If You “Don’t Mind”

I came across a meme a few weeks ago. I do not even remember where I saw it, but I did see it more than once.

It read (paraphrasing):

Please share if you don’t mind having a LGBTQ+ person in your family….

If you don’t mind

If you don’t mind?

I imagine all were posted by people who thought they were being… oh so supportive.

If you don’t mind???????

Let’s look at this from a different angle, shall we?

How supportive would you appear to be if you shared a meme that read:

Please share if you don’t mind having an autistic individual in your family

or

Please share if you don’t mind having a disabled individual in your family

Please share if you don’t mind having an overweight individual in your family

A person dealing with mental health issues –

A person of color –

A red head, a blonde…..

Insert any adjective used to describe a person or group and you can and should be able to  see that “not minding” is not only insulting but not very inclusive.

If you want to be supportive of this or any community, then be supportive.

Support is not holding yourself up as better than the person or community you are trying to support – or should I say; that you don’t mind supporting.

If you cannot be supportive without marginalizing a community, or giving back-handed “support” then please just don’t say anything at all..

Believe me – most of us doing the reading won’t mind.

 

 

 

 

 

The Little Things That Aren’t So Little

I know I have said in one post or another that there is always progress. Maybe not the progress he made when he was younger, but there is always something. It may be just a little thing but it is always cause for celebration.

Here is one:

Yesterday, DC attended his Camp Spring Picnic. He loves camp – you have heard that before if you have been around here long enough. Even though this is something he WANTS to do and even though he was so excited about it that I had to hear about it every hour it seemed, all week – there is still that “Arrival Anxiety” when he first arrives.

He did not skip that step yesterday.

You may have also read about DC’s phone skills or lack there of at times. DC can use the phone. He will call anyone THAT HE IS TOLD TO. He calls me every day when he is leaving his program (because he is supposed to) and the conversation rarely veers from the script he uses.

He will not use the phone spontaneously. This is something I really want him to understand. I want him to think to call me if something is wrong or if he happens to get lost or for any reason at all. I want it to occur to him if something goes wrong, that he should use his phone. I really am not sure that it would occur to him. I’ve gone over this many times, but as many times as he says he understands, I don’t think he does. He has never called anybody spontaneously, he has just about never asked to call anyone. After all this time, he still only uses the telephone when he is told to, to call me from his transportation and to call me when he gets home.

The Camp is closed up for the winter so the water was just turned back on in time for the picnic. Apparently something happened between the turning on of the water and the day of the picnic because when we arrived, the director was waiting for the repair man to come. There was no water. Not a big deal. There was bottled water to drink. There was also a BIG bottle of hand-sanitizer on the counter for hand washing purposes.

But….

I had to explain all of this to DC ahead of time. I did not want him to find out when he went to wash his hands in the restroom. I am sure his reaction would have been worse if he found out on his own, but the news did not go over as smoothly as I had hoped. He just wasn’t having it. The anxiety he was already having shot up a few notches.

He did not need water at the time and probably would not need water until he used the restroom, but just knowing that there was supposed to be water coming out of the faucets and it was not there was too much for him.

Something is supposed to be there and it is not – even if he doesn’t need it; it bothers him and he cannot shake it.

I took him outside so he could do whatever he had to do – flap, stim, run, yell – whatever he needed to do to calm down. He did all of “the above” and few more just for good measure but it did not seem to be helping. When he got back inside he started running to the faucets and turning them on. He went to the hand-santizer and used it – then he used it again – and again – and again. He was fixating on the hand-sanitzer because there was no water.

Finally he calmed down enough so I could leave to go for coffee with *Tonya, *Salli’s Mom.

You know… coffee without someone yelling “Mom, Mom! Excuse me, Mom!” throughout our conversation? Yeah, that.

Tonya was outside speaking with another parent, so we did not leave immediately after I left him in the Arts and Crafts building. At some point, he must have noticed that I was still outside and decided to come charging out to the driveway.

I understand that he was upset. I understand that he wanted to see me. I understand all of this, but running out of the building to the driveway is about his safety and I am NOT going to let that go.

I told him that he should NEVER leave the building without telling anyone where he was going. NEVER. He should not be running out near the driveway. It is dangerous.

NEVER!

