Autism in the Old Days: The Spectrum, Cures and Treatments

 

(This post and it’s counterpart “Autism in the Old Days: Diagnosis via St. Elsewhere” are written strictly as a remembrance and as a comparison about how times have changed and how much in the dark we were as parents back when DC was diagnosed. It is about all of the things we did not know and how differently things are handled today. But over and above all of that it is about the slow process to the realization of not necessarily having to follow every direction laid out in front of us, just because the presenters, be it doctors, teachers or therapists,  are supposed to be the ones that knew better. Having to figure out for ourselves that the way things were presented and taught to our children and us, as parents, was not always the best way to go about things.)

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Back in the “Olden Days” (when we were all walking uphill in the snow to AND from school) when DC was diagnosed (the early 90’s) there was no internet to speak of. There was little information about autism readily available to parents. Yes, there were a few books that I’m sure every parent owned, but really not much else. We had to depend on our doctors and the school system.

One of the first books that I read was a book called “Let me hear your voice”. I remember that even though it was a book about “One family’s ‘triumph’ over autism”, it did not offer a lot of hope. Their child was diagnosed early; at one year of age. They had the resources to provide in home intensive behavior training, something that I would never be able to do.

As I mentioned in my last “Autism in the Old Days” post, DC was not officially diagnosed until he was 5, not for lack of trying, so the other theory that was in wide circulation at the time was that before the age of 3, a child’s brain could be retrained. If you missed that window, it was too late. I missed that window, again not for lack of trying.

I remember when DC was about 6 or 7, I was going on vacation – the first in years. He was going to spend the week with his Dad. I was anxious enough about that – not that I did not trust his Dad, but because I had not been away from him for longer than one of his overnight visits to his Dad’s – ever. But I also remembered that book. I remembered how the author went away on a four-day business trip and her child did not know her when she came home. I had to be talked into going by many, many people and still I really did not want to. I went and of course he knew me when I got home and all of that worry was for nothing. But this is what happens when you have to depend on little bits of information and are pretty much on your own trying to figure things out.

Back in the “Olden Days” there was the Lovaas Method. Yes, I had that book as well. Now-a-Days it is known as ABA. Again, this behavior training had not made its way into the school system and, like in “Let me hear your voice”, most folks that used this method had the resources to do this at home, 40 hours per week. I was a little bit leery about the whole thing. I thought a lot of it was harsh and really just cherry-picked a few ideas here and there from the book. (This is in no way an opinion or a judgement about ABA. I know that it has evolved over the years and is probably nothing like the original offering). It was quite a few years after DC left early intervention that the school system trained staff and designated a classroom to ABA.

Back in the “Olden Days” there was no spectrum, that we knew about anyway. Autism was Tommy Westphall, Rain Man and Bernard Rimland and his son (Autism Research Institute)  We knew about no one or nothing else.  These, our only examples of Autism, also did not offer parents much hope.

In my quest for information I remember attending a few seminars early on. One in particular given by a woman who spent many years as a Special Education teacher. A woman who I had met in a sign language class, who worked with autistic children, recommended this particular seminar and attended as well. The seminar was supposed to be about the progress that was made by many of her students over the years.  It certainly was not. I recall one man standing up and saying “You are not offering us very much hope here!” and she was not. It was all just gloom and doom, so much so that the woman who recommended it, apologized profusely to me afterwards.

That was the last seminar that I ever attended.

Now-a-days we are bombarded with “cures” and causes on a daily basis. Back then, if something hit the news, it was a big deal and please remember that we were programmed to believe that there was really no hope and that we were supposed to be looking for a cure.

In 1998 came the “Break through” in the treatment of Autism. One mother brought her son in for gastric/digestive testing. Secretin was administered as part of the test. Internet was now available but still not widely used as it is today. I don’t believe I even had email until 1998, never mind being able to figure out the rest of the internet.

“Media reports of an individual child’s dramatic improvement after a single dose of the hormone secretin administered during a gastrointestinal (GI) procedure (Beck and Beck 1998) appeared on television and the internet.” 

