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
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I just received a letter from the agency that DC “works” for. To paraphrase; there are new federal rules that will impose limits on people earning less than minimum wage. The clients that are already earning sub-minimum can continue to do so, but they will be required to receive “career counseling” annually. Basically, they will no longer be able to accept new clients at sub-minimum.

I know that there is cheering and celebration going on after reading the paragraph above but I ask that you take a minute to read another side to this issue, because there are two sides to this. If your child is not an adult and out of school, the reality of the “other side” for many may not be something you might be thinking about right now.

I agree that EVERYONE is entitled to be paid minimum wage, EVERYONE! The reality is that some of our children will never be able to work at Walmart, Target or hold a “regular” job. Should they earn minimum wage if they do not hold a regular job? Absolutely! Do I think my child deserves minimum wage? Absolutely again, but unfortunately the funding is not there to support it.

When DC was young and in school, I had no idea how any of this worked. I did not understand agencies or Group Supported Employment at all. I would have had the same knee-jerk reaction to him working at sub-minimum wage. I would have envisioned sweat shops and whatever other horrors that you might be envisioning right now.

My son works for a non profit agency – Group Supported Employment. He works in their greenhouse which is open to the public. He has staff supporting him all day, everyday. He earns less than minimum wage.

DC is 25 and will never be able to work without support – a good amount of support. The agency that provides his work program is funded by the state. Funding is cut each and every year – each and every year. We can all scream and yell that these programs need more funding, but the reality is that funding for programs for the disabled is cut every year. If his agency is made to pay their clients minimum wage, they could only afford to keep 6 of the 12 clients working in the greenhouse. Where would that leave my son and others like him? He has the right to feel productive. He has the right to do something meaningful with his time every day. Where would that leave him? Sitting home all day or in a day program (like a day care)? He loves his job. He likes to go to work every day. Basically what this letter is saying is that they will no longer be able to accept ANY client at sub-minimum, which in reality means they will not be able to accept ANY new clients at all – at least in their work programs. So where will all of the students leaving the school system go if they are not able to work at a regular job out in the community?

I do believe that agencies holding a below minimum certificate should be monitored closely, but to do away with them blindly is doing a disservice to those that are not able to hold a regular job.

This agency also supports and trains clients who are capable of going out and working in Walmart, etc. Those clients, after they are trained DO make minimum wage or more because they are paid directly by the company that hires them – while still getting support when needed and at times, transportation through the agency.

If your child is lucky enough to be able to work without support out in the community, that is great! If not, I hope that in the future these agencies are able to receive the funding and support that they need, because all of our children deserve that. Until then, please do not take away their opportunity to have a job like everyone else and benefit from the interaction with the public, while still having the support of staff to help them throughout their day.

I am in no way advocating for anyone to make less than minimum wage, I am saying that right now, this is the reality for my child. He is working like everyone else. He is in a place with staff, he is safe and he is being looked after.

For those of you that may be envisioning the “sweat shop” scenario; the “clients” attend the program for 6 hours per day. They do as much work as they are capable of doing. They are not forced to work. They are not doing hard labor or strapped to a chair to meet a quota. They are learning, they are socializing they are out in the community and making contact with the public. They are surrounded by and supported by agency staff. These “businesses” are created for the soul purpose of providing “employment” for their clients. They are not booming businesses and most of them are not profitable. Even though they are open to the public, they are providing a service to our kids, more than to the public (I can only speak of the agencies in our area, but I imagine that it is about the same in most agencies).

While the states continue to cut the funding of programs for people with disabilities, the Federal government in turn expects these already struggling agencies to now pay minimum wage. They are required to maintain a certain level and staff to client ratio, but when the funding disappears, the level of staff still must me maintained.

Think for a minute about where you think your child will be after he/she finishes school. Will he/she be able to go out and get a job and work without support? If the answer is no, or maybe not, then think about just what they will be doing instead. Will they stay home all day? Enter a day program/daycare? What do you think they would want to be doing? Would they like to say they have a job like everyone else around them?

