The End of The School Year

DCBarney

DC has been out of school since 2012. He walked with his class at the high school in 2010 and then moved on to the school system’s Transition Program for the two years between 18 and 21 (“school age” in this area is age 3 to 21 for SPED students).

The tiny boy with the bigger than him Barney lunch box seems like forever ago and not that long ago at all.

When, as the parent of a SPED student your life is pretty much all encompassed by the school system; IEP’s, therapies, fighting for everything (oh, the fighting), it is very difficult cutting the cord when it is all over.

Yes, there are still meetings – we call them IP’s now (no E for Education) and there is still the paperwork (which has more than doubled) but it was really a rude awakening. It took a few years for me to stop panicking when winter, spring, Christmas school vacations came around thinking I did not have a plan for DC, only to realize I did not need a plan because he was out of school and his program was year-round.  It was very hard to make a break from the school calendar.

I remember going with *Salli’s mom (and our caseworker) to look at the many Group Supported Programs in the area, trying to find a good fit for DC and *Salli for after they aged out of the school system. We saw many programs, good and bad.  I specifically remember coming home each week feeling drained and depressed. I did not say anything at first because I really just thought it was me being overly emotional until *Salli’s mother said the same thing to me one day. There was no more “school”, no more moving into the next phase in the school system – we were looking at the rest of their lives. This was it. This would be their life.

It just hits you in the face.

We have adjusted though, it was a long adjustment period but we have made the adjustment. Now I find myself oblivious to the last day of school and anything related to school.

I remember getting a message from one of DC’s friends and explaining, when I answered him later that day, that I did not want to reply while he was still in class.

DC’s friend: “It’s July. It’s summer vacation”

Yes, I am now officially oblivious to it all….

Except for the bus. I do, at times still call DC’s work transportation  – the bus.

Me: (Answering DC’s daily “I’m going home Nowwwww” phone call to me) “Are you on the bus?”

DC: No!

Me: (panicking a little) Where are you? Aren’t you on the bus?

DC: No!

Me: (panicking more) Where ARE YOU!

DC: In the car.

His adjustment is complete.

*****

Finish the Sentence Friday is a link-up where writers and bloggers come together to share themselves with a particular prompt (different formats each week of the month). Hosted by:  Kristi Campbell of Finding Ninee and Kenya G. Johnson of Sporadically Yours this week we are finishing the sentence, “It’s the end of the school year, and…”

#SilentCoffee

Once again I am using my “Other Blog” format over here on this site. It’s Mother’s Day, so I can do what I want. Right?

Silent coffee. That is all I wanted today. I am sure we all have that dream. I tried. I really did, but as in all of these other attempts; I failed.

Facebook Status – June 2017 

Silent Coffee on Vacation

Second attempt at 5 minutes of alone time. First attempt aborted when DC forced Doug to bring him to find me.

*******

Sleeping in and #SilentCoffee – March 2018

DC , on a regular basis feels the need to announce that he is  “Not tired yet” at different intervals during the evening. There have been times when Doug was over and I am just too tired to stay awake and since he was here finishing his laundry or doing something on the computer, I will tell DC, who just announced he was “Not tired yet” that he can stay up until Doug leaves.

Of course I know that Doug would not leave until DC was in bed and of course he would lock the doors on his way out.

Nope….. As soon as I say I am going to bed, even if he had just made his “Not tired yet” announcement, he begins packing up his princess papers, books and markers and goes up to his room.

If I am going to bed, he is going to bed.

If I am awake, he is going to be awake.

That is just the way it is.

I was already scheduled off from work today but due to the impending storm, I was almost 100% certain that I would be keeping DC home as well – whether his program was cancelled or not. I did not tell him last night just in case there was a drastic change in the forecast by the time morning came. Because I already knew that only one of us would possibly be getting ready for work this morning, I let him sleep about a half hour longer than usual (normally we are both up and dressed by the time we find everything is cancelled so there is no going back to bed – ever).


Unless everything is called off the night before, today may possibly be the very first time, ever that he hasn’t been up, showered and dressed before we found out that his work (or school, back in the day) was cancelled.

What you have to understand here is that every single time I have to get up during the night, every night (I am old, so me getting up during the night happens QUITE often), I have to first stop in his room to tell him that it is not time to get up yet and he needs to go back to sleep. He hears me, every.single.time and is ready to bound out of his bed, no matter what time it is.

