He was right next to me

It happened a few weeks ago…..

DC wanted to make pizza. “Making” pizza means opening a ready-made crust, adding sauce, ‘sparkling’ cheese (Veggie grated cheese), garlic powder (because he is obsessed with garlic) and pepperoni.

We do this often and DC helps with quite a lot of it.

I had opened the crust and the sauce. DC spread the sauce around the top of the crust and sprinkled his garlic and cheese all over it. I got the pepperoni out of the refrigerator. It was already opened from the last time we made pizza. I buy the pepperoni already sliced in a bag, because I buy turkey pepperoni and I really haven’t seen it in any other form, and it is just easier.

We have about 4 feet of counter space to work on with almost 2 feet taken up by the microwave, so when I say that “I was right next to him”, I mean right next to him. Our arms were probably touching.

He was putting his pepperoni on his pizza and I was putting something in the microwave. I looked over and saw him with the scissors holding one of those anti-moisture packs (silica gel) over his pizza, ready to cut it open and sprinkle it over his pizza. It must have been in the pepperoni pack.

You know, those packs that say “Do Not Eat” and “Throw Away”? Yes, those.

I have read up on them more since this incident and have found out that they are not poisonous and probably will not hurt you unless eaten in large quantities, but the fact remains that the “Do Not Eat” and “This is not food – Throw Away”, would lead one to believe that they are poisonous and harmful. I have always believed that to be the case, so much so that I have talked to DC about them before. They are always in his juice mix. I usually get to them before he finds them but I have talked to him about them many times. Finding one in his pepperoni did make a connection in his mind to the discussions about the packs in his juice mix. It is two different things. We talked about juice, not pepperoni. **

That day (still believing that they were dangerous) I was beside myself. I went over it and over it with him. He laughed at first but when I burst into tears I think he understood that this was serious (but not understanding why) and am pretty confident that he will not touch one of those again.

It haunted me for weeks… finding out that they were not dangerous as I had always believed did not make me feel any better. He was ready to eat some strange thing. He did not know what it was but he was ready to eat it anyway (How does that even happen when there is such a limited number of foods that he WILL eat?).

DC does not just “pick up” on information (see: A Chair is Still a Chair) he has to be taught – he has to be shown. After the teaching and the showing; if he still does not understand, I have to resort to making a rule.

I resort to “rules” when I know something is beyond his grasp.  (Oh! The rules I have had to make!). Please don’t tell me that I am not giving him enough credit. I try and try to explain in many, many different ways and I do not give up even after the rule is made, but his safety has to come first.

He knows what rules are.

He follows rules.

He does not have to understand the rule – it’s a rule so he follows it.

Many times, rules are the only way I can keep him safe.

He follows rules; that is a good thing.

The downside of this is that – he follows….

If someone with not the best intentions were to tell him to do something – he would. He is following directions and aren’t we supposed to follow directions? Isn’t that what he was taught to do? If someone tells you to do something, you do it – right?

There are no gray areas.

I remember being at a relative’s house when DC was little. He was sitting on the floor and had gotten hold of a plastic bag. When I took the bag away from him a family member said “He’s not going to put it on his head and suffocate right in front of us, you know.” Yes, I did know that but if he was going to learn not to play with plastic bags then I couldn’t let him play with plastic bags. Period. There is not a “sometimes you can” category  It is either you can or you can’t, with DC and the rule was “he couldn’t”.

I cannot teach him to follow my rules but not to follow other’s rules.

I cannot give him a list of whose rules he should follow – teachers, his boss, his staff, police, etc. because there will always be something that comes up that strays from that list.

DC knew I was very upset about the pizza incident but again… he did not understand why.  Very often, he does not understand things unless they happen. When I told him that he could have gotten very sick, it did not mean a lot to him. Sick means a cold, sick means the flu, sick means a ‘heady-ache’ and nothing more serious than that.

He looks both ways when crossing the street but I do not always believe he is really LOOKING at anything. Most times he is just going through the motions, which is why he never crosses the street alone. He does not understand what can really happen if he were to be hit by a car or if he was involved in any other sort of accident. He does not understand unless it happens and as I do not want any of these things to happen, I have to just keep finding different ways to explain safety to him and making rules.

