Cheerios and the Order in Which They Shall Be Eaten

 

DC was always a big fan of Cheerios. He eats them every day for breakfast and sometimes just as a snack.

His ‘weekday’ breakfast consists of dry Cheerios (no milk, ever), a banana (you knew that), an apple, a glass of orange juice and a glass of water.

Over the last few months or so, I noticed he was not finishing his Cheerios. He was handing back the bowl with only a few spoonfuls being eaten.

First I thought that he just decided he no longer liked Cheerios. It would not be the first time that he LOVED something for years and then just stopped eating it.

I got him a different, agreed upon cereal. He liked it but again started handing it back to me after only a few spoonfuls.

I started thinking that there was something wrong with one or more of his teeth and maybe it hurt to chew the cereal. He said “yes” and pointed to his tooth.

I took him to the dentist and they found nothing wrong.

Yes, I know! I asked a leading question and got the answer he thought he should give.  I should know better at this point.

Thinking that maybe he was just becoming impatient with the chewing and just wanted to finish and move on with his morning, or that because he had lost so much weight, he really wasn’t that hungry anymore – I started giving him much smaller portions.

He still handed it back to me after a few bites.

We alternated between the Cheerios that he still insisted that he loved and the Chex that he still said he liked, but he still handed it back to me.

Hmm.

Everyday after he finishes eating the food portion of his breakfast, he takes his juice and water to the other room and finishes it while using his iPad and writing his ‘princess papers’. This is what he has done every single morning for years.

I realized that I was partially correct with my ‘impatience’ assumption when one day I after he handed me his cereal bowl, I moved it to his ‘spot’ in the other room with his iPad and princess papers. He finished it while he was watching/writing.

The other day he handed me his cereal and said “I want to take a break”.

“I want to take a break” was new, usually he says “finished” when he gives me his bowl. I realized that the other issue was that he would not eat his apple or banana until he was finished with his cereal.

WE

EAT

ONE

THING

AT

A

TIME

I told him that it was okay to eat a little cereal and then have some fruit and then go back to the cereal.

He could even have some banana first! (GASP)

He thought that notion was just too hilarious to even consider and I must have been joking.

So I moved his cereal into the other room.

With that gone, he was able to eat his banana.

And with that gone, he moved onto his apple.

Bottom line; he thinks he has to finish one thing before he moves on to another. If he wants to move on to the other before whatever he chose to eat first is gone, it has to be removed from his sight (even if he does still want to finish it) until he has eaten whatever he wants to eat next.

He just can’t have it there in front of him.

And, so….

he ate the rest of his cereal in the other room.

****

Updated (before publishing): Although DC seemed to brush off the talk we had the morning before and ate his cereal in the other room – it must have sunk in later on.

The following morning he showed me his bowl and said:

“I want to take a break”

Me: “Okay”

Instead of handing it to me to remove from his sight, he put the bowl down in front of him and started on his banana!!!!

It did not have to be removed and he went back to it later!

He still announced it as if he needed permission, but he moved on.

Progress!

 

Everything is Related: Star Trek and Geppetto

As you may or may not know, DC, Doug and I are going on a Star Trek Cruise in March.

To make most trips more interesting for DC, I always try to come up with something that he likes and relate it to the thing we are going to do.

(See: The Everything is Related Series)

Now, DC is my child so OF COURSE he knows Star Trek. One of the first signs he learned when he was younger and before he was verbal was the “Live Long and Prosper” sign. He did not understand “Live Long and Prosper” but it was his sign for Mr. Spock.

But still I have tried to find things relate-able to Disney or other movies and characters that he loves just to be sure he is excited.

Other than “the Captain who shall not be named”; who will be there, he does have an affection for, to put it mildly, Nana Visitor strictly from Deep Space 9, no relating necessary in that case.

He loves Levar Burton from Reading Rainbow, but unfortunately, he will not be in attendance.

Whoopie Goldberg, who will not be in attendance is relate-able for DC from Sister Act, the Cheshire Cat in some version of Alice in Wonderland  and a YouTube clip from the View where she is introducing the cast of Shrek the Musical (to the person who posted that clip; you are welcome for the thousands of views).

He has met Robert Picardo more than once so he is definitely recognizable to DC.

Now, he does of course, recognize all of these characters just from all of the series’ playing on our television most of the time. He can tell me which series we are watching and he does know some of the character names. I do always point out which characters will be on the ship when they show up on screen.

I am not worried he will not have a good time.

But…. relating someone to some other character that he knows always brings it over the top for him and I wasn’t having much luck in that area.

