I have a blue light

 

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

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

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

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

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

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

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

He is happy.

You should be so happy.

I love our life.

He loves his life.

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

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

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

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

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

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

We need more.

 

 

 

 

Not so “literally speaking”

We all know that DC is very literal (see Literally Speaking)  in his speech and way of thinking. Aside from his black and white,  no-gray-area way of communicating and understanding and his just one mumbled word responses, his manner of speaking is at times very formal, for lack of a better word. Much of his language stems directly from the many books he reads and movies he watches.
He calls the cabinet a ‘cub – board ‘ <cupboard> (emphasis on ‘board’), not because he thinks it is funny,  because that is what it is. That is what he’s learned from his books.

For example, when he knows I happen to have a Friday off from work and he wants me to come to lunch at his program –

“*Vickie, would you be so kind to join me for lunch on Friday at <insert the name of his program>” ~ the whole name please, not the Acronym used by the everyone else ~

 –  (*yes, he calls me Vickie from time to time. In his mind, he is an adult and that is what he should do. It does not bother me in the least. Last night, for some reason, it was “Ms. <Last name> and that is fine too)

He does ask me from time to time, what a word means, not that he will incorporate the word into his vocabulary, he would just like to know. Every once in a while he will make a connection with one word and other in his head. I am always in awe when he manages to do this on this own. This seems to be happening much more lately.

For many years “Wonderful” was his choice when he had a good time or liked something very much. He has started replacing “Wonderful” with “Terrific”. Not a huge deal, but he figured out that it means the same thing and it is a little less formal than “We had a wonderful time”.

A few weeks ago, I was telling DC that we were out of something, I don’t remember what it was at the time, but it was something he was expecting to have for dinner. I explained that we were all out,  it was my mistake, I didn’t know we were out (things tend to go over better with him when it is my fault :).

His reply???

“No problem”

NO PROBLEM!!!!!!

I have never heard him use that phrase, ever. Somewhere along the line he figured out what it means and used it appropriately.

A while back DC and I were having a movie night. DC was waiting in the living room to watch “Maleficent” and I was in the kitchen getting the pizza ready ~ actually I was in the kitchen bleeding all over the counter trying to find a Band-Aid. Not an easy task with “Mr. Band-Aid” in the house – but that is beside the point. Searching for a band-aid box that was not full of band-aid wrappers but no band-aids and mumbling under my breath –  from the living room I heard; “Gee, I wonder what Vickie is up to”.

GEE????

IS UP TO ???

I wrote that one down as soon as DC brought me a Band-Aid from his hidden stash.

In my last post you may have heard “We have to get moving”.

GET MOVING  instead of  we have to go!!!!

I asked him to help me open a Peanut Butter jar – he tried, but he could not get it to open either.

“It won’t budge”

BUDGE?????

Let’s not forget the day he was “in sympathy” for sneaking chips. There have been so many more, but you get the picture. It throws me a little bit every time he comes out with a new one, but it is exciting. It shows me that he is paying more attention to what goes on around him and he is listening to much more than he lets on.

There are still many literal, black and white moments and DC still very rarely refers to himself as “me”.

Recently at a Best Buddy walk, both of his Buddies asked him where he got the Star Trek shirt he was wearing…..

“DC’s room” 

 

 

 

 

“To Boldly Go……”

To Boldy Go....

To Bodly Go….

I confess…

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.

Today, he is verbal but will still, at times use his signs in conjunction with his speech – that “Mr. Spock” sign has come to represent Star Trek in general for him and he still uses it.

Coincidently, DC just happened to be born on William Shatner’s birthday (not planned – I swear)

Before the days when Star Trek costumes were available to purchase - DC's second Halloween.

Before the days when Star Trek costumes were available to purchase – DC’s second Halloween.

Last October, we finally made it to New York Comic-Con. I was nervous – it was so crowded, but the hope of meeting Felicia Day, kept DC pretty much on track. He also got to meet William Shatner and the Real Mike Tee Vee. All were very nice to him and he was very, very happy.

A few years back a friend of mine told me about “Shore Leave“,an event held in Baltimore every August. It is smaller than ComicCon and the original plan was to try this first, see how DC managed it and then move on to the bigger ‘Con’ in NY at a later date. Somehow we ended up doing it in reverse. But, since DC did so well at ComicCon we decided  Shore Leave would be a breeze.