There was this one time that DC (before he had his own laptop) was eating in the kitchen watching something on my computer, which was on the other side of the table. I was 10 feet away in the living room. I heard him get up quickly and I knew something was wrong. He was choking. But he did not jump out of his chair to come to get me. He jumped out of his chair to run to the other side of the kitchen to pause the movie BEFORE he came to get me! (I came running when I heard him jump up, but the fact of the matter was that he was more concerned about his movie than choking. He knew something was wrong and he was panicked but his movie came first.). If he hadn’t been able to get whatever was lodged in his throat up by himself, would he not let me help until his movie was paused? I honestly do not know.

He just cannot understand the “why” of things.

Why should he get help before pausing his movie?

Why can’t he walk into the road?

Why can’t he eat the moisture pack?

Why can’t he talk to strangers? And what IS a stranger?

Someone he doesn’t know?

——-Why can he say hello to all of the people he doesn’t know when we walk on the trail? Aren’t they strangers?

Why can’t he stick the knife or a fork in the toaster?

Why can’t he put his hand on the stove when it’s on?

Why can’t he run with scissors, play with knives, stick things into electrical outlets?

Why?

But there is no way on earth that I can come up with every single thing that might happen or could be dangerous. If he understood the “why” of things it might be easier for him to see the danger in some things without having to have everything explained to him.

So I have to keep him close to me and hope that when he is out of my eye shot, the people who are charged with keeping him safe will keep him just as close.

But then again, in this case…. he was right next to me….

****

 

 

 

**Please do not take this post as a be all end all about moisture packs being safe. I looked into it and that is what I found, BUT I am sure there are exceptions. Always call poison control or seek medical advice if they happen to be ingested.**

 

 

 

 

 

 

 

 

 

 

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Autism in the Old Days: The Spectrum, Cures and Treatments

 

(This post and it’s counterpart “Autism in the Old Days: Diagnosis via St. Elsewhere” are written strictly as a remembrance and as a comparison about how times have changed and how much in the dark we were as parents back when DC was diagnosed. It is about all of the things we did not know and how differently things are handled today. But over and above all of that it is about the slow process to the realization of not necessarily having to follow every direction laid out in front of us, just because the presenters, be it doctors, teachers or therapists,  are supposed to be the ones that knew better. Having to figure out for ourselves that the way things were presented and taught to our children and us, as parents, was not always the best way to go about things.)

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Back in the “Olden Days” (when we were all walking uphill in the snow to AND from school) when DC was diagnosed (the early 90’s) there was no internet to speak of. There was little information about autism readily available to parents. Yes, there were a few books that I’m sure every parent owned, but really not much else. We had to depend on our doctors and the school system.

One of the first books that I read was a book called “Let me hear your voice”. I remember that even though it was a book about “One family’s ‘triumph’ over autism”, it did not offer a lot of hope. Their child was diagnosed early; at one year of age. They had the resources to provide in home intensive behavior training, something that I would never be able to do.

As I mentioned in my last “Autism in the Old Days” post, DC was not officially diagnosed until he was 5, not for lack of trying, so the other theory that was in wide circulation at the time was that before the age of 3, a child’s brain could be retrained. If you missed that window, it was too late. I missed that window, again not for lack of trying.

I remember when DC was about 6 or 7, I was going on vacation – the first in years. He was going to spend the week with his Dad. I was anxious enough about that – not that I did not trust his Dad, but because I had not been away from him for longer than one of his overnight visits to his Dad’s – ever. But I also remembered that book. I remembered how the author went away on a four-day business trip and her child did not know her when she came home. I had to be talked into going by many, many people and still I really did not want to. I went and of course he knew me when I got home and all of that worry was for nothing. But this is what happens when you have to depend on little bits of information and are pretty much on your own trying to figure things out.