I understand his issues with the water and the hand-sanitizer and how he was a having a hard time getting over it (once he does get over it; he is OVER it), but this was about safety. He needs to understand that it is dangerous. He cannot make a habit of leaving places (even if he sees me outside) without notifying the people in charge and he certainly cannot go running out close to possible traffic. Yes, it was a remote driveway, but there are no gray areas with DC.

He knew I was upset and started one of his apology tours. Fearing the loss of computer privileges for the weekend, he put that aside a little bit (although I was sure I would get the full package later)  and went back inside without too much of an issue.

We finally made it to Dunkin Donuts and got our coffee.

As we were sitting there, my phone rang.

It was DC’s phone.

I panicked for a second, thinking something was wrong.

I answered.

“Hello Mom. I am sorry for ‘the’ running outside”

It was bothering him and he decided to call me.

He decided to call me.

No one told him to. No one suggested it to him (trust me, I checked with the director)

He decided to call me.

It occurred to him that he could call me.

He has really only done this once before.

Once could be a fluke, but twice is – I hope – him understanding that he can use the phone if he is having a problem.

I made sure I praised him up and down about it and reiterated that he can always call me at any time – when ever he wants to.

Believe it or not, that one little phone call made me feel like he is “getting it” which of course made me feel a whole lot better.

(and I received my first dandelion bouquet of the season)

Progress. It comes in the little things, but it is there.

***

Doug, who has witnessed many of DC’s never-ending, in my face every 10 minutes apology tours (see: Chosing My Battles) had a good laugh halfway though. He could imagine the apology tour, me finally getting to have coffee and thinking I was getting a short reprieve from the said “apology tour”, only to have the phone ring with “I’m Sorry Mom!”.

Honestly, I was so thrilled by the spontaneous use of the phone that this did not even occur to me.

 

 

 

 

 

 

 

 

Bug Spray Season

If you have been around here long enough, you know that DC dreads Sunscreen and Bug Spray season. He puts up with it some days more than others.

Come April or May each year, his job switches from indoors making dog biscuits to outdoors and the greenhouse. He loves the greenhouse, but the downside of this move is the dreaded Bug Spray and Sunscreen.

Since we have just moved into Bug Spray/Sunscreen season, I thought I would share a little story from last year. As if having to wear bug spray was not enough to throw him over the edge….. let’s just add something to make it worse.

#NobodyListensToMe

There are more examples than I can list … this is only the most recent example.

****
Most of you know that DC works in a group supported employment program.

During the spring and summer he works in their greenhouse and also helps to take care of the grounds/lawn.

You may also know that every morning I have to load him up with bug spray and sunscreen (which he <insert sarcasm font> thoroughly enjoys <end sarcasm font>).

Adding to the sheer annoyance of having me spray this stuff all over him every morning, there is also the issue of him not really understanding how to hold his breath so he is not breathing it all in. I do try to cover his nose and mouth AND we usually go out on the porch but he just can’t seem to move out of the cloud before he takes a deep breath.

I grabbed a few of these masks the other day from work to use temporally until I had a chance to pick up some not-so-cumbersome masks somewhere else.


The day I brought them home, DC and Doug were going to walk the trail with his ARC friends.  I told Doug to be sure to put some bug spray on DC before they walked. I gave him a mask and explained what it was for.


I wondered why Doug was taking the mask with him but I saw he was also carrying the can of bug spray so I just figured he was going to put it on DC when they arrived at the trail.


When they arrived home after walking Doug reported that DC hated the mask. His glasses were fogging up and he just couldn’t stand it.


Me: (confused by this)”How long could it have taken to put bug spray on him?”
Doug:
Me: “How could his glasses fog up in that small amount of time?”
Doug: “We only made it half way down the trail before he insisted on taking it off.”
Me: “Wait! You made him walk with the mask on?”
Doug: “Yes, you said it was for his allergies!”
Me: “No….. I said it was so he didn’t breathe in all of the bug spray”
(I mean, seriously…. what he heard wasn’t even close to what I said)
Doug:
Me: So did you at least put the mask on him while you were spraying him?
Doug: No, I put it on him when we started walking.


