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)

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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. 

 

 

 

 

 

 

 

 

 

 

 

 

 

“What’s the matter with Ren?” …. Not a thing!

Here we have the final installment of our visit to RI Comic-Con – I did say that I had a lot to say about it, didn’t I?

Again, we are going  back to Friday night – the best night of the Con, in my opinion….

We arrived in Providence on Friday afternoon. We had plans to meet with Wendy,  an old friend of mine from the old neighborhood and also of Wendy Jane’s Soul Shake fame. Although we are in contact via Facebook, I do not believe that I have laid eyes on her since high school.

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*Wendy Darling, as she has now come to be known, looked exactly the same and I was more than a bit jealous that she hadn’t aged a day. She brought us to The Duck and Bunny, which was only a few blocks away from her house. It was such an adorable place. The chocolate and peanut butter cupcake was exceptional and the fries served in a flower pot….. so cute! *Wendy Darling asked him a question at one point and he answered with a “yes”. He then continued to repeat the “yes” over and over again. He has done this quite often since and I am sure he has done it before this, but when you are used to someone repeating things over and over again, it doesn’t always click that it is different from the normal repeating of words or phrases. It was more obvious to me that he was stuck. Since then, I have noticed it more. He seems to get stuck on a word and can not make his way out of it.  I often wonder if it is the meds, but of course that is one of those questions that can not or will not ever be answered. It only took me saying “I think you are a little bit stuck on ‘yes’ there.”, to which he answered “yes” to get him unstuck.

The convention center was very close to *Wendy Darling’s house so we said our good-bye’s and headed out.

A month or so before, a RI Comic-Con status came up on my Facebook page announcing the addition of Christy Carlson Romano to the list of Comic-Con guests. Without thinking and because DC was right there, I told him about it. This was all I heard about for the following month. I was kicking myself for even mentioning it to him because other than the announcement and her photo on the site, I could not find her listed in the photo ops, the panels, or autograph sessions. There was just no indication of where she would be.

DC was and still is a huge fan of Even Stevens, particularly “Even Stevens Influenza – The Musical” which for some reason has never been released on Video, DVD or Blue Ray. Still, he knows every word to every song and has been able to find most of the clips on YouTube. Because of Christy, he is also a big fan of Cadet Kelly and Kim Possible.

Again, I will say that I am so happy we went on Friday night! I was on a mission to find her or at least where she would be when we came back on Saturday. I knew that we could not leave RI without finding her. I would never have heard the end of it – never!

While we were waiting in the Supernatural room on Friday night, we happened upon the only helpful volunteer that we came across over the entire weekend. We asked him (very quietly) where we could find Christy Carlson Romano. Luckily, he knew who she was and he directed us to the “Animation Room”. The Animation Room was over a bridge in a different building. We headed over there not expecting to see her,  but hoping to find her table so we would know right where to go on Saturday. Personally, I would have loved to have spent more time in that room – there were so many other people I would have liked to see, but we were on a mission.

We came around the corner and there she was at her table with only one person in line! I did not know whether DC would be able to control himself or not when he saw her. We got in line and DC jumped up and down and squealed while she was trying to talk to the people in front of us. Me? I was so relieved to have found her that I didn’t think to give DC my usual instructions – don’t touch her hair, don’t pick her up. The moment the people in front of us left the table, DC charged behind the table before I could stop him and gave her a back-crushing hug. I was worried that we were going to have another Snow White incident (see: Rules I thought I would never have to make), but he was able to restrain himself, or he remembered the rule without being reminded. In either case, he did not pick her up. But, “Don’t rush the table” is now officially added to THE LIST.

DC is a big boy man and I would not blame anyone for being frightened seeing him bounding towards them. I have to hand it to her, she was not and if she was she hid it well. She was so fabulous with him. She spoke to him in a happy excited voice, which just excited him more. She held his hands, possibly in self defense, but it didn’t matter – he loved it.  She asked him questions. She sang part of the Kim Possible song. She asked him his favorite song and he went right into a partial rendition of “We Went to the Moon in 1969”

He must have really wanted to talk to her because normally if he knows the words to a song, he will not stop singing midway – he has to sing it to the very end and he did not this time. He wasn’t going to waste his precious time with Christy singing.

Meeting her was the highlight of the weekend. Yes, he was over the moon when he met Alex Kingston (see: Hello Sweetie), but this was even better. This was right up there with meeting Cinderella for the first time.

Normally no matter how much he loves something or someone when we go to an event, he will always just give me the last thing he did as a reply to “what was your favorite part?”. Four months later when asked what his favorite part of Comic-Con was, he will still tell me that it was Christy Carlson Romano, which was not even close to the last thing he did at Comic-Con.

She must have really made an impression……

DC and Christy Carlson Romano

 

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*Wendy Darling – for those of you that do not live Disney 24/7 – Wendy Darling is from Peter Pan.

 

 

 

 

 

 

 

 

 

 

 

 

I think there’s a form for that…

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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.

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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.