DC had to go for blood work today. He has never had to have blood drawn before. They did take blood in the ER after his first seizure but he was so “out of it” that he did not give them a problem about it at all.
DC has always been very healthy so his doctor and I had decided to put off blood tests unless it was necessary because having blood drawn would entail making an appointment at the hospital to have him put out – an all day affair. He is big and he is strong. Even when he was younger and had to have a vaccination, I had to bring reinforcements to the Doctor’s office. Most of the time we had, his Dad, Doug, me, the assistant and the doctor in the examination room. No one could hold him, no one. It was exhausting and even with all of us trying to hold on to him, the doctor would eventually have to resort to chasing him around the room until she had a semi-good shot at sticking him. I often wondered if he ever actually got everything that was in the needle.
Well, we could put if off no longer. Due to his seizures and medications, he had to have blood drawn. He did let the paramedics put an IV in during his second ride to the hospital and he was much more alert that time. Hoping that he remembered this, I decided we would try to go to a regular lab. I talked to him and explained what they were going to do. I also explained that if he did not let them take the blood at the lab we would have to go to the hospital to have it done. He did NOT want to go to the hospital again.
He was all right until we got to the waiting room at the lab. He was in full-on anxiety mode – yelling “I do believe in fairies, I do believe in fairies, I do believe in fairies.”,jumping up, yelling and making his noises quite loudly.
We got him into the drawing room and into the chair and at this point he had calmed down enough that I really thought we would be able to do this – until he saw the needle.
Let the battle begin.
The technician called for back up and fortunately Doug had come with me as reinforcement. Still no one could hold him. It had gotten to the point where as great as the staff was, I knew they could not do this much longer. They gave it one last try with Doug actually laying across his free arm and all of us holding the “needle arm”. As soon as he saw the needle go in he stopped fighting and let them finish. Sometimes the anticipation is worse than the actual event.
He was fine. He was proud of himself. “I did it! I did it!”
When we walked out of the room all eyes were on us from the now very crowded waiting room. I am sure they wanted to see who had been causing all of that commotion. I could not care less. He did it and that was all that mattered. DC, with a wave and a smile yelled “Good-bye Ladies” as if nothing happened – and we were off.
In the car on the way to breakfast before heading to work, DC was so proud and not wanting us to forget it, began singing a song. I recognized it from when he was young, but I hadn’t heard it in years. I could not even remember where it came from:
(his name has been muted out of the video)
(A reenactment, of course)
“They call me sir DC, the brave,
and history someday will rave
I’m valiant and daring, and noble of bearing
Courageous and gallant, a mountain of talent.
No wonder folks curtsey and wave
I’m Robin, Sir DC, the brave.”
Later I asked him what movie he remembered that song is from.
It has been another one of “those” weeks. A “fluff” piece usually goes hand-in-hand with one of “those” weeks (lately, anyway).
Below are some “short stories” (statuses) that have been posted on my own and my public Facebook pages – too short to qualify for a blog post, although many have turned out to be the inspiration for an official blog post. You may have seen a few of these before, probably not all though.
Well, DC got on the bus this morning wearing a 4 inch witch nose – he’s in the spirit!
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Today the bus driver will be entertained by a flashing Rudolf nose.
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…… and who thought an electronic mega-phone complete with siren was a good idea for Christmas?
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I was required to have a conversation on the “banana phone” with the Fairy Godmother before he would eat the banana –
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“Merry Happy Christmas Eve, Mom”
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Lesson of the week: Using the phrase “let’s head out” when taking DC to the bookstore, means that “let’s head out” ALWAYS means he’s going to the bookstore #ThingsIShouldKnowByNow
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Well he’s heard the “T & L “ words on the weather . It is official. There will be NO outdoor activities for us today
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“Mom, the glasses are bothering you”. (Translation: I bought new cheaters, they are different, he can’t stand it. They are bothering HIM.) But…. he’s not trying to take them off my face as he used to. #Progress
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DC is shaving – getting ready for the Prom, scaring the life out of me w/ the razor. Finally he turns to me & says “Mom, are you still here?” #IGuessThatsMyCue
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Doug after sitting through 23 coffee-house acts at DC’s Arc activity. I guess we’ll be skipping this activity the next time around.
