Can you say that again? I missed it the first 40 times.

Knowing full well what I was in for, I took away DC’s computer privileges on Sunday evening for reasons that are not necessary for this story.

He is only allowed to use his computer on the weekends. This rule stemmed from the original rule of watching his DVD’s on weekends only. As he now uses his computer to watch his DVD’s,  the rule was amended to include his laptop. He has an iPad and is allowed to use it daily, which he does. I have not had to make a weekend rule about iPad use… yet. I did, however have to put limits on it.

What is the difference, you might wonder? Watching his DVD’s becomes an obsession to the point where he does not want to do anything else. While on the computer he can have the same scene playing on DVD, Netflix and on YouTube on three different screens and alternate rewinding that scene between the 3 screens. It is rewind heaven! Because he cannot use his DVD’s with it, he has not reached that level of movie watching…err rewinding in multiple windows on the iPad.

Losing his computer on Sunday night meant he would not have the opportunity to use it again until Friday, IF the behavior did not continue.

And so it began…

“Mom, use it on Friday.”

“Mom, I promise never to do it again. I’m sorry! Computer on Friday?”

“Mom, I behaving.

(Repeat, with some variation 122 times)

I explained that we would have to see what happens during the week before I tell him he could have it back on Friday.

Monday morning:

“Mom! I was a good sleeper. Computer on Friday?

Mom! I behave! Yaaayyyyyyyy!”

(Repeat 26 times before breakfast) 

Finally, and with a great deal of apprehension because it was Monday and Monday’s have not been DC’s favorite day, by any means , I told him that we were not going to talk about this any more and if he kept asking, he would certainly not get his computer back on Friday.

With that, DC went upstairs and I waited for the fallout.

Instead, he seemed to take that time to think about it because I heard him reciting a line from one of his Disney shows; “If you live in my house, you have to follow my rules”. This also made me believe that he was actually understanding that he did not follow the rules and I was not just a “Mean Mom”.

It seemed as if we had turned a corner.

I did not hear about it again the rest of the morning.

When he called me in the afternoon to tell me that his transport had arrived and he was “going home nowwww”, there was no mention of “Computer Friday”.
Wow! He got over this one rather quickly.

Yay, me!

He called me again when he arrived home as always. Usually this call as well as the earlier call are scripted; he rarely goes off script – he tells me he is home and tells me what he and his aide are planning to do.

He not only went off script but he went off script rather loudly.

COMPUTER ON FRIDAY!!!!

Me: We’ll see what happens this week.

“Computer on Friday” continued after I got home from work.

Now really what I should have done was taken his computer away on Sunday for the original infraction and if the behavior continued, take it away again for Friday, because we all know that “Maybe” is not a word and “We’ll see”, if it means anything to him, probably leans more towards a “yes” than a “no”. But I was all in now, so I could not back down and change my mind.
(Please understand that even if I had told him at the beginning that he could have his computer back on Friday, all of this would still be happening as he would feel the need to verify that fact; over and over again.)

After answering the same question more than once and reminding him that we were not talking about this now, he decided to change his strategy…

“Mom, Going to Dad’s on Friday and use Dad’s computer?”

Sigh….

Me: No. when you lose your computer privileges, you lose them everywhere.

(Repeat this conversation 5 times)

In my infinite wisdom I thought that if I gave him a specific date and put it on the calendar, I might get a break from the continuous questions.
I marked Thursday on the calendar and told him that I would let him know about “Computer Friday” on Thursday.

“Mom! Come here!” (calling me to the calendar and pointing)

“Thursday to use computer on Friday!”

“Mom will tell me on Thursday. Use computer on Friday.”

“Mom! I am a good <insert eater, sleeper, dresser …..> Thursday to use computer on Friday.”

(Repeat 3,946 times)

You knew that was coming…….

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The “Fitting Room”

 

Watching the third episode of the new Netflix show “Atypical” I was taken aback first by the mother not wanting to take her son to the mall because he had an issue there the last time they went and secondly, once there, actually pointing out all of the noises that I imagine would have normally bothered him but were clearly not bothering him (as he was on a mission) at the time. It was as if she was disappointed that he was not having an issue with any of it.

There are plenty of things that I do like about this show. The mother is not one of them.

DC is not anywhere close to as independent as Sam is so I can not relate to all of it, but I do think that the literal thinking Sam displays and the way a word might get stuck in his head so much so that he has to repeat it over and over are spot on in relation to DC.

As much as I do not like or agree with the mother’s actions, it did give me pause. Am I so overly sensitive about DC and his surroundings that I may possibly be causing a problem just because I think there is going to be a problem? Am I so sure about how he will react in a situation that I am actually causing him to act that way? I do not think that I do. We go many places and put him into many situations and I think that most of the time, we go thinking (hoping) there will NOT be a problem. But who knows? It is certainly something to think about and keep in the back of my mind.