#NobodyListensToMe #YouCantMakeThisStuffUp

From: Facebook Status May 31, 2018

*****
After the initial Shaking Of My Head and “Wow! How did he get that so wrong” faded away, the next realization was:

I am sure that more than one person in the ARC Group must have wondered and asked why DC was walking wearing this industrial-style, cumbersome mask. I don’t have to even ask; I can hear and see it, clear as day – Doug’s explanation:

“His mother <insert head shake and eye roll>. You know how she is.”

No matter what he tells me, I know there was some amount of eye-rolls and “over-protective mother” insinuations on his part.

#GuiltyButNotThisTime

Earth Day, The Calendar, Groceries and Allergies

 

Allergy season was  simply brutal last spring and fortunately I have not been hit too badly so far and DC almost not at all (knock wood)

Last year I was not so lucky.

When they did hit me I just was not expecting it so I did not prepare in advance. Yes, it was April and yes, they hit exactly when they normally did but really – it was snowing and cold all month so spring allergies were the last thing on my mind.

Not only were my allergies at Max Capacity but DC discovered a “Holiday” that he never noticed before..

Facbook Status – April 17, 2018

Due to my allergies/bronchitis or whatever the heck is happening, DC missed going to the grocery store on Sunday and again today. (Sunday and Tuesday are grocery days).

No one loves the grocery store as much as this guy so he is getting a “little bit” anxious about it. Believe me, we are not low on food and believe it or not – – because I know you’re thinking it, we are not even out of bananas! 

When we skipped it on Sunday I told him we could probably go on Wednesday if I felt better (I said Wednesday because he has an activity scheduled tonight so his usual trip today (Tuesday) was not even on the table anyway.

The promised trip to the grocery store was written on the calendar as soon as I mentioned it, but he is still very worried that I won’t feel better by then (I do feel a bit better and did take him to his activity tonight). 

I began hearing about the promised trip on Wednesday over and over again. In between asking about the grocery store he also made a point of asking if I was feeling better. His concern would have been lovely if it weren’t really all about the grocery store and  reminding me about the grocery store over and over and over and over and over. 

This morning, still not feeling well,  I finally had enough of listening to this every five minutes, I told him I did not want to hear about the grocery store again until it was time to go on Wednesday and if I heard about it one more time, we would not be going at all.


He stopped asking about the grocery store….but he resorted to reading me the grocery list over and over and over and over again while never specifically mentioning the grocery store……

****

You will be happy to know that DC finally got to go to the grocery store  so with that behind him,  he is now moving on… 

Looking for any excuse or holiday to go “out to eat” I started hearing about “Earth Day” (another “holiday” he’s never mentioned before) the minute the groceries were put away. 

After hearing about it more than a few times and not wanting to hear about it over and over again all week,  I explained to him that Earth Day is not a “going out to dinner” holiday. It is a leaning about the the Earth holiday so to celebrate Earth Day, we will have to go out for a walk in the woods ….

I have heard nothing more about Earth Day. 

****

So Happy Earth Day to you all. If you are looking for DC, he will be boycotting.

(I may have spoken too soon about my allergies not being all that bad this year.)

 

Easters Past and Present

 

A few random Easter Statuses from over the years…..

How things change and how things don’t…

Day after Easter 2012 – Status (posted 2017 as a Memory)

 (At work with me) Five years ago – day off from school so came to work with me. Serious post-Easter sugar crash in progress.

*****


Easter Eve – April 4, 2015 – Status


So in anticipation of the Easter Bunny, I suppose… 

DC went to bed at 9:00! Seriously, 9:00!

Happy Easter!


****


Easter – April 5, 2015 – Band-aids and Jelly Beans (not much has changed)


We’ve got Jelly Beans and we’ve got band-aids. Happy Easter!

 

******


Easter in Mystic 2015 (posted 2017 as a Memory) – The Band-Aid King

DC sporting his Easter band-aids, which are not to be confused with his birthday, Christmas or every day band-aids

 


*****


Easter 2016 – New York City Easter Cruise – complete with Creepy Bunny

 

“Easter Bunny, come over here!” (How freaky is this bunny?)


*****



Easter 2017 – Cape Cod – Phew! The Bunny found us!


DC: Mom! The Easter Bunny visited!

Me: He came to the hotel? Did you see him?

DC: Yes!

Me: What did he look like?

