#TBT……. and they cancelled Halloween (part two)

Posted by TakingItAStepAtATime

I re-posted part one last week as a #Tbt when we were in jeopardy of a pretty big storm hitting. It is only fitting to post part two this week.

Here you have it – October re-runs

….and they cancelled Halloween – Part Two

~As you may have read in Part One – during the “Halloween Nor’easter of 2011, we lost power on Saturday night, October 29th~ Now it was Monday.

Monday, morning came. It was Halloween and still no power. I regularly take Halloween off from work, so luckily we did not have anywhere to be. DC had his ‘un-toasted’ toast for breakfast. I realized in my fervor to find coffee the day before, I never had anything to eat (“The Storm Diet” was a ‘terrific’ diet while it lasted) – so I joined DC for some ‘untoasted toast’, went to work again on the ‘*RS Room’ and began mapping out a new coffee hunt.

Before we left on our coffee hunt, DC’s Dad showed up. He delivered a contraption that he made from a car battery. This was, in my opinion THE best thing ever! A place to charge phones, plugs for lights or whatever else I needed to plug in, although the coffee pot did not occur to me at the time, lights for DC, did.

The downside…… he wanted to take DC with him to his house. Now of course I want DC to be somewhere warm, with power, water and without a RS Room, but on the other hand, I don’t ever want DC and I to be separated during any sort of emergency type of situation; I just want him with me, plain and simple.

Now feeling very cut off from the world, I began my ‘coffee quest’ alone. The Dunkin Donuts I found the day before was no longer open. I stopped at a nearby hotel – knowing full well that there were no hotel rooms available in the state, but I was there, so I may as well check it out. I felt silly even asking and of course there was nothing available.

Tonya, Coach and I tried to keep tabs on each other during this whole fiasco, but with my phone not really working, it was difficult. Fortunately, Tonya called while I was still out driving. She called to say that another friend, Pat, had just had her power restored. She had invited us all to come for dinner and trick-or-treating in her neighborhood. Our kids trick-or-treating together has become somewhat of a tradition. No matter how many Halloween parties DC attends and no matter how many different costumes he gets to wear before Halloween, he still wants to wear a costume ON Halloween. I, for one was tired of the stares and comments when out trick-or-treating with an 18, 19, 20-year-old alone. Going out in a group just seems to work out better. I immediately called DC’s Dad and told him he could keep him there for the day, but he needed to be home at 5. He was not going to miss Halloween if I could help it and if Pat had her power back, it wouldn’t be long for us to have our power restored.

I kept myself occupied the rest of the afternoon alternating between working on the RS Room and searching for coffee. Finally DC came home. I got him into his costume while it was still light out. I have to say, we planned this costume well…… “Elf” complete with a snowy background.

DC was happy to see his friends, happy to be celebrating Halloween and happy to be somewhere with power. Pat and her neighbors were happy not to be stuck with all of the Halloween candy they had purchased ahead of time.

Elf, “Gabriella Montez” (from High School Musical), Sly Stallone and Pebbles were ready to hit the road for trick-or-treat. Surprisingly, almost every house was ready for this last-minute Halloween. Trick- or- Treating with snow on the ground was an experience they will not soon forget, I am sure. I will never forget it, for sure.

After covering the neighborhood, carrying full bags of candy, it was time to head home. I was still living under the delusion that this would be over by the time we arrived home that night – it was not. We piled on our “storm wardrobe”, comforters, blankets, etc. and went to sleep. I had to be back at work on Tuesday and when Tuesday morning arrived I still wasn’t sure that there was power at the office, but off we went. Driving to work, I realized that I was preoccupied with hanging branches. This preoccupation lasted for many months after this storm. Even now, when it is windy or stormy, I find myself watching the trees as I am driving.

There was power at the office and DC was able to sit and watch some movies on his laptop. I was just considering bringing him back there that night to sleep in my office, when my mother called. Her power was back so we made plans to go there.

The next two days went pretty much the same as Tuesday. Work, home, check for power, work on RS Room, pack some things and go to Grandma’s before it got dark.

In the morning – stop home, check for power, work on RS Room, go to work with DC. I really have to say that for a child so very afraid of storms, lightning, clouds, thunder and the power going out – he was a real trooper. I was proud of him. It was almost as if he was able to put his fears and the behavior that goes along with those fears on hold for the duration of this storm and aftermath.