I WAS a bit surprised by his mother calling ahead to a clothing store to let them know that her son needed a quiet environment, no loud music, no crowds and low lights in order to try on clothes in the fitting room.

I was surprised because it would never occur to me to do that. Parents in a different situation than DC and I, may do that and I am not saying that it is right or wrong – it just would not have occurred to me at all.

I have said quite a few times in earlier posts that I do not necessarily look for accommodations for DC. I want him to try first. This does not mean that if the trying does not work out, or I can see that practice is not going to make it easier, I will not look for a better way or an accommodation – I just do not begin that way. Again, that is just me. That is what I am used to. Accommodations were not available or even thought of when DC was growing up so we either did it the way everyone else had to or we would not be able to do it at all.

I will say that like public restrooms and the complete lack of enough “family” restrooms, fitting rooms are a huge cause of stress for me and DC.

Fortunately most of the time I do not have to have DC try on clothes. There have been times when he had either gained or lost weight and I was not sure what size to purchase that he has had to use the fitting room.

He does not like to “try on” clothes at home to begin with, so trying things on in a store does not make him happy. Then we have to contend with the fitting rooms that are rooms with long hallways of stalls where I can not see him once he goes in. I can not see who might be in there with him either.

The first time I had to send him into a fitting room as described above, he was just going in to high school. I was fortunate that there was a room available right in eye-shot of the main door.

I sent him in with four pair of pants and gave him as many instructions as I could. I wanted him to come out WITH THE PANTS ON so I could see if they fit. The first thing he did was come out in his underwear to hand me the pants he was wearing. I hurried him back in and told him to hang his pants up in the room so he could put them back on when he was finished trying on the rest. He tried the on and came out to show me the rest without incident. Then he came out dressed and carrying all of the pants. It was then that I noticed another flaw in my instructions – he had pulled every single tag off all of the pants.

I have to cut all tags out of his clothes at home so why had it not occurred to me that he would pull all of the price tags and size tags out of the clothes before he put them on? I don’t know, but it did not.

Our next adventure in the fitting room was 3 or 4 years ago when he needed a new suit. Again he was able to use a stall in eye-shot of the door. Remembering the lessons learned from that first time, I gave him his instructions before he went in and continued to remind him by calling all of the instructions into the room as he was changing. The customer shopping around near the fitting room found the whole exchange quite amusing – not in a malicious way though; in a “been there – done that” kind of way. Other than being unhappy about having to try on clothes, DC did much better that time.

By far, one of the hardest fitting room experiences was about a year and a half ago when my step-father passed away. It was not DC who needed something to wear (the suit still fits), it was me. I had gained weight and really just alternated between the 3 or 4 pairs of pants that fit me, quite uncomfortably – for work (I would not buy more because buying a bigger size would be admitting defeat). None of these were dressy enough for a funeral so I had no choice. The wake was that night so I only had that day to find something. I had to take DC with me. Not really knowing my size, I knew I would have to try on a lot of pants and in a few different sizes in order to find one item, just one that would fit and that I did not completely hate.

I found the fitting room and – sigh…. it was room with a long a hallway with many many stalls. I was not sure what to do. There was a bench right outside and I sat DC down and told him not to move. I knew he would not go anywhere, but I did not know what he would do if someone came up and asked him why he was sitting outside the ladies dressing room or if someone asked him to move or if someone asked him anything at all. I told him to call me if anyone talked to him. I went in, yelling to him with each step I took. I did not even make it into one of the stalls when I decided I could not do it.

I came back out and decided that I would just have to buy everything and hope there was something there that fit. If there wasn’t, I was done for because there would not be a lot of time to come back and buy a bunch more just to try on. If there was something that fit, I would just have to return the rest another day.

As we were walking towards the front to pay, we happened upon an alcove with a big round couch in the middle and separate fitting rooms all the way around. Better still, the doors did not go all the way up and I could look over the top! DC sat on the couch and I was able to try on everything while still being able to see him and talk to him from less than 5 feet away.

This kind of set up worked out perfectly and would have been just as helpful if DC were the one doing the “trying on”.

“Family fitting rooms” and more of this type of set up would go a long way in helping to take some of the stress out of shopping and trying on clothes for us and our children………

****

The store with this Fitting Room set up is Kohl’s, I do not know if all of their stores are set up this way but I thought that they deserved a mention. 