Back in the “Olden Days” there was the Lovaas Method. Yes, I had that book as well. Now-a-Days it is known as ABA. Again, this behavior training had not made its way into the school system and, like in “Let me hear your voice”, most folks that used this method had the resources to do this at home, 40 hours per week. I was a little bit leery about the whole thing. I thought a lot of it was harsh and really just cherry-picked a few ideas here and there from the book. (This is in no way an opinion or a judgement about ABA. I know that it has evolved over the years and is probably nothing like the original offering). It was quite a few years after DC left early intervention that the school system trained staff and designated a classroom to ABA.

Back in the “Olden Days” there was no spectrum, that we knew about anyway. Autism was Tommy Westphall, Rain Man and Bernard Rimland and his son (Autism Research Institute)  We knew about no one or nothing else.  These, our only examples of Autism, also did not offer parents much hope.

In my quest for information I remember attending a few seminars early on. One in particular given by a woman who spent many years as a Special Education teacher. A woman who I had met in a sign language class, who worked with autistic children, recommended this particular seminar and attended as well. The seminar was supposed to be about the progress that was made by many of her students over the years.  It certainly was not. I recall one man standing up and saying “You are not offering us very much hope here!” and she was not. It was all just gloom and doom, so much so that the woman who recommended it, apologized profusely to me afterwards.

That was the last seminar that I ever attended.

Now-a-days we are bombarded with “cures” and causes on a daily basis. Back then, if something hit the news, it was a big deal and please remember that we were programmed to believe that there was really no hope and that we were supposed to be looking for a cure.

In 1998 came the “Break through” in the treatment of Autism. One mother brought her son in for gastric/digestive testing. Secretin was administered as part of the test. Internet was now available but still not widely used as it is today. I don’t believe I even had email until 1998, never mind being able to figure out the rest of the internet.

“Media reports of an individual child’s dramatic improvement after a single dose of the hormone secretin administered during a gastrointestinal (GI) procedure (Beck and Beck 1998) appeared on television and the internet.” 

They were touting a cure. I did not even hear about this until I began receiving phone calls from friends, family and almost complete strangers. I have to admit that although we were still being programmed that a cure was the only thing we should be looking for, I was a little bit afraid.

I do not believe I have ever said this to anyone other than Sandy, my boss at the time, who made the mistake of asking about it and then had to listen and watch me bawl my eyes out because I felt guilty that I was afraid of this. What if it was real? How could I not have him treated? What if after he was treated and “cured”, I no longer had the same child? I felt guilty and felt selfish for even thinking those thoughts.

That being said, and I do realize that I have said it to the point where I should just make it my blog header:

My feeling of never wanting to change him has not changed, but he is older now and I worry about the future every single day.

If I haven’t said it a hundred times, then let this be the hundredth; if I were to live forever, I would not change a thing about my son. He’s happy almost all of the time. He loves his life. He is in his own little happy world, but he won’t always be able to live in his own world, he will someday have to live in the real world. Then what?”

****

Even with all that DC has accomplished over the years, the bottom line is, he will never be able to live on his own without full support. He will never be able to take care of himself. He does not understand safety. He does not understand many many things. He has no siblings and will long out live all of us. He will at some point have to live in some sort of group home type environment with strangers and no one to look out for him. Dependent on strangers. At the mercy of strangers.

 

It was a confusing time for many of us. Now-a-Days, when something like that happens and we hardly blink an eye…

DC accomplished far more than I ever anticipated he would, despite the “no hope scenarios” we were offered way back then. Much of his accomplishments came when I got to the point when I stopped reading and listening to the way it is supposed to be done and did what I thought was best. We all hit that point eventually.

I had to learn on my own, to choose my battles and understand that he does not HAVE to learn to do everything that other children his age can do.

If he can not learn to ride a bike (and why the hell was that so important at one time?) then he can not learn to ride a bike. He has an adult trike and he is fine with that.

If he can not learn to tie his shoes, they sell Velcro now.

This is not to say I gave up trying to teach him things. It’s just that I let go of the things that are really not important. I let go of the mindset that he has to be like every one else a long time ago.

Because he doesn’t….