DC: Jelly beans

Me: No, what did the bunny look like?

DC: DVD’s

Me: The bunny. What did he look like?

DC: Chocolate

Happy Easter!


*****


Easter 2018 April 1st – A Trifecta

Happy Easter! DC was very excited to wake up and find his basket this morning, but before he dove in, he had to make sure the calendars were “Flipped” to April. That being done – he could then enjoy his basket. Very confusing having Easter,#CalendarFlipDay and April Fools Day fall on the same day this year. He really never “got” April Fools and I have to explain to him every year that people might play jokes, but he really doesn’t get it. Maybe we’ll just wear some ORANGE later …. 


*******


Easter 2018 – A little bit of confusion


Yesterday we went to Easter Dinner at the place where we usually spend Thanksgiving. For Thanksgiving, we usually spend the weekend. 

We were only going for the day yesterday. I explained to DC that his favorite book/toy store in that area would probably not be open because it was a holiday. (Don’t worry, we did find one place that was open and he managed to find a book).

When we arrived, DC got a little bit upset and said he did not want to go there. I didn’t know why – he usually likes this place, so I attributed it to his “arrival anxiety.
He calmed down eventually and we had a nice dinner.
After dinner, we visited the gift shop (for the book), took a quick ride around the area and we headed home.
Walking up our sidewalk, after arriving home, DC put his arm around me and said:
“Mom, you saved me! Thank you for saving me!”
Me: What did I save you from?
DC: The vacation!
I realized then why he had been so upset when we got to the restaurant. As soon as he saw it, he thought we’d be staying over – without his computer, DVD’s and books.
#NoHotelWithoutHisStuff

*****

Easter 2018 – a little more confusion

I posted the other day that we went for Easter Dinner at the place where we usually spend Thanksgiving. I discovered later that DC was nervous that we were staying the weekend without his computer/DVD’s/Books and markers – we weren’t staying. Yesterday (Monday) he, all of a sudden yelled “Happy Easter. Easter is coming! Going to Mystic on Easter!” (in the past, we have gone to Mystic for Easter weekend – We have also gone to Boston and New York for Easter Weekend – and we went where we went this year, just not for the weekend. I don’t know why he is so stuck on Mystic)

Me: (???) DC, Easter was yesterday. Don’t you remember?

DC: (there is nothing that reminds me of his father more than that blank stare)

Me: Don’t you remember that we went to dinner and the toy store was closed but we found a Treasure Island book at a different store? Do you remember you got your Easter Basket in the morning?

DC: Yes. Going to Mystic.

Me: No, we already had Easter. Easter is over.

DC:

Me: We can go to Mystic another time, but Easter is over.

DC: 

So, I can only assume that when we did not stay over on Easter at the place we usually stay for Thanksgiving weekend, he thought we’d come home, get his stuff and head for Mystic.

Or….. he just looking for a Do-Over.

******

Easter 2019:

We were on vacation for the week before Easter this year. We arrived home late (this) Saturday afternoon.

The vacation was fun but DC was happy to be home. After a week-long of “looking around”, lots of driving, lots of different hotels; Easter will be very low-key and hopefully less confusing than last year.

Just the Easter Bunny (of course) and some Chinese food to check off the holiday “Out To Eat” box.

Meanwhile …. somewhere in PA. Big Bird is applying for the Easter Bunny’s job.

Have a Happy Easter!

The Blue Bulb

A year later … it is still there, again for no other reason except that it is still working and it is difficult to change. Left over from years ago when I was ignorant enough to support “The Organization That Will Not Be Named” (AS). In my and other’s of the same era’s defense – we had nothing else. We were at the mercy of teachers, doctors and professionals who were supposed to know better. We had to learn and change on our own…

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.

 

 

 

 

St. Patrick’s Day and Tradition

First, let me say that we are not Irish. I might have a tiny bit of Irish on my father’s side but really not enough to claim.

Last Year: Facebook Status – March 17, 2018

All I have heard about since before last weekend was 1. DC’s birthday (next week), 2. Lunch with his Aunt and Grandparents (yesterday) and 3. St. Patrick’s Day (never mind that my birthday was Tuesday). I have heard quite a lot about St. Patrick’s Day – He has plans: Bookstore and “Out to eat”. I do not know why he is all about St. Patrick’s Day this year or why he thinks we are going to the bookstore. I know #ItsWhatsNext in DC’s calendar driven world, but it has never been a big deal to him before. I will have to figure out if, by coincidence we actually went to the bookstore last year and/or “out to eat” because if you do it once – it means it will forever be tradition.. whether you know it or not.


