The Couch; Another Round

 

A couple of weeks ago on the 4th, my neighbors decided to blow off “cannons” right under our window………It went on for hours.

Now, DC really does not mind fireworks when he is expecting them. It’s the fireworks that begin two weeks before and continue on for a month after the 4th that bother him. Being a guy who is terrified of storms, hearing these random fireworks does not go over all that well.  Even on the 4th when he should be expecting them, he certainly is not agreeable to the noise when it sounds like a cannon is going off directly under our window.

Due to the my neighbors and a couple of pretty good storms over the last few weeks, we have been sleeping on the couch.

When DC was young, he would come into my room when there was a storm and he was afraid. This did not mean he would calm down but once he tired of repeating the same few phrases over and over again, he would finally fall asleep.

He is  27  now (chronologically) and it is no longer appropriate for him to come and sleep in my room. He does not understand this because in his mind, the storms are just as scary as they were when he was young and quite honestly, developmentally,  he is just as young as he was then. There is no good way to explain this to him.

So……  now during storms or when he hears a loud noise that might be a storm or fireworks or a truck driving by or a plane flying over head…… we sleep on the couch.

I have a sectional.

He sleeps on the chaise lounge (the bottom of the L)  and I sleep on the straight part.

I am old. Everything hurts after sleeping on the couch for more than a few days.

It is not always easy to get him back to his room and into his bed, especially at this time of year when the storms just seem to  keep on coming. It doesn’t even need to be a storm – clouds, dark skies, rain or anything that puts the notion of a storm in his head is enough to send us “to the couches”.

Our last round of couch-sleeping lasted more than 2 years. I am hoping this round does not last anywhere near that long.

It’s only been two weeks but I am tired.

It’s only been two weeks but I am afraid that there are plenty more storms ahead. ‘Tis the season.

It’s only been two weeks but I can already tell that it is going to be a very long summer.

It’s only been two weeks but……….. I miss my bed.

***

Ahhh, but there is always a little bit of a bright side  – FB Status – July 17, 2018)

 

Between looking out the door and repeating “Storm is over soon, Storm go away, I am brave, Storm is over soon……” DC kept coming into the room with his hands in prayer position, bowing and saying “Yay! We Must Stay”. I just assumed it was more drama about the storm but I’d never heard him say this before so I asked him (thinking it must be a movie line) where this was from…..
DC: Yoga Class
(I’ll give you a minute….. 😂😂😂😂😂)

*********

This has been a Finish the Sentence Friday  5-minute stream-of-consciousness post about “My Bed” hosted by Kristi Campbell of  Finding Ninee and Kenya G. Johnson of Sporadically Yours 

 

 

I have a blue light

 

I have a blue light. It is one of those energy saving bulbs that lasts what seems like forever. It has been in my outside porch light for a good 4 (maybe more) years now (and yes, I did notice that there are plenty of dead bugs at the bottom in this photo – that’s life.)

One Halloween about 4 years ago (maybe 5) it was my turn to host the annual Halloween/Trick or Treat party for DC and his friends. We would still be giving out candy so I wanted to find a bulb that would not interfere with the lights and decorations I had put up, as the regular porch light bulb would.

I rummaged around and came across an old bulb from back in the day when I used to Light- it-Up Blue.  The porch light is not easy to change and if the bulb works, I am not changing it. There it sits – four (or maybe 5) years later. Obviously, I do not turn my porch light on all that often for it to last that long.

We did not have Autism Awareness when DC was young. We did not have World Autism Day, so when Autism Awareness started to become a thing, I was all for it. I naively believed that the awareness would encompass all of the spectrum.  If your child happens to fall somewhere on the spectrum other than where the characters that we see on TV fall, you are not allowed to speak about it. Don’t get me wrong – awareness and acceptance is a necessity but some of us need more.

As I get older and DC gets older, I worry more and more about his future and his safety (don’t worry, I am not going to rehash all of my fears for the hundredth time). Awareness is/was necessary though. It brought us more programs into school systems and more understanding and hopefully, acceptance of the students. Awareness has done next to nothing for some of our children as they become adults.

With funding for the disabled being one of the first things to be cut in every budget, even some of those school programs are going away now. I have already said that DC, after all of the people I have put in place as guardians after I am gone are gone, will have to live in a group home. What if there is no funding for that sort of thing when I am gone? What if everything I have put in place falls apart due to these cuts or due to one little miss-step? What would have happened if our whole Social Security debacle happened after I was gone? (A debacle that turned out to be Social Security’s  fault, but they were perfectly willing to take his benefits away, knowing full well that it was their fault – this is a 3 part-er so if you are interested, start here). Who will be there to fix it all for him? Will he be out on the streets or institutionalized? He would not survive. He is in a staffed day/work program right now. He loves it. What happens when their funding gets cut (as it does every year)?

April is a very depressing month for me now-a-days. It really is. Please do not tell me that I am undervaluing my son’s life by saying that. I am not in any way.

He is happy.

You should be so happy.

I love our life.

He loves his life.

I would not change a thing about him, except for his future.

I worry for his future and it is not for you or anyone to judge a parent, any parent who is just worried for their child’s future. His future is not your future, it is not your child’s future, you cannot compare.

I do not disparage those that are celebrating. I do not disparage the associations/charities they choose to support or not support. I do not disparage Autism Awareness at all. I am glad there is push for awareness and acceptance, but it needs to encompass everyone and we need more – much more. 

So I will just continue on my way, writing stories – some with humor and some not, some about progress made and some not. But through-out those stories, it should be apparent to you just how much I love this “boy” and how proud I am of him every day. If it is not in your face apparent in one or two; all I can say is that everybody has a bad day once in a while. I will continue to write about DC and our life  just to raise awareness to another side of the spectrum. I will continue to call and email my representatives whenever the threat of more cuts are in the air. I will continue to plan and research other methods of making sure he is safe and taken care of.

So yes, I have a blue light. It is left over from Halloween, 4 years ago (maybe 5). It may be turned on if someone is stopping by  after dark, but it means nothing other than the fact that I am just too lazy to switch out a perfectly good, working light bulb.

I am glad there is an awareness day and an awareness month. I am glad it has also become an acceptance day and acceptance month.

We need more.

 

 

 

 

‘Twenty-Seventeen’

I wrote this post when DC turned Twenty- Five. I re-posted it when he turned Twenty-Six, or ‘Twenty-Sixteen’ in DC-speak.

Twenty- Five was hard to wrap my head around. ‘Twenty-Seventeen’ (27 in DC-speak) is even harder. We’re moving closer and closer to 30 and I may never get over that.

Many times over the course of a day, DC will tell me that he loves me, complete with the “I Love You” sign. I, of course would say and sign it right back. This has morphed over the years in to our own little thing, where we connect our two “I Love you” signs into one and I love it!

This child is the love of my life. He is my joy.

My wish for my boy is that the rest of his life is filled with the love and happiness he brings to me every day.

Happy Birthday to the guy who will always be my baby.

I love him “Magly”

Twenty-Five


6 3rd party_0003

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, every day 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……

IMG_4076

 

 

 

 

 

 

 

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!

 

6 3rd party_0003

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 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……

IMG_4076

 

 

 

 

 

 

 

But Wait, There’s More!

folder-1837607_1280

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

6 3rd party_0003

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……

IMG_4076

 

 

 

 

 

 

 

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?????