On Thursday night at about 8pm, I called my landline – another thing I did regularly when we were out of the house, and the machine picked up! We had power!

My mother wanted us to wait until morning to leave but I could not think of anything else but getting the RS Room working and clean. DC was beside himself yelling, “My powers is back!” (DC-speak; his powers)

Home – RS Room fixed and clean – everything went quickly back to normal.

All but one party was rescheduled – our “cancelled Halloween” had become a weeklong event running into the second week of November.

Best Buddies held their party on the following weekend – Pebbles and Bam Bam attended – with “Gabriella Montez”, and Best Buddy, Steve of course.

Many of the surrounding towns officially cancelled Halloween and rescheduled it for the following week – our town did not. We did receive a flyer in our mailbox from a neighbor with young children asking that the neighborhood join in for an hour-long trick-or-treat on Saturday night. DC and I participated and then headed out to the next town over – where Halloween was officially rescheduled – to visit a friend and celebrate “Fake Halloween”.

We just happened to have one more unused costume set on-hand that we could not let go to waste.

“Yes, Captain Hammer’s here, hair blowing in the breeze. The day needs my saving expertise”*

Because “A man’s gotta do what a man’s gotta do” * (and a Mom too)

I do understand that others had it much worse. My friend Steve had no power for 11 days. 11 Days!!!!! I would have had to just move away at that point. I hoped that because DC had gotten to the point during this whole ordeal where he seemed to be able to put his fears aside, that this new attitude would carry on through to the next storm – it did not.

School had been cancelled throughout this whole power outage. Between hurricane Irene in August and the Halloween nor’easter, all snow days had been used up for the school year and it was only early November.

On the UP side……….. I did loose 5 pounds on the Halloween nor’easter diet and I did get one of those store-bought contraptions from DC’s dad for Christmas that year.

It does have to be charged every few months and each time it comes out, DC gets nervous.

…….

*RS Room – Raw Sewage Room

(*Joss Whedon’s “Dr. Horrible’s Sing-A-Long Blog – 2008)

“No Jim Dear”…. (shhhh… it just may be)

Posted by TakingItAStepAtATime

In an earlier post I wrote about the “Jim Dear” derby hat and how after many years of asking to be “Jim Dear” for Halloween, he decided against it – after I had purchased the hat and picked out a few steampunk suit options to surprise him.

Last night we attended the 50th Anniversary Gala for the summer camp that DC attends. DC loves to wear a suit so he was all for it.
After running up the stairs a good 3 to 4 times to “look in the mirror” and admire his handsome self – he came down wearing the “Jim Dear” Hat!

hmmmm…

He ran back up to look in the mirror a few more times and returned with a moustache request. Much like his beloved Band-Aids, stick-on moustaches are another staple in our household.

I tried to talk him out of it but he insisted.

hmmmmm..

All-righty then, the moustache, it is! I was hoping that he would decide to take it off before we arrived at the party.

He did not.

He wore it a good long time. He received many compliments on his moustache and was very happy with the attention. When we were still at home, he would not tell me who he was supposed to be but as soon as someone at the party asked him if his name was Charlie (Chaplin); he promptly corrected them “No, Jim Dear!”

with Grandma

He did eventually take it off when it started to get itchy more than halfway through the event.

It is October.

He wore the hat.

He added the moustache.

Jim Dear?……………..Yes, this year.

I guess it just had to be his idea.

Good enough for me.

I will take it!

#TBT ….and they cancelled Halloween (Part One)

Posted by TakingItAStepAtATime

It is October 1st and there are storms approaching – Appropriate Post for ‪#‎ThrowbackThursday‬ .

….and they cancelled Halloween (Part One)

(In a recent post, Second Star to the right……. and hang a left, written about our ‘escape’ from hurricane Irene, I mentioned that we were not as lucky a few months later)

It was Friday, October 28, 2011 we were gearing up for a marathon Halloween weekend. Now, I can be a lot of pressure on Halloween, I know this, but my friends seem to put up with it and fortunately DC loves Halloween as much as I do, so the “pressure” is not too much for him; he enjoys it.

On Friday night we met my friend Coach and her daughter, Candy at the haunted mansion. The ‘kids’ looked quite terrified, but they made it through. DC, although he looked like he was about to fall apart, wanted to go again, while Candy decided to sit out the second go-round.

