Twenty-Five

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.

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……

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

Posted by TakingItAStepAtATime

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!

Posted by TakingItAStepAtATime

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.

*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……

********

*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…

Posted by TakingItAStepAtATime

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 16^th 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 26^th 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 30^{th –} 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 20^th. 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.

That’s the way it should be-eeee

Posted by TakingItAStepAtATime

A repost of an event from two years ago, in honor of my friends that always come through, put up with and go along with not only attending these events but my over the top, out of their comfort zone ideas.

They will not say that they did not have fun!

But really, they are the best!

From February 27, 2014 (Event Date)

“We go together………..”

…like Ramma lamma lamma Ka dinga da dinga dong
Remembered forever like Shoo-wop sha whada whadda Yippidy boom da boom
Chang chang changity chang shoo bop That’s the way it should be
Waooo Yeah!”

These Kids Rock! They really do!

That was originally all I intended to say. I wasn’t really considering writing about this, but……. as I was thinking about just how proud I am of each and every one of them and just how much DC and his friends just rise to the occasion and always have a great time together, I just had to mention the fact that not only does DC have the best friends anyone could hope for…. I do as well.

As I wrote in an earlier post:

***I am fortunate to have friends that are willing to go all out for something that DC loves so much; we all took a line from that song and dressed appropriately for the Sing-A-Long. He and his friends had a ball and I think after the initial embarrassment, my friends did as well.***

DC and I are very fortunate to have these people in our life. I am not just talking about the sing-a-long we just attended, but in general, these people are just the best, THE BEST!

DC and his friend BB love Grease. BB is a long-time fan, DC became a fan because of him. When I heard the local theater had scheduled a Grease Sing-A-Long, I knew we just had to attend. Everyone agreed to attend and then I proceeded to harass them for months about costumes. I will admit that I can be a little bit high pressure when it comes to costumes (just a little bit), but I am sure they expected it and if they didn’t, they put up with me anyway. I am sure the last thing the adults wanted to do was to wear a costume again (Halloween is over, can’t we get a break?) but they agreed.

But…. did they expect to be wearing toilet paper rolls? I doubt it. I think they actually thought I was joking when I first brought it up. They quickly realized that I never joke about costumes so the “roll collection” process began. BB and his Mom, Donna were not able to attend the Sound of Music event with us, so as BB was looking forward to wearing his “Grease Garb”, I don’t think Donna realized that she would also be in costume as well until about a week before the event.

We collected our toilet paper and paper towel rolls and headed to Tonya’s house one Sunday afternoon. Tonya being the craft genius and glue gun wizard, was able to figure out just how to do this.

Talk about “Above and Beyond”; she sat there for hours gluing toilet paper rolls to foam strips! All that we had to do was supply our heads.

Glue Gun Wizard

They looked fantastic! They were unexpectedly comfortable too!

We headed out to the theater on Thursday night in single-digit weather – not wanting coats to muck up the costumes – it was COLD! We had 10 seats in the first row of the upper orchestra section. Coincidentally a friend of mine had the rest of the seats in that row! Together, we made the best row of costumes there (my opinion only, but I firmly believe this to be true 🙂 ).

We sang, we danced, we had many, many photos taken of us as a group and of us with strangers. We were interviewed and photographed by the local news paper. Those under the delusion they would not be noticed, were wrong.
The “kids” had so much fun singing, dancing and using the props provided by the theater. They just ate up all of the attention they were getting.
The adults had a great time, singing and dancing as well..

except for this guy……..

Except this guy – Grease Sing A Long – Beauty School Drop Out

Those still under the delusion of anonymity, had that shattered when they were plastered all over the news on Saturday.

The Theater’s Facebook Page

As the show was on a Thursday night and not on a weekend, we weren’t able to go out to eat in full dress afterwards – this had to be some consolation to the adults anyway……

But all joking aside, we did have a wonderful time. I can’t say enough about all of them.

Walking around in public wearing toilet paper rolls….

the truest measure of friendship….

Thanks to all of you!

*Thanks to my friend *Al at work, who always comes up with a fantastic photo of our outings

“Change is the essential process of all existence” ~ Mr. Spock

Posted by TakingItAStepAtATime

But oftentimes “change” or loss is something that we do not embrace very readily or happily.

And there are those days when the Facebook memories, we enjoy so much are not very enjoyable at all…..

It is hard to believe that a year has come and gone ~ I have said goodbye to many of my childhood/teen age icons in the months since, but this was the first and by far, the worst in that long line of loss….

Repost Feb 2016 – from Feb, 2015…..

“Logic is the beginning of wisdom; not the end.”

