PHEW!

Wrong again!

On Monday, August 26th I received a letter from DSS that his benefits had been discontinued because I did not complete and return his redetermination! There was a form included so I could request a hearing. This form had to be completed and returned by August 30th – in four days!

“Calm” was never and will never be a word used to describe me, so the next morning a dragged all of my “books” to work to re-copy all 43 pages of his redetermination, because at this point I can’t think about anything else.

First, I decided to try to call the number (silly, yes I know). There was really no menu item that described this situation and no way to talk to a person, so I moved on to faxing the hearing notice and the copies of the redetermination to the number provided. The fax was cutting out and disconnecting and after I don’t know how many attempts, I gave up trying to fax it all.

Knowing this was going to take more than a fax at this point, I took my lunch break at 9am so I could copy all of these forms, check stubs, insurance cards and bank statements. I decided I would mail one copy to the local office and the other to the address that was on the hearing notice. Two more giant packages in the mail – Done!

I was not confident that either of these packages  would ever be seen by anyone, as they never received the original and having only 3 days now to request a hearing, I found different phone # in all of my 3 ring binder records and tried again to call. Fortunately, I was able to put the call on speaker and do some work while I waited otherwise I’d be putting in for vacation time to finish all of this! Unfortunately, all of my co-workers had to listen to “Your wait time is…. more than 20 minutes” over and over again.

An HOUR and 9 MINUTES later (just a tad more than 20 minutes), an actual person picked up. I explained the situation as calmly as I could.

Her reply was: “Oh, we’ve put a new system into place where all the redeterminations go first to our scanning facility and are in-putted into our system for us to work on. Because the system has been up and down and they are very backed up, we probably do have your original redetermination and we have extended everyone’s deadline to November 20th. His benefits have not been cancelled.

Seriously? It may have been more effective to put THAT in the letter instead of telling me his benefits were cancelled and I only had 4 days to do something about it!

Those that know me can imagine where the conversation went from there, so I will spare all of you the details.

End result, she gave me her fax # and I faxed another 43 pages directly to her.  She did explain that she is not the person that would be working on my son’s case, but I wanted them to go to SOMEBODY.

So at this point, there are 3 packages of my son’s information floating around somewhere and one more in the hands of this person who has nothing to do with my son’s case.

She also informed me (after receiving 43 pages) that they really only need the last 4 pay stubs. Hmmmm….. Maybe the redetermination instructions could say that!

So….

  • They lost his original packet (but maybe not, we may never know)
  • You can’t talk to a person at the number they provide.
  • They mailed letters to clients telling them their benefits were cancelled. (The person I spoke with said they received 1500 calls that morning)
  • They extended the deadline without bothering to tell anyone (This would have been something to send a letter about –it may have gone a long way to reduce the amount of calls they received.  And really, nobody at DSS found it odd that 1500 cases were being cancelled at the same time, due to non-completion of their redeterminations? – Somebody had to MAIL all of these letters!)
  • They sent a hearing notice to return by fax within 4 days with a fax number that clearly doesn’t work.
  • And I still don’t know if anybody that actually works on his case has his forms at this point.

.

I feel like there was nothing accomplished here and there was an enormous amount of wasted time on both sides.

I suppose I will be in the dark until I get my notice in November.

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.

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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.

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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.

If you knew…. Peggy Sue..

DC is not always a fountain of information. Most of the time it is very difficult pulling information out of him.
A few weeks ago, he left for his volunteer job at a local theater at 5:00pm (with his job coach, Mrs. H.). Volunteers have to arrive 2 hours before show time to put the programs together for that performance and to get their assignments for that evening. DC is almost always assigned as a greeter – he passes out the programs to the audience members as they walk in and recites his line “Enjoy the show”.
At the beginning of each season, when I have to pick the dates he is available to work, the name of the show is not available – probably because they do not want the volunteers to choose only by what show they may want to see. I also have to work around his schedule and Mrs. H’s schedule, so I am really just looking at dates and nothing else. This particular show, as it turned out was Alton Brown from the Food Network. When their beginning of the show greeting duties are over, many times the volunteers are able to sit and see a good portion of the show.

At 9:45 I received a text from Mrs. H. I assumed it would say that they were on their way home, but no…. it said “We’re still here”. They finally arrived home at 11:00PM – After being there for 6 hours, the only information he gave me was:
“A man making ice cream” – that was all he had to say…
My friend Bill responded to my non-information post with:
“I LOVE it, with all that Alton does and his wild energy, DC found the most memorable part of Alton’s show! You could start a new Blog called “DC’s Cliff Notes of Live shows at the theater!” I love how our guys and gals simplify what they see and hear into something that is truthful & concise!”
So true….. and I may just do that, but the reviews just may be very short.

DC, his best friend BB and I had tickets for the Buddy Holly Story yesterday. DC did work the performance the night before, but he was excited to see the show again with BB.

