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

Posted by TakingItAStepAtATime

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!)

Posted by TakingItAStepAtATime

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. 24^th) and a copy of the policy I called SS (on the 27^th, 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 25^th 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 17^th I was told that the first situation was waived and has been promised a letter verifying that.

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

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

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

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

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

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

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

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

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

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

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

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

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

– Cautiously optimistic.

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

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

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

Wait for it….

“WAIVED.”

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

***

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

****

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

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

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

Posted by TakingItAStepAtATime

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 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)

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. 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.

****

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

Posted by TakingItAStepAtATime

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?

Posted by TakingItAStepAtATime

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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?”

Posted by TakingItAStepAtATime

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?”

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……

Posted by TakingItAStepAtATime

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……

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

Posted by TakingItAStepAtATime

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.

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.

(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.”

2016 Top 5 Posts, #3 – Not the ‘Real’ Autism?

Posted by TakingItAStepAtATime

In at #3 for posts written in 2016 – a post that was not written all that long ago….

Not the ‘Real’ Autism?

DC was agitated all last night. He gets agitated often but these days it does not seem to last as long as it did when he was younger. It usually comes and goes in bursts and then it is over – sometimes not, but for the most part now-a-days, it does not last too long unless something is really bothering him.

DC and my conversation last night:

DC: Mom, come here.

Me: What is wrong?

DC: Nothing wrong. I feel all right.

Me: You don’t feel well?

DC: (Getting angry) I feel all right! Behind me!

Me: What’s behind you?

DC: (Still angry) NOTHING BEHIND ME! I feel all right.

When he came back downstairs, still with that look in his eyes I asked;

Are you sure you are all right?

DC: Behind me!

Me: Does your back hurt? (I checked his back – there was nothing)

DC: NO!

Me: Is your back itchy?

DC: NO! I fine!

Me: DC are you sure you are feeling okay?

DC: YES!

Worried that he didn’t feel well I told him to rest on the couch with his ipad.

One of the many things that I worry about is DC having something medically wrong with him and I will not be able to tell.

Unless he has a fever, vomits or passes out right in front of me (try catching a 200lb boy at 3am) there is really no way for me to know. He doesn’t really let on when there is a problem and when there is, his behavior is pretty much the same as it always is. I don’t know if he doesn’t feel pain like the rest of us or he just doesn’t process it the way we would expect. This guy can run full speed with a sprained ankle!

When he got settled, I tried again.

Me: DC, you know that it is very important that you tell me if anything ever hurts. If your head hurts, if your stomach hurts, if your tooth hurts or anything else hurts, you always have to tell me. Promise?

DC: Yes, I promise.

Me: Tell me what you are promising to do.

DC: I promise never to hurt.

Me: DC, every one has hurts some times. If something is hurting, you have to promise to tell Mom.

DC: I promise.

Me: Tell me again what you are promising.

Blank Stare…

Me: What are you going to do if your stomach hurts?

DC: Go to the bathroom.

Me: Okay…. but what else?

Nothing…

Me: You are going to tell Mom. What should you do if your head hurts?

DC: Rest.

Me: Good, and what else?

Nothing, again and I had to prompt him to say “Tell Mom”.

I keep seeing posts on line talking about the ‘Real Autism’. How my child being happy is somehow doing a disservice to the autism community. I will never apologize for my child being happy. He is, for the most part a happy guy. He’s funny and certainly a charmer and he knows how to use those charms to his advantage. When he does something like tape the sides of his mouth with scotch tape to keep a smile on his face, it is funny but it is also impressive to me that he came up with it.

I find it much easier to explain autism, HIS autism by telling specific stories about how his mind works, the things he does or says, the many things he is obsessed with, his likes, his dislikes and some of the issues we face. At times I will use humor to tell a story because at times the situations are funny.

The fact remains that he, an adult, can not even communicate to me when/if there is something wrong or something bothering him.

No, he may not be a 25 year old in a diaper but..

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.

What about this is this not ‘Real Autism’? Everyone is different, DC’s autism is certainly different than your child’s without a doubt. Different does not mean ‘Not Real’.

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

Even though I try to write in a more upbeat fashion, I think I have made this point perfectly clear over the years.

What about this is not ‘Real Autism’?

We are all fighting on different fronts in the same battle – the battle for our kids to lead productive, safe and happy lives. But I can not write about your child’s autism, I can only write about my child’s autism.

If you are adamant about spreading awareness about the other sides/levels of autism then DO THAT! We need to show the public every single side that we can. Start a blog, write and submit articles to online publications – there are enough of them out there, ask to write a guest post…. do something other than admonishing people for their views and stories.

DO SOMETHING!

I choose to tell our story they way I choose to tell it. It is OUR story.

You have to be the one to tell your story.

There is room for everyone.