Coach, Candy, DC and I met Doug at a local diner for dinner afterwards. Doug was leaving that night for another leg of his quest to golf in all 50 states. He would be away for more than a week.

After dinner we all went home to get prepared for the 3 party marathon we had scheduled for the following day, one more on Sunday and then of course, Monday was Halloween. Usually the parties are spaced out a little more, but this year they were all crammed into the same weekend. It took a lot of planning costume-wise. The parties were back to back, and DC has grown accustomed to having a different costume for each party and another for Halloween itself (I love this child!!!) so I had to plan the best way for him to make quick changes between each party.

Saturday was a beautiful sunny day. I took this photo at noon outside the house right before we left to meet Tonya and DC’s friend, Salli at their house to begin our marathon.

As soon as we arrived, Tonya told me that her husband, Rick mentioned that the weather people were predicting snow; heavy snow. He warned that it could get really bad out on the roads and there still being leaves on the trees, may make matters worse.

What????

It’s October!

How much snow could we possibly get in October?

(We totally missed the “leaves are still on the trees”, point – What could that possibly have to do with anything?)

We decided that he didn’t know what he was talking about and even if he did – the sun was still partially shining – this probably would not even begin until much later in the day. We were used to the weather people making a mountain out of a mole hill, so we decided to go full speed ahead with our party plans.

It took only 30 minutes to arrive at Camp for the party. The change in the weather in those 30 minutes was drastic!

The snow was really coming down!

Still in denial about all of this….How long could this possibly last – It is October! We went inside and joined the rest of the party-goers that were probably in much denial as we were. It seemed as though everyone that RSVP’d attended and no one left early. It IS October, after all.

We met up with Coach, Candy, Katie and her daughter, Kate (who was dressed as Ariel; this made DC’s day). No one seemed overly concerned about the snow, the party went on as if nothing was going on and we really intended on moving on to the next two parties…..
until we had to get back on the road, that is….

Okay, so maybe we should skip the other parties – they had already been cancelled at this point, we just did not know that.

Katie and Kate witnessed a terrible accident on their way home, but made it home safely. Coach and Candy got home safely as well. We arrived at Tonya’s house to find her son in the driveway, looking at the very large tree branch that had fallen on his car. Okay – got it – “leaves still on the trees” – it finally clicked. Their power was out. Tonya went into panic mode (panic mode is usually my role – Tonya is normally relatively calm about everything) – yelling at everyone to get out of the driveway and out from under the other low-hanging branches. Her son, on the other hand, looked relatively calm about the branch laying on his car. DC and I got into my car which was parked under another very large, now very low-hanging branch and started home.

Okay, allright, I’ll say it…….. Rick was right.

We live only one mile from Tonya’s house but it took us 45 minutes to get home. DC was stimming wildly and scripting loudly about the power – his worst fear – all the way.

We made it home and YES we had power, a little unbelievable as our neighborhood seems to lose power quite often, but we did have power and we were thrilled.

Home safely, WITH power, DC and I went about our normal routine assuming that all of this would be over by morning. Within 45 minutes of our arrival home, the power went out. DC was screaming from the bathroom, I told him to stay there, got a flashlight and went up to get him. I hunted about for more flashlights, got DC’s pillow and blankets and brought them down to the living room. THIS IS THE MOMENT, right here that the “sleeping on the couch” situation began. 3 years later, we are still sleeping on the couch most nights.

It was early but I tried to convince DC to try to go to sleep and the power would surely be back by time we woke up – I really believed that, I really did. Of course I had to stay right there on the other side of the couch, so I tried to get some sleep as well.

We woke up on Sunday morning and still no power. Still convinced it would be back soon, DC had breakfast, under protest. Even though losing power is one of the things he obsesses about, he just can not understand that I can not make toast. He can have bread with Peanut Butter (something he ate everyday for lunch), but it was morning and mornings are for toast, not bread. There was plenty of other non-refrigerated items that he could have, but no, he HAD to have toast. He finally gave in and had some “un-toasted” toast and we set out to find coffee.

My landline was down, my cell was only working sporadically. Most of the time, I had to drive to the center of town to get any reception at all. We kept taking short trips throughout the day in search of coffee. I didn’t want to drive too far as with no information to be had, I never knew what we’d be driving into, but on the other hand I needed coffee and DC needed something to do. He loves to and will read his books for hours, normally, but not during a power outage – he is just much too distracted and upset to do any of the things he normally would do. I have driven him around for hours in the past when we had an outage, but this was different, there was really nowhere to go, trees and branches were still falling and I didn’t want to waste gas. I didn’t know where we would find an open gas station.