“Logic is the beginning of wisdom; not the end.” ~ Mr. Spock

From the post that I re-blogged yesterday: To Boldly Go…..

I admit it…

I am just a big old Sci-fi geek from way back. I watched the first episode of Star Trek back in 1966/1967 (?) and I was hooked – for life.

The first “sign” that DC learned when he was very young (for those of you that may not know, DC was non-verbal until he was 7 years old) was the “Live Long and Prosper” sign. If and when he saw a picture of Mr. Spock or heard him mentioned, he used that sign.

I’ve been in love with Star Trek and Mr. Spock since the very first episode aired back in the 60’s.

I loved the adventures in space.

I loved that all of the crew members were treated with respect and as equals.

I wanted a tribble.

I added new words to my vocabulary, most memorable – “poppycock”.

I wanted to be a part of the crew, but not in a red shirt.

I loved everything about Star Trek.

I always had an affinity for the Mr. Spock character. I loved his no-nonsense purely logical way of looking at things. I especially loved the episodes where he was confused and/or outright annoyed by human behavior – A piece of the action comes to mind.

I remember being sad when the show went off the air. But all was not lost! 10 years later “Star Trek the Motion Picture” was set to be released. I anxiously awaited opening day and although I admit I was a little bit disappointed in the film, I was thrilled to see all of my favorite characters again.

The movies that followed were so much better than the first “Motion Picture” and I saw each and every one of them more than once until the 2009 release of Star Trek the updated prequel. It was there that I stopped. Nothing against the movie or the actors. I’m sure it was and they were just wonderful. I just did not want to see new actors playing the parts of my favorite characters.

I remember when The Next Generation was being advertised. I was outraged that anyone would try to create a new Star Trek even if the person creating it was Gene Roddenberry himself. How Dare He?!!! My boyfriend at the time, knowing how much I loved Star Trek taped it and brought it to my house for me to watch. I flatly refused. I would NEVER watch a “fake” Star Trek, Never!

Well…. never say never.

As it turned out, I loved it and every other that came after.

Not only was Mr. Spock my favorite character but I really loved Leonard Nimoy the actor. He was the only reason I was at all interested in watching Mission Impossible (the TV show). I grew to love the show, but Leonard got me there. I will also never forget being glued to the TV watching “In Search Of…”.

I did at one time own the first, second and a few other editions of the Primortals comic books. I wish I knew what happened to them.

Then imagine my excitement when he showed up as William Bell on Fringe! Not to mention playing himself on The Big Bang Theory!

That Spock character resonates a bit more with me now than it did back then, if you can believe that possible. Having a child with autism has made me view Mr. Spock in an entirely different light. His matter-of-fact, logical, no grey area persona reminds me a bit of my son. It reminds me of the way many people perceive people with autism. However, like many people with autism, in spite of that matter-of-fact, no grey area, logical approach he had to life, his duties, his interaction with others, Mr. Spock showed compassion, empathy and yes, even friendship to those around him – in his own way.

Leonard Nimoy was one of my childhood heroes and I suppose you can say that I carried that adoration with me into adulthood. I was heartbroken to hear of his passing. There will never be another like him. It may be silly to you but I really feel that a piece of my childhood is gone forever – a small piece that I will never be able to get back.

Live Long and Prosper ~ wherever you may land.

“Of my friend I can only say this: of all the souls that I met on my travels, his was the most… human.” ~ James T. Kirk

*******

And while you are still here, please check out two more posts from Blogger friends of mine:

Thank you Mr. Nimoy – from Autism Mom

RIP Mr. Nimoy – from SSirica

“You can’t stop the signal, Mal”

Posted by TakingItAStepAtATime

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

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

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

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

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

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

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

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

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

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

Moving on….

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

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

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

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

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

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

*Firefly ~ Bushwacked

Flights, Ships, Fears…

Posted by TakingItAStepAtATime

As I make preparations for our upcoming vacation I notice that I am more apprehensive than I usually am. I am worried about DC’s seizures. I am worried about being on a ship if he should have a seizure. His doctor informed me that DC should not go swimming or even take baths any more. He seems to be fine with this now, but who knows how he will react once we are there. On the plus side, DC does not have as much interest in swimming as he used to, so I am hoping it will still be “fine” with him once we are in the warmer weather.

I am also reminded of an airport incident back October 2014. I was angry that the TSA Agents frightened and upset DC. I was more angry that they did not treat him as a human being. After writing the post below and thinking about the situation some more, my anger turned to fear about what COULD have happened.