*******

The therapies and theories written about in this post should in no way be considered as recommendations or as proven theories.  Like today, new theories and treatments come along every day (we had much less of it due to the lack of internet) but this does not mean that any of them are tested of proven. This post is about DC and I and what was going on around us at the time regarding autism.

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Next Installment: Autism in the Old Days: Spinning and Stimming 

 

 

 

 

 

Revisiting “Feeling Chastised”

The following was written a few years back. It was written more about the discourse  within the autism community and not about autism awareness or acceptance. In actuality, I suppose it could be looked at as a piece supporting  the awareness, acceptance and respecting the differences in the ways parents view autism. There is far too much hostility.

I am re-posting now, in this, the month of April. With all of the added awareness and supposed acceptance that has taken place over the last few years, really not too much has changed in this, our little corner of the world, or in my friend’s corner of the world. Not very much at all.

If anything; things have become more difficult….

Dear Abby – Feeling Chastised in New England

Let's all celebrate

Let me just begin by saying that since I began writing this blog I have had the pleasure of meeting a few Autistic Adults.  They are amazing individuals that do a great deal to raise awareness about autism. I “speak” with one in particular often enough to consider him a friend. He is a wonderful human being and it makes my day to “talk” with him or just read his posts. He is truly an inspiration to parents of children with autism, other teens and adults with autism. But above all that, he is a glowing example of the good things that can be found in today’s young adults in general. I don’t think of him as having autism, I think of him as my friend, plain and simple. I’m honored to have him as my friend.

My son’s autism or level of autism  is not like my new friends’. Autism affects each person differently.  Therefore, parents should not be made to feel inferior or chastised for their own beliefs. Everyone is different, everyone. There is no right or wrong when it comes to autism, just a lot of people arguing with each other, it seems.

Today I received this private message on my face book page from a friend of mine who is pretty much in the same boat as I am “level-wise”.

The fact that she did not feel comfortable posting it publicly, speaks volumes about the environment we find ourselves in with the hostility that she (and I) knew would have ensued had she posted it publicly.

(The following message is used with permission. The names have been changed to protect the innocent)

Dear Abby (Vickie)…I think I’m missing something. Why is it wrong to feel like I’ve lost something in having an Autistic son? Why are we supposed to not want a “cure” or something that helps them handle this world we live in a little better? I look at the video of Bob from birth to 18 months and there were signs, but he was still there. It was June of 1996 – he was 18 months old – all of a sudden he disappeared. He is lost to me. He will never have a normal life. He will constantly need care and supervision. There are many people that are on the much higher functioning side of the spectrum that can navigate the world today. Bob is not one of them. Why am I supposed to not want that to be different? People say you don’t miss what you never had – but I know what could have been. I know what life he could have had and now for sure will not. He will find happiness somehow; he will be as productive as his disability allows him to be. But the sky is not the limit for him. The opportunities for him are not the same as they are for my daughters. Why am I supposed to celebrate that? With all this  hullaballoo about celebrating autism over the last few months, I’ve been feeling like a minority. I think these kids are lost – lost to the life that could have been, lost to the possibilities that would have been. I feel they have a disability because they are “not able” to process and handle what happens in life the way others do. Why are we getting lost on the rhetoric? Am I missing something Vickie?

Feeling Chastised in New England

I have said this many times and in many different ways:

  • I celebrate my son as an individual
  • I celebrate my son because he is my son and I love him more than words could say.
  • I celebrate his accomplishments, no matter how large or small they may be.
  • I celebrate him because he is wonderful.
  • I do not celebrate his autism.

I write stories about my son because:

  • He is wonderful.
  • I’m very proud of him.
  • I’m very proud of his progress.
  • He makes me laugh every day.
  • He makes me smile every day.
  • He makes me worry every day.
  • I believe these stories shed a little bit of light on autism and the way his mind works – not all autism, but his.

I don’t believe anyone should be made to feel “less than”. I don’t consider my son “less than” but there is an issue. There is that life he could have had. Maybe it would not have been a better life, maybe it would have been, but at the very least he would have been able to understand it and navigate through it.