As much as DC lives in the present and “what comes next” is not what is in his head most of the time, he does know that Mom is an adult and has a job. He knows that Doug has a job. He knows his friends have jobs. He knows that most adults have jobs. He knows that he is an adult. He likes that he goes to work. He likes that he has a job. But, unfortunately the government would rather see a large portion of this population sitting around at home or attending day/recreation programs than do something that might make them feel productive…. to have a job like everyone else.

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Happy “Twenty-Sixteen”

Here we are again. An entire year sped by in the blink of an eye. DC will be celebrating his 26th Birthday next week, or as DC likes to call it – his “Twenty-Sixteen Birthday”.
Even though he has been announcing it daily since the calendar flip to March if you were ask him how old he is (or will be) he will almost every time tell you that he is 18. That is always his first response. When asked a second time, he will tell you Twenty-Six. He does know the number, what that number means to him other than cake, friends, ‘out to eat’ and gifts, I really do not know – but he knows the number. Twenty-six!

He does know how to say the number, it’s the “th’s”, “st’s” and “nd’s” that he just can not grasp. He tries but they do not make sense to him. I remember the time that he announced to anyone who would listen, including the check-out girl at the grocery store, that it was “Mom’s Fifty-tooth birthday”. So instead of his 26th;  DC’s ‘Twenty-Sixteen” birthday it is.

I wrote the following last year on his 25th and there is really not much more I can say about this boy of mine. He makes me proud every single day. On the other side of that joy; the older he gets, the older I get and my worry about the rest of his life gets overwhelming at times. I want to know that he will be happy. I want to know that he will be well cared for. I want him to have the best life possible. I want to KNOW all of this now. That is the only thing I want or would ask for if granted a wish.

Happy Twenty-Sixteen beautiful “boy”. I love you ‘Magly’.

****

From March 2016, imaginatively titled:

Twenty-Five!

 

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This week we celebrated DC’s ‘twenty-five birthday’ (DC-speak).

TWENTY-FIVE!!!!

I just cannot wrap my head around that fact. I cannot believe so much time has passed. I cannot believe that the little boy that I once carried around… everywhere, is 25 years old. I have heard about his ‘Twenty-five’ birthday all day, everyday since the calendars changed from February to March, but it really did not hit me, emotionally until the day before, when some tears were definitely shed.

‘Happy tears’ – I told him. He loved that.

He has come so far in those 25 years….

 

From the boy whose only word until he was almost 7 years old was “”Momma” –

To the boy that eventually moved on to –

“Mommy” – and then –

“Mother” when he’s feeling a bit more formal and/or reciting Disney.

To the man who at times decides that “Vickie” is appropriate because in his mind, he is an adult and he should call me by my adult name.

 

From the boy who was always the loudest person in the room but could not tolerate noise or crowds –

To the man who is still the loudest person in the room, but can tolerate noise and crowds so much more easily, most of the time.

 

From the boy with the very limited menu who I thought would never gain any weight –

To the almost 6ft, 200lb man, still with a limited menu, but a bit more open to trying new things.

 

From the boy, who due to a delayed reaction from almost choking, completely stopped eating for almost a month –

To the man who can still have the random delayed reaction,  but now his Mom can usually recognize it and figure it out much more quickly.

 

From the boy who could not stand to be away from me at any time and had no interest in his peers and socializing –

To the man, who still must know exactly where I will be, but looks forward to spending time with his friends and attending social activities.

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From the boy who, I was told would never speak

To the man who never stops talking.

 

From the boy who was always lovable with me when he was a baby but had a very low tolerance for his head, ears, face and so many other touches that I remember saying,  “If he wasn’t so lovable, I would think he hated to be touched”

To the man, who will still hug and kiss his Mom (and is not embarrassed to do so), but will also hug his friends, his family and just about anyone he wants to, whether they want a hug or not.

I cannot be more proud of my boy…. I cannot love this child more. He amazes me everyday. He makes me laugh everyday. He fills my life with worry. He fills my life with love. I would not trade the last 25 years for anything in the world. He is the joy of my life.