This morning when I got up for good, I went into his room as always and said. “I am going downstairs now, if you want to sleep longer you can” – (This never works but still, I try)

I was shocked when he said “Okay” and rolled over to go back to sleep. I was thinking “Wow! I actually get to have silent coffee, this morning”.

I hardly finished making the coffee when I heard him yelling “Mom, want to get up!”

His face when he came downstairs made me laugh out loud!

He was angry with me because apparently he thinks I told him to stay in bed while I had the nerve to get up and come downstairs without him!

Silent Coffee, cancelled….

******

Mother’s Day – May 2018

Hiding in the Laundry room

It is Mother’s Day. In a desperate attempt to just have 5 minutes alone and silent coffee, I took my coffee down to the laundry room/garage.

I barely had time to put my cup down when I heard DC knocking on the door at the top of the stairs.

This was very odd indeed because trust me, he rarely knock on any door.

I yelled up the stairs.

“What’s wrong?”

DC: “What you doing?”

“I will be up in a minute”

Knocking continues.

DC: “I want a hug”

“I will be up in a minute.”

DC: “I want a hug”

(He did not mention wanting a hug when I was upstairs with him)

“Okay, I’m coming”

So #SilentCoffee was a failure once again, but I did get a hug and he did share his M&M’s from the M&M store yesterday with me, so I really can’t complain.

Happy Mother’s Day, everyone.

I wish you all  5 minutes of #SilentCoffee and if that did not/does not happen, I hope you get a big HUG (M&M’s are optional)

Happy Mother’s Day!

Telling Time in DC-Land

 

I usually use my “Other Blog” (Take Another Step: Life With DC) for posts involving Face Book Statuses, but this was big for DC (and me) so I decided to post it here. It may not seem a big deal to you, but believe me it is a big deal here in DC-land!

(How much of a big deal, you ask? I just washed my hair to get all of the “gray stripe concealer ” spray out so I can dye said gray stripe but I chose to sit here and write this right away, while hoping that no one comes to the door or nothing happens that will force me to leave the house. No, there will not be photos.)

Telling time is not something that is easy for DC. I remember one of his teachers telling me that telling time might be something he will just have to memorize and I do believe that to be true for the most part. This is something like balance (on a bike) that is really difficult to teach. You get it or you don’t.

He understands that there is morning, afternoon and night, but the actual “clock” times that correspond to particular times of day are very often confusing to him. Adding to the confusion is the fact that there are TWO of every hour in a day (sometimes I think Military time would make more sense to him).

For example; he eats breakfast in the morning and lunch in the afternoon and he sort of has an internal clock for that. But when there was early dismissal at school back in the day or he has to come home early from work, he expects dinner to come not too long after he gets home, because dinner usually comes not too long after he gets home.

You are now going to suggest a digital clock or watch…..

Done that.

He has a watch and although he really does not like to wear anything on his wrist, every once in a while he will put it on. It is helpful only at times when he is asking me when we can go somewhere or do something – I can tell him the numbers to watch for but then instead of continuing to ask me about whatever he was asking about, I get this…

I didn’t realize that DC had packed his watch and was wearing it in the car. I only did realize when we started getting minute by minute updates from the back seat:

“Mom, it is Eight-‘Firty’- Seven, we have to find Uncle ‘Liar’ –

“Mom, it is Eight-‘Firty’ – eight, we have to find Uncle ‘Liar’ –

and so on………. 

~ From:  Because, Because, Because, Because….BEEEE CAUSE

(Uncle ‘Liar’ = DC-speak for Uncle Lyle)

The numbers really do not mean a whole lot to him in correlation to time of day.

When he was younger, he started asking for “5 minutes” when he arrived at school everyday. He did not know how long 5 minutes was or even that it was a length of time, he must have heard it somewhere.  But he did figure out that they would leave him alone for a little while so he milked it for all it was worth.

Over the years he has gotten a little bit better about reading the clock but really only hours and sometimes half hours so I was pretty impressed with this last year:

Facebook Status – June 5, 2017

DC: Mom! It’s Seven Fifty (fifteen) o’clock! 
Telling time is not something that comes easy to DC. Often he can get the hour (but more often he gets the hands confused so it’s 12 o’clock a lot) and once in a while he can get the half hour. 
7:15 with no prompting what-so-ever is HUGE!