DC is not aggressive, he never has been… but we never know what someone will do when frightened. DC is terrified of dogs. When a dog he does not know (even a dog he does know) comes at him as dogs often do – his first instinct is to run or hide behind me. His next instinct is to kick. He is not being aggressive or trying to hurt the dog, he is just frightened and wants the dog to go away. It is instinct. It is a reaction, plain and simple.

Having this agent grab him and search him as he did frightened him into the closest thing we’ve had to an actual meltdown in years. I really thought he was heading for one. It took awhile but he was able to get himself together. What if DC, in his frightened state, kicked him or hit him? What if he tried to run away? What would have happened?

If these people saw fit to treat him this way, KNOWING he is autistic, I am terrified to think of what they would have done if he lashed out at them. I would like to say that I don’t want to think about it, and I really don’t want to think about it, but I have to – of course I have to……..

The more stories and news reports I hear and read, the more fearful I become.

From October 2014 is an excerpt of that post:

Off we go….. (almost)

Flying:

The flight is also making me anxious. I am not one who can ever sleep on a plane, ever. I can’t sit still in those seats. DC, on the other hand is very good on airplanes – now, not so much when he was young – but he is really good now.

DC has flown quite a bit, but this will be his longest flight so far. Security is always a bit overwhelming for him, but he gets through it. As many times as he has flown before, he never had to go through the body scan until our trip in October to North Carolina’s Mountain of OZ.

There were a few times over the years when the security lines were not very busy and I wanted him to go through so I could explain it to him without holding up the line, but as soon as I mentioned “Autism”, they whisked him though the old walk-through before I had the chance to finish my sentence. That was fine, but I really wanted him to do it once in case there was ever a time that we weren’t given the choice. Of course I do explain it all to him while we’re in line and make him watch what everyone else is doing, just in case but as you know, no amount of explaining can take the place of doing.

Heading home from the Charlotte airport – it happened. He had to go through the body scan. As always I explained and showed him what he had to do while waiting in the line. Doug went through first as always and waited on the other side. I was behind DC. The security people saw us giving him instructions and the woman let me get up close so I can show him exactly what to do. He put his feet on the foot prints and raised his arms and waited for them to tell him he was finished. He did a great job.

He turned to walk out of the body scan when the guard on the other side near where Doug was waiting, grabbed DC with absolutely no notice and without saying a word and searched him! It happened too fast for either of us to react! DC was now screaming “Not all right! Not alright!” while I was trying to get through the scan to get to him. Both security guards saw us giving him directions. I told the woman he has Autism. I thought that they ‘got it’. There was no way they could not have seen that maybe they should approach with care or at least say something to him before he was grabbed and patted down.

I finally made it to the other side and DC was still yelling and really could not function – he couldn’t get his shoes and other items off of the conveyor belt – he just continued to yell, fists in the air “Not all right!”. Now all of the other security people in the area were watching as I tried to calm him down. I was praying that none of them would say anything or try to approach him and make matters worse. He was really causing a “disturbance” in the airport. This went on for a good long while. I had him sit down and tried to explain to him that he did everything correctly. The man should not have grabbed him without letting him know first. This was not his fault and he had every right to be upset. Eventually he did calm down and there were no aftershocks on the flight home.

People do at times overlook him completely and direct their questions to me instead of talking to him. I do always ask him the question myself and make sure he gives the person the answer himself. I mentioned earlier in the post that I thought that there was no way on earth that the security guards did not understand even before I explained that DC has Autism. Now as I think about it, I wonder if they actually did understand and decided that due to his Autism, they did not really need to talk to DC directly at all…… and THAT is a problem.

***

Versions of this post were also published:

On the Mighty: “My Son Did a Great Job at Airport Security. But This Guard Did Not.”

and at The Behavior Station

Those pesky tree branches…

Posted by TakingItAStepAtATime

tree branch

I know that I have written more than once about DC’s inability to communicate to me or anyone else if/when something might be wrong. There have been very few times that he has actually volunteered information to me when he was not feeling well or when something hurt or was bothering him.

Most of the times when he does communicate a problem to me, it is really just a ploy to cover himself in Band-Aids:

DC: “Mom, my leg is killing me.” (there was nothing wrong with his leg, I checked)

Me: “What happened to your leg?”

DC:”I broke my leg.”

Me: “How did you break your leg?”

DC: “Tree branch. Ouch!” (we are in the house)…

The lengths that he will go, to plaster himself in Band-Aids.

A tree branch seems to be the number one culprit in many of his injuries. This leads me to believe that at one time or another a tree branch was indeed the reason for an injury. When? I have no idea, but once he comes up with an answer he likes, it usually becomes one of his standard answers.