“Mom, how are you feeling?”
(Me) “I am fine, how are you feeling?”
“I am perfectly ‘nis-able’ ” ~ Even Stevens – Influenza the Musical
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DC just informed me that he needs to get his “beauty rest”
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Going to have lunch today with DC at his “job”. He’s excited because he knows he will be able to have a cheeseburger……. Should I be upset that I don’t rate as highly as a cheeseburger?
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So after I wiped out on my walk with DC today, I asked him “what would you do if mom couldn’t get up?” He answered w/out hesitation “call 911” (after he stopped laughing, of course)#Progress
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We went to the Ren Faire to see my brother’s show. DC loved it but yelled out in mid-performance “Oh no! *Bill, are you okay?” He was very concerned about the welfare of *Bill and *Uncle ‘Scamp’ and the bed of nails. Although not as concerned about the man actually laying ON the bed of nails…..
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DC picked up the word “sympathy” from one of his books last night & figured out it means “sorry”. So now he’s “in sympathy” for sneaking chips yesterday
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DC: “Annette ‘Fun – Tree – O’ in Babes In Toyland, my favorite movie” (Me: Worst Movie Ever …. Seriously ….)
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We had our IP (The “E” is dropped post-school age) meeting this morning at DC’s program. The first with his new case worker. One of the first sentences out of my normally agreeable son was “I don’t like this stupid meeting!”
1. I’m the Mother so I can not laugh (but I think I may have anyway)
2. I couldn’t agree with him more……
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It’s a New Years Eve, Eve miracle! DC is eating PASTA!
PASTA! And about 10 meatballs, but…..PASTA!
I was on the phone with an automated system that was not cooperating. DC was making a lot of noise behind me. I told him that he had to be quieter while I was on the phone. I suppose he did not trust himself to keep the noise down because when I turned around, he had applied a Band-Aid over his mouth! Band-Aid 101 – other uses.
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“Band-aide 101 – other uses” When I told him that his sound machine was too loud; this was the fix he came up with.
Happy Sunday!
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But then, of course there are the “regular” uses #HeJustLikesBandAids
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DC: “Mom, my leg is killing me.” (there was nothing wrong with his leg, I checked)
Me: “What happened to your leg?”
DC:”I broke my leg.”
Me: “How did you break your leg?”
DC: “Tree branch. Ouch!” (we are in the house)…
The lengths that he will go, to plaster himself in band-aids.
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DC doing his best impersonation of Nick from Top Chef 11 – ‘Don’t Touch my pots!”
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DC insisted on putting his Dr. Who WINTER hat into his backpack this morning. I asked him why, he wouldn’t or couldn’t tell me. I pointed out that he has a baseball cap in his backpack for the sun. It didn’t matter. So here’s hoping he won’t be walking around the greenhouse on this beautiful, sunny spring day in a T-shirt and a winter hat. #PickYourBattles #WhoviansUnite
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DC and his Winter Guard Team went to perform at an Ice Cream Social Fundraiser tonight. In the warm-up room before the show, he and his team were lined up getting their last-minute directions from their Director. DC waving/raising his hand during her speech….. “Excuse me! I’m waiting for Ice Cream”.
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DC presented me with his shopping list for tomorrow. “bandes” – band-aids – and no, he is not sick of butter – he wants butter but in stick form (he doesn’t like the tubs😃)
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DC woke up in a fabulous mood this morning. “Good Morning Starshine. The earth says hello “ (lol, Charlie and the Chocolate Factory or Hair – take your pick) #DisneylandParis
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DC and Doug decided to go on “Indiana Jones Temple of Peril” in the rain…. Go figure #DisneylandParis meets #MrNoStormToday . Apparently rain is not as frightening at Disneyland
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A cape…. Because proper attire is a necessity while watching you-tube (and you never know when you may have to save the world)
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Me: Hi, DC. Is Mrs. H there yet? (I knew she wasn’t, but would be there in seconds – but still I like to try to get the correct replies)
DC: No.
Me: Did you lock the door?