If I had only one wish; my wish would be for the rest of his life to be as happy as it is right now and that he will be just as full of sunshine and light as he is right at this moment……

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Re-Blogged: Why You Should Be Wrestling With the Idea of “Handouts” in Healthcare

As most of you know, the older I get (and although I have everything I am supposed to have and more in place),the more I obsess and worry about what will happen to DC when I am gone. There are days when that is all that I think about and days when I just can’t bear to think about it.
This is a very hard read (emotionally) and it took me a few tries to get through it, but it is an important read…
Don’t be afraid to share it.
via: Running Through Water

***

“I read a story this morning in the news about a woman in Texas who stopped on the side of the road to chat with a homeless man.  Her curiosity got the best of her since she passed him in the exact same spot on the side of the road four times a day for three years. You can see it here.  He was very thin, unshaven, filthy.  We’ve all passed “him” on the side of the road, haven’t we?”

 

Continue Reading: Clutching at the Heels of the Disabled: Why You Should Be Wrestling With the Idea of “Handouts” in Healthcare

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.

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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 ……….

The #Rword – Times have changed but still there is work to do

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A few years ago, I wrote the post below because an old friend of mine emailed me a flyer she found from a Bike-A-Thon we participated in when we were just 12 or 13 years old. I was shocked when I looked at it – shocked that this was acceptable back then.  But it was and I am sure we did not think a thing about it at the time.

I wrote about it because I thought it was a good example of how far we have come regarding the use of the R-word. Not quite far enough, but we have made some headway.

My belief in how far we have come has been shaken a bit and that comes as a rude awakening…..

  • When I hear my neighbor through the wall, screaming at someone “That’s ‘F-ing R-word – ed” –  I know that we still have a lot of work to do.
  • When I call someone out on Facebook for posting a meme that says “You look like a ‘F-ing’ R-word” and the response I get back is “I’m sorry if I offended you but they really do look stupid.” Not only does the reply make it glaringly obvious that they do not understand the reason why we object to the use of the word (if you mean, STUPID, then just use STUPID!) but also- I know that we still have a lot of work to do.
  • When a co-worker makes a mistake and says to me “I’m really not retarded” – I know that we still have a lot of work to do.
  • When I realize that some of the people around me only refrain from using the word because I am there and because they believe they are offending me because of DC and not because they understand why it is offensive and degrading to be used with anyone at any time – I know that we still have a lot of work to do.
  • When the use of the word “Libtard” has become so commonplace recently, that no one seems to object to it…….

I am SURE that we still have so very much more work to do…..

So, take a look back to see and be proud of just how far we have come, but remember that there is still so much more work to do.

From April 2015:

Bicycle races are coming your way…. (How the times have changed)

 

Bicycle Long ago (long, long ago) when I was 12 or 13, my friend Sue and I participated in a Bike-A-Thon. We met up with a couple of friends Joe and Ron, who were also participating. I remember it being a lot of fun with the exception of Susan smashing into and ruining Ron’s bike gears. We had so much fun that we went around the route twice (much to the dismay of the people who pledged by the mile – I was young; this did not occur to me at the time).

For years afterwards I tried to remember what this Bike-A-Thon was for. What cause were we supporting? No one I asked could remember either. As an adult, when I think back on it, yes we had fun, but I am horrified that this organization thought it was okay for a bunch of 12 and 13 years olds to ride their bikes down these very busy main roads. It was not like it is today, roads were not closed or even sections roped off. We were on our own on these very busy main roads, most with no sidewalks or shoulders, until we came upon a check point. But this is the way it was. We didn’t think a thing about it back then.

Well, Susan was cleaning out her mother’s attic a week or two ago and found the actual map of the course we took on this Bike-A-Thon and on it was the name of the Bike-A-Thon.

Backing up for just a minute. This morning I read an article that had the R-Word in the title. It was a good article and I wanted to share it (I eventually did), but I was so apprehensive about the R-word in the title. It needed to be there, it really did, but I was so uncomfortable with it that I really thought a lot about it before sharing it.

Having said that, below is the map that my friend found. She was just as apprehensive about sending it to me as I am sharing it here. Bike-A-Thon My heart skipped a few beats when I first saw it. I sat on it for a few weeks, but I thought that if you are as appalled as I was (and still am) at reading the name of the Bike-A-Thon, then let’s look at it as a glowing example of how times really have changed. It is so hard for me to believe that back then, this and a few other words I am guilty of using as a child were just okay. We didn’t know any better back then. We certainly should know better now.