They were touting a cure. I did not even hear about this until I began receiving phone calls from friends, family and almost complete strangers. I have to admit that although we were still being programmed that a cure was the only thing we should be looking for, I was a little bit afraid.

I do not believe I have ever said this to anyone other than Sandy, my boss at the time, who made the mistake of asking about it and then had to listen and watch me bawl my eyes out because I felt guilty that I was afraid of this. What if it was real? How could I not have him treated? What if after he was treated and “cured”, I no longer had the same child? I felt guilty and felt selfish for even thinking those thoughts.

That being said, and I do realize that I have said it to the point where I should just make it my blog header:

My feeling of never wanting to change him has not changed, but he is older now and I worry about the future every single day.

If I haven’t said it a hundred times, then let this be the hundredth; if I were to live forever, I would not change a thing about my son. He’s happy almost all of the time. He loves his life. He is in his own little happy world, but he won’t always be able to live in his own world, he will someday have to live in the real world. Then what?”

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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.

 

It was a confusing time for many of us. Now-a-Days, when something like that happens and we hardly blink an eye…

DC accomplished far more than I ever anticipated he would, despite the “no hope scenarios” we were offered way back then. Much of his accomplishments came when I got to the point when I stopped reading and listening to the way it is supposed to be done and did what I thought was best. We all hit that point eventually.

I had to learn on my own, to choose my battles and understand that he does not HAVE to learn to do everything that other children his age can do.

If he can not learn to ride a bike (and why the hell was that so important at one time?) then he can not learn to ride a bike. He has an adult trike and he is fine with that.

If he can not learn to tie his shoes, they sell Velcro now.

This is not to say I gave up trying to teach him things. It’s just that I let go of the things that are really not important. I let go of the mindset that he has to be like every one else a long time ago.

Because he doesn’t….

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The therapies and theories written about in this post should in no way be considered as recommendations or as proven theories.  Like today, new theories and treatments come along every day (we had much less of it due to the lack of internet) but this does not mean that any of them are tested of proven. This post is about DC and I and what was going on around us at the time regarding autism.

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Next Installment: Autism in the Old Days: Spinning and Stimming 

 

 

 

 

 

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Revisiting “Feeling Chastised”

The following was written a few years back. It was written more about the discourse  within the autism community and not about autism awareness or acceptance. In actuality, I suppose it could be looked at as a piece supporting  the awareness, acceptance and respecting the differences in the ways parents view autism. There is far too much hostility.

I am re-posting now, in this, the month of April. With all of the added awareness and supposed acceptance that has taken place over the last few years, really not too much has changed in this, our little corner of the world, or in my friend’s corner of the world. Not very much at all.

If anything; things have become more difficult….

Dear Abby – Feeling Chastised in New England

Let's all celebrate

Let me just begin by saying that since I began writing this blog I have had the pleasure of meeting a few Autistic Adults.  They are amazing individuals that do a great deal to raise awareness about autism. I “speak” with one in particular often enough to consider him a friend. He is a wonderful human being and it makes my day to “talk” with him or just read his posts. He is truly an inspiration to parents of children with autism, other teens and adults with autism. But above all that, he is a glowing example of the good things that can be found in today’s young adults in general. I don’t think of him as having autism, I think of him as my friend, plain and simple. I’m honored to have him as my friend.

My son’s autism or level of autism  is not like my new friends’. Autism affects each person differently.  Therefore, parents should not be made to feel inferior or chastised for their own beliefs. Everyone is different, everyone. There is no right or wrong when it comes to autism, just a lot of people arguing with each other, it seems.

Today I received this private message on my face book page from a friend of mine who is pretty much in the same boat as I am “level-wise”.

The fact that she did not feel comfortable posting it publicly, speaks volumes about the environment we find ourselves in with the hostility that she (and I) knew would have ensued had she posted it publicly.