******

After a little bit of thought, I realized that we have had a few Winter Guard shows over the years that were scheduled on or right around St. Patrick’s’ Day.

Winter Guard Show = “Out to eat” afterwards in DC-land, so there’s that. Book Store? That must have happened once.


Later – March 17, 2018


I talked him down to just going out for a “treat”. He chose the red velvet cupcake (no green involved). While there I noticed that he was doing everything in slow motion (not just slowly, but really in slow motion); lifting his juice, putting it back down, picking up the cupcake, putting it back down – I thought that there was something wrong.

(Forgetting that on the way there, I had asked him to take his time eating and go slowly so I could at least finish my coffee before he was “done” and it was time to leave.)

When I asked what was wrong, he very slowly lifted his juice and said

“Going  S-LLL-OOOO-LLL-YYY” – 


Silly me.


I definitely did not want to take him to the book store the week before his birthday because I’m sure he will get a few of his beloved Barnes and Noble gift cards and seriously I am just flat out of room for books….



Last year I asked that you remind me of all of this when DC started asking to go out for a “Treat” on St. Patrick’s Day (because he starts the reminding relatively early) this year so I am not wondering why he is so adamant about going out for a treat on St. Patrick’s Day. My memory is just that bad…..

Or…could it be that he comes up with so many “traditions” for so many holidays that I just can’t keep them straight any more?  

Well, just forget about all of that because this year we do happen to have a Winter Guard Show right on St. Patrick’s Day, so I am sure that the “Out To Eat” tradition will be reinstated, overriding the newer “Treat” tradition. 

Hopefully next year, when DC starts talking about “Pencil – Very – a” (Pennsylvania = DC-Speak) and “Out to Eat”, I’ll remember where THAT idea came from.

Edited to add: And now that he realized that “Pencil-Very-A” is very a long drive, almost like a “looking around trip” ; he has just – right this minute, added a bookstore in “Pencil-Very-A” to his “Out to Eat” tradition.

So that’s how it all happens….

Magnets, Meds and Memory

Let’s begin with my memory, especially for the things we do habitually every day and even more especially, the things we do out of habit or automatically in the morning.

Back before they invented coffee makers that shut off on a timer, I can’t tell you how many times I had to leave work to go home because I had convinced myself that I left the coffee maker on. When my job moved further away from home I had a friend who knew how to get into my house for just that reason.

Never – not even once, was the coffee maker found on – I just could not remember shutting it off because it was one of those things we do automatically and do not always remember doing.  If I can’t remember doing it, I begin to convince myself that I forgot to do it.

Morning is the part of the day that I seem most affected by this phenomenon.

The second thing that you need to know about me is that I stink at medication. I have never been on any kind of  medication with the exception of the random round of antibiotics that everyone needs at one time or another. I have a hard time remembering to take them and more than once during the course of the antibiotics, I am dumping them out and counting them to see if I remembered to take one.  I always joke that knowing how bad I am at remembering to take medications (or vitamins for that matter), it is fortunate that I have not ever had to take anything for a serious condition or for a long period of time, because I would most definitely be dead.

DC had never been on any kind of medication either until he was 25 and had to start taking seizure medication.

Knowing what I know about myself, I made sure to set alarms in the morning and the evening – not one alarm, but 3 – in case I was involved in something when one went off (like trying to get ready for work) – there would be another 20 minutes later. DC is also in the habit of shutting off my alarm if I am not right there to do it myself. I usually remember on my own, but I keep them set as a safeguard – just in case. He cannot swallow pills; his medication is in liquid form – I can’t dump them out and take a count if I am questioning myself.

A couple of weeks ago after a rather difficult morning – I was convinced that I had given DC his medication twice. I did not remember giving it to him twice but once I get that idea into my head, I can’t let it go.

I was 98% sure that I had not, but ….. to be safe, I called his doctor and waited for him to call back.