 

Later that same week:

Facebook Status – June 7, 2018

So that happened Monday morning and after a few times asking him what time it was, and not getting the correct answer, I began to think that 7:15 was just a fluke. 
He did randomly announce 7:00 correctly on Monday night (hours are easier for him) but this morning he announced 7:25, when it was actually 7:25 (o’clock – we can’t skip the “o’clock”)! 
What I am taking from all of this is that he seems to get it right when he’s not asked – when he just decides to tell me what time it is…
and… he seems to be partial to the 7’s.

I’ll take it. It’s progress… but there is still that disconnect to the time of day and the passing of time (if I say “in two hours” or “in an hour”, it generally does not make sense to him, even when I explain and tell him what time it will be in two hours. He understands what time, because I am telling him the actual time. I do also count the numbers on the clock hoping that he will understand that two hours from 12 o’clock would be two o’clock. It just never seems to carry over to the next time.

I said earlier that he seems to have an internal clock for meals, but that clock only works on weekdays. Weekends he starts asking for lunch at about 10 am (sometimes earlier). I have told him many times that 10 am or when ever he is asking is still “morning” and afternoon does not begin until 12 o”clock.

This morning I heard:

“Mom! Lunch is in one hour?”

I looked at the clock and it was 11:00 am and lunch was indeed in one hour!!!!!!

I was shocked (so shocked that I think I scared him at first) and thrilled.

I asked him to repeat it and he did.

He knows he has done something GREAT – I am not quite sure he understands just what he did, even though I’ve told him over and over again – but he knows that I am “Impressed” (he loves that word).

I am not going to count my chickens but maybe it is beginning to make some sense to him.

 

It is well past noon now and he asked for and made his lunch at 12 on the dot.

 

And now I am off to take care of the gray stripe…

 

 

 

 

 

 

 

 

Please Translate – “Mom’s Office”

This post is yet another in a long line of posts about the way DC communicates or is not able to communicate.  Let me first say, in case you are new here; although he was non-verbal until he was seven years old – DC is now what you would call verbal.

Since is is the last day of Autism Awareness Month, I decided we could talk about communication one. more. time.

Verbal does not always equal communication.

He can recite lines from movies. He can usually tell me what he wants. He cannot always tell me when there is something wrong or if something has happened. Even when he has the words, he cannot always use them to communicate what he is trying to tell me or anyone else.

There are times when he will still use his sign language to help in his communication when something is important enough to him. In most cases if I do not get what he is trying to tell me right away, he gives up and just says “Nothing wrong”. Once we get to “Nothing Wrong” the conversation and whatever he was trying to tell me is lost.

As I have written before; one of the hardest things for DC to convey to me is when he is not feeling well or if something hurts.

Over and above the fact that he DOES NOT want to go to the doctor or “rest” at home, he does not often have the words to tell me when he does not feel well.  Or he DOES have the words, but cannot put them together or figure out how to use them in certain situations.

This is an example of a conversation we had just the other day…

DC came running into the room stimming wildly and it was apparent that he was upset about something.

I asked him what was wrong.

DC: “My heart is beating, beating, beating”

Me: Does your chest hurt?

DC: “No! My heart is beating – boom boom”

I do understand after all of these years that his “Heart Beating” means that he is upset about something or something scared him. It does not have anything to do with his heart but I always ask (just in case) if his chest hurts.

Me: Can you tell me what happened?

DC: (pointing to his mouth) Sink!

I went into the kitchen and he pointed to the sink – which was relatively clean.

Me: What happened?

DC: (annoyed that I did not understand) MOM’S OFFICE!!!!

Now, knowing DC as I do, I had to search my brain and think of something that happened to him at some point over the years when he was at work with me.

Fortunately, I remembered.

He was in Middle-School. MIDDLE SCHOOL!

When he was younger, he would “tell” everyone that he was sick; actually he would just sign “sick” with no other details. Most of the time he was not sick at all, but he knew the school nurse had jellybeans in her office so that is where he wanted to be! Then he discovered when he was finished with the jellybeans that they would call Mom to pick him up. Most of the time, knowing that he really wasn’t sick, I would pick him up and bring him to work with me – which he loves, so I wasn’t really winning any battles there, but I had to work. (We’ll forget about the ONE time, he threw up all over my office, the ONE time he really was sick and no one believed him. I guess he showed us!) ~ From:   Look in the Mirror and Spit Cookies, September 2013

Me: Did you throw up in the sink?