I have gotten into plenty of discussions over the use of this word. Most of the discussions have been with people who really didn’t understand what the problem was as long as they were not using it to disparage someone with a special need – but they ARE! They are using it as slang for “stupid”. They are taking a word that was once used as an actual diagnosis and using it to describe “stupid”. I really do not understand why this is so hard to explain to people.

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A version of this article was published on The Mighty – When an Old Flyer Reminded Me How Far We’ve Come With the ‘R’ Word

Autism; In “The Old Days” – Diagnosis via St. Elsewhere

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As you may or may not know, DC is 25 (almost 26 – gulp) years old. He was finally and officially diagnosed with Autism when he was 5.

I knew there was “something” by the time he was a year old and looking back, probably before that.

I originally thought that he could not hear.

After many visits to many doctors any many different hearing tests, they determined that he in fact, could hear perfectly.

This and a whole list of other issues, still had me believing that there was “something” –  they were telling me that he could hear– okay, but there was still something.

He was not talking or attempting to communicate, but doctor after doctor told me that boys develop more slowly and not to worry.

I was worried.

By the time he was three there was still no attempt at speech, there was flapping, stimming (although we did not call it that back then) and no eye contact. There were meltdowns (we did not have that word back then either) and as I said, a whole list of other issues that doctors continued to tell me he would grow out of.  I began to feel as if this was all in my head but I finally had him evaluated by Easter Seals and Early Intervention.

Both agencies agreed that there was a “speech delay” and we began to receive weekly home visits through Early Intervention for speech and OT. Although his Early Intervention therapists said that there was “something that they could not put their finger on”, his official diagnosis remained a speech delay.

They told me that because he was an only child, it would benefit him to be around children his own age.  Being a single parent since he was 2, not working was not an option, so at the time, he was with his Godmother’s mother during the day when I was at work.

Following the doctor’s and therapist’s advice, I took him out of the home daycare and placed him in a local daycare a few days a week. The rest of the week he with my friend who not only had a daughter exactly his age but another daughter a few years younger. Activities for special needs children were non-existent at that time, so I found a gymnastics class (he loved to climb) but I decided to put him in the class for children 18 months old, half his age because even though everyone was calling this a speech delay, I knew it was more than that and I knew he would not be able to handle a class made up of his peers.

Well…. That was a disaster! I spent most of the time in a corner crying. He just could not stand to be around the other kids, and most of the time I had to take him away from the situation and bring him over to a corner, nullifying the whole socialization effort.

At the end of each class was “circle-time” – we tried, we really did. He would sit on my lap and scream and scream; he would try to wiggle away. I would chase him and bring him back while trying to ignore the stares from the other mothers.

Then there was “Blaine” and his mother…

It has been 22 years, but I will not forget Blaine and I certainly will never forget his mother. His mother who sat next to us on the floor consoling Blaine loudly as if he was being traumatized by my child’s crying. Let me just say that Blaine was fine, he was really not even paying attention to DC at all, but she continued on and on “Don’t worry, it’s okay. He won’t hurt you” all for my benefit not her son’s.

We did try again the following two weeks with the same result, the third time we just ended up picking up and leaving mid-class. That was my last visit, but I did send his Dad with him the next week just to prove a point that he was not understanding at the time – I will get to that shortly.

A few days after our last disastrous trip to gymnastics, I was giving DC a bath. As he was sitting in the bathtub, I looked at him and he looked as if he did not even know I was there. He looked as if he was having a conversation in his own language with someone that only he could see.

It was right then and there that it hit me! He reminded me of Tommy Westphall, an autistic boy – a character from the old television show, St. Elsewhere. At that point, the show had been off the air for a good five years, but I still remembered the character vividly.

I knew nothing about autism except that Tommy had it. I had never met an autistic person and other than the way Tommy behaved, I knew nothing about it – frankly I cannot even say for sure if I had ever heard of it until then. I know it sounds ridiculous but it was at that moment that the proverbial light bulb went off in my head.