 

 

 

 

 

alone…

It started this with the morning application of sunscreen and insect repellent. He does not like it but he puts up with it most days. Today is a camp day, but because he works in a greenhouse during the week, the sunscreen and insect repellent is a daily chore and it begins in the spring – every day. I know that he is quite sick of it at this point, but most days he can just put up with it.

This was just one of those mornings that he couldn’t. That is where it started.

I could see it coming. It looked like a Monday morning (Monday Meltdowns). I did not hear “gotta hurry, hurry, hurry” but I heard the way he went up the stairs to put his stuff away.

When he came down, the running back and forth began. I asked him if he wanted to go outside so he’d have more room to run. I figured he would run up and down the front sidewalk as he does on Mondays when he is having a problem.

We went outside where he had more room to get it all out.

I am not going to describe it, only to say that he had himself so worked up that I really was afraid that he would pass out. It scared me.

He finally sat down with me and hugged me – we sat there hugging for a few minutes while he got his breath back and then he was fine.

DC had meltdowns when he was young and in comparison, these may be the same except maybe they just look worse to me because he is so big now. Maybe they are worse. Maybe it is just that I haven’t seen what I would call a meltdown in such a long time until these started again. Maybe it is his seizure meds. He’s been on them 2 years this week (I will be talking to his doctor next week when he has his appointment) – I don’t know.

Doug is DC and Salli’s transport to camp on Thursdays and Fridays and by the time it was time for him to leave, he was fine. He left and that left just me, by myself to get a grip.

I texted Doug to see how drop off went and he said it was fine.

I am off on Fridays for the summer and today I really needed not to sit here and wallow about it by myself. But it is times like these when I realize just how alone I am. I needed someone to talk to, but I needed someone who would not panic or feel uncomfortable if I burst into tears in mid-sentence.

Doug is off as well, so in my text I asked if he wanted to go for coffee. He couldn’t.

There was really no one else I could call. It’s Friday, people work. If they are not working, they can not always just drop what they are doing to listen to me – although I have done just that plenty of times to listen to others.

I even thought about calling my mother, but I know that it is only other people that get to have problems, I do not; I am just “hysterical”.

So…. I got in my car and drove around and cried like an idiot. I did not want to drive too far because I was worried that even though he was fine when he left, he had himself so worked up that I was afraid that something might happen (like a seizure) and I did not want to be farther away from camp in case I had to go and pick him up. Really all I wanted to do was to go to camp and get him for some more hugs, but it is his last day and he was looking forward to “Awards Day” so I did not want to ruin that for him. So I drove and listened to music and it really did not help.

So now I am home, writing this – just to get it out.

Yes, I know this should be about him, not me and that this may read like I am having a pity-party for myself. Maybe I am. Maybe I needed to have my “moment” so I can just move on with today. We should all be allowed to have our moments. Hopefully when you all are having your moments, you have someone to talk to and help you through it….

Here’s hoping, anyway…

****

Thanks for “listening” and not judging my pity-party.

 

 

 

 

 

 

 

Welcome to “Monday Meltdowns”

Mondays are difficult for many of us. Mondays are especially difficult for DC. It does not matter if he had a busy weekend or just sat around. It does not matter if he went to sleep early or late.

It just does not seem to matter.

He wakes up relatively happy every morning – Monday included – and goes about his business. For some reason; and it usually happens right before he is ready to leave – his mood changes quickly and drastically.

He does nothing differently on Monday morning than he does any other morning and I try to be very conscious of what I might say or do. I try not look at him for too long or say anything that will set him off. You know, like when you have to try not to look when your child tries a new food because just the act of looking at him will make him stop eating it. That is how our Monday mornings go. Avert your eyes and don’t say anything.

Everything is done the same way and in the order that he likes to do it.

As careful as I am, if I hear…

“I got to hurry hurry hurry” I know it’s all over.

I never tell him to hurry. I am very careful about that, especially in the morning and even more-so on Mondays. We get up in enough time so that he does not have to rush. I do still have to remind him:

Time to brush your teeth

Time to get dressed …. but I do that every morning.

We always leave enough time for him to “Do the writing” (princess papers) while using his iPad.

When the “hurry, hurry, hurry” rears it’s ugly head as it did this morning, I tell him that he has plenty of time. There is no rush. I have to try but I know that by that time, there is no turning him back.

When his transportation came this morning, DC was in rare form and ran, full speed out to the van. I was willing him with my mind to get in, because if he stops and looks back at me – he will come charging back.

And that is what he did.

He came charging back so fast that I was sure he would not be able to stop; he did stop running before knocking me over but he was not happy.

And so it began…..

I won’t go into details but it was loud, very loud…

After what seemed like an eternity, he calmed himself and started walking slowly back to the van. “Slowly” was good and I was just thinking that this hadn’t been all that bad compared to some Mondays, when he started running full steam again…. to the van and right back to me again…. to fulfill his mission of spreading of autism awareness to the neighborhood.