(The following message is used with permission. The names have been changed to protect the innocent)

Dear Abby (Vickie)…I think I’m missing something. Why is it wrong to feel like I’ve lost something in having an Autistic son? Why are we supposed to not want a “cure” or something that helps them handle this world we live in a little better? I look at the video of Bob from birth to 18 months and there were signs, but he was still there. It was June of 1996 – he was 18 months old – all of a sudden he disappeared. He is lost to me. He will never have a normal life. He will constantly need care and supervision. There are many people that are on the much higher functioning side of the spectrum that can navigate the world today. Bob is not one of them. Why am I supposed to not want that to be different? People say you don’t miss what you never had – but I know what could have been. I know what life he could have had and now for sure will not. He will find happiness somehow; he will be as productive as his disability allows him to be. But the sky is not the limit for him. The opportunities for him are not the same as they are for my daughters. Why am I supposed to celebrate that? With all this  hullaballoo about celebrating autism over the last few months, I’ve been feeling like a minority. I think these kids are lost – lost to the life that could have been, lost to the possibilities that would have been. I feel they have a disability because they are “not able” to process and handle what happens in life the way others do. Why are we getting lost on the rhetoric? Am I missing something Vickie?

Feeling Chastised in New England

I have said this many times and in many different ways:

  • I celebrate my son as an individual
  • I celebrate my son because he is my son and I love him more than words could say.
  • I celebrate his accomplishments, no matter how large or small they may be.
  • I celebrate him because he is wonderful.
  • I do not celebrate his autism.

I write stories about my son because:

  • He is wonderful.
  • I’m very proud of him.
  • I’m very proud of his progress.
  • He makes me laugh every day.
  • He makes me smile every day.
  • He makes me worry every day.
  • I believe these stories shed a little bit of light on autism and the way his mind works – not all autism, but his.

I don’t believe anyone should be made to feel “less than”. I don’t consider my son “less than” but there is an issue. There is that life he could have had. Maybe it would not have been a better life, maybe it would have been, but at the very least he would have been able to understand it and navigate through it.

Celebrate Autism? I can’t do that. Maybe others can, but I cannot celebrate his level of autism.

Individuals should be celebrated, not the diagnosis.

Like “Feeling Chastised”, my son will never be able to live on his own. He will never be able to take care of himself. He will not know when/if he’s being taken advantage of. He does not understand danger or safety. He is verbal but really not able to communicate if something might be wrong.

My suspicion is that many of these parents in celebration have younger children or children that can function at a higher level than mine. They still have hope of great progress, and they should have hope, there is always hope. I still have hope for more progress, but living in the real world I know that even though he continues to make progress, none of the issues listed above will improve enough that I will not spend every day and night worrying about what will happen to him when I am gone. This is the stuff our nightmares are made of. What’s going to happen to them when we’re all done celebrating autism? Our “kids” are going to outlive us, people. Who’s going to take care of them? Will they be cared for in the same fashion that we have cared for them?  How drastically will their life change then? Think about it.

If I haven’t said it a hundred times, then let this be the hundredth; if I were to live forever, I would not change a thing about my son. He’s happy almost all of the time. He loves his life. He is in his own little happy world, but he won’t always be able to live in his own world, he will someday have to live in the real world. Then what?

When your child with Autism becomes an adult with Autism and your own mortality begins to slap you in the face, come back and talk to me then about this celebration we are supposed to be having.

Those of us with adult children that will not be able to live or navigate the world with out constant support, that have been in the trenches for many years, long before there was a “spectrum”, long before there were many of the services available today, deserve a little bit of respect and deserve to be able to voice our opinions as you are allowed to voice yours;  to want something more than a celebration.

I believe in raising awareness. I believe in trying to make people understand Autism. I believe that INDIVIDUALS and accomplishments should be celebrated. I also believe some of us need more than that.

My only wish is to be able to die in peace knowing my son will be okay…….

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’.

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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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There’s Still More! (Seriously, there is!)

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We are about to venture into the ridiculous….