We left on Thursday afternoon as soon as DC came home from his work program. Our 5 hour drive to Baltimore somehow turned into an 8 hour haul. We opted not to stay at the hotel where the event was being held as we were planning on doing a few other things in Baltimore while we were there and I really thought it would be just too much for DC. We had reservations at the Holiday Inn – Timonium. We finally arrived a little bit after 11pm.

The man at the desk checked us in to room 717. We headed up to the 7th floor in the slowest elevator known to man – reverse warp speed. We opened the door to room 717 and found that the door was bolted from the inside and soon a man’s face was looking at us through the 6 inch space in the door. He wanted to know what we were doing and why we had a key to his room. We explained that we had just checked in and this was the room we were given. He explained that HE had just checked into this room moments before. DC does not understand this, he wants to “go to the room”.

Fortunately a hotel employee was in the hallway and called down to the desk. He got the desk clerk to assign us a different room on the same floor, let us in with his master-key and went down to switch out the keys for us. We were now checked into room 725. At about 11:45, the room phone rang. It was the desk clerk. He has forgotten our name (??!!) – we had reservations so he should have all of that information, but I gave him our name again. At midnight, the phone rang. It was the desk clerk once again, this time calling to tell us he would have someone slip free breakfast coupons under our door for our inconvenience. We thanked him and hoped this would be the end of the phone calls for the evening.

We spent Friday at the Inner Harbor. DC of course spotted the Barnes and Noble and Hard Rock “Caf” (DC-speak) so, you bet we had to  visit both places. It was a nice day and we had a very nice time.

We got back to the room at about 4pm to discover that no one had come to clean. I thought that was odd, but given the debacle of the night before, I really didn’t think too much about it at the time. We would be heading back out in an hour so there wasn’t much point to calling anyone to clean at that time of day.

Reading the Shore Leave schedule, I noticed that there was a “Rock, Paper, Scissors, Lizard, Spock” tournament at 6pm. DC loves the Big Bang Theory and thinks “Rock, Paper, Scissors, Lizard, Spock” is the most hysterical thing he’s ever heard. He does not really know what it means, the words are  just so funny to him. I thought if we attended the tournament, he would see exactly what it is…. a game.  I didn’t think he would actually understand the game, but at the very least he might understand what they are talking about in the show.

When we first walked in, the moderator was explaining the rules, reading from a very confusing T-shirt, complete with diagrams and pictures of the signs. One of the participants piped up “That boy has the directions right on his shirt” – I don’t think the moderator appreciated this, he looked up, sighed and went right back to explaining with HIS T-shirt. DC got a kick out of the tournament and asked me more than once “to play“. I knew he really didn’t understand it and thought about asking the moderator if someone could play a quick game with him when they were finished, but during the practice rounds I did with him, I could see he really didn’t get it. He just threw whatever I threw. I told him he could play against me. We played at the table while the tournament was in progress. This seemed to make him happy enough.

After the tournament we were walking down one of the hallways and I noticed the TARDIS in the corner and pointed it out to DC. He recognized it immediately yelling,  “Dr Who” We went to check it out. It was a photo booth. I don’t know what sort of directions the man gave DC when he was in the booth, but I could see from the computer screen outside that every time “Look at the Camera” came up on the screen, DC did something with his hands and his face, when the prompt was not there he sat looking at the screen normally. I’m sure he was following his understanding of the directions the man gave him.

He also happened to find a pair of TARDIS slippers. There were only two pair on the table, but thankfully one pair was his size. He was pretty darn happy to get them. He has a “thing” about slippers lately, I don’t know why. He has a few pair of slippers at home but never wanted to wear them, all of a sudden he loves slippers and wears them all of the time. The Tardis slippers were a nice find for him.

Pictures taken, slippers purchased, now DC was beginning to get antsy. He had enough for one night and as you may or may not know, DC’s favorite thing when on vacation – besides bookstores and restaurants, that is – is the hotel room. He really just LOVES hotel rooms, so he was anxious to get back. We arrived back at the hotel at a little after 9. Jokingly, I said to Doug, “I hope they didn’t give our room to someone else”

 -I really have to stop joking like that, really!

We got to the door and the key would not work, none of our keys worked. There were 2 women just down the hall going into their room and I heard one  say  to the other, “Now look,  their keys won’t work” and they asked us if our keys worked. We told them that they didn’t. They proceeded to inform us that they had just checked in and they were assigned room number 725 (our room). They opened the door, went in and realized that this was clearly someone else’s room (especially as you know,  no one had come to clean it that day). They had just been down at the desk to have it corrected and in the process the people at the desk deactivated our keys.