The driver had gotten out and opened the door while he was waiting for all of this to end, in the hopes that if he did not have to stop to open it, he would get right in. It worked. He went back to the van again and GOT IN.

The van started backing out of the driveway, stopped and pulled back in. DC jumped out and ran full steam back to me again for just a touch more awareness spreading. Finally he started back to the van; walking this time, so I was hopeful. He got in the van – even more hopeful –  and the van drove away. I stood there just in case but it did not pull back in.

I know I will never know what goes on in his mind all of the time but still, it bothers me because I can not figure out what triggers this. What sets him off all of a sudden? For now, I am going to have to go with the fact that NO ONE likes Mondays and this is just the way he reacts to them lately. Mondays were never an issue until the last year or so.

It could be that he is just tired, but then why is he all right most of the morning? I watch and watch but I just do not see what triggers it and why just over the last year or so. Nothing about his day is different.

Yes, I have been mother to my autistic son for 26 years and yes, I know that we sometimes cannot figure out what is going on. I know that….

Knowing that does not stop me from trying to figure it out… It never did and it never will.

****

I normally use my other blog for random face book statuses, but these fit the mood here today:

After a holiday weekend so Tuesday was our Monday:

 

Another Monday holiday, so Tuesday was again our Monday:

When Mondays go well, one begins to worry..

#NotSoBadMonday (a big chunk of ceiling came down in the kitchen right after this next status was posted, so the rule is; if DC doesn’t get me, something else will)

 

 

Monday and Brief Power Outage Combo!

 

Hope you all had a Happy Monday!

Frosting

After having oral surgery and becoming VERY tired of eating soup, I went searching through my refrigerator and cabinets for some more exciting “soft food” when I came across a can of frosting in one of my cabinets.

Why did I have a can of frosting?

Beats me!

My baking skills leave a lot to be desired.

How old was this can of frosting?

Your guess is as good as mine – but in my mind, it fell into the soft food category; so…. okay. Score!

Finding this can of frosting brought me back to when DC was little. I always had a can of frosting in the refrigerator. It was a staple.

I am not a fan of cake, really – but frosting?

“Just the frosting, please.”

Never trust a person who says the cake is delicious but the frosting is just “too sweet”.

Really?

Move away from the cake… just hand it over.

I have it on good authority that THE second best thing for a frosting junkie is access to leftover cake, preferably refrigerated but room temp will do.

Leftover cake in the privacy of your own home gives license to slice (not scrape…. slice) off all of the frosting around the sides and of course the top so there is just a very thin almost just crumb-like layer of cake with the sliced frosting.

Be warned! There will be complaints that you are leaving everyone else with naked cake. What is everyone else supposed to do with a naked cake?

Donate it to the “frosting is TOO sweet” people or throw it away. Who cares?

It’s frosting-less cake.

Nobody wants it, but feel free to let it sit, naked in the refrigerator for a few more days for appearances sake to sort of console yourself into thinking that you left some for somebody else. (You also rendered it useless for those you were so nice to leave it for. But letting it sit there creates the illusion that you do not in any way understand that you have ruined the leftover cake for everyone else)

The frosting that I always had on hand when DC was young and replaced as soon as it was gone, was MY frosting. It was there just for me when I decided a spoonful of frosting was in order. (of course I was much <MUCH> thinner way back then).

Some people keep a stash of chocolate. I kept frosting.

That along with my (MY) own jar of Peanut Butter for those occasions when a spoonful of Peanut Butter was the craving, were always present in my refrigerator. I still hide my own jar of Peanut Butter – because some things do not change.

DC did not know about this frosting that I found in the cabinet, so I declared it, in my head to be mine. My mouth had been ripped to pieces. It had been a week and a half of soup and other foods that I do not like. It had been a week and a half of pain and after all of that time stuck in the house in pain and starving, this is what my life had come to…. total over-the-top excitement about a can of frosting!

But I deserved this frosting.

I only took it out when DC was not in eye shot.

MINE

I felt guilty hiding it from him, but not guilty enough to share it.

It was mine.

Mine, I tell you!

All good things must come to an end….. he caught me.

He wanted some.

Drat!

Not wanting him to pick up the bad habit of eating out of containers or finish the last of it,  I spread some on a few bite size cookies for him.  He was good with that.

It was the tail end of the can so there was just a little bit left for me.

It was the tail end of the can. He knew that, so he would not be looking for more.

It was the tail end of the can and although I thought about it – a lot,  it will not be replaced.

It was the tail end of the can…

I found a can of frosting.

I was excited.

It is gone now.

That is all.