DC: Yes
Me: Did you lock the door?
DC: No.
Me: Please go and lock the door. You are supposed to lock the door as soon as you come home.
DC: Okay
Me: Don’t hang up! (He does not understand that he can just put the phone down, lock the door and come back)
“Someone” may have just realized that he might be in a little bit of trouble tonight….
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DC was having an “issue” tonight at the time his Best Buddy, Steve called to say hello.
Steve understands, but I did tell DC that he was very rude to Steve.
DC went straight into “note-writing” mode and presented me with this note. We did text it right over to Steve.
***
It’s pouring.. POURING! DC was ready at the door wearing his raincoat (Me? No. I wasn’t going outside yet). When the car arrived, he ran out and I stood in the door as always. I saw him flagging we to the car, which he never does. Thinking something was wrong and not wanting to waste time looking for my umbrella, I ran to the car as I was. Opening the door, DC said “Mom! It’s raining! Sorry!” (of course he let me stand there in the pouring rain for a little while before he came out with that) … Happy Tuesday!
*Some names have been changed to protect the innocent
Recently and jokingly I made the comment on an Autism-Mom post that my next post would very likely be titled “Bummer Summer” – I was serious about the fact that it has really been a bummer summer, with one thing after another, but really not serious about the post. I really should know by now, never to joke…….
I have mentioned once or twice before that DC attends a summer camp for special needs children and adults. He has attended since he was 5 years old. He loves it there.
DC really enjoys the after-camp program. There are only 10 to 12 campers that attend the program by invitation only – first they have to be old enough and secondly have to be able to tolerate not only being at camp all day from 9 to 3 but staying on after camp until 8pm. That is a long day for many campers. Because it is such a small group, they do try to rotate the invitees for each session. When DC was finally old enough to be invited to stay, I’m guessing at 12 or 13, he was thrilled. At the time, DC enjoyed doing many things but he would always opt to stay home if given the choice. He would never ask to go anywhere. After he attended that first time, he actually asked me when he could go back. That was HUGE!
I am not one to ever ask for favors or special treatment, but he was asking me to go back! I called the director and asked if there was any way that DC could attend once a week, every week. I didn’t want to take anyone’s spot but… this was HUGE! The director at the time, understood (DC had attended camp long enough for her to also know that this was HUGE) and agreed. He attended once a week until he left school and started his job. Now that he is working and not able to attend camp daily, he has been attending the after-camp program twice a week, all summer, every summer.
The after-camp program comes to an end a week before the daily camping season ends. Thursday night was his last after-camp program for this summer. Last week was Christmas week at camp, this week was New Years Eve. He was excited.
At about 5:30 my phone rang. I saw the camp number on the caller ID. My heart stopped. I just knew. DC was having a seizure. *Tam the program director had already called 911. I could tell he was shaken (he really likes DC and the feeling is mutual) but he kept his cool as I was panicking. Camp is a good 1/2 hour away without traffic and he didn’t know what hospital they would be transporting him to because the ambulance had not arrived yet. Doug, who only lives 2 minutes away came and we headed in the direction of camp and the two hospitals closest to camp. Tam called back when the ambulance arrived to let me know which hospital they would be bringing him to.
As luck (seriously someone is watching out for this boy) would have it, a former camp employee, *Kim happened to be there visiting. Kim was DC’s group leader for many years at camp – many, many years. He knows him well. He even worked as an IA (“Para Professional” to some of you) at DC’s transition program at the college. Kim, now a LPN knew exactly what to do. I’m sure Tam would have been able to handle it, we had discussed it after DC’s first seizure, but it is always easier to have that extra pair of hands.
Kim rode in the ambulance with DC. I was in constant contact with Tam, relaying information back and forth. We somehow arrived at the hospital before the ambulance. Kim stayed with us the entire time.
The actual seizure lasted about 3 minutes, but he seemed to come out of it much more quickly this time. He was back to his old self long before we left the hospital.
I know that there are plenty of people who deal with this kind of thing or worse every day, but all of this is very new to me, so yes, I am freaking out, so please bear with me if I bring it up every once in a while. DC has been so healthy all of his life. He’s never been on any kind of medication other than the occasional antibiotics. Now at 24 he has had two seizures in a 7 week period of time. I am having trouble wrapping my head around all of this, while still trying not to make him nervous about it.