Celebrate Autism? I can’t do that. Maybe others can, but I cannot celebrate his level of autism.

Individuals should be celebrated, not the diagnosis.

Like “Feeling Chastised”, my son will never be able to live on his own. He will never be able to take care of himself. He will not know when/if he’s being taken advantage of. He does not understand danger or safety. He is verbal but really not able to communicate if something might be wrong.

My suspicion is that many of these parents in celebration have younger children or children that can function at a higher level than mine. They still have hope of great progress, and they should have hope, there is always hope. I still have hope for more progress, but living in the real world I know that even though he continues to make progress, none of the issues listed above will improve enough that I will not spend every day and night worrying about what will happen to him when I am gone. This is the stuff our nightmares are made of. What’s going to happen to them when we’re all done celebrating autism? Our “kids” are going to outlive us, people. Who’s going to take care of them? Will they be cared for in the same fashion that we have cared for them?  How drastically will their life change then? Think about it.

If I haven’t said it a hundred times, then let this be the hundredth; if I were to live forever, I would not change a thing about my son. He’s happy almost all of the time. He loves his life. He is in his own little happy world, but he won’t always be able to live in his own world, he will someday have to live in the real world. Then what?

When your child with Autism becomes an adult with Autism and your own mortality begins to slap you in the face, come back and talk to me then about this celebration we are supposed to be having.

Those of us with adult children that will not be able to live or navigate the world with out constant support, that have been in the trenches for many years, long before there was a “spectrum”, long before there were many of the services available today, deserve a little bit of respect and deserve to be able to voice our opinions as you are allowed to voice yours;  to want something more than a celebration.

I believe in raising awareness. I believe in trying to make people understand Autism. I believe that INDIVIDUALS and accomplishments should be celebrated. I also believe some of us need more than that.

My only wish is to be able to die in peace knowing my son will be okay…….

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.

There’s Still More! (Seriously, there is!)

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We are about to venture into the ridiculous….

If you read my last post you will know that I because of an account I had, I was required to pay back Social Security $12,000.00 in benefits – which I knew was dead wrong.

It took them all of 4 days after receiving the account information and the spend down documentation to send me a letter informing me that I had to pay back a year and a half of DC’s Social Security benefits in the amount of $12,000.00.

After sending two appeal forms and hearing nothing I finally got to talk with someone (On December 17) who informed me that the issue was disposed of! They were very quick to let me know I owed them a large sum of money but very lax in notifying me that the case was disposed of. Understanding the incompetence of this agency, I asked for a letter verifying that fact. I was assured that a letter was going out that day.

In the meantime, I was notified that my step-father, without my knowledge and against my expressed wishes, made DC the beneficiary on a small life insurance policy in the amount of $1500.00. He is not allowed to have more than $2,000.00 in resources at any one time. $1,500.00 is less than $2,000.00, you say? He should be all right, you say? No! That is not how it works. To determine his resources, they take the highest amount of money in his account for the month and add the extra resource to that (If he did not have an account, then they just take the amount of his monthly check and add from that). The highest balance will always be the amount of his Social Security check, so it will always come up over $2,000.00, not by much but it will be over (a friend of mine’s son had his benefits suspended for a .20 <twenty cent> overage).

And Hey! – Fun Fact!

If you would like to be called stupid, hysterical and be screamed at by everyone that you know and are related to, just have something like this happen. It is just fun, fun, fun.

Just to answer all of the “questions” asked “very loudly” of me (because everyone else without adult children with special needs knows better, you know).

No! I cannot just not accept it because the insurance company is required to report it under his name as abandoned. This means that his benefits will be suspended until I spend it down (without actually having the money because I did not accept it) and will still be on the hook to pay back whatever amount they determine I should pay.

No! I cannot take it and deposit it in an account out of state, because the act of taking it makes it a resource. It does not matter where it goes.

No! I cannot deposit into his Special Needs Trust, an Able Account or a Burial Fund, unless his trust etc., was the designated beneficiary to begin with. Yes, depositing it into one of those places MAY qualify as spending it down, but it would still be considered a resource because it was paid out to him BEFORE going into one of the accounts mentioned above.