DC: Yes!

Obviously, not very much and he must have run the water before coming to get me. He has been jumping and dancing around the kitchen so I suspect that all of that activity was the cause of the situation as he did not seem sick otherwise.

Since the “Spitting Cookies” incident (linked above and here) he has learned and does know the word. He has used it before, but just could not figure out how to use it to tell me what was wrong.

The plus side of it all is that he tried to tell me and did not give up (although one would have to be me in order to figure it out). He does that sort of thing often. He brings up an example of something that happened at an earlier time to try to get his point across. This often works with me, but everyone else that he deals with in his day to day life do not have all of this information stockpiled in their memory and often do know know what is important enough for him to remember. What is important to him is not always what others would even give a second thought to.

Verbal and Communication?

Two very different things.

 

 

 

Speaking of Love

There are many words and phrases spoken by DC that he does not pronounce properly. Most of the time I will help him to try to pronounce them correctly or at least a little closer to correctly so others are able to understand what he is saying.

There are also a few other words that are not pronounced correctly that I happen to adore his version far too much to correct him. That list is growing shorter and shorter because someone always comes along and decides that they just HAVE to teach him how to say it the “right” way.  It kind of takes a little chip out of my heart each time it happens.

Below is one of my favorite posts about one of my favorite words….

So far, no one has taken it upon them self to try to change it and should not even think about doing so.

Just don’t.

“Mom, do you love meeee?”

 

I love you Magly

From the time that I was old enough to think about it, I always promised myself that if I were ever to have children that there would never be a second in their lives that they would not know that they are loved. This would never be something that they would have to wonder about – not for a single moment…

I think I have lived up to that promise to myself.

DC can and does tell me that he loves me many times a day – complete with and accompanied by the “I love you sign”. I know that he understands in his own way, what that means. This is not to say that I believe it is always all about me. Much of the time it is but there are times when he just needs to have something to say. It’s kind of a comfort thing for him. He says it over and over again when he is in an uncomfortable situation or a place that is new to him.

But, back to me….

I especially love it when he, at 25 reverts back to “I love you Mommy” instead of Mom, Mother or Vickie.  He is probably one of the most lovable people around and I am willing to take complete credit for that.

Is it just learned behavior and not real emotion?

Is it comparable to the times that I have to make a rule because I know he does not understand something?

Is he just, in his mind, following another rule?

Is he just going through the motions because that is what he thinks he should be doing or how he should be acting?

I used to wonder about that when he was younger but now I am convinced that although I am sure that some of that lovability was originally something that he learned, it IS also very full of emotion.

All of the above does not mean that he does not hear his fair share of yelling because let’s face it, every behavior can not be blamed on his autism.

When these situations arise and he is “in trouble” and after I start finding his apology notes everywhere – we always sit down and have a talk.

“No matter how upset Mom might get when you do something you are not supposed to… I always love you. When you are in trouble, I always love you. You never ever have to worry about that.”

When he is “in trouble” and we have not had the talk in what he thinks is a timely manner, he will come to me and say “Always ‘loves’ you.” He knows it, but he needs to have the talk. It’s a ritual and it is comforting to him.

DC’s ongoing “I Love you” campaign has evolved recently. While all of the above still holds true, he has added, ” Mom, do you love me?” (in his high pitched squeaky voice with the emphasis on the “me”).  I know he is not questioning the fact. I know he knows this and I know that he just wants to hear it again. I also know that this line must be something he picked up from a book or a movie because he is using the correct pronouns.

Just to change it up a bit, my response to this question is: “I love you madly”.

Just to change it up a bit more, I will ask: “DC, do you love me?”

His response is another in the long list of words/phrases that he uses that I know I should correct speech-wise, but I do not because I love the way he says them. I hope that this response never changes.

Mom, I love you ‘Magly’.

No corrections necessary……….

The “Hair-dish-on” is back…… already!