DC just wanted to “go to the room” and again, we are left standing in the hallway. I was so worried about Shore Leave being too much for him, but as it turns out the hotel caused him (and me) more anxiety that anything else that weekend.

We went back down to the desk and informed them that once again, we were stuck in the hallway. Last night they had us walking into someone else’s room and tonight they sent strangers into our room. The women at the desk said that when the desk clerk switched our room the night before he didn’t mark it down – which explains why no one came to clean – they thought it was empty (but why did he call to ask our name?? – That will remain a mystery). One woman offered us free breakfast coupons for the rest of our stay (they must have to give out an awful lot of those) – I informed her that we had already been given coupons the night before for that error. They didn’t offer anything else. I could be wrong, but it did seem as though the women that walked into our room that night were upgraded to a suite – but, I could be wrong…………….

On Saturday morning, we decided to take in the “Fairy Tale Panel” back at Shore Leave. DC must have been much more exhausted from Friday than I realized as he fell asleep and slept (in the front row, mind you) throughout the entire hour. 200lbs of dead weight hanging on me the entire time – just what you want when you are running a panel, someone fast asleep in the front row!  He did also sleep through the Once Upon a Time panel at ComicCon, but at least it was a dark room and we were nowhere close to the front. I suppose it could have been worse, he could have been snoring.
Saturday was much more crowded than Friday night had been. We tried to stay away from the most crowded areas, but refreshed from his “nap”, DC made a bee-line to the Buffy doll that I knew he wanted but refused to buy the day before – I think he was just too overwhelmed on Friday night to know what he wanted until he found the Tardis slippers, that is..
We had purchased tickets for 3 photo ops the night before, but we still had a little time to kill, so we went to the autograph tables, which surprisingly, were not very crowded.

Our first stop was Robert Picardo. I explained to DC that he was once on a Star Trek (Voyager). His sign read “I’m the Doctor”. This confused DC, he knew it wasn’t David Tennant, the only Dr. he is aware of, but the sign did say “I am the Dr.” so he called him Dr. Who.

– just following directions, Doc…….

We moved on to Michael Welch. He was exceptionally nice to DC – really, they all were.

We then headed to THE most confusing Photo Op line ever. We had tickets for 3 Photo Ops which meant we had to get in line 3 times. The lines did move quickly, but it was all very confusing trying to figure out where we were supposed to be.

The woman at the entrance to the photo room just Ooo’d and Ahh’d over DC every time we arrived for a photo. “Oh! Look at him, he is so excited!” – he was, plus there is no one that loves to have their picture taken more than DC does.

His first photo was with Robert Picardo, “Dr. Who” from a half hour earlier. He didn’t call him Dr. Who this time even though he was wearing a Dr. Who shirt (he didn’t have his “I’m the Doctor” sign with him and it wasn’t David Tennant on his shirt).

Next up was Eve Myles. She was a few minutes late getting to the photo room and when I saw her coming down the hallway, I got a little bit anxious. Her hair was much longer than it is on TV and in photos. DC LOVES long hair, LOVES it! Before we were faced with another  ‘Snow White Incident’ I launched into “the rules”.
“DC, you can not touch her hair”
“Okay Mom”
“DC what is the rule? – Tell me”
“Don’t touch your hair” (the usual pronoun confusion,but I knew he understood)
and then….. just for good measure…
“DC, what is the other rule?”
“Don’t pick up the people”
and he didn’t……….

Next and thankfully, last as DC was tired of getting in and out of lines…. Silas Weir Mitchell. I love Grimm. DC has seen it a few times, but I don’t think he really knew who he was. It didn’t faze him because, someone was taking HIS picture and isn’t that really all that matters?

At this point, DC was starting to get edgy. Our last stop was the Eve Myles autograph table. We had a good 1/2 hour wait until she was finished with the Q&A she was leading. We slipped inside to listen and more importantly to move DC out of the hallway.

He didn’t want to sit down.

He didn’t want to stand where we were standing.

He didn’t want to stand in the next place we moved to.

We moved close to the door and he seemed okay with that.

But then a staff person came over and told us we couldn’t stand there so we moved back to the hallway.

We decided to just wait at the table.