2016 Top 5 Posts, #4 – “You can’t stop the signal, Mal”

Posted by TakingItAStepAtATime

Coming in as the fourth most popular post written in 2016; a post about technology and the iPad – also known as “Shooting Myself in the Foot”

“You can’t stop the signal, Mal”

“Everything goes somewhere, and I go everywhere” ~ Serenity

Well Mr.Universe, apparently the signal can indeed be stopped and unfortunately wherever the “somewhere” where everything goes is; it is definitely far from here……

During almost the entire month of November on through early December my internet was down more than it was up. After weeks of “talking” to “The F word’s” Customer Service people, getting a new modem and visits from service techs, I threw in the towel and switched my internet/Wi-Fi provider. Although this provider is so much better than “The F Word”, my internet goes down at least once per week – for days at a time or the signal is so bad that I do have internet but it is equal only to a very bad dial-up connection from the old days. “It’s true, there’s no beacon”*.

I have to believe that I must live on “the edge of the galaxy”, (in) “that place of nothing*”. In a void. In “the darkness. Kind of darkness you can’t even imagine. Blacker than the space it moves through”* ……. or I just have exceptionally bad luck with anything having to do with technology of any kind.

We had a snow day recently and I found myself thankful that when I upgraded DC and my IPhones a month or so ago, I purchased a tablet that can run on my AT&T data when there is no Wi-Fi. It was then that I had a “What were you thinking?” moment.

I bought DC an IPad for Christmas. Why? I do not know. I don’t know what I was thinking.

Well… I do, I guess. It is extremely difficult coming up with Christmas gifts that DC will like. Basically he wants DVD’s and Books (and of course the standard Band-Aids, scotch tape, pens, paper and mustaches), all of which he receives throughout the year. He does also receive them at Christmas time as well, but it is difficult finding DVD’s or Books that he does not already have. So I decided that he really would love an IPad. He does love it – maybe too much.

DC is 24. He grew up without the benefit of all of this technology, so keeping him occupied, especially when we were out, was a battle. When he was young he really loved watching Disney videos (VHS, for you youngsters), but there was nothing “portable” for him to take with him. Still, he developed and obsession with watching these Disney VHS tapes to the point where he did not want to do anything else in anticipation of watching these movies. I had to limit his movie watching to weekends only. If you think THAT went smoothly, you are very mistaken.

When they came out with those little portable DVD players, I bought one for DC… but he was only able to use it when we traveled or when there was a day off from school and he had to come to work with me. He never used it at home, so it did not occur to him to want to use it at home. When those bit the dust, I would let him watch his DVD’s on my lap top when he came to work with me. Somewhere along the way he discovered YouTube. I did not even know he knew how to use the internet – apparently they showed him how to do this at school and really, you only need to show him once.

So okay, he was now allowed to use the computer and/or watch his movies on the weekends. After he crashed my computer…. twice, I was happy when he won a laptop in a raffle, but still it was to be used only on the weekend, when we traveled, or when he came to work with me.

Moving on….

When he was in his transition program (18-21) before he left the school system, I decided that he really needed to have a cell phone. The phone is something that he does not grasp 100%, but I really needed to know he could call me or someone if he needed to. I started out with a TracFone because I did not know if he would be able to keep track of this phone and not lose it. Once I saw that he was very good about knowing where it was at all times and carrying it with him, I upgraded him to an IPhone. It wasn’t long before he discovered he could get to YouTube and his Facebook page. That was fine with me. He only used it in the car. This was one of those rules he makes up in his own head – there are a lot of those – he would only use it in the car or on the bus.

He does have a Kindle that he really is not all that thrilled about. He would rather carry 20 lbs. of books in his backpack and of course, he can’t edit a book on Kindle. Then for some reason he got over his “only in the car” rule for his IPhone. He would use it at home, but only for about a half hour so that really wasn’t a big deal for me.

Then in my infinite wisdom, because he hates his Kindle and likes the IPhone, I decided to buy him this IPad. Well….. I have single-handedly created a new obsession. It was new, so at the beginning of course I let him use it more than I should have. In my mind (and really, my mind should have known better, but the “should have known better” part of my mind was overridden by the “wanting to give him something he really loves for Christmas” part of my mind) I really thought he would just replace the IPhone half hour with a half hour on the IPad.

Well, it did not work out that way. He loves it and I am glad that he does, but he wants to use it all of the time and when he freaked out about the internet going down and I found myself being grateful that I had the tablet that uses my data, I knew I had created a big problem.

I was able to manage all of these years without the benefit of the IPad and I am really disappointed in myself for creating this issue. We will be working on this and it will be limited, but I am really angry at myself for creating a situation that needs to be worked on.

On the other hand, I am angry because he loves it and I feel bad because I should know; I DO know that everything goes from zero to obsession and why do I always have to put limits on the things that he loves?

*Firefly ~ Bushwacked