If you read my last post you will know that I because of an account I had, I was required to pay back Social Security $12,000.00 in benefits – which I knew was dead wrong.

It took them all of 4 days after receiving the account information and the spend down documentation to send me a letter informing me that I had to pay back a year and a half of DC’s Social Security benefits in the amount of $12,000.00.

After sending two appeal forms and hearing nothing I finally got to talk with someone (On December 17) who informed me that the issue was disposed of! They were very quick to let me know I owed them a large sum of money but very lax in notifying me that the case was disposed of. Understanding the incompetence of this agency, I asked for a letter verifying that fact. I was assured that a letter was going out that day.

In the meantime, I was notified that my step-father, without my knowledge and against my expressed wishes, made DC the beneficiary on a small life insurance policy in the amount of $1500.00. He is not allowed to have more than $2,000.00 in resources at any one time. $1,500.00 is less than $2,000.00, you say? He should be all right, you say? No! That is not how it works. To determine his resources, they take the highest amount of money in his account for the month and add the extra resource to that (If he did not have an account, then they just take the amount of his monthly check and add from that). The highest balance will always be the amount of his Social Security check, so it will always come up over $2,000.00, not by much but it will be over (a friend of mine’s son had his benefits suspended for a .20 <twenty cent> overage).

And Hey! – Fun Fact!

If you would like to be called stupid, hysterical and be screamed at by everyone that you know and are related to, just have something like this happen. It is just fun, fun, fun.

Just to answer all of the “questions” asked “very loudly” of me (because everyone else without adult children with special needs knows better, you know).

No! I cannot just not accept it because the insurance company is required to report it under his name as abandoned. This means that his benefits will be suspended until I spend it down (without actually having the money because I did not accept it) and will still be on the hook to pay back whatever amount they determine I should pay.

No! I cannot take it and deposit it in an account out of state, because the act of taking it makes it a resource. It does not matter where it goes.

No! I cannot deposit into his Special Needs Trust, an Able Account or a Burial Fund, unless his trust etc., was the designated beneficiary to begin with. Yes, depositing it into one of those places MAY qualify as spending it down, but it would still be considered a resource because it was paid out to him BEFORE going into one of the accounts mentioned above.

My step-father’s executor gave the insurance company my contact information. The insurance company, because DC is an adult, needed his guardianship papers so that they could legally talk to me.

Yes! I do have to send them his guardianship papers! We, as parents of special needs children HAVE to go to probate and become the legal guardians of our children when they turn 18 because in the eyes of the state and federal government – special needs aside – they are adults, and should legally be able to make decisions for themselves. If I were not his guardian, I would not be able to talk to his doctors, meet with his day program, chose a day program, make appointments… you get the picture. Bottom line is that HE IS AN ADULT AND BECAUSE THE POLICY WAS IN HIS NAME, THEY ARE NOT ALLOWED, LEGALLY TO TALK TO ME ABOUT ANY OF THIS WITHOUT HIS GUARDIANSHIP PAPERS!

Yes! They could make me pay back $12,000.00 over $1500.00 – they tried to have me pay back $12,000.00 over $2,600.00.

Even though I knew all of this (because I DO know things), I contacted an attorney who verified everything I just wrote.

He also said that I could actually use some of his monthly expenses as part of the spend down.

I already knew the drill, but he advised me to report it as soon as possible. As soon as I received the check (on Dec. 24th) and a copy of the policy I called SS (on the 27th, the first day they were open after the holiday) and reported it. Since I was able to use his expenses as part of his spend down, I was able to fax that and all of the account information to the number I was provided, so at least his SS would not be suspended until  they determined how much I had or did not have to pay back.

Not having heard a thing by January 25th I called again. This time I was speaking with a man, who I was familiar with, not personally but via people that I know that have had to deal with him, so I was on guard. First, I explained about the appeals and that back on December 17th I was told that the first situation was waived and has been promised a letter verifying that.