There was a wonderful lady sitting at the table who just happened to be a Special Ed teacher (we seem to run into Special Ed teachers everywhere we go, she was the second on this trip), she let DC pick out the photo he wanted autographed early. He picked a photo of Ms. Myles from a Merlin episode. We chatted a bit, she chatted with DC a bit as well. She told him he was doing a good job waiting – he loves compliments, who doesn’t.

The Dalek from the Tardis photo booth was now roaming the hallway “EXTERMINATE!”,  so that helped to keep him occupied until Ms. Myles was finished with her Q&A. When she arrived at the table, the woman whispered something to her and then introduced her to DC. She told her that he was waiting a long time for her. He was first in line for her autograph, she was lovely to him. He was thrilled…..

but he was also “done”.

I didn’t try to push him to do any more. We arrived that morning at 9 and it was now after 3. That was a long stretch for him, even with the nap. He had a few sketchy moments throughout the day, but I really I think, overall he did a fantastic job!

In the words of DC, “We all had a wonderful time”

except for this guy…………..

this guy....

this guy….

and a big shout-out to the “trying to be helpful staff member” that asked Doug (aka “This Guy”) if he needed help finding something….

“I’m just looking for some place to hang myself”

(Thanks Guy, I’m sure, Doug was waiting all day for an opportunity to use that line, and there it was)

#LLAP

“Hi, Mom! Did you have a nice day?”

only to dollars

Many of you may know that DC is obsessed with food. He has breakfast and he is already worried about lunch. After lunch we move on to:

“Dinner is later after that” he always seems to add “after that” when he talks about “later”.

He must give me his breakfast order before he goes to bed every night. There is never anything different about his order from one night to the next, but he feels compelled to tell me every night before he goes to bed.
There were a few times (very few) when DC forgot for one reason or another, to remind me of his breakfast order before he went to sleep. On those occasions, he came into my bedroom to wake me  up in the middle of the night so that he could give me his breakfast request.

Most days, when I get home from work DC does not even say hello. He gets his wallet, holds it open and says “Only two dollars”. This is his way of telling me that he wants money for lunch at work the following day (and for some reason, there always seems to be two dollars left in his wallet).
His only concern at that moment is his lunch the next day.
My reply is usually “Hi, Mom! How are you? Did you have a nice day?” – at this point he realizes that he did not even say hello before asking for money, he says hello, but then gets  right back on the subject at hand – his wallet.

We run through this same routine very often…..

…………………..until the other day, that is.

DC came over to me, with open wallet in hand, as usual.

But instead of telling me that he only had two dollars, he ran through every greeting he could come up with all in one sentence as if he was just trying to get it all over with. It was such a monotone, run-on delivery, that it took me a second to understand what he doing:

“Mom, how are you feeling, hello, nice day, yes, nice to see you, good day, happy, hi there”

Then when he ran out of random greetings……

“Mom, only two dollars”

 

The GREAT BOOK PURGE of 2014!

20140505-220210.jpg

Finally our Town scheduled a “Big Trash” pickup. These pickups used to be an annual event – when I say “event”, I mean an “event”. It was as if a newsletter went out to all of the surrounding towns and as soon as one piece of “big trash” hit the curb, the caravans of cars and pickup trucks descended. DC and I moved to this town 20 years ago, for the school system. At the time this town had the best special education  program in the state. We moved here from a relatively big city, where to be honest, I thought I’d seen everything, until “Big Trash Day” came around, that is…….. I had never seen anything like this… but I digress.

Due to budget cuts, “Big Trash” pickup went from every year to every other, then finally there was no pick up at all.  This year, the town decided to schedule a “Big Trash” event in April. It has been about 5 years since the last one.

As many of you know, DC loves books. His favorite activity is going to the bookstore. I’m sure he averages 3 or 4 visits per month. This means we have hundreds of books squashed in our little house. He has so many, that I really can’t keep track of what he has. If he’s picking out a book at the store, I don’t really remember if he already has it at home and he really doesn’t care if he already has it. Obviously if it is a Disney book, I know he has at least 4 or 5 versions of the particular story but I really can’t remember if he has the version he wants to buy…..or……… I know he HAD it at one time, but we may have gotten rid of it during the last “Big Trash” event. Needless to say, we end up with many duplicates.

His books and his DVDs are two things I will never be able to keep track of.

Because DC “edits” all of his books, they really can not be donated. They are just unreadable to anyone else but DC.