It was a very odd and unsettling feeling not really knowing what was going on out there. I felt cut off from the world. Between feeling cut off and my “dropping dead and how long will DC be alone before anyone knows?” obsession – I was not having a good time.

The day was spent, dealing with what I affectionately named the “raw sewage room” -RS Room for short – (Did I forget to mention that DC clogged the toilet the very second that the power went out? Did I forget that?) – and taking quick, not too long trips to find coffee. I did finally find a Dunkin Donuts (because apparently I always do) open at about 4pm. They did not have power and were just about out of everything but coffee was still available. I’m not quite sure why or how they still had relatively hot coffee available with no power and I did not ask; I ordered the bucket size.

At this point, DC was no longer fixated on the power coming back, he was just defeated, very quiet, no emotion, just going through the motions. We got ready for the night to come, I made another attempt at fixing the “RS room’, we read for a while and went to bed. Worried about the cold, I had DC wearing thermal underwear, thermal socks, slippers and his very heavy robe. I began piling blankets and comforters on us and at the point when he had just about enough, he yelled, “Mom! I don’t want to be warm!” – of course he wanted to be warm, but it was his way of telling me that I was putting way too much stuff on him.

Monday, morning came. It was Halloween – and still no power. Halloween was looking grim!

To be continued in “and they cancelled Halloween- Part 2”

A Conversation – “The Training School” revisited

Posted by TakingItAStepAtATime

Recently I wrote a post about a training school. I was a little apprehensive about writing the post because I know my friend Beth has had to place her son in a residential program for behavioral issues and safety. I know that there is a difference between an Institution (as the one in the late 60’s, described in the post) a Group Home and a Residential Program. I know she is trying to do what is best for her son and her family. I also know that she has to endure quite a lot of abuse from other parents about having to place her son in the program. Many treat her as though she is institutionalizing him or locking him away. This is hardly the case. She is trying to do what is best for her child with the minimal supports that are open to her in the rural area where she and her family live.

I know that this is not the situation she was hoping for, but in order to help her son and her family this was the only real choice that she had. She wanted to get the proper help for her son that they could not – try as they might – provide for him. She wants what every parent wants, a chance at a better life for him. This was not a decision she was happy about making, believe me – but she believes that this program is what is best for her son and her family right now. At this moment he needs more help than they can provide at home or in school.

I know that we can not judge other people’s children based on what we know about our own child’s Autism. To use the phrase once again – (I have used it plenty and I wish I knew where it originated) “If you meet one person with Autism, you have met one person with Autism.”

Beth and I had a conversation after I published that piece. Although I understand where she is coming from, she knows full well that many people do not. She agreed to let me use our conversation in the hopes that it may help people understand her situation. It was difficult enough for her family to have to make this decision without enduring the added pressure of other’s opinions.

Beth: “Unfortunately, it is still the only option for many parents to have their kids live elsewhere. If it wasn’t for my son’s aggression and property destruction, he would be living at home.

If there were better supports for people with disabilities to be able to stay in their homes and communities we would not need places like group homes and residential schools. The difference from back then <the time frame from the post> and now is probably the ‘reason’ for the placement. Now, it is usually a last resort after trying to support the person at home or because their needs are many and too complex to be supported at home.

Many people do not make the distinction from the training school/institution that you wrote about to the program my son is in. I have had so many other parents tell me they would never do “that” to their child. There are some horrible group homes and residential programs, not much different than an institution, just in a different location and given another name. There still needs to be a lot of change in providing better public school programs and home supports. We still have a long way to go in properly supporting disabled people in their homes and community. If that were happening we would not have had to outplace him like this”.

Me: Believe me, you were on my mind while I was writing it. You haven’t ‘done” anything to your child, you are doing what you hope is best for him and your family; because the rest of your family should matter as well. I agree, that people still do not make the distinction and there IS a difference, I know that. I wish more people did. I absolutely agree that there should be more home supports and school supports in place even if you do not live where it is convenient for people to get to. I would like to use this conversation in a post. I think the distinction needs to be made and can be made better by someone in your situation.

Beth: “That would be fine. I am doing my best to DE stigmatize the placing of a child in a residential school or group home. That is why I share our experience on Instagram. Too many people live in dangerous and unhealthy situations with their disabled loved one because they fear what will happen when they place them.”