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

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

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

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

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

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

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

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

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

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

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

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

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

– Cautiously optimistic.

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

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

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

Wait for it….

“WAIVED.”

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

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

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

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

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……………..

 

2016 Top 5 Posts, #2 1/2 – But does he know……

The following post was not written in 2016. It was written two years ago. I am including it as part of my “Top 5 Week” because it actually received more views this year than it did when it was originally posted. I also have a post banging around in my head that runs along this line, so I decided to give it it’s rightful place in the line up.

Two years later; I still really do not know…..

But does he know……

Lost in thought NY

I’ve been asked quite a few times –  twice just this past week, if I have ever told DC that he has autism and if so how did I approach the subject. Most of the questions came from mothers with children that are just beginning to or do already realize that they are different from their classmates and friends.

To be perfectly honest, I really do not think that DC is aware that he is different – I do not know if this is a good thing – at the moment I am going with – yes, but I really do not think he sees any differences between himself and other ‘men’ his age, or anyone for that matter. I really do not believe age is a factor in anything he thinks about or notices. I don’t think age means anything to him at all.

That being said, it is never perfectly clear just what he might understand and what he does not. I really do not know what goes on in his head at times. I Know that just because he doesn’t seem to notice or understand, does not always mean that he doesn’t. Going on the small chance that he may actually know that he is different… yes, I have told him. I have told him many times, since he was very young.

We don’t have “sit down and talk about it” sessions because he becomes overwhelmed with too much information. He needs examples, he needs to see something. We also can not  talk about it too often – when we talk about anything too often, it makes him anxious – he thinks something is wrong.  I never want to give him the impression that anything is ‘wrong’ with him. He doesn’t need that.

I have to take the opportunities when they come. Because he is very visual, I try to approach the subject when we are watching TV or reading something that happens to have a character with Autism. The first time I brought it up to him, we were watching TV.

I remember starting out by pointing out the character.

“DC, do you see that boy?”

“yes”

“He has autism. Do you know that you have autism too”

“yes” (he answers “yes” to just about everything)

“Do you see the way he flaps his arms? Who else does that?”

“You” (pronoun confusion – ‘you’ instead of ‘me’)

“Autism means you and the boy may think about things a little bit differently than Mom and some of your friends. Can you say ‘Autism’?”

“Autism” (usually I can type his pronunciations, but I can not type his pronunciation of the word Autism)

We’ve gone through this scenario many times – arms flapping – loud noises – whatever happens to be going on with a character or story.

We talk about it when we participate in an Autism Walk or fundraiser. We talk about which of his friends have autism. I can not get into too much into detail with him, I just point things out as they come up – a character, a fundraiser, his friends….

I point it out to him when he is watching his sign language sing-a-long DVD’s. I explain to him that his autism made it harder for him to speak at first (he was non-verbal until he was 7), this is why he went to speech therapy with Liza for so many years.

He was always very happy to see Liza every week. He worked hard.

(He LOVES Liza)

Before he learned to speak, he used sign-language.

He was always happy to see Sandi for sign. He worked hard with her as well.

(He LOVES Sandi)

Speech therapy and sign language were “good” things in his mind – fun time. This can be directly attributed to the insight and resourcefulness of both Liza and Sandi and the way they choose to make the process fun by working from his interests and incorporating them into his sessions. I am 100% sure that Liza can recite the “Wizard of Oz”, in every variation to this day. They made him happy.

We’ve discussed* it many, many times over the years and in many different ways, but for a boy who remembers everything, he can not give me the word “Autism” at any other time.  Unless I ask him to repeat it for me, he does not seem to even remember ever hearing the word. This just strengthens my belief that he really does not understand any of it. He does not know that he’s different and for now, that is fine with me. My goal here is not to make him feel that he is different.

So why do I continue to talk about it?

On the chance that he does recognize this now or later on, I don’t want him to wonder and not be able to communicate the question to me. This isn’t the sort of question he would ever be able to communicate.