Book Editing

Book Editing

editbook

I have taken some flack over the years for letting DC write in his books because they can not be donated later. This is true, we can not donate them and I am left with a large amount of books that I have to get rid of without breaking the recycling and/or garbage man’s back.

I don’t know about you, but I don’t always purchase items based on if or where I can donate them later. If an item can be donated later, it will be.

DC is allowed to write in his own books, he does not write in library books, he does not write in books that do not belong to him.

He is allowed to write in his books because it is beneficial to his language/conversation skills, his vocabulary and his comprehension.

Yes, some of his editing is obsessive. One of the many versions of the “Wizard of OZ” that he owns was an older version where the “Tin Man” was referred to as “The Tin Woodsman”. He went through every single page of the 200-plus page chapter book and colored out (crossing out is not good enough) the word “Woods” on every page, so that it read “Tin Man”.

He also likes his chapter numbers to be written out. Chapter 1 has to be edited to read “Chapter One” and so on. Every other day he will ask, “Mom, would you spell twelve”. I do not know why after all this time he can spell every other number, but not twelve, but for some reason, he can’t. There are many other words he will me to spell but “twelve” is a constant.

Recently ~and I really think this is great because he figured it out by himself ~he has become interested in Roman Numerals.
He figured out that the V means ‘five’, so along with spelling out the chapter numbers, he is also assigning them his version of a Roman Numeral. I say his version because he knows V is 5, so Chapter 13 is edited to read “VIIIIIIII” or sometimes “IIIIIIIIV”. In any case, he is adding 5 (V) + 8 (I’s) to get to 13. He was never big on numbers, so if his own version of Roman Numerals moves his mind into “math mode”, all the better.

The obsessive editing aside, he changes sentences into new sentences that make sense. He changes words into words that mean the same thing. He will ask me from time to time what a word means and then comes up with an edit for that word that means the same thing. He is learning, he is writing full sentences, he is learning what words mean and there’s a little bit of math happening, so YES, I let him write in his books.

The problem has always been just what to do with these books when they begin to take over the house.

It has been suggested, that I should just do a little bit at a time, this way I can throw them in the recycling bin without being the cause of a Workers Comp injury for the trash hauling company.

I can not do just a little bit at a time because:

– DC gets nervous.
– We would be going through the same shelf every week, because as soon as there is a space a book or books gets shoved in it.
– If I went through all of it at one time and just got rid of them a little bit at a time I would still end up with a huge pile of books somewhere in the house and he would slowly begin to add them back into his collection.

I made the mistake of throwing away 9 or 10 books about 15 years ago. They were books I was sure he hadn’t looked at or touched in years, but he knew! For years, until just recently, whenever he left the house to get on the bus for school and then work, his last words to me were “Books are staying here”, every single day.

When I heard there was a “Big Trash Day” scheduled in April, I began getting DC ready. I talked to him about his books everyday until the week of. I explained that we were going to go through all of his books and he would tell me which ones we were going to “keep” or “throw away”. I explained that we would not throw away anything unless it was all right with him. I also explained that we would go through all of his books together and I would not do any of this without him.

We couldn’t start too early, because having the books he opted to throw away hanging around for any length of time would really bother him and he would slowly move them back to the books shelves. We had to have everything out on the curb by Sunday evening, so DC and I started sorting on Thursday night.

We started with his living room book-case. We went through each and every book. I was surprised at the amount of books he decided to throw away. I’m sure he was already planning to replace them a little bit at a time during his many future trips to the book store.

On Friday, I had a medical appointment and I was not allowed to lift anything heavy for the day, so we lost a “sorting day” right out of the gate. On Saturday we started in his room. We were attending a  fundraiser that evening so between the sorting of books I was getting phone calls and texts to look for this and that and people wanting to drop items off for the fundraiser. I started getting anxious about all of these books. This book purge had to be completed today, before 4pm when we left of the fundraiser because DC was spending the night and the next day at his Dad’s – he was going to take DC directly from the fundraiser and I had promised DC that I would not sort or throw away anything with out his approval.

His room took almost all day and in the process, I threw out my back, carrying said books downstairs. Now I thought I would not be going anywhere at all that evening, never mind  getting through all of his books, but DC was a great help.  Going through his room made me feel like I was in an episode of “Hoarders” –  it always does.  It is just amazing how many books he can fit in his little room!