On Saturday morning, DC was concerned due to all of the snow that had already fallen (5 inches) when we woke up:
tembling

Despite the snow, we made it.

They both just loved the show. They had a great time.
buddy holly

This morning, DC was full of information and chatter about the ‘wonderful’ time he had yesterday. I was there but he was determined to tell me about it anyway, and I’ll take it…. it was unprompted information.

So in DC’s words, his review of his day:

I had a nice time last ‘even-ing’.
I went to see Buddy Holly Story with my friend BB.
We danced and danced and danced.


We had a scared of fright – jump up – PHEW!
America the Beautiful favorite song.
I went to dinner and Donna and John and Mom – me too!
Perfect!

Translation:
“We had a scared of fright – jump up – PHEW!”
Fortunately we had box seats as DC jumped up as if he could not control himself any longer, to dance. I mentioned to him later that he scared me because he jumped up so fast. He was using part of his favorite phrase “You gave me a fright” from the Lindsay Lohan version of the “Parent Trap”.

“America the Beautiful favorite song”
DC does have a love for all patriotic songs. He even has a sign language dvd of only patriotic songs, but I suspect that he chose it as his favorite from the show because it was really the only song he was familiar with.

“I went to dinner and Donna and John and Mom – me too!”
Because the snow was supposed to be much worse than it turned out to be, BB’s mom offered to drop us off as her car is much better in the snow than mine is. We all went out to dinner afterwards.

So there you have it, DC’s review of his day. I know he had a great time as he is still talking about it.

As for the “blind scheduling” method for volunteers at the theater, I just received DC’s schedule for the second half of the season. The first show he is scheduled to work is “50 Shades, the Musical Parody”.

I think DC and Mrs. H will be hanging out in the lobby for that one………….

Not so “literally speaking”

We all know that DC is very literal (see Literally Speaking)  in his speech and way of thinking. Aside from his black and white,  no-gray-area way of communicating and understanding and his just one mumbled word responses, his manner of speaking is at times very formal, for lack of a better word. Much of his language stems directly from the many books he reads and movies he watches.
He calls the cabinet a ‘cub – board ‘ <cupboard> (emphasis on ‘board’), not because he thinks it is funny,  because that is what it is. That is what he’s learned from his books.

For example, when he knows I happen to have a Friday off from work and he wants me to come to lunch at his program –

“*Vickie, would you be so kind to join me for lunch on Friday at <insert the name of his program>” ~ the whole name please, not the Acronym used by the everyone else ~

 –  (*yes, he calls me Vickie from time to time. In his mind, he is an adult and that is what he should do. It does not bother me in the least. Last night, for some reason, it was “Ms. <Last name> and that is fine too)

He does ask me from time to time, what a word means, not that he will incorporate the word into his vocabulary, he would just like to know. Every once in a while he will make a connection with one word and other in his head. I am always in awe when he manages to do this on this own. This seems to be happening much more lately.

For many years “Wonderful” was his choice when he had a good time or liked something very much. He has started replacing “Wonderful” with “Terrific”. Not a huge deal, but he figured out that it means the same thing and it is a little less formal than “We had a wonderful time”.

A few weeks ago, I was telling DC that we were out of something, I don’t remember what it was at the time, but it was something he was expecting to have for dinner. I explained that we were all out,  it was my mistake, I didn’t know we were out (things tend to go over better with him when it is my fault :).

His reply???

“No problem”

NO PROBLEM!!!!!!

I have never heard him use that phrase, ever. Somewhere along the line he figured out what it means and used it appropriately.

A while back DC and I were having a movie night. DC was waiting in the living room to watch “Maleficent” and I was in the kitchen getting the pizza ready ~ actually I was in the kitchen bleeding all over the counter trying to find a Band-Aid. Not an easy task with “Mr. Band-Aid” in the house – but that is beside the point. Searching for a band-aid box that was not full of band-aid wrappers but no band-aids and mumbling under my breath –  from the living room I heard; “Gee, I wonder what Vickie is up to”.

GEE????

IS UP TO ???

I wrote that one down as soon as DC brought me a Band-Aid from his hidden stash.

In my last post you may have heard “We have to get moving”.

GET MOVING  instead of  we have to go!!!!

I asked him to help me open a Peanut Butter jar – he tried, but he could not get it to open either.

“It won’t budge”

BUDGE?????

Let’s not forget the day he was “in sympathy” for sneaking chips. There have been so many more, but you get the picture. It throws me a little bit every time he comes out with a new one, but it is exciting. It shows me that he is paying more attention to what goes on around him and he is listening to much more than he lets on.

There are still many literal, black and white moments and DC still very rarely refers to himself as “me”.

Recently at a Best Buddy walk, both of his Buddies asked him where he got the Star Trek shirt he was wearing…..

“DC’s room”