Like the last time, DC does not seem to remember the seizure. He thinks he was in the ‘Hos- a- bul’ because he ‘fell down’. After we were discharged, we drove Kim back to his car at camp. Tam and the after-camp staff were still there waiting in the parking lot. Tam had saved some of the New Years pizza DC didn’t get to have for him. This certainly helped to take away some of the sting of missing his last after-camp day.
I am grateful for all of these people. I can’t say enough about the care and compassion they showed DC. If this had to happen again, I am thankful that it happened while he was with staff and volunteers that knew just what to do, didn’t scare him and above all, made him feel comfortable. I can’t say enough about all of them. Tam even thought to send one of DC’s favorite Disney books with him so he had something to read at the hospital.
What does it say about this camp that even former employees love the place so much that they come back to visit ‘their campers’ as often as they can? Once one becomes involved in camp, one is always involved with camp. This place never leaves them. The camp and the campers stay in their hearts forever. This is not just me gushing, this is a fact. Many of the staff started as volunteers when they were 12 or 13 years old, stayed on through high school and through college. Many have become Special Education teachers directly due to their time spent at camp and many continue to work there during the summer. That says a lot about the camp, the campers and the people that love it enough to come back every year for 10, 15, 20 30+ years. Imagine 12 – 15 year old kids, not just a few but 15 or 20 who volunteer to spend their entire summer, every summer working at camp. I am always just blown away by that.
During the course of the evening while listening to all of our conversations, DC realized that he would not be able to attend camp the following day. Our day would be filled with – resting, filling his prescription, calling and possibly seeing the doctor, finding a neurologist and with any luck, getting an appointment.
He was not happy that he would not be going to camp on Friday, not happy at all! He was so angry that on the way home he stated point blank and angrily “Never falling down again!”
We never have soda at home. I don’t buy it unless I am having people over. I do buy sparkling water for myself, but not soda. Even though I do not buy soda, DC seems to drink more soda than the average person. We do go out to eat often and I usually do let him get soda in the restaurant. The problem; they seem to just grab his glass and refill it so quickly that before I even realize, he has had 3 large glasses of soda in one sitting – he drinks it that fast. Add that to the parties, picnics and other events or activities where soda is always available…….. and he has been drinking far too much soda.
As you may or may not know, DC had a seizure over a month ago. It took a ridiculous amount of time, in my opinion to get his EEG scheduled and more of a ridiculous amount of time waiting for the results. While doing all of this waiting for the tests and the results of said tests, I had convinced myself that the severe heat on that day was partially, if not entirely the cause of this seizure.
Well the results are in. CAT Scan – Clear (we did already know that from the ER), Blood work – Clear, EEG – Clear. I am told that all this means is that there was no seizure activity at the time of the EEG, which of course does not mean he will not have another, but it also does not mean he will have another……. Ba Dum Bump…. I believe I am now in the exact place I was when all of this started. Don’t you just love that?
Moving forward and armed with this wealth of information <sarcasm>, I am still of the mind, that this seizure was due to the heat combined with the stress of the rest of the day. I have stressed to everyone concerned how important it is to keep him hydrated, especially because he works outside and in a greenhouse. He has never been a big water drinker. I do give him water all of the time but unless he drinks it standing right in front of me, I never know if he’s actually drinking it or drinking enough.
I had already put the kibosh on soda when he has hot lunch at work a while back and I am happy to say that he has been following that rule. He is ordering it AND actually drinking it. Ordering coke has become habit to him when we are out so I really thought this transition would be difficult and I really wasn’t sure he would follow through when I wasn’t with him.
I have noticed that the last few times when he has been out with me, he has ordered water instead of soda without hesitation and without looking to me to remind him first.
A few weeks back when I went to pick him and his friend up from a camp activity where I know they have soda with their dinner, the program director and the other staff told me that they were all shocked that DC insisted on having water with his dinner!