Doug left for his trip to Egypt today. This would be his second attempt to see Egypt; the first time was via cruise but the stop was removed due to the turmoil that was going on there at the time. Before he left, he decided to look at the forecast here over the next few weeks. He saw that it is supposed to hit 80 degrees in a few days. This would not have occurred to me since here in New England, we had 3 days of snow just last week, but it occurred to him to check it out (thankfully!). He knows me and he knows that I would not survive 80 degrees without the air-conditioner. Really, I would not. Living in “Hot-Flash” hell for the past 12 years (cruel and unusual punishment), I have the windows open all winter and still have to run out and stand on the front porch at times.

Really, I would not survive……

So…. he came over before he left for the airport to put my air-conditioners in!

Everybody say “Awww”.

No, Really – say it.

DC, on the other hand is not a fan – more so now that they stay in longer and longer as each year passes.

Below is a post from August 2017; when DC started looking forward to the “Hair-dish-on” coming out along with a few Facebook statuses on the subject (because this is an ongoing issue). He did not know he still had a few months to wait…

Is it hot in here or is it just me?

It was very early in August and I could not believe that DC seemed to be getting excited about the last day of camp as if he was willing it to be over. He loves camp and I did not understand why he wanted it to end so badly.

He started saying “This week, the last day of camp? Camp is over?” on Thursday the 4th.
I told him he had the following day and next week left.

“Next week, last day of camp? Camp is over?”

Yes, You went today and you will go tomorrow then Thursday and Friday next week. Next Friday is the last day. 

I was confused because he loves camp so I tried to get him to tell me why he wanted camp to be over. Wasn’t he having fun?

“Yes, DC is having fun with my friends”

So I gave him a choice…

DC would you rather to to ARC (work) or Camp?

“DC want to go to Camp, see my friends”

Do you like camp? You don’t have to go if you don’t like it any more.

“Yes, like camp. Fun with friends”

Let me just break here to explain that although DC understands the seasons, he cannot always tell you that July is summer or September or October is fall. Summer is HOT. Winter is COLD – so if we happen to be in Florida in January, it is summer – in his mind. He knows the seasons and the months that go with them by memory, not by understanding. They do not always make sense to him and when he is not concentrating or has something else on his mind he goes by the weather, period.

This week he started asking me about the last day of camp again and added “Summer is over”.
I told him that camp would be over on Friday but summer would not be over for a few more weeks.

He looked very disappointed by that.

It was then, as he stood there staring at the air conditioner and looking forlorn about summer not ending on Friday, that I realized what was going on in his head.

Someone at camp must have mentioned the end of summer. DC got it into his head that summer was over on the last day of camp.

DC hates the air conditioner. He thought he would be getting rid of it earlier this year because he heard and believed that the end of summer THIS year would be the last day of camp.

He must have been excited thinking he would be getting a break earlier than usual. As per the conversation we had before someone mentioned camp being the end of summer – he was looking at October as the end of the air conditioning. No wonder he looked so disappointed when I told him there was still more summer ahead…

<From Facebook Status 8/1/17 (before his end of camp/summer assumption)>

I know the air conditioner bothers DC but I usually don’t hear about it after the first few weeks after it goes in (it went in, in April) – Today is August 1st aka #CalendarFlipDay and after flipping all of the calendars, DC said…
DC: My ‘Hair-dish-on’ out in October
Me: What?
DC: ‘Hair-dish-on’ out at Halloween. 
Me: (wondering why he is talking about Halloween)
I don’t know what you mean.
‘DC: ‘Hair-dish-on’ FAN out at Halloween!
Me: Ohhhhhh, the Air Conditioner! October or November, okay?
DC: October
(He’s hoping that the air conditioner is out by Halloween. He knows that removing the A/C is NOT a decision I make lightly or early.) I guess even though he might stop talking about it after the first few weeks after it goes in; it still bothers him.
He’s looking for the light at the end of the tunnel – and even if it’s two months away; he wants to know it’s coming.
#WishfullThinking #IsItHotInHereOrIsItJustMe

———

I really do feel for him but I can’t take them out early. I can’t do it… I just can’t:

<From Facebook Status >

I can’t say “shopping for a bathing suit” is on my list of  “Seven Things I Hate About Summer” because I just don’t do that….. haven’t owned one in years..

Number 1-7 for me THESE DAYS are:
1. IT’S HOT! 
2. It’s too hot
3. Why is it this hot?
4. I can’t take this heat!
5. Holy S&%#! I am not going out there!
6. I AM ON FIRE!!
7. IT’S Too #$&%in’ HOT!

