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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But Wait, There’s More!

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If you have been around here for a while, you may remember the whole Social Security fiasco that began in September/October 2016. (If not, you can read it here)

I will not rehash all of the details again, but long story short I had an account that Social Security determined was a resource. Contrary to popular belief, I do know what I am doing; I did check into that many years ago, and I knew that they were wrong. But still I was required to close the account, spend it down, and prove I had spent it on him. Until it was spent, his benefits would be suspended.

Even though I knew they were wrong, a suspension of his benefits until I could prove them wrong could snowball into other areas and his day program. (read how it all goes together in our area here). I spent it down and sent all of the information to the caseworker.

Within 4 days, I received a letter stating that his benefits would not be suspended due to the spend down but I would be required to pay back 12,000.00 in benefits that he has received over the last year and a half (12,000.00 over a 2600.00 account)

Before contacting an attorney, I started the appeals process. I was not appealing the payback, I was appealing the account. I knew they were wrong.  I mailed the form on November 4, 2016 and waited to receive an appeal date.

I heard nothing.

On November 28, I sent another form along with the letter below. I decided to include it at the last minute.

  The enclosed appeal form was mailed on November 4, 2016. As of today, (November 28, 2016) I have not received any word or notification of an appeal date.

   Because historically things tend to get “lost”, I did not want to sit and wait for a date only to find out after the 60 day appeal window had expired, that the form was never received or seen.

  I am re-sending a copy of the form along with this information about the account in question:

  The account in question was a life insurance policy that I purchased when DC was an infant.

The premise was that I could turn it over to him when he was 18 and it would then be his policy and the premium would never increase.

  As he was an infant at the time, I did not know that he would be diagnosed with Autism and not understand money, never mind an insurance policy. Due to this diagnosis and his very limited capabilities the account was never turned over to him.

I was the owner of the account.

He was the INSURED.

I was the beneficiary.

  As I was told by the insurance company more than once, he had no rights to the account. Even if he could understand what an insurance policy was, he had no rights to it. He was the insured, only.

  He could not withdraw the cash value. He could not close the account. He had no rights to the account at all.

  I did close the account and spend the cash value of 2,600 some odd dollars on him, only because I was told that his benefits would be suspended until I did. SPENDING IT DOWN WAS IN NO WAY AN INDICATION OF MY AGREEMENT WITH THE DETERMINATION!

  The woman who processed his re-determination insisted that this account was considered a resource for him because in theory I could very well cash it out and give him the money.

  If we are going to use that line of thinking, I could cash my paycheck and give it to him (he has no right to that either). She also said that if/when I die that this account would become the property of someone else. This is true but then THAT person would be the owner of the account, HE WOULD STILL BE THE INSURED and that person would then be the beneficiary. He would still have no rights to the account.

 

I waited for an appeal date…. and waited.

On December 17 while still not having an appeal date, I received another kick in the face; my step-father, against my wishes, saw fit to make DC a beneficiary on a small life insurance policy and the insurance company had contacted me about a payout (more about that later). This I knew was going to be a problem – this was considered a resource. I knew that for a fact (because, again I do know things).

This was happening while I still had the first 12,000.00 hanging over my head.

I got home and checked the mail, and there was still no appeal date, so I got on the phone. I was not sure who I should speak to but I waited the 45 minutes on hold and finally got a person at social security.

I explained that I had filled out two appeal forms, one on November 4 and another on November 28 and I had still not received an appeal date.

She checked the records and came back and told me that the issue was disposed of. The account was not considered a resource.

Really? I have spent all of this time waiting for an appeal date and the issue was disposed of but no one bothered to inform me?

She apologized and went to speak with someone I assumed was her supervisor, who told her that she did not know why I did not receive any notification. I asked for a letter stating that this issue was resolved, for my records. I was told I would receive that letter shortly.

In the end I was correct. Unfortunately it cost me $2600.00, which no one seemed to mention or apologize for and no one saw fit to notify me while I was still waiting for a date.

I certainly would have taken this new insurance policy issue a little bit better if I had not had this other issue hanging over my head.

Let’s just look at this whole mess:

I did my due diligence and checked into that account more than once.

They were wrong, but before that was determined, I was required to spend $2600.00 so his benefits would not be suspended.

If I had not appealed, I would now be paying back $12,000.00 for absolutely no reason other than the case worker did not know what she was talking about. I explained it to her exactly the way I explained it in the appeal letter, more than once and I was also required to send a copy of the policy to her at the time, so I know that there had been no miscommunication with the caseworker. She either just did not know what she was doing or just saw an opportunity to make herself look better in the eyes of the agency by collecting a good chunk of money.

We are required to jump though so many hoops when our children reach adulthood and unfortunately we are at the mercy of these agencies who seem know next to nothing when it comes to our children, and what we are required to know and do. As a parents, we jump through every hoop laid out in front of us to ensure that everything is in place for or child’s future, because that is really what all of this is about, isn’t it?

Bottom line is, you can not trust that you are not being taken advantage of by these people and you can not trust that they know what they are doing – always appeal!

But wait, there’s still more! (And it gets really ridiculous at one point)

We will get to that next week……………..

 

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.

IMG_4131

 

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 loveable, 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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Seriously?

Seriously

I have read so many articles and lists recently regarding “What not to say to an Autism Parent” and “The 10 dumbest things people have said”, etc…….

And yes, yes, I’ve heard almost all of them before – more than once.

I’ve been told “He doesn’t look Autistic”

He doesn't look Autistic

He doesn’t look Autistic

At a birthday party a parent asked “Does he eat?”

Another: “Can he talk?”

Yes

“Well he’s okay then, right?”

I’ve always said that I’d rather people ask questions than stare or assume. Some people do, and I always welcome the fact that they want to learn. I have had many wonderful conversations with strangers that were genuinely interested in learning about autism – his autism, as the saying goes…. “If you meet one Autistic person, you’ve met ONE Autistic person.” ~ Unknown

Recently I was visiting DC’s work program. There was a woman standing there that looked a bit familiar to me, but I could not place her. She looked at me and said “I know you, Vickie”

I was the team manager for our local Special Olympics golf team for a few years (insert laughter, as I know NOTHING about golf) and her nephew who has autism, was one of my players.

We chatted for a bit.  As it turned out,  she was there because her nephew was transitioning into the same work program as DC.

As we were chatting,  she said:

“Your son is SO handsome. You should be thankful he has Autism so you won’t have to worry about all of the girls that would be flocking around him”

Now she is a very nice woman and I know in her own way, she actually thought this was a compliment, but……..

Seriously?????