Beth lives in a rural area where the school system could not provide the support that her son needed. They could not get or keep support in the home due to the distance many of the support people would have to travel. Many people are not in the position to pack up and move into an area with better supports in place. They visit him quite often. She is in constant contact with the staff and her son. He comes home for visits as often and for as long as he can handle. The goal here is to get him the help that he needs so he will be able to come home for good one day. To help him manage his anxiety and aggression so that he can come home.

They want him to come home…..

Pit Stop

Posted by TakingItAStepAtATime

A few days ago, DC was ready and waiting for his transportation to arrive to bring him to work. I was getting ready for work as well. The car arrived a little bit earlier than usual with a substitute driver. DC left and I went back to getting ready. Normally I leave for work about 5 minutes after the car leaves, but because it arrived early and I was not completely ready, it took another 15 minutes to get out of the door.

My car was parked in the driveway behind the house so you can not see it from the front of the house. I drove out, rounded the corner and headed up the driveway to find his transportation car at the top of the driveway. My initial reaction was one of panic. I was sure that something was wrong, but the driver was just sitting in the car. Then I noticed that DC was already getting out of the car so my next thought was that he decided he had to use the restroom. I got out of my car and asked what was wrong. The driver told me that he had forgotten his water bottle and was so obsessed about it, she felt she HAD to bring him back to get it. She was hoping that I would still be home. Granted, I am happy that he is so aware of his hydration and so attached to his water bottle. Drinking water was not at the top of his list a few months ago, it was always a battle so I am glad that it has moved up a few rungs on the ladder. Coincidently the one and only time he forgot to bring his water bottle to work since his first seizure (I was at the time convinced it was due to heat), just happened to be the day he had his second seizure – hmmmm. I don’t know if he put that together in his mind or if this is just a straight out ‘regular’ obsession, but he does not want to be without it at work.

Now there have been plenty of times when DC was still in school that he tried to get his school bus drivers to stop so he could run into a random house to use the bathroom. (There have also been times, not so long ago while out for a walk when I had to chase him as he was running up some strangers sidewalk towards the door because he decided that he had to use the restroom). I know how he can be when he forgets something as well. The driver said he kept poking her on her shoulder from the back seat. I get it. But, his school bus drivers, when they knew they had to bring him back home, would always call me to see if I was still home or if I could turn around and come back to meet him. This driver did not try to call and was making no attempt to even get out of the car. I wonder just how, from the driver’s seat with the car running was she going to check to see if I was home? You can not see my car from the front. She did not get out of the car – she just let him out and as I said, under normal circumstances, I would have been gone.

Hopefully in the future someone will call me – yes, I made that clear – very clear.

So how would this particular scenario have played out had I not have been there, you ask? I know exactly how it would have gone.

– DC would have let himself into the house to get his water bottle.

– DC would have left the front door wide open upon exiting the house and returning to the car; prompting the driver to ask if Mom was home. (He never closes the door on the way out, only on the way in – I do not know why.)

– “Yes”, would have been the response – his standard reply to almost any question.

– Driver would have driven away leaving my front door not only unlocked but wide open all day.

– Later that afternoon – assuming all of my possessions were still in the house , his after-work aide would have called to inform me that he found the front door wide open.

– Me, never knowing or hearing about the forgotten water bottle retrieval mission that morning from DC or anyone else, would have assumed that I had forgotten to close the door (even though I distinctly remembered doing it).

– Adding further fuel to the notion that I am losing my mind.

*****

Just an FYI – DC is 24. After years and years of training (a topic for another post) he is and has been able to get into the house himself after work. He has either me or staff there but there may be times when someone might be stuck in traffic or late for some other reason and before he had staff, I was always in a race with the bus. I wanted him to be able to get in, lock the door, call me and wait for me or his aide. Since he began having seizures, I do not want him alone for even a few minutes. My point here is – you don’t bring him home with out calling me or letting me know.

“Jim Dear?” – Not this year….

Posted by TakingItAStepAtATime

So Halloween is upon us. It is already September and we are a little bit behind schedule this year. We usually have our costumes chosen and purchased in August. We did pick out our “official” Halloween night costumes way back in April or May so we are not 100% behind, but we are still behind. There are plenty of parties to attend for which DC must have different costumes (gotta love this boy!).