And though I am relatively sure he does not understand, it is possible one day he may understand, or partially understand, but over and above all of that, if he were to hear “Autism” or “Autistic” elsewhere I want to be sure he doesn’t think it something that is “bad” or “wrong with him”.

I don’t and will not harp on it – I don’t feel the need to have those long heart – to – heart flowery discussions about it. He is happy, he knows he is loved. I will continue to mention it from time to time when the occasion arises, just so the word is recognizable to him and just in case he should ever wonder. If there comes a time when it seems that he might need to know more then I will try to explain it a little more in-depth or try to come up with a different way to explain it to him. For now, he seems to be just fine knowing what he knows and that is really all I want.

I wish I had a better answer for the people who asked…

Have I told him?  – Yes.

But does he ‘know’?

I may never know for sure….

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 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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Insert: ‘Colorful Metaphor’ (or: The things I am tired of hearing)

colorful

These and many variations of the same, are comments I often hear

  • “You are so lucky that DC can travel”
  • “You are so lucky that you can take him places”
  • “You are so lucky that…… blah, blah, blah….

Luck does not have very much to do with it! DC’s accomplishments took a great deal and many, many years of hard work. Now I do understand that all the work in the world may not always make a difference and I am certainly not saying that the parents who are having a more difficult time of it did not or are not putting in the work – but seriously, why is it always about luck?

How many times have I heard that same line? “You have it easy, DC is such a good kid.” – Why are we made to feel as though we should apologize for our children making strides and accomplishments? Isn’t that the goal? I have also had other parents tell me that they are made to feel as if they have nothing to contribute because their children are just not ‘difficult’ enough by someone else’s standards. Or the line that I love the best – “You just don’t know what it’s like”. I have heard that one many times from parents of autistic children as well as parents of NT children. No, maybe I don’t know exactly what your life is like but I can certainly say the same to you.

When DC was four years old, his school speech therapist informed me that he would never speak. He speaks. He is verbal. Conversation is difficult, but he is verbal. Would he be able to speak now if I believed the nonsense that this therapist was spewing? No, I went out and found him a private speech therapist while continuing to fight with the school system.

I can take him places because I TOOK him places. I am a single mother – have been for a good 23 years. I took/take him everywhere. If I did not, he or I would never have left the house.  It wasn’t always successful, many times it was an out and out disaster. Most times we were both in tears by the time we left but we kept at it.  Did I let it bother me or deter me from taking him shopping when the check-out man at the Health Food store saw fit to stop the entire line while DC was wigging out (we didn’t have the official “meltdown” word way back when) and I just wanted to pay and get out of there before I burst into tears? When he found it necessary to give me his opinions – in front of a line of waiting customers – about what vitamins and/or supplements I should be giving him to calm him down? <Insert colorful metaphor>

Should I have stopped taking him out when he would grab food off of other people’s tables when we walked through a restaurant? (I always offered to replace the food or drink he may have touched before I could grab him). No, I learned that I had to hold both of his hands and tell him over and over again that he should not touch other people’s belongings, until he learned and until I felt that I could trust him not to. That took years.

Should I have just given up and just stayed home when he had ‘meltdowns’ and frightened the other children repeatedly in his gymnastics class, birthday parties and a number of other places? I don’t think so. Keep in mind that Autism Awareness/Acceptance was not even an idea back then. There was next to no information, guidance or support. We were pretty much on our own. IPads? We barely had the internet.

I could go on and on…….. and on…and on… but I won’t.

Why are we not allowed to celebrate the accomplishments? Why should I be made to feel as though I should apologize that he is a happy guy?

Don’t get me wrong, I am not complaining about any of the work. This boy has worked just as hard if not harder than me. I am quite positive that many people are in the same boat and we will be in this boat together forever. Everyone has their challenges and we should respect those challenges, even if the challenges are not visible.  We can’t just take everything at face value.