#IsItHotInHereOrIsItJustMe
🔥🔥🔥🔥🔥🔥
(you can pretty much count on hearing all of the above year round from me, though)

——–
<Facebook Status >

DC: Mom, Fan, Flapping, whoo, Mom, Flap like bird. 
***
(DC pointing out that my “I’m sweating to death” episodes include some of my very own “Flapping” …. Seriously, that’s kind of amazing that he’s made that connection…) 
#IsItHotInHereOrIsItJustMe

——–
<Facebook Status>

#IsItHotInHereOrIsItJustMe enough said…

——-
<Facebook Status >

 Dc wakes up in the middle of the night (yes, it’s 50 degrees and yes, I have both air conditioners running at the coldest temperatures) –
DC:”Mom! The Fan is Freezing!” – from the boy who never seems affected by heat or cold. 
DC: “Mom! Turn it off!”
Me: “DC, I’m sorry but I can not do that. You will have to use another blanket”
I will do just anything for this child, except turning the AC off.
#IsItHotInHereOrIsItJustMe

*****


I wonder where he gets that?? (A reenactment, of course) 
#IsItHotInHereOrIsItJustMe

——–
As you can see, this is not an issue that is new and does not look as if it will be resolved any time soon (unfortunately for the both of us)….

I am very soon off to bed armed with ice pack, my cooling pillow and the A/C set at “ultimate freeze” ~

Here’s to looking forward to the “end of summer”.
*****

~ Originally posted at Take Another Step – Life with DC

Also see: “Hair-Dish-On” is Gone (the official end of summer)

I have a blue light

 

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

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

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

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

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

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

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

He is happy.

You should be so happy.

I love our life.

He loves his life.

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

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

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

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

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

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

We need more.

 

 

 

 

‘Twenty-Seventeen’

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

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

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

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

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

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

I love him “Magly”

Twenty-Five


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This week we celebrated DC’s ‘twenty-five birthday’ (DC-speak).

TWENTY-FIVE!!!!

I just cannot wrap my head around that fact. I cannot believe so much time has passed. I cannot believe that the little boy that I once carried around… everywhere, is 25 years old. I have heard about his ‘Twenty-five’ birthday all day, every day since the calendars changed from February to March, but it really did not hit me, emotionally until the day before, when some tears were definitely shed.

‘Happy tears’ – I told him. He loved that.

He has come so far in those 25 years….

 

From the boy whose only word until he was almost 7 years old was “”Momma” –

To the boy that eventually moved on to –

“Mommy” – and then –

“Mother” when he’s feeling a bit more formal and/or reciting Disney.

To the man who at times decides that “Vickie” is appropriate because in his mind, he is an adult and he should call me by my adult name.

 

From the boy who was always the loudest person in the room but could not tolerate noise or crowds –

To the man who is still the loudest person in the room, but can tolerate noise and crowds so much more easily, most of the time.

 

From the boy with the very limited menu who I thought would never gain any weight –

To the almost 6ft, 200lb man, still with a limited menu, but a bit more open to trying new things.

 

From the boy, who due to a delayed reaction from almost choking, completely stopped eating for almost a month –

To the man who can still have the random delayed reaction,  but now his Mom can usually recognize it and figure it out much more quickly.

 

From the boy who could not stand to be away from me at any time and had no interest in his peers and socializing –

To the man, who still must know exactly where I will be, but looks forward to spending time with his friends and attending social activities.

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From the boy who, I was told would never speak

To the man who never stops talking.

 

From the boy who was always lovable with me when he was a baby but had a very low tolerance for his head, ears, face and so many other touches that I remember saying,  “If he wasn’t so loveable, I would think he hated to be touched”

To the man, who will still hug and kiss his Mom (and is not embarrassed to do so), but will also hug his friends, his family and just about anyone he wants to, whether they want a hug or not.

I cannot be more proud of my boy…. I cannot love this child more. He amazes me everyday. He makes me laugh everyday. He fills my life with worry. He fills my life with love. I would not trade the last 25 years for anything in the world. He is the joy of my life.