I called his Dad right away, but he was not hearing any of it. In his defense, he really did not see the delays – he really had no experience with children this age and nothing to compare DC to. His was in the military for many years; the years when his nieces and nephews were young. He was never really around young children at any time in his life for any length of time.

I decided that we would change his day with DC that week from Sunday to Saturday so he could take him to that dreaded gymnastics class. All of the talking and explaining in the world was not going to change his mind until he saw the differences first-hand.

He saw them.

He got it.

I will never forget the expression on his face when he brought DC home that day.

I had already called DC’s doctor with the suggestion of autism and she made appointments for him to be evaluated at a Children’s Hospital that was supposed to be very prominent in the diagnosis and study of autism. I did take note of the fact that she did not seem surprised that I was thinking and bringing up autism.

In the meantime, his Dad happened to come across a local news story. The Anchor of one of the local news stations did a story about his own son being diagnosed with Asperger’s. He called the station and requested a copy of the tape and yes, there were quite a few similarities between his son and DC.

Long story, short (too late, I know) – we went through the whole evaluation process and they gave us a diagnosis of:

“Severe speech delay – Rule out Autism”.

What might that mean?

It was explained to us that “Severe speech delays tend to mimic the classic symptoms of autism” including the flapping, lack of eye contact, food and texture aversions and of course the lack of speech itself.

??????

If his speech is just delayed and he should begin to speak, the other symptoms would disappear. They wanted to wait another year to see if he would begin speaking and “rule out autism”.

Fortunately, by this time I already had him in Special Education. He qualified, having previously been diagnosed with a delay, so all of this time was not being wasted, but it would have been beneficial to be able to work with an actual diagnosis. (School-Age for SPED in this area is 3 to 21 years of age)

We returned the following year and he was finally officially diagnosed.

It took more than 4 years since I first thought there was a problem – 4 years of doctors looking at me as if it I was just an over protective, first-time mother – 4 years of people telling me that Albert Einstein did not speak until he was four – 4 years of people telling me that he did not speak because I did everything for him and he did not need to speak for himself – 4 years of the looks, stares and comments from people like Blaine’s mother – 4 years of taking him to doctor after doctor (this is not to say that all of the above does not happen still, because it does, but at the time – not having a diagnosis – I was beginning  to believe that all of this was either all in my own head or all my fault or both) – 4 years…

I honestly do not know if his doctors and therapists back then just did not want to bring up autism, because knowing what I know now – it should have been apparent to all of them.

Apparent as it should have been, still I had to be the one to say it first….

*****

If you were a fan of St. Elsewhere, you will “get” the photo.

Are We Defending or Unwittingly Keeping It Front and Center?

 

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I agree 100% and wholeheartedly that children – ALL children should be off limits.  No matter who/what you support or do not support; their children should be left alone. They should not become fodder for the press or the general public.

I was happy to read that a television writer may have been fired (or at least suspended) for her tweet and very glad to see so many people letting go of their political views to come to his defense. This is a topic that we should all be able to agree and come together over.

But I worry that in our rush to defend, all we are doing is keeping the stories in the public eye long after they would have died down on their own? Sharing news stories over and over again with his name in the title and likeness as the lead, in my mind is not helping, it is rehashing the issue in the name of defending him and bringing all of the unsavory information back up for all to read – using his name like a banner.

I get that we all want to defend the things that have been said and intimated about him. I do as well.

I do not think we need to keep using his name and his photo to make our point.

I do not.

Children should be off limits. Children should not be speculated about.  Yes, we should be defending him. I do not think we need to use his name or his likeness to do that.

I just don’t….

2016 Top 5 Posts, #1 – “Mom, do you love meeee?”

I am happy that the following came in at Number 1 in 2016; it is one of my favorites.

We still have the same conversations and he still says it exactly same way. I will surely never correct him and I hope that no one else will either…..

“Mom, do you love meeee?”

I love you Magly

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

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

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

But, back to me….

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

Is it just learned behavior and not real emotion?

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

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

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

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

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

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

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

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

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

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

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

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

Mom, I love you ‘Magly’.

