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.