Okay maybe we like Halloween just a little teeny tiny bit -but we’re not obsessed or anything….

Last week we discussed what party costumes he wanted to wear this ‘Holiday’ season. This is always a little bit of a challenge. At times the costumes that DC requests are just people that he likes who happen to be wearing regular everyday clothing, or it is an obscure character that nobody knows but him (he might get that from me). Most of the time there is no such costume available so my mission is to come up with something or make up something that at least in his mind, makes the point.

The one costume that continues to make the list from the time DC was very young is “Jim Dear” from Lady and the Tramp.

(sigh….) A man in a suit…..

Not my idea of a Halloween costume, but – this is not about me….

……not ALL about be, anyway.

But, this year I was prepared.

Last October we attended a fundraiser/gala with Tony Orlando. The gala had a 1940’s theme. It was not a costume party, it was a theme, but in keeping with DC’s love of costumes, I bought him a 40’s style hat to wear with his suit. There was also the added incentive to get him excited about going to the event of calling the hat and suit a costume. While I was shopping for said hat, I came across a derby style hat that closely resembles the hat that “Jim Dear” wears. I purchased that to save for this year.

While looking for items to make a “Timekeeper – Spy Kids – All The Time in the World” (yes, we must use the proper and entire title) costume last year I came across a tremendous amount of steampunk costumes. I discovered them too late for last years’ costumes (they had already been chosen and we can’t mess around with the costume line-up) but I knew that they would be a great option for this year.

2015 would finally be the year of “Jim Dear”.

I had everything ready when we sat down to choose his costumes. I had a choice of two suits up on the screen, I had a few options for “Lady” stuffed animals for him to carry. I even found a “Tramp”…. and I had the hat. I was excited because I knew that he would be so excited when he saw that one of his costumes would be “Jim Dear”. I saved the surprise costume for last.

He chose a Disney Character – surprise! He also chose a character from a television show – whoo hoo! – a current television show – bigger whoo hoo! When we had only one more to pick, I started to wonder why he hadn’t yet brought up “Jim Dear”. I thought he may have been so overwhelmed by looking at all of the other costumes that it had just slipped his mind, so I opened up the windows that I had saved, expecting him to be over the moon….

He said “No! No, Jim Dear!”

What ?!?

“No, Jim Dear!”

I asked him again just to be sure he was not confused, I showed him the hat that I already bought. I showed him the photos of the suits and stuffed animals – “NO! Jim Dear!”

sigh…….

Anyone in need of a black derby hat complete with decorative feather?

– in great condition – never been worn….

“Funny Friday” Night

Posted by TakingItAStepAtATime

Jokes…… not really a concept that DC understands most of the time. There are things that he finds funny when he is watching a movie or reading a book and physical comedy, of course is very funny to him – but to tell a joke and understand why it is funny is not always in his realm of understanding. He is very literal and jokes are oftentimes very abstract. Not to say that he does not spend a good part of his time laughing – he does. I rarely know what he is laughing at and he, for the most part can not explain just what is so funny. It is just the things that are going on in his head.

There are times when he does surprise me…

As I am sitting here listening to him laugh at a scene from “The Big Comfy Couch” on YouTube – the same scene over and over and over again – and I am reminded of a time that he not only surprised me but his teachers as well.

Below is a post from two years ago about a that day. Since we seem to be having a funny Friday night here (over and over and over again), I decided it was as good a time as any to re-post……

******

“Funny Friday”

For the two years after “Graduation” DC attended a transition program through the school system at a local college.

I was visiting the school for a class event, one Friday afternoon and his teacher, “Mr. Disney” (as DC calls him) excitedly came over to me and asked “Did you help him with his jokes today?” Not knowing what he was talking about, I said “No, what jokes?” One of the IA’s (“Para’s” to some of you) chimed in to tell me that he had told 3 jokes for “Funny Friday” that morning.

Mr. Disney went on to tell me that every Friday is “Funny Friday” and all of the students tell their favorite jokes at the morning meeting.

Okay…. Let’s pause here for a moment……

I don’t know how long (or if ever) it will take before anyone will understand that HE IS NOT GOING TO COME HOME AND TELL ME THESE THINGS! If someone else does not tell me, I am not going to know. If I had known about “Funny Friday” I would have helped him with some jokes, but unfortunately I was never told.