My step-father’s executor gave the insurance company my contact information. The insurance company, because DC is an adult, needed his guardianship papers so that they could legally talk to me.

Yes! I do have to send them his guardianship papers! We, as parents of special needs children HAVE to go to probate and become the legal guardians of our children when they turn 18 because in the eyes of the state and federal government – special needs aside – they are adults, and should legally be able to make decisions for themselves. If I were not his guardian, I would not be able to talk to his doctors, meet with his day program, chose a day program, make appointments… you get the picture. Bottom line is that HE IS AN ADULT AND BECAUSE THE POLICY WAS IN HIS NAME, THEY ARE NOT ALLOWED, LEGALLY TO TALK TO ME ABOUT ANY OF THIS WITHOUT HIS GUARDIANSHIP PAPERS!

Yes! They could make me pay back $12,000.00 over $1500.00 – they tried to have me pay back $12,000.00 over $2,600.00.

Even though I knew all of this (because I DO know things), I contacted an attorney who verified everything I just wrote.

He also said that I could actually use some of his monthly expenses as part of the spend down.

I already knew the drill, but he advised me to report it as soon as possible. As soon as I received the check (on Dec. 24th) and a copy of the policy I called SS (on the 27th, the first day they were open after the holiday) and reported it. Since I was able to use his expenses as part of his spend down, I was able to fax that and all of the account information to the number I was provided, so at least his SS would not be suspended until  they determined how much I had or did not have to pay back.

Not having heard a thing by January 25th I called again. This time I was speaking with a man, who I was familiar with, not personally but via people that I know that have had to deal with him, so I was on guard. First, I explained about the appeals and that back on December 17th I was told that the first situation was waived and has been promised a letter verifying that.

He went from zero to 100 and screamed “IT WAS NOT WAIVED!” – I began to panic (this is why I wanted a letter. I wanted it in writing). I explained again that I was told that it has been waived and that I would receive a letter stating that.

“IT WAS NOT WAIVED, IT WAS DISPOSED OF! IT WAS DETERMINED THAT IT WAS NOT A RESOURCE AND YOU DON’T GET A LETTER FOR THAT!” 

At this point, all I could think of was the Soup Nazi “NO SOUP FOR YOU!” but I remained calm, trying not to laugh and explained that this did not make any sense. If I had not called that day I would still be waiting for an appeal date. Why would they not send a letter notifying me that it was waived (there’s that word again).

“IT WAS NOT WAIVED AND YOU DON’T GET A LETTER FOR THAT”.

If someone told me this story, I would definitely think it was a joke or Alternative Facts, but it is not. He was acting as if it was somehow my fault that THEY were wrong and I was now being punished with “no letter for that”.

I repeated again that this did not make any sense and would it not be common practice to notify someone that the issue was “disposed of”?

One more time, he yelled that “YOU DON’T GET A LETTER FOR THAT! YOU WERE GIVEN THE WRONG INFORMATION! Since he seemed incapable of talking to me without yelling at me, I asked for a supervisor. He put me on hold and instead of a supervisor, he came back and said I would be getting a letter for my records.

Next I had to ask him about issue #2. Had anyone received the faxed information regarding that second insurance issue? I just wanted to be sure that someone received it because it was reported and I did not want them to suspend his benefits because they had not received the information with the spend down. Surprisingly enough, there was no more screaming.

He did not see anything in the records, but he said he would transfer me to the person that would have received it. Of course, I got voice mail and to my dismay it was the same caseworker that I had to deal with during the earlier issue.

Did I get a call back? No I did not.

After a week, I called back and left another message. This time she did call me back and – Oh, how nice and sweet she was! I am sure she was hoping that I would not bring up the first incident.

She told me that she did receive the information but she had not had a chance to go through it. I would be notified if she had any questions or if there would be any benefits to pay back.

