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…….

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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.

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…   

 

 

 

 

 

 

 

 

 

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

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

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

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

Ornament Hunt 2014 (and one Elf on the Shelf)

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

#1 Elsa hidden on the shelf of his DVD cabinet

frozen

 

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

(he thinks I’m funny, anyway)

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

#2 Mary Poppins in the silverware drawer.
poppins

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

#3 Baloo and Mogli on the towel hook

Mogli

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

#4 Tinkerbell in the drawer

Tink

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

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

#5 Sully hanging on the lamp

photo1

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

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

—–Progress, Progress, Progress——

#6 Ruby Slippers on his bedroom shelf

angel

 

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

It didn’t work.

Who went to Pylea to save Cordelia?”

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

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

#7 An Elf of a shelf

buddy

Your ornament is

L O S T

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

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

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

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

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

#8 Brady Bunch on the wall

bb

 

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

Where does Doug do the ‘Brady BUMP’?”

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

– insert my eyes rolling –

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

“One more time!”

– insert eyes rolling and head shaking –

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

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

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

#9 TARDIS on the clock

who

 

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

Where can we find the T I M E?”

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

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

#10 Princess Merida in the TARDIS

brave

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

Where is ROSE and the TARDIS?”

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

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

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

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

~ Yes, it is hard to be my friend……..

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

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

She bought Crispie Rice.

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

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

krispies

And there you have it!

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

~Maybe next year

The Santa Train revisited….

train s

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

******

Lessons learned on the “Santa Train”

train

(Code word of the day: “Supplement”)

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

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

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

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

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

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

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

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

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

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

stst2

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

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

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

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

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