If I had only one wish; my wish would be for the rest of his life to be as happy as it is right now and that he will be just as full of sunshine and light as he is right at this moment……

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We are all very different

Below is a comment I made recently on another blogger’s post (See: I can’t let it go). Due to the long-windedness of it, one might assume it was in opposition to what was written. Believe it or not, it was not. I did agree with much of the author’s points and began my comment by saying just that. It just so happened that this was the time and this was the post that I randomly chose to get it all out of my system. Apparently I did not accomplish my mission to get it all out, because writing it in a comment did not keep the subject from gnawing at me so I am copying most of it here and adding the things I have already said said over and over again after the comment.

“I have done my share of complaining *on my blog* but the complaining is never directed at my son, it is directed at the people who do not understand my child or the people/professionals who should know better. I do not go into detail about melt-downs or behaviors and I certainly share and celebrate all of his accomplishments.

I do not mourn my child.

I do not mourn my life.

The only thing that I mourn or worry continuously about is his life after I am gone. He cannot live on his own. He cannot take care of himself. He does not understand danger. He does not understand when/if someone is taking advantage of him. He has no siblings *so there is no one that I can count on to take care of him after all of the adults that have been appointed are gone*. He is verbal but communication is *difficult* so he cannot communicate when something is wrong.

Even though I have taken all of the steps that I can to make sure that as much as possible is in place for him when that time comes, he will, I am sure have to live in a group home when I am gone and that terrifies me. He will be at the mercy of strangers.

I want him to be as happy as he is right now for the rest of his life. I do not want to think about him being abused, hurt or treated poorly. I do not want to think about him not having his beloved books, markers, band aids, dolls or computer. I do not want to think about him not understanding why – *if  any of the above concerns come to be*, this treatment is happening to him.

This is why I write about him. This is why I tell stories about him so that maybe people will understand how his mind works and understand that not all autistic individuals are the same. This is all that I can think of – every . day . of . my . life. I love my child more than I could ever have imagined that I could love anyone and I live in terror of what will happen to him when I am not there to protect him.

This is not about my life, it’s about his – his future. 

*Maybe other parents who have more than one child do not worry about the “later” as much as I do because they know their child will be taken care of, but this is my reality.*

Although I do not agree with some of the blogs, articles and videos out there, at all. I do think we need to shine a light on the fact that everyone is not the same. Maybe not in the way it has been done recently and not in the words that were used – but we do need to see every side. We don’t need to share every detail – I don’t but I understand that some people do. It is sad that all of this is causing so much upheaval in the *autism community* – there has been enough of that already.

 

 

This is not to say that I don’t have hope. I always have hope. DC, even at this age continues to make progress – little things and small steps, but it is there. I hope that I will be able to find someone his age that is willing, not to take him in but to be there to see that he is being treated the way I want him to be treated, to see that he has the things that he needs and wants, to see that he gets the proper medical attention, to see that he is able to go places and participate in the activities that he loves.  This is where my hope lies.

I had a coworker who after listening to a now ex-coworker complain about having kids, having to work and the fact that no one understood her situation, said “Are you kidding me? Vickie has given up her whole life for her son”. I suppose that was meant to be a compliment, but no; I have not given up my life and it is sad that some people might see it that way. He is my life. I do not feel as though I have given up anything. Sure there are times when I would like to leave the house without having to find someone to watch him, or go to the store without waiting for him to go though his entire ritual before we can leave – where I could have been there and back by the time all of that happens. I would like to not have to worry so much about him when he is not right there with me. This is not giving up my life. I am sure I complain at times; as anyone might complain about their children once in a while.  This is my life. I do not feel as though I am missing out on anything.

DC is happy. That is apparent to everyone who meets him or knows him. He has his days, but doesn’t everyone? He is happy. He is healthy. He loves his life. I know this.

I tell stories, sometimes with humor; sometimes not. I tell stories because if I were to try to explain autism – his autism to anyone, I would be talking for hours and still never be able to give a true picture.

I tell stories to show you how his mind works. I tell stories to show that even when your child hits adulthood (he is 26), you could be going along on your journey and BAM, seizures start at 24 – or BAM, new or old behaviors crop up.

I tell stories because NO ONE is the same.

Everyone’s life is different. Every child is different.

I wrote a piece a while back about death. I wrote about the death of my stepfather because I was not and really am not sure that DC understands death.  I had someone comment that her son is autistic and she was there to tell me that DC absolutely does understand.

No! It does not work that way.

Everyone is different.