DC is 24 years old. He is a happy guy.  He has a good life. He is the joy of my life. But even with all that he has accomplished 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. Even though his father and I have taken steps to be sure he is provided for, and have designated guardians in the event that anything should happen to both of us, those people are all my age or close to it. He will long out live all of us and realistically I should be looking at people his age, but I really do not have any options in that age group – again,  he doesn’t have  brothers or sisters. He will probably 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. This is devastating to me. It is what keeps me awake at night.  It breaks my heart already.

He deserves to live the rest his life just as happily as he lives now; and that is the one thing I can not promise him.

How lucky is that?

**** I have written and rewritten this post many times over the last few months attempting to reduce the high on the  hostility meter to at least a mid-level reading. I hope I was successful. 

 

 

 

 

 

 

 

 

 

 

 

 

 

I think there’s a form for that…

IMG_3636

Last week was DC’s 6 month review IP (no “E”, he is out of the school system) meeting. There are required reports that I have to fill out after each and every IP and review meeting  (partially because DC has afternoon staff until I come home from work).  Every report says just about the same thing, but still, I have to write paragraphs upon paragraphs of the same thing each time. Then, as I’ve written about before, there are the annual reports that seem to all come along all at the same time. Right before this IP meeting, I received a new report in the mail – A review to make sure that DC is still disabled.

The questions do not seem to apply to him at all. They seem to apply to a person who is on SSDI – Disability (someone who was once out in the workforce and now can not work due to an injury or an illness). I do not know how to answer any of these questions because they really do not pertain to him at all.

I was told that even though this does not have anything to do with him and it is for a type of disability benefit that he does not even receive, I still do have to complete the form and return it.

I was also informed that no, I could not just write across the page with a black sharpie “HE HAS AUTISM – IT DOES NOT GO AWAY!”

So off I go, to try to fill out another form that has nothing to do with my child, to prove that he still has autism for a benefit that he does not receive and does not qualify for (while waiting for the internet repair guy….. again).

While I do that, you all can feel free to read a post from 3 years ago (before I developed that aversion to opening my mail) about the very same subject; forms and inefficiency.

Does everything really need to be this difficult?

Please Note: The following is a rant, plain and simple; a rant, a vent, whatever you would like to call it. There is no moral to the story, no happy ending, no “Ah Ha” moment, no conclusions to be drawn (actually there are many conclusions to be drawn, but we won’t say them out loud) – just a plain and simple “I’ve had it” kind of rant.

For those of you who don’t have a child with special needs or have young children and haven’t had to think about the “adult” side of things, here’s how it works. I don’t know if it’s the same in every state, but this is the way it goes here.

When your child reaches the age of 18, depending on the severity of the disability (can he/she make decisions for themselves)  the parent is required to apply for guardianship of their own child otherwise they will not have the ability to make decisions for that child. The state views them as adults, period, and this means they should be able to make their own decisions, medically, financially, etc. (Paperwork, Probate hearing)

Due to budget cuts right around the time DC was to about turn 18, anyone not covered under Title 19, lost their case worker through Department of Developmental Services. DDS is where the funding comes from for their work/day programs after they leave the school system at 21.

This is the time in our children’s lives when you really need to have a case worker. This is when you have to begin looking for a program for them when they leave school.

Before you can apply for Title 19, you first have to apply for (SSI; not SSDI) Social Security (tons of paper work).

After you apply for Social Security, you can begin the application process for Title 19. I am fortunate that my case worker, Ruthie, at the time, was there to help with this. She came to my house and my friend who has a son the same age as DC, came over and we all did the paperwork together. If not for her, I would still be sitting in the same place trying to figure it all out.

Now we’re done, right? Wrong!

Every year I have to fill out the forms for Guardianship (when they come, sometimes they don’t) again – just to be sure DC is still disabled. Not a big deal, just annoying. But seriously, he has autism, it doesn’t go away.

There is an annual report for Social Security as well as an audit or two during the year “just because”. And….. now that he is in a work program and makes a tiny bit of money, I have to remember to call in during and only during the first 6 days of the month to report his wages for the previous month to Social Security, so they can reduce his monthly payment appropriately.