When he called back he said that due to the amount of his regular dose, a second dose would not hurt him at all. He might just be very tired and/or drowsy and I should still give him his evening dose.

He was anything but drowsy when he came home from his day program and there were no notes that he had been tired during the day.

So there’s that.

But……. being the queen of overthinking and over-reaction, I felt I just had to come up with a better system.

His medication is in a bin on the stove (we have to use the stove for something, right?).

We have quite a few refrigerator magnets on the refrigerator so I figured I could put a few to use.

About now you might be thinking/wondering why I can’t just write it down when I give him his meds. Easy enough, right?

Well no, because then I would have to find a pen. All pens, no matter where I put them end up in DC”s “It’s Mine” stash. If I wait until “later” to write it down when I get around to finding a pen – I may not ever write it down and then we are in the same boat.

“I’ll do it later. I’ll remember to do it later” never works for me.

Easy solution…..

I took two of the many magnets from the front of the refrigerator and moved them to the stove hood.

On the side of the refrigerator, that is against the stove, I put two clearly marked labels: “Morning” and “Night”.

They will be right in my face when I go to pour and measure his medicine so I can’t miss them.

I was all set to start my “ingenious” system the following morning.

Ten minutes after setting up the magnets on the hood – I walked into the kitchen and they were gone.

I never explained this system to DC because he already takes it upon himself to shut my alarms off, so I did not want to get him involved in this.

Apparently it did not occur to me that DC would see these magnets out of place and need to put them back on the front of the refrigerator.

“DC, you can’t move the magnets. These are for Mom”.

DC: Okay, Mom!

That night Doug was over and I asked him to give DC his meds while he was in the kitchen. I reminded him to move the magnet.

He did.

The next time I went into the kitchen – the “Night” magnet was gone. Doug had moved it but he moved it back to the front of the refrigerator.

sigh…..

Seriously, there are labels. Even if it hadn’t been explained (it had been); this is pretty much self-explanatory.

Before bed, I moved them back to “start” position. I did. I am 100% POSITIVE that I did. No doubt in my mind.

The next morning I went over to the stove for something to find that the “Morning” magnet was moved as if I gave him his meds.

Someone is “messing” with me ……

(or am I really losing my mind?)

I asked DC. First he said yes and then he said no which is pretty standard for him. If he did move it, why just move one? Why didn’t he put them both back on the refrigerator as he did when he thought they were out of place?

I put them back and again told him not to touch the magnets.

“Okay Mom!”

The following morning after the first alarm went off but before the second ….. the same thing. The morning magnet was moved.

“DC, did you move Mom’s magnet?”

“Nooooooo, I didn’t”

I put them back.  When the alarm went off the second time I saw him anxiously pacing, reaching for the magnet, stopping himself and pacing again in front of the stove.

“Mom. You have to move the ‘mag-let'”

As I had never explained all of this to him, I could not understand how he figured out that this all had to do with his medication or why he was getting anxious about moving the “Morning” magnet. From the pacing I figured out that he must have been moving the magnet as  soon as the first alarm went off in the morning and because I told him not to and moved it back, he did not know what to do except to pace.

So I explained that I would move the magnet AFTER he had his medicine.

Then I decided I would let him move the magnet after he has his medication.

Usually I will bring his medication to him where ever he is in the house, but now he stands in front of the stove with me,  takes it right there and moves the magnet when he is done.

But only in the morning.

He does not seem to care about the night dose, the alarm or anything with the exception of reminding me to “Move the Mag-let”.

I guess I will never have to worry about forgetting ever again.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Communication and Deciphering DC

 

 

DC’s way of communicating is oftentimes mentioning a tiny detail that no one at the time found important (but it was important to him).

It is my job to go back in my memory to see if I can remember anything that might connect to what he is trying to tell me.

This one,  turned out was not as difficult as some but it took some thinking and questioning. Knowing that too much questioning will shut him down, I had to do my questioning in limited doses.

Trust me….. no one called him a “jerk”. He made that connection all by himself – which is actually pretty impressive.

I posted this conversation on my facebook page in November:

DC was going over his Thanksgiving Weekend Schedule (as we have done daily over the last week).

He was very excited about everything we have planned.