You probably can't see it but there are more stuffed under the coffee table

You probably can’t see it but there are more stuffed under the coffee table

We did it! I told DC over and over again how proud I was of him, so he wouldn’t start getting anxious about all of the books that were going away and because I WAS very proud of him for agreeing to get rid of so many! The following day, Doug came over and hauled them all outside. When DC came home from his Dad’s on Monday morning in time for his transportation to work, they were all gone, so he never gave it another thought.

No worries, though. He has plenty of books left to edit and I assume he is already plotting the replacement all of the books that went away with nice, new clean versions to edit all over again.  These shelves will be over flowing again in a few months time.

DC's room

DC’s room

Livingroom

Living Room

And…… we did find 40 or 50 books that were not
edited and we were able to donate.

Just Who Is This DC That You Speak Of ? – One Year Anniversary

Happy Anniversary

Happy Anniversary

It has now been full year since I began writing this blog. Over the course of this year, a few friends have asked, among other things, why I call my son “DC”.
DC is not my son’s name. This is confusing to my friends because I do post this blog on my personal face book page. Obviously my friends on my personal page know my son’s name, they know our last name, they even know where we live. BUT because this blog is public, and is shared on a number of accounts and networks via WordPress (not via my personal page), I do not use his real name, our last name or our location.

My personal face book page is set for “friends only”. Nothing I write about is anything that my friends don’t know or haven’t heard about DC. I am very proud of my child, as I am sure my friends are very aware of. 😃

As for my other accounts; they are set all up using my first name only, no location. I am sure if one tried hard enough, they may possibly be able to figure out what state we live in, but really not much else.

My Instagram account is not only first name and no location, but it is also private. 95% of my followers and the people I follow there are other autism parents and CharityMiles friends. Quite honestly, they are all wonderful people and I really would not have much of a problem divulging our location or last name to most of them. A few do know Dc’s name and that is fine with me. There I see compassion, camaraderie and the support of each other, that I really don’t see anywhere else. We all seem to have different opinions, but we all seem to embrace our differences instead of attacking each other.

Another question that I am asked every so often is why I write a blog.

I never really intended to write a blog. My blogging began one day when I was writing an extremely long response to a blog post that I had just finished reading. After I hit “post” I decided that writing a response to this post on someone else’s blog was not going to make me feel better about the topic being discussed. I opened an account with a local on-line news publication and pasted the response I had just written onto a blog page and published. After a month or so and only a couple of posts; finding the local publication blog not-so-very user-friendly, and because it was local, I felt I could not share it anywhere else and still remain somewhat anonymous,  I moved to Word Press. I was so worried that I would never have enough to say to sustain a blog, but I went for it anyway. It turns out that I do have a lot to say. I don’t know how many people care to hear what I have to say, but I say it anyway.

Originally, I did not even post the blog on my personal Face Book page, only on my “community page”. Before posting it there, I went through 3 years of posts on the community page and it’s accompanying website , deleting anything that could be considered too “local” of a story.  I wanted to be sure that our location was not too apparent AND that the names and locations of the people featured in these now deleted local stories were also not on display.

(I have just discovered that there is a way to post local news and events on that community page to a specific audience, so I can begin posting local events and news again.)

I did begin posting the blog to my own page at the urging of a friend. No, I am not naïve enough to think that private postings or ‘friend only’ postings are really 100% private, but I have taken all of the precautions I feel that I can and I am always looking for others.  I will continue to call my son, DC and write about “a local theater”, a “local college”, a “local baseball league” or a “local ice cream shop”.

I read many blogs as well. Many of the blogs that I do come across are written by parents of younger children. Most are wonderful and very informative. There are many that I absolutely love,  but I always feel that the parents of adult children do not get to have an equal voice in this community. We are cast aside, or worse, berated. I am not in any way saying my blog is the voice of parents with adult children, I don’t think there are enough people that actually read it, in the first place, to even consider that, but I am ONE voice and ONE opinion in a sea of blogs and opinions that do not seem to make room for the parents that have been at it  for many years now.

I was very tired of being preached at by those who have not reached this point in their child’s life and constantly being told how to feel. I understand where they are coming from and in turn I believe they can or should try to understand where I am coming from. Whatever else you might have to say about me, I  have done a good job of raising DC.  Of course there was help along the way but as a single mother going on 21 years now, most of it fell to me alone.  I truly resent the fact that we, as parents are being made to feel as if after all these years,  we’ve got it all wrong.