Last night we happened to be watching an episode of TNG.

The beginning credits were running. I was not really paying attention when DC said:

Brent Spiner. Not Stromboli in “The Wonderful World of Disney’s Geppetto” (we must always recite the entire title of any movie, book or television series)

When DC tells me that someone is NOT a character, what he is actually telling me is that the actor IS the character; in this case “Stromboli” in the movie he just mentioned but he is not playing that character in this movie or television series we are watching at the time.

DC has been watching his Geppetto DVD … um, excuse me: “The Wonderful World of Disney’s Geppetto” for many years. I had never seen it, but I looked it up and he was correct!

Apparently, DC had not ever recognized him as Data, but he did recognize his name in the credits, because he does know the name of every person that has played or lent their voice to any Disney character.

– But you know that all ready.

Once again, DC did the work for me.

I will have to have him watch more of the credits on the other series. Maybe he can pick out a few more people that he knows.

Suggestions are always welcome.

 

 

Write? Why?

I have been badly neglecting this blog lately so I thought I would post a “refresher” for those who may be new here and to my Facebook page.

Why do I write?

I never really intended to write a blog. My blogging began one day when I was writing an extremely long response to a blog post that I had just finished reading. After I hit “post” I decided that writing a response to this post on someone else’s blog was not going to make me feel better about the topic being discussed. I opened an account, copied and pasted that very long comment, on to a page and started my blog.

I was so worried that I would never have enough to say to sustain a blog, but I went for it anyway. It turns out that I did have a lot to say. I don’t know how many people care to hear what I have to say, but I say it anyway.

It is difficult to explain “his” autism to anyone without resorting to 1000 examples and 1000 stories. So I tell 1000 stories to make clear that there are other sides to autism than the characters seen in TV or movies.

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

I was very tired of being preached at and constantly being told how to feel by those who have not reached this point in their child’s life. I understand where they are coming from and in turn I believe they can or should try to understand where I am coming from. Whatever else you might have to say about me, I  have done a good job of raising DC.  Of course there was help along the way but as a single mother going on 26 years now, most of it fell to me alone.  I truly resent the fact that we, as parents are being made to feel as if after all these years,  we’ve got it all wrong. I know that there are instances where we did have it wrong. When DC was young, there was not any where near the information and services that are available today. (See: Autism In the Old Days

I hope that a little insight into what comes after “school age” may go a long way in getting people to stop and think before making blanket decisions, accusations and statements that may not affect their child the same way it will affect mine. There has got to be some give and take. Everything does not work for every one.

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

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

In an earlier blog I wrote:

“If I were to live forever, I would not change a thing about my son. He’s happy almost all of the time. He loves his life. He is in his own little happy world, but he won’t always be able to live in his own world, he will someday have to live in the real world. Then what?”

He will, someday have to live in the real world without me, which will probably mean a group home, because he is going to out life all of the adults I have in place to take care of him when I am gone. We need better programs, more funding for those programs and we need to have trained people working with our children in those programs. The news reports of the abuse and neglect of adults and children with autism by the people who are paid and supposed to be supporting our kids will keep you awake all night, every night.

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

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

**********

EUReKA with a “sprinkling” of Autism

I normally do not cross-post from our EUReKA site but this episode of the podcast was certainly autism-heavy so I decided to post it here as well.

I have always loved the SyFy Channel original series, EUReKA (obviously) and as I said during our first episode, this would not be a podcast about autism, but…. I was never happy about the way autism was portrayed or treated in the series and when the subject did come up during an episode, we would be talking about it.

(Spoilers)

They introduced an autistic character (a savant) to use for a specific plot line. After that plot line was over, they completely ignored the character to the point where we did not even see him for an entire season. When the character’s mother gave birth to another child and they could no longer ignore the fact that she had another child…. BOOM; they changed the timeline and Kevin was no longer autistic (and never was in the new timeline).

Disappointing to say the least.

So… if you are a EUReKA fan, or a EUReKA fan with autism in your life; give it a listen….

 

 

S4-E2  A New World – Part 1

We went long on this episode due to the poor treatment of autism and a bit of time-travel confusion; so please join Dud Gramley and Vickie to discuss the first half of Season 4, Episode 2,  A New World (part 2 will be published next week)

“The gang returns from 1947 and discover that things are not as they remember them. And Dr. Grant came along.” – IMDB Synopsis

If you are a first time watcher, we suggest that you watch the episode BEFORE listening to this pod cast.

 

To Listen and/or for the links to items discussed in this episode, continue on to: Yeah, That Can’t Be Good – A Eureka Rewatch Podcast

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.