Also once a year we receive the annual Title 19 redetermination, which is basically as much paperwork as the original application. I’m not complaining, I can live with all of this, but it is a LOT of paperwork!

Complaining begins here:

Now, I may not look like the most organized person in the world, but I do get all of these things done, on time, always!

DC’s redetermination was due on July 20. On July 16th I mailed a giant package with the application, the year’s worth of check stubs, his last bank statement and insurance cards – everything they asked for in the instructions. This was the fist time filling out a redetermination since he had begun working.

Done! PHEW!

Wrong again!

On Monday, August 26th I received a letter from DSS that his benefits had been discontinued because I did not complete and return his redetermination! There was a form included so I could request a hearing. This form had to be completed and returned by August 30th – in four days!

“Calm” was never and will never be a word used to describe me, so the next morning a dragged all of my “books” to work to re-copy all 43 pages of his redetermination, because at this point I can’t think about anything else.

First, I decided to try to call the number (silly, yes I know). There was really no menu item that described this situation and no way to talk to a person, so I moved on to faxing the hearing notice and the copies of the redetermination to the number provided. The fax was cutting out and disconnecting and after I don’t know how many attempts, I gave up trying to fax it all.

Knowing this was going to take more than a fax at this point, I took my lunch break at 9am so I could copy all of these forms, check stubs, insurance cards and bank statements. I decided I would mail one copy to the local office and the other to the address that was on the hearing notice. Two more giant packages in the mail – Done!

I was not confident that either of these packages  would ever be seen by anyone, as they never received the original and having only 3 days now to request a hearing, I found different phone # in all of my 3 ring binder records and tried again to call. Fortunately, I was able to put the call on speaker and do some work while I waited otherwise I’d be putting in for vacation time to finish all of this! Unfortunately, all of my co-workers had to listen to “Your wait time is…. more than 20 minutes” over and over again.

An HOUR and 9 MINUTES later (just a tad more than 20 minutes), an actual person picked up. I explained the situation as calmly as I could.

Her reply was: “Oh, we’ve put a new system into place where all the redeterminations go first to our scanning facility and are in-putted into our system for us to work on. Because the system has been up and down and they are very backed up, we probably do have your original redetermination and we have extended everyone’s deadline to November 20th. His benefits have not been cancelled.

Seriously? It may have been more effective to put THAT in the letter instead of telling me his benefits were cancelled and I only had 4 days to do something about it!

Those that know me can imagine where the conversation went from there, so I will spare all of you the details.

End result, she gave me her fax # and I faxed another 43 pages directly to her.  She did explain that she is not the person that would be working on my son’s case, but I wanted them to go to SOMEBODY.

So at this point, there are 3 packages of my son’s information floating around somewhere and one more in the hands of this person who has nothing to do with my son’s case.

She also informed me (after receiving 43 pages) that they really only need the last 4 pay stubs. Hmmmm….. Maybe the redetermination instructions could say that!

So….

  • They lost his original packet (but maybe not, we may never know)
  • You can’t talk to a person at the number they provide.
  • They mailed letters to clients telling them their benefits were cancelled. (The person I spoke with said they received 1500 calls that morning)
  • They extended the deadline without bothering to tell anyone (This would have been something to send a letter about –it may have gone a long way to reduce the amount of calls they received.  And really, nobody at DSS found it odd that 1500 cases were being cancelled at the same time, due to non-completion of their redeterminations? – Somebody had to MAIL all of these letters!)
  • They sent a hearing notice to return by fax within 4 days with a fax number that clearly doesn’t work.
  • And I still don’t know if anybody that actually works on his case has his forms at this point.

.

I feel like there was nothing accomplished here and there was an enormous amount of wasted time on both sides.

I suppose I will be in the dark until I get my notice in November.

The Santa Train revisited….

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

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Lessons learned on the “Santa Train”

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(Code word of the day: “Supplement”)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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