While describing and jogging his memory of the Holiday Stroll from last year that we’d be attending again this year, DC jumped in with…

“I don’t want to be a jerk”

(I’ve never heard him use that word and I didn’t even know he knew the word until today)

Me: What do you mean?
DC: I’m sorry to the people.
Me: What people? When were you a jerk?
DC: At the fire. I’m sorry to the people – jerk like Gaston.
Me: Did someone say that to you?
DC: I’m sorry to the people at the fire.


He does not seem upset at all, just stating facts and still excited about the weekend.
This is going to take a lot of thinking to decipher. I think I have to concentrate on the times he’s been around a bonfire and work from there.
#Communication

*****

I will confess that I laughed for an entire day about the “jerk” comment.

Later, I asked him again about the “people at the fire”.

He said: I’m sorry to the people.

Me: What people?

DC: Fire……. Hurt Mom’s feelings.

I had a little glimmer of a memory.

I vaguely remembered that we had gone on the North Pole Express before going to the “Holiday Stroll”. By the time we arrived at the stroll, DC was a “little bit” agitated because …… Arrival Anxiety AND he wanted dinner.  Even though we went directly to a restaurant, his agitation was already in full gear. I remember that he said something mean to me – I don’t even remember what it was, but as soon as he said it, he knew that he had hurt my feelings and the “apology tour” began.

This explained “Hurt Mom’s Feelings” but not the fire and “The People”. I was thinking that maybe there was a fireplace in the restaurant? But who were “the people”?

After thinking about it for a while, it all came back to me. He was talking about and combining two different incidents on the same night.

After we left the restaurant, we walked up the street and waited in line for the horse and carriage ride (it was a long wait). After the ride we continued on the stroll where he saw Santa outside of the ice cream store and next, outside of the bank, a musical trio of girls that could not have been more than 14 years old. We stopped to listen for a minute – only a minute because DC decided he would announce loudly, while blocking his ears (while standing only 10 feet from the girls) ……

“No! Stop Music! Want to Go. Stop Playing”

Yes, it was a long day, yes, I got it. I knew it was not about him not liking the way they were playing but I would have to assume that the girls would have no reason to think that it wasn’t about the way they were playing. And, yes there was a bonfire.

bonfire

 

So listen, DC has autism and I understand his reactions BUT everything he does is not because of his autism. I know the difference between him having a hard time because of autism and him manipulating the situation to get what he wants.

We left that area and continued on our way down the sidewalk toward the green for the tree-lighting. I took that opportunity to explain to him that he acted rudely and those girls probably thought that he did not like their playing.

<Insert> Another “Apology Tour”

Having figured all of this out, I asked him where he heard the word “jerk” because I would have expected him to have said “rude” because that was the word I used at the time. Knowing that new words often come from movies that he’s seen, I was not all that surprised when he answered:

“A Christmas Story Live”

Not that “jerk” is a word I would have taught him, or would like him to continue using, BUT it is impressive that he took a word he heard in A Christmas Story Live, related it to Gaston from Beauty and the Beast and THEN related it to his own actions that night.

After laughing to myself all day, I did explain that he was not a “jerk” and that it was not really a nice word to use.

Now…… if anyone can help with this one, I would be eternally grateful:  Snowvee, Miss Snap, Teacher, Good Time ….. Anyone?

*****

This has been a Finish The Sentence Friday Free-For-All –  “share a photo and the story behind it” post, or with a 2018 review, or anything else…… Free For All.

Finish The Sentence Friday – hosted by Kenya at Sporadically Yours and Kristi at Finding Ninee

 

 

 

 

 

 

In The Last Book I Read Star Trek and Autism Meet

This week’s Finish the Sentence Friday prompt is “The Last Book I read was….”.

As I am no longer the avid reader that I once was (the whole “reading glasses” situation is explained below), the last book that I DID read was close to a year ago, now.

The subject matter being two subjects that I can relate to and also very close to my heart; I had no problem getting through it (even with the glasses) and I thought this would be a good opportunity to share my thoughts again.

 

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!

 

Click Image To Purchase

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

 

 

 

***

This has been a Finish The Sentence Friday post. This week’s prompt;  “The last book I read was…”
Finish the Sentence Friday is Hosted by Kristi at Finding Ninee 
and Kenya at Sporadically Yours

Happy Friday!