No corrections necessary……….

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….

2016 Top 5, #2 – Understanding Death Is Not Like a Disney Movie

My second most popular post in 2016 about understanding death and dying. Not an easy concept for DC to grasp.

Understanding Death Is Not Like a Disney Movie 

My step father passed away this week. DC adored his Grandpa and the feeling was quite mutual. When I had to look for a few old photos for the service, there were two that I was determined to find. The first was of DC on a bike with his Grandpa running along side him, holding him up.

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The other was from my brother’s wedding when DC was about 5 or 6. The photo was from the hotel room before the wedding. I was standing off to the side and there was DC and his Grandpa, in their tuxedos standing in front of the mirror, arms out to the side as if they were saying “Taa Daa! Look at us”.  As I searched and searched for this photo I remembered standing there watching this moment between them in front of the mirror and thinking I was about to take THE cutest photograph that had ever been taken, when my mother walked right through the shot. I had missed the moment with the camera. I realized that this photo that I had been searching for existed only in my head. All these years later, it is still right there in my head as if it was yesterday; as if I had actually taken the picture.

I was not sure how to explain his Grandpa’s passing to him. He has never lost anyone close to him before. I was not sure that he would understand. I have tried many times and in many different ways to explain this to him in the past, when people we knew had passed on,  but I was never sure that he really understood.

In his Disney movies, characters may die but usually someone comes along to give them a kiss to wake them up. (I truly believe that this was part of the reason that DC insisted on kissing him on the forehead more than once at both the wake and the funeral a few days later). As many times as I have tried, I have never come up with a good, understandable way to explain this to him.

That afternoon when he came home from work I made the attempt to tell him what had happened before we left to go to my mother’s house. I told him that Grandpa had been very sick and he was very old (I added that so I would not frighten him into thinking that if he got sick, the same thing would happen to him) and because he was just so sick, he died. I specifically did not use the phrase “passed away” so as not to confuse him with different words.

“Do you understand what that means, DC?”
“Yes”

“Grandpa loved you very much and he did not want to leave you. It was not his fault”

“Yes”

“This is not like your movies. He will not be able to come back, like Snow White. He died like Cinderella’s father. Do you remember that Cinderella’s father did not come back after he died? I am sure he wanted to come back but he couldn’t.”

“Yes”

His Grandpa had been suffering from dementia for the last few years and was well past the point of recognizing anyone, so DC really had not seen him in quite awhile. He would ask for him every once in a while when we went to my mother’s and Grandpa was not sitting in his chair. We explained to him that Grandpa was sick and was in his room at his new home where there were lots of people who could take care of him. I am not sure that he ever really understood that and I sometimes got the impression that DC just thought that Grandpa was upstairs taking a nap.

Both DC and I had birthdays in March. We had planned more than once to get together with my mother but she was sick herself for a good few weeks and did not want to infect DC or I with whatever she had. When we arrived at her house that night she brought out the gifts that she had been holding on to. DC opened his card and as he always does, read the card in it’s entirety out loud. Then he reached the signature and read: “Love, Hugs and Kisses, Grandma and Grandpa”.

He stopped and he looked at me. I could see he was a bit confused.  Then he said “Grandpa ‘is’ died”.

Honestly, I did not expect that. He really had been listening, paying attention and possibly understanding a little bit of what I had explained to him earlier. I told him that Grandpa wrote the card on DC’s birthday a few weeks back and that he was very lucky to have this card that Grandpa wrote for him before he died.

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(Of course, Grandpa was too sick to really sign the card, but DC really did not need to know that)

This seemed to make sense to him and he no longer looked so confused.

On the way home that night, I mentioned to Doug how I still was not really sure that DC understands what death means and how much I really want him to understand it.

Doug asked me why it is so important to me that DC understands. Why couldn’t  I just let him believe what he believes, the way he believes it and leave it at that?

I understand that thought process. I understand wanting to protect him from anything bad or sad, I do. So why is it so important to me that he does understand?

“Because one day I am going to die and I want him to understand that it is not something one wants to do.  I never want him to think that it was my choice. I NEVER want him to think that I just left him.”