More often than not the answer I get is Nothing ‘wong’ or Nothing happened. Although DC never really gets cuts or scrapes – which I assume is the reason for his obsession with Band-Aids and really is not what I’d call accident prone, he does always seem to have an odd mark or “spot” somewhere or another. These “spot” mysteries oftentimes take a good amount of time for me to figure out. He is not always a big help in that area.

There was the one time that he came home from his senior class picnic with a red mark (scrape, but not really band-aide worthy) on his arm. When I asked him what happened, he told me that his IA (Para, to some of you) Mrs. G. pushed him into a bush and he fell down. Now, if I were a more paranoid person (hahaha, who am I kidding, we all know I am) I would have believed this because He Was Actually Telling Me Something, but I have known Mrs. G for years so his explanation did not hold water. Of course I did not tell him that I didn’t believe his story because: 1. He actually told me something and I didn’t want to discourage him from doing so in the future and 2. I assumed that he probably really did fall into a bush and Mrs. G was there to help him out. ~ It’s all in the translation. I spoke with Mrs. G the next day and yes, my version was correct.

Or the time that I noticed a large quarter sized mark on the side of his leg/hip one morning before camp. I could not for the life of me figure out what happened. He was offering no information at all. I asked the camp nurse to take a look at it. She did not think it was any kind of bug bite (I am always concerned about bug/tick bites when he is at camp). I asked DC again what happened he just kept saying “swing”

“Did you fall off of the swing?”

No, swing.

“Did you get stuck on something on the swing?”

No! Swing (he was beginning to get upset – so I had to stop because if I ask too many questions he thinks he is getting it wrong and changes his story).

After thinking about it for quite some time, I realized that he was actually telling me what happened. It was the swing. DC loves the swings at camp. He will spend any free time and all of the outdoor rec. portion of his time on the swings. He is a big boy. The swing was rubbing against his hip every day, causing something that resembled a very large healed-over blister. Once I figured it out, we just kept it covered with Band-Aids, so as not to cause so much friction. This was one of the very few times where Band-Aids were applied for a legitimate reason .

Then there was the big stripe down the side of his neck, which is a regular occurrence now, but the first time I noticed this mark, it scared the life out of me.

“Oh My God! What happened?”

“Tree branch”

He was in the car with me all day. He did not come in contact with a tree branch. Once again, it took me a while to figure this one out. When we are driving he rocks back and forth in his seat with so much force that it shakes the whole car (very distracting to the person driving). Because we had been driving so long, the seat belt was rubbing against his neck with every rock for a good long time, causing this large red stripe down the side of his neck. I do not think he even felt it. I have always believed that he does not feel pain the way we do or he does not process pain the way we do. This and the fact that he is not always able to communicate what might be going on is and will always be a huge worry of mine. Verbal does not always mean communication.

Last week, I noticed a mark on the back of his leg. I asked him what happened. “Nothing happened”

He hates for me to look at these things because he is afraid that he will have to go to the doctor. After a lot of back and forth and ‘egg – guo – ing’ he let me put some anti-bacterial cream on it and he went on his way. He brought it up again the following day on his own as his way of apologizing for giving me a hard time the day before. “Feels much better now, Mom! Thank you! Thank you!”.

I asked him again what happened and he rattled off a list. I am sure the answer may be in there somewhere if I think about it long enough – and then again, maybe not… one never knows.

“The swing” (which would have made perfect sense as it looked similar to the swing injury – if he had been on a swing.)

“A rock”

“A spindle – ouch” (my personal favorite)

‘The chair”

“Tree Branch”

So…..

Sometimes I do get the answer I am looking for albeit in a round-about way,

and other times…..

I am just left with a tree branch..

Flap like a Chicken

Posted by TakingItAStepAtATime

It has been a little bit of an odd week here in DC-land. Some plusses but just all around odd. At this point even the positives worry me since he began having seizures. Right before both he was hyper-aware and oddly communicative. I just haven’t relaxed enough yet to take the positives as totally positive. So, I worry.

On the plus side, he tried and ATE zucchini! TWICE! – That is MAJOR!

Most of the “oddness” we’ve encountered this week are not out of the ordinary things they just seem to be elevated.

I know I’ve written previously that DC does not cry – never has. When he hurts himself or is upset, he will yell or scream, but he never cries. Even as a baby his crying was more like screaming and he really never had tears. To this day, it is very rare for him to have tears. When he does, it is usually due to allergies and still even with allergies, tears are rare. He will at times use water to make tears so he can look at himself in the mirror and see “tears”.

He started taking seizure medication back in August with really no adverse side effects except for one day about 3 weeks in, he was watching a YouTube video and just started bawling, uncontrollably complete with tears and “ugly cry face”. This went on for a good hour. When I asked him what was making him sad, he said it was the Barney song.