Being that it is now the beginning of March and they only took 4 days to charge me $12,000.00 the first time, I am cautiously optimistic. Because the account was something that I had no knowledge of and I reported it, spent it down and got them all of the information they required within days of receiving it (not to mention the fact that I already had to spend $2600.00 of my own money due to their “error”), I am hoping that the spend down was enough and this would be the end of it.

– Cautiously optimistic.

I have done everything I was required to do and I verified that someone had received everything, so I am done! I will not be calling anyone to check on the status and if, in fact this is the end of it, there is probably not going to be a “Letter for that” either.

Oh, and I did finally receive the promised letter about the first incident.

“This letter is to inform you that your over-payment has been” ….

Wait for it….

“WAIVED.”

Even though I was informed loudly that this had not been waived, but disposed of, they could not even be honest and put that in writing. They opted for  “WAIVED” so as not to admit any liability on their part at all.

***

FYI, Fortunately, the television I bought for him during the first spend-down, fell off his dresser (I bet that’s a sentence you’d never thought you would hear or read) so it had to be replaced. That and his monthly expenses made spending it down much faster. The new TV is mounted to the wall – the mount was also included in this spend-down.

****

The DAY after I finished writing this – yes, the very next day, I received a letter from Social Security – I will be required to payback one month (the Month of December) of his benefits to them. I wonder if they can just deduct it from that first $2600.00 that I was made to spend?? Oh, and just a little annoyance (if I opt to pay upfront) – “Please be sure to use the enclosed envelope to mail your payment back to us.”

There is no envelope, there never is ……….

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….

Social Security, Adult Children, Lessons Learned and a Heads Up

denied

If you follow my Facebook page at all, you may have seen the status below. I wrote it out of aggravation but mostly because it was something that I unknowingly did (or didn’t do) that I wanted to share it in the hopes of keeping someone from making the same mistake.

If you did read the status earlier, do not stop here. There is more to the story and it only gets worse, so please read on…

Before I get to that I want to say that I always did everything for DC ahead of time. I never waited until the last minute for anything. I wanted everything in place for the time when I was no longer around to look after him. When you are a single parent of a child with no siblings and you begin to get older, this moves to the forefront of your mind. If you have followed this blog for any length of time, you know that this something that completely occupies my mind.

Here is the beginning of the story. The account in question as it turns out, had a cash out value of $2600.00. Owning the  account in question was technically my fault, not for lack of doing my due diligence but more for the lack of not receiving the correct information from people who were supposed to know. But really, even if this was something that I had not checked into or something that I had forgotten about, this was a mistake – a plain and simple mistake.

We had our annual Social Security assessment the other day.
 I may be the most unorganized person in the world, but not when it comes to my child. I go out of my way to make sure everything is done on time and properly. 12 years ago we had the paperwork drawn up for his “Special Needs” Trust – that will be funded with a “second to die” policy. I made sure NOTHING was in his name. I made sure that everyone knew not to buy him savings bonds or leave money to him in their will. When DC turned 18, we had to apply for SS in order to apply for Title 19, in order to keep our DDS (Department of Developmental Services) caseworker and DDS funding for his work program and for future placement when I (and his Dad) am gone as he will most likely be living in a group home because there is no one else.

Years ago through my job, I purchased a life insurance policy for myself. It was one of those policies that they offer at a very low premium that never increases even if you leave the employer that you purchased it through. DC was an infant at the time.

They also talked me into a policy for DC. When they first brought it up,  I though it was odd. Why would anyone buy a policy on their child?

 It was explained to me that the benefit of buying it then and at an even smaller premium than my own was that when he turned 18, I could turn it over to him. It would be his policy to do with what he wished. He could cash it out for the cash value or he could keep it as his own life insurance at the same premium. He was an infant at the time so of course I did not know that when he was 18 he would not be able to understand money, hold a regular job, tell time or even understand what a life insurance policy is.

Because he does not understand any of this I never transferred it over to him. The premiums were paid electronically all of these years from my checking account and the premiums were combined with mine and so small that I really just didn’t pay attention any more – I really just forgot about it. I would get a statement once a year, but other than that, it was not anything that was on my mind.  I had at one time planned on closing it since, not having transferred it over to him made it of no benefit to him, but since it was not his account and there was no urgency to close it, I just let it go. I was involved with so much other paperwork at the time, this was the last thing on my mind.