I’m hoping a little insight into what comes after “school age” may go a long way in getting people to stop and think before making blanket decisions, accusations and statements that may not affect their child the same way it will affect mine (more about this at another time). There has got to be some give and take. Everything is not good for everybody.

Having said that, I have learned quite a bit from other parents by virtue of this blog. I don’t always agree with every opinion and my readers, I’m sure, do not always agree with me, but I truly believe writing this blog and getting some of the feedback has helped me see some issues a bit differently or at least why some parents see things the way they do. I can only hope I can and will be afforded the same courtesy; and so far I have.

Life tends to be very different when your child “ages out”of the school system and at other times, it is exactly the same. When you are waist deep in school, therapies, programs and IEPs, what happens after 21 is not high on your priority list. Of course it is a priority and of course it is in the back of your mind but, the here and now takes precedence. There are so many new and different issues to consider, and it all comes to hit you in the face much faster than you expect. Your views and opinions can change dramatically from what you hoped for when they were young and what you hope for now. Your life changes drastically, while not changing at all.

In an earlier blog I wrote:

“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?”

He will, someday have to live in the real world without me.

So I will keep writing with the hope that a few people might read and think a little bit about the future. I would never say that spreading awareness is not a good idea, it IS definitely necessary, but…..

all of the awareness in the world is not going to keep DC safe and happy when I am no longer here to protect him…..

 

 

The things we know…. and the things we don’t

Just 5 minutes inside his head.

Just 5 minutes inside his head.

My friend Peg and I have often discussed just how fantastic it would be if we could just get inside our kids’ head for five minutes! That is all we wanted, 5 minutes…. 5 minutes just to see what is really going on in there.

We never really know, we may think we do, but we really, really don’t.

As much as I think I know my son like the back of my hand, there are still times when I realize I do not know anything at all.

For example, during his 3rd year of swimming with Special Olympics, his coach yelled over to me one day at practice “He just figured out he can open his eyes with the goggles on!” – At that point in time, he’d been wearing the goggles for practice twice a week and during competitions for as I said, 3 years. It never occurred to me or anyone else for that matter that he didn’t know he could open his eyes while wearing them. I suppose, that knowing him as I think I do, it should have, but – no, it did not.

I am relatively sure he does not understand “death”. Other than Bambi’s mother and Old Yeller (who was quickly replaced at the end), none of his favorite Disney characters ever die, really. If they do – it doesn’t last. Someone kisses them, or a spell is cast and there they are, good as new. I try to talk to him about death, due to my “dropping dead” obsession and because everyone dies eventually. I never want him to think I just left him, but I really can not say that he understands it at all.

DC seems to live in the present. Things change and he just changes with them. I had a conversation with my friend, Toni a while back. Her daughter can watch something like Full House and relate it to her own life – high school, college, get a job, buy a car, get married, and have children. DC watches but does not relate any of this to his own life. He went to high school because I sent him. He moved on to “college” because I sent him and so on. I tell him what to do and he does it. I have tried to have conversations with him about what he thinks should come next in his life, but these conversations just tend to go to “dinner” or whatever meal or activity may be coming up. His future is not a concept he can grasp. He lives in the present and doesn’t seem to think about anything changing in his life, things just change and he just goes with it.

So the other night DC was on a ‘picture drawing’ roll – Flowers for Mom, Hearts for Mom, Birthday Cake for Mom and then this…..

Wedding Cake ? For Mom?

Wedding Cake ? For Mom?

Needless to say I was a little bit thrown. DC’s Dad and I divorced when DC was 3. At the time, I didn’t try to explain it to him, I was too busy trying to get him diagnosed. It didn’t seem to faze him, he still saw his Dad every week and I was sure he would not understand any attempt I could make at explaining it to him. He never seemed to think anything of it. As marriage is something I never had or have any desire to do again, it is not something we ever talked about. Other than adding “Baby for Mom” to his Christmas list a few years ago, I never really had any indication that he might realize that things may be different here than at his friends’ homes. I am still not sure that he does. It has always been this way – it is what he is used to.
Most of his friends do have parents that are together and they also have brothers and sisters. But I still do not think he relates that to his own life. But again, every time I think I have him figured out he does something like presenting me with a drawing of a three layer wedding cake specifically for “Mom” and he has me guessing all over again.

That five minutes in his head, would come in very handy right now, but since I can’t have that, I am going to assume that he just really loves Wedding Cake and he just wants to share with his Mom………….