(If anyone should be crying over the Barney song, it should be me. I have had to listen to that song for 24 years now. He’s been watching that show since before it hit PBS, back in the days when Barney was dark purple (and a little scary looking, if you ask me) and Sandy Duncan played Michael’s mother. Yes, I am still looking for that Barney support group.)

I chalked the crying up to the meds and I did inform his neurologist. It never happened again, until this week, when three times he went into the same over the top crying, like “overly emotional” me crying over a Hallmark commercial.

Each time he said it was because of the Barney song. The last time he did also say that he missed his Aunt Kim, who he is going to visit tomorrow. Now I have to wonder if it is/was a side effect from the meds why did it happen 5 moths ago and not again until this week?

****

Mrs. H reported that on Friday, he came home from work out-of-sorts which seemed to stem from his immediate need to change his shirt. He couldn’t wait. Now clothing issues are ongoing here, but as annoying shirts go, this one really shouldn’t have caused him that much anxiety. Years ago, yes – but really not so much anymore. It was just a plain black shirt, no buttons, no pockets, no collar, no tags – pretty much, a long sleeved t-shirt, but it had to come off… immediately.

****

Today DC and I went to meet my mother for lunch. We were going to an Italian restaurant that we have been to a few times before. DC always has a hard time finding anything to eat there. They do not have even one item on “DC’s Restaurant Triad” – Burgers, Wings or Pizza, so I have to plan ahead when we go there. I have to remind him more than once and check the menu on-line after which he chooses mozzarella carrozza (but we must call them mozzarella sticks, even though they are triangles) and garlic bread also with mozzarella – always.

At the restaurant; his order placed, he heard me order grilled chicken and insisted on having grilled chicken as well! Now, this ‘boy’ loves chicken. He eats chicken just about every day, but it has to have bones. “Chicken with bones and sprinkles” (Mrs. Dash) or wings or tenders (tenders are not required to have a bone). He never wants chicken without the bone unless they are tenders. This…. another MAJOR plus in my book – a fourth menu option!

****

The minus… He got very anxious at lunch, which is not really all that uncommon. He said he needed to “flap his wings”. The restaurant was not busy and there was no threat of him hitting anyone with his flapping so I said it was fine but to try to keep the ‘clucking’ at low volume. He did, but I could see that it wasn’t working for him. I asked if he wanted to go outside for a bit. First he said no, but then he decided he would since he was done with his appetizer and the rest of our food had not arrived yet. Normally, he would think he was being punished if I asked him to go outside – I always tell him that this is not the case but that is what he thinks, so I was surprised that he agreed.

There we stood, on the sidewalk in front of the restaurant clucking and flapping. The clucking was even more intense than usual. The only way I can describe it would be that it looked like his head was motorized. I do not know how he was doing it. I have never seen such extreme clucking. We stood outside for a good long while until he decided he was ready to go back inside. We were not inside for very long before he decided he needed to go out again. More flapping more intense clucking. Eventually he calmed down and I could see a bit of a smile on his face so I knew this would probably be our last trip outside. We went back in and he was fine for the remainder of our time there.

He had a hard time; the minus – but really the plus side is that he agreed to go outside and he decided for himself that he needed to go back outside the second time.

****

I know that these incidents may not seem like a big deal to many of you. Years ago, all of the above would have been much worse but we are over a lot of that now or I should say that it all comes in lesser degrees now, so all of it combined plus the continuous repeating of random words as if the needle is stuck on a record and the out of control over the top laughing is making me nervous that he is gearing up for something.

He will be going to visit his aunt tomorrow. This will be the first time (other than when he is at his job, with “trained professionals”) that he has been anywhere without me, Mrs. H or Doug since his seizures started (our world has gotten much smaller) and given his odd behavior this week, his poor aunt will have to listen to pages of instructions tomorrow when she picks him up. Fortunately, she is used to me.

Over the years as I gave my lists of instructions to his Dad (I’ve always had many instructions even before the seizures), more than once he’s asked, “You think I am stupid, don’t you?” ……………………………………..

To the many other people who have had to listen to my barrage of instructions, I will say, No, I don’t think you are stupid. Yes, I know that you probably know all of this. On the slim chance that there might be one little thing that you do not know, I am going to say it. I will not feel better unless I say it out loud even though I am sure you probably already know it.

He is excited to go to his aunt’s tomorrow and I am sure he will be fine. I have every confidence that she is ready for my list and that there may be a quiz 🙂 –

Just kidding, no quiz…. maybe just on oral exam…

Yes, I am very fortunate that she has had many years to get used to me and is able to put up with me.