I DID mention this account to anyone and everyone that asked, the attorney who did our trust, and SS when we had our re-determinations. The only reasons I would not have mentioned it every single time were, 1. it didn’t happen to be a question they asked at that particular time or 2. because I had been told that since I did not turn it over to him, he had absolutely no rights to the account. I was the owner, it was not his account.

For some reason during our last re-determination this policy became an issue. Again, as I never turned it over to him, I am the account owner. If he were capable of understanding what a policy is and said “Oh let me cash this out.” he would not be able to do so because I am the owner of the account. No one could do anything with this policy but me. But, because it exists, and he is the insured even though he does not own or will ever benefit from the account and could not access the cash out value or even be given any information about the account due to privacy laws  – I was told that his benefits would be suspended until I could get the account closed, spend the money and prove I had spent it on him. Which is fine, I could do that, but these things are what my nightmares are made of. I am glad this happened while I am alive to fix it, but what if it happened later when it accumulated even more money?

 

I did just that. I closed the account, spent the money on things that he would be needing anyway. I sent all of the information to the Social Security office and I hoped that because I got the account closed and the money spent before the deadline his benefits would not be interrupted.

Well, I received a letter yesterday with the the results of the review. The good news is that his benefits will not be suspended because I was able to close the account and spend the money.

The bad news?

Because he had over 2000.00 in resources (that could not be withdrawn or accessed by him <I am going to keep saying that>, in an account that was not his and he was not the owner of) we have to pay back 12,000.00 – I’ll spell that out for you – Twelve Thousand Dollars – in benefits that he received between his last re-determination (May 2015) and this current re-determination in September 2016. Because he had 600.00 too much during that time period, he should not have been able to collect Social Security benefits and it has to be paid back.

My choices are – Write a check for 12,000.00 (they want it all in one lump sum, not in payments) or they will deduct 73.00 from his monthly checks. He will be paying this back for 13 years!

Listen, I am one for following the rules – always and for everything – I admit that I can be a little bit obsessive about it at times and I fully admit that this was my fault, an honest mistake. I was not keeping it a secret – if I had, they would not have known about it. I was sure there would be some sort of penalty to pay and being that this was my mistake, I was perfectly willing to pay it to keep his benefits in place so I do not have to worry about him later.

It is unfortunate that this system we have for people with disabilities is set up so these people (our children) are required to live in poverty. It is designed that way.  I understand that in order to maintain this level of poverty recipients  can not have over $2000.00 at any given time. People make mistakes, honest mistakes. We as parents should not have to live in fear that we may have over-looked something or that a family member might leave our children money against our wishes and without our knowledge, make them a beneficiary on a life insurance policy or in this case, have an account that was supposed to be fine because HE WAS NOT THE OWNER and had no rights to the account – and so many other scenarios that I can’t even come up with now that are out of our control (Give me a few days to obsess about what else can happen and I am sure I can add to that list of “what if’s”). I agree that there should be consequences and penalties for errors. I don’t believe that my child who was not responsible for any of this should be made to pay back 12K in Social Security benefits for the next 13 years. I would have been perfectly willing to transfer that $2600.00 from the account (that he had no rights to and could not access) directly to Social Security.

Although I do believe in following the rules and owning up to my mistakes, twelve thousand dollars for a 600.00 dollar mistake seems a bit extreme.

So the moral to this story is:

If you believe you are being careful and following every rule, you may find out otherwise.

If you’ve done your due diligence and looked into anything that may be a problem, you probably need to look further.

If you have a question about anything you or your child have and even if you are told that it is fine – it may not be fine after all.

I am sure that this will not be the end of the story but I just wanted to share it to possibly save someone else from making the same mistake.

 

***

My apologies if this is littered with typos or half sentences – anger does not enhance my already poor proofreading skills in the least…   

 

 

 

 

 

 

 

 

 

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

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