I was surprised that he actually TOLD a joke because DC’s idea of a joke – and it’s always the same – is:

“Ha, Ha, Ha! Funny Joke!”

Me: “What’s the joke, Bud?”

“Monster!”

(Insert “cricket” sound here – that is it)

They proceeded to tell me the jokes he told that morning. He told them properly complete with a bow and…. they were actually funny – real jokes!

“Why did Bo Peep pour chocolate on her sheep?”

“She wanted a chocolate BAAAAAAAAR”

“Why can’t Cinderella play Soccer?”

“Because she ran away from the ball”

“What do they call a Fairy that doesn’t take a bath for a month?”

“Stinker-Bell”

He told honest – to – goodness JOKES! After years of “Monster”, he actually told, not one joke, but three and UNDERSTOOD why they were funny!

Later, I ran into the Interim Dean of Health Sciences, of the college who couldn’t wait to tell me about the three jokes that DC shared that morning. Everyone was very impressed, to say the least!

Still I had no idea where he found these jokes.

About a week later, “Mr. Disney” finally got DC to tell him where he found his material.

Actually, he showed him……

After asking him all week, DC went to the computer, typed “Disney jokes” in the search engine and found a web-site full of Disney jokes.

He memorized them and had them ready for “Funny Friday”!

He was able to figure out on his own that “Monster” wasn’t cutting it for “Funny Friday” and he needed better jokes. He went about finding them himself, remembered them and had them ready for Friday!

“Monster” ?? Still his favorite joke.

(Graduation – I do not know what it is like everywhere else, but here school-age for SPED is 3 to 21 years. DC “graduated” from the High School after spending 4 years there. Having two years left of school, after his senior year – the options were to let him stay at the High School or to have him outplaced into an appropriate transition program. Fortunately the town put together this transition program right before DC was ready to graduate.)

No No No….. “Green” Peanut Butter Only!

Posted by TakingItAStepAtATime

The other day Doug called before he came over; he was stopping at the grocery store and asked if I needed anything. I do not like going to this particular grocery store and avoid it all costs…. but it is unfortunately the only store that I can find that sells Teddie Peanut Butter – All Natural – No Salt Added. Now there are plenty of places that sell Teddie All Natural, but the “no salt added” is not easy to find. At one point in time, I was ordering it on line directly from Teddie. Since he was offering, I asked him to pick up a few jars.

He brought them over and put them on the Peanut Butter shelf, upside-down in the cabinet. DC was relieved because he had already told me many times that day that we were out of Peanut Butter – many times… so many times that I was sure I would be presented with one of his shopping lists at some point during the day.

The following morning he asked for the peanut butter. He already had his bagel toasting when I opened one of the new jars and saw that it was chunky – Super Chunky to be specific.

All together now…….

OH NO!

He saw it and I saw that look of panic come over his face immediately. I pulled out another jar – Super Chunky as well! Only one more jar to go…….. it was creamy! PHEW! Breakfast was saved!

I really do not know why he will not eat chunky. He loves peanut butter, he’ll eat peanuts – but he will not eat chunky peanut butter.

I remember once, back when DC was probably six years old, when peanut butter was the only thing he would eat for lunch. I went to make him a peanut butter sandwich and discovered that I had mistakenly bought chunky peanut butter. At this point, he had never had chunky so I decided that I would give it a try. I thought since his love for peanut butter is second only to my own that he would get past the chunks and eventually eat it.

DC was non-verbal at the time and just kept signing “No” and “Green”. I had no idea in the world what he was trying to tell me. He then proceeded to pick every piece of peanut out of his sandwich, all the while signing “green”. Removing the peanuts did not really work all that well, but it did make a huge mess – so don’t try this at home.

… and I never did figure out what “green” meant that day.

When we went grocery shopping the next day, I had completely forgotten about “green” and what it may have meant. While we were in the peanut butter aisle, DC again started signing “green”. Finally, apparently disgusted with me, he reached for the peanut butter (this was back in our “Skippy” or “Jiff” days). It was only then that I realized that the creamy had a green cap, while the chunky was blue.

How had he noticed that when I never had? He didn’t speak and honestly never seemed to be paying attention to most of what was going on around him if it was not directed specifically towards him. Apparently he was paying attention to so much more than I was giving him credit for at the time, and he was/is definitely serious about his peanut butter.

A chip off the old block…

“I am so proud of ME!!!”