I wrote a piece about whether or not DC understands that he has autism (we talk about it because I never want him to think it is a bad thing) and I got a comment saying “I am autistic and believe me, he understands”.

No! It does not work that way.

Everyone is different and unless you know my child and have spent a lot of time with him, you can not tell me what he does or doesn’t understand.

I wrote a piece about all of these worries before, the comment: “I am autistic and I can live on my own – he will be fine”

No! It does not work that way.

Everyone is different.

I guess this has been my point all along. Everyone is different. We need to see that instead of bunching everyone under the same umbrella.

We may not agree with the videos and posts that have been out there recently and I agree that no one should be made to feel as though they are a burden, these people are talking about their children, not autism in general. They are trying to show the side we do not normally see. I do not agree with a lot of it but I do not think that they are trying to demonize autism. They are talking about their life and only their life and oftentimes are posting these items during some very raw moments.

Let’s face it; we all can feel sorry for ourselves once in a while. It happens to all of us. Maybe when we see or read something like this we should not begin with bashing. Maybe we can try to look deeper and maybe even have a discussion. No one will ever be able to see a different perspective when we begin with hostility.

Everyone is not the same.

*****

*Added to the comment for further clarification here

To Explore Strange New Worlds – Fun and Informative (A Book Review)

To Explore Strange New Worlds: Understanding Autism Through A Star Trek Lens ~ By Elizabeth W. Barnes

I have to begin by saying that I always loved to read, until I hit the age where my arms were no longer long enough to see the pages clearly and I had to begin wearing the dreaded “reading glasses”.  I do not know why reading a book while wearing the dreaded “reading glasses” bothers me so, but it does. Although I have from time to time, purchased a book with all good intentions, I can’t say I have been able to get through a single one.

The subject of Star Trek and autism relating to each other was intriguing to me. I have been a Star Trek fan since the first episode of The Original Series hit the airwaves; a VERY long time. I have a parent to a child with autism for over a quarter of a century. These are two subjects that I can relate to more than most.

I have always looked at Star Trek as diverse and inclusive. After my son was diagnosed and as he got older, I of course saw the similarities between him and Mr. Spock, Data, and Seven of Nine, but it never occurred to me just how much more there could be found in the Star Trek Universe. It was fun and eye-opening to look at Star Trek again though the scope of autism.

It took me a little while to begin reading it, because….. “reading glasses”, but once I picked it up, I was pleasantly surprised at how quickly I was able to finish it – glasses or not.

It was an easy read. It was not clinical or technical. It does not read like a “how to”, or an instruction manual.  There is no advice or counsel as to what you should or should not be doing. It does not preach.

What the book does, is point out the regular every day issues that our children deal with through Star Trek episodes. It provides thoughts and tips for discussion as a means of assisting our children though these issues.  It is a collection of episodes and specific scenarios from those episodes that are relevant to our day-to-day life. These situations and the manner in which they are resolved are broken down in a clear and simple manner to promote thought, discussion and understanding about anxiety, social situations, problem solving and much more. Once you read this book and begin looking at the episodes in this way, this method could then be applied to other episodes, other situations in the same episodes and even different television shows, movies or books.

Being a Star Trek fan, it was actually fun reading over all of these episodes and looking at them in this light.

If you are a Star Trek fan with some connection to autism; this book is definitely for you.

If you are a Star Trek fan who may want to learn a little bit about autism while reading synopses of episodes from most of the Star Trek television series; this book is also for you.

If you are a Star Trek fan and the parent of a neurotypical child; this book can also be helpful as many of the issues covered such as bullying, acceptance or fitting in and peer pressure are not specific to autism.

If you are not a Star Trek fan; first I will ask ……..

WHY?

Next I will say that I do not think it matters. I have to admit that there were a few episodes that I did not remember and it did not take anything away from the point of the book. To the Star Trek novice or the person who has no knowledge of the  franchise other than the name, I believe this book would be just as interesting and informative to read as a collection of short story synopses that begin with a problem, end with a solution and the break down of the steps the characters took to get to that solution.

I found “To Explore Strange New Worlds – Understanding Autism through a Star Trek Lens” a fun, informative and quite fascinating romp through the Star Trek Universe and the autism spectrum. I highly recommend it!

 

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To Explore Strange New Worlds: Understanding Autism Through A Star Trek Lens – By Elizabeth W. Barnes (click image to purchase)