Posted by TakingItAStepAtATime

I promise that you all will not have to read about every single test DC has to take but this one was a huge accomplishment for him – HUGE!

A year ago…. even a couple of months ago, I would never have attempted an MRI with out the benefit of sedation (his, but these days it might be beneficial for me too 🙂 ). Never! It just would not even have been a consideration.

He has been through so many appointments and tests lately that I was really hoping that he was just getting used to it and maybe, possibly he would be able to cooperate. I mean he had blood drawn – that was major. Even the EEG was quite the accomplishment for him. Knowing now just how long all of these tests take to schedule to begin with, I did not want to wait the extra week or two or three for an appointment to sedate.

I talked to him about it the entire week before the test. I showed him pictures, I showed him videos. I explained that he had to do nothing else but stay still. There was nothing that was going to hurt or pinch. They were going to take pictures of his head while he was inside the machine. I have only had one MRI myself, for my arm/shoulder. It wasn’t fun but it only took about 20 minutes, so I was hoping that after all he had already been through he would be able to manage it.

We arrived at the hospital in the morning. Grandma and DC read a book while I filled out pages of paperwork. He did not seem nervous at all.

He started getting anxious as soon as the nurse came to say that they would be calling him in shortly. Lisa, our “guide” for the test, came to get us. We went into another room to answer more questions. DC was now moving into “close to extreme anxiety mode” and I am sure that Lisa was now concerned that he was not going to be able to do this. This is when she told me that there would be an IV involved………

Lovely – now I am a big fat liar. No one told me about this. I never had any sort of IV when I had my MRI. Maybe I was supposed to know this but seriously, up until a few months ago neither DC or I have never really ever had to have any kind of tests like this so I really had no idea. Of course I have had blood work and the one MRI and maybe an x-ray or two , but other than that there has been nothing for either of us.

Just so DC would not think I had lied to him and because whatever the consequences, I always tell him the truth and what is going to happen – I explained that he would have to have an IV in his arm, not like the needle they used when they took blood but just a little poke like when he was in the ambulance. I told him that I was sorry I didn’t tell him before but I didn’t know. No one told me. He seemed all right with that explanation but I could see he was getting even more nervous. She told me that they would take pictures for 30 minutes, bring him out to give him the IV for the last 10 minutes of the MRI.

40 MINUTES!!!! Now I was absolutely sure we were done. I was positive this was not going to work. She told me the worse case scenario if he tried and just could not stay still that long would be “conscious sedation”, but…. we would have to make a new appointment and come back another day.

Thankfully, he did not have to change out of his clothes because that would just be something else for him to obsess about. He did have to remove his glasses – not happy. I was able to go into the room with him and hold his hand. It was torture standing there watching him. He had a difficult time staying still, but he was still enough through enough of the test that they were able to get what they needed. At one point I did make them stop and take him out. I could see he was getting more and more agitated. I didn’t want him to get to the point where he would not go back in. They attached a mirror to the helmet/bracket that was holding his head in place so that he could see me. That seemed to help a great deal. He was able to go back in and finish the first 30 minutes.

They brought him out for the IV. This was a bit difficult. He of course got very anxious and was struggling. I laid across his free arm and the two techs held his other arm. They managed to get the IV in and just when I thought we were free and clear, they determined that it wasn’t working. They had to do it again, this time in his hand. I think the tech was more upset than I was about having to stick him again.

DC and I sang a few rounds of “They Call Me Sir DC the Brave” (luckily I had learned the words from the last test) all the while thinking that this was definitely the end of the road. He was not going to stand for this. They managed to get the IV in before he even noticed and he was good to go. He did give us a few fake “Ouch” Ouches when he realized it was already in – just for good measure.

Amazingly enough he finished the last 10 minutes and it was over. He was so happy and proud of himself.

After he got his glasses back “I can see, I can see!” – our first order of business was to take this brave guy for wings – correction…. our first order of business was to cut off the hospital wrist band. We can not wear that a second longer than necessary.

On our way to the restaurant I gave him the phone so he could call Doug. In his loudest – highest pitched voice, he screamed into the phone “I did it, I did it! I am so proud of me!!!!”

He continued to yell with excitement during lunch and all of the way home where he fell asleep immediately after telling me “I am not tired!”

A few days later he received a Certificate of Bravery in the mail from his aunt. She was proud of him too and he was thrilled. There is nothing DC loves more than to have everyone to tell him over and over again just how proud they are of him!