<Insert happy dance>
If nothing else, I have successfully eliminated soda from his diet and so much more easily than I ever imagined. Now if this would only work for his cheeseburger (another item I do not buy for home) obsession, we would be golden……
In honor of Doug’s 155th Birthday tomorrow and Mrs. H’s birthday the other day, I am rerunning a post from Doug’s 153rd Birthday (we won’t be giving away Mrs. H’s age though)…
DC Speaks, Doug’s 153rd Birthday and why is Mrs. H so jealous?
DC has his own Facebook and Instagram accounts. Instagram is private and I only accept people I absolutely know to follow him. 90% of the photos on this account are photos taken of him by me. The photos and videos he has taken himself are pages from whatever book he may be reading, food, princesses from either books or the computer screen and videos of YouTube videos of Cinderella dancing (spinning mostly) or other characters spinning. There’s a lot of spinning.
I set up the account for him because he enjoys looking at photos so much. Apparently he enjoys looking at them much more than he enjoys taking them. His facebook is set for friends only. He is not allowed to write anything unless he asks permission first and then I stand there while he writes whatever it is he wants to write. He is not allowed to accept friend requests until I can figure out who the requester is. He does not post his own photos. I’m sure he could, but his friends will be inundated with photos of Judy Garland, Amy Adams, princesses and Disney characters.
He does go on Facebook on his phone to look at pictures of his friends. He is allowed to do that. So far – and it had been 4 years, he has followed all of these rules. I check his phone and his account daily. Lately he is starting to lose interest in typing a status. He does not like to type to begin with and I really was hoping that this would help him get used to typing or to even start to like typing – it didn’t. He still, every once in a while will ask to write something or I will sometimes take a photo and ask him to write what we are doing, but not as often as before. He still does go on everyday to look at pictures though and as I said, he will still post a status or two.
I was thinking about DC’s past status updates and decided to go through and pull out some of my favorites. (Translations and/or explanations are in parentheses – a few names have been edited – other than that, nothing has been changed or corrected) So, in no particular order, DC speaks…….
-We Going to Anthony.s for Thanksgiving Dinner i want Tuckey Legs
– i Hate Snow
– i hate Snow . i like going to Work with Mom
– i Hate Snow
(I think he might not like snow very much)
– The Lights is On
– we Had Fun at Halloween Party. i am Happy. Be Brave For No Storm
(worrying about losing power)
– i am so Happy is Halloween
– we going to sleepy Hollow with ‘BB’ and and mom and doug i am so exciting
– i Like the Movies Trouble with The Curves
– i going to Dad.s wedding I am looking handsome
– going to grandmother. s and have some muffins
(“grandmother’s” – from Disney and other books)
– Happt collation
(Graduation)
– luau day like lilo
(Luau day at camp – the only thing he can relate it to is Lilo and Stitch, because Everything is related)
– last day of camp was yestrday. i had a fun. i am going to grandmother.s today. a very merry unBirthday
– i am tired. i went to grandmas i went to winter guard show i did a good job i went to dinner with mom and doug and mom; s freind suzanne and her frien. i dance to wing it i am going to sleep now where has the time gone
– i ate alligator in new Orleans
– We having fun in Florida mrs h will be so jealos
(“Mrs. H. will be so Jealous” – there are quite a few of these. I did not include them all only because I could not find them all. Mrs. H. being jealous began 3 years ago when DC was in his last season of Challengers baseball and DC’s team was invited to Fenway Park for Challengers Day – All Kids Can. Mrs. H. had mentioned that her husband, Mr. H. was so jealous because he would have loved to go to Fenway. I don’t think DC really understood what “jealous” meant at the time, but he did know that he was doing something that Mr. H. wanted to do. Somewhere along the way Mr. H. being jealous evolved into Mrs. H. and it just went from there. I know as does she, that he thinks jealousy is a good thing.
– I had turkey leg and turkey wing and bread. with mom and uncle smap and aunt lisa.I like pie.we going to lunch with uncle ted later after that.
– I want a turkey leg today
– phew.I work at theater.we went to the ball.we ate dinner with uncle scamp and aunt lisa.we went to camp Halloween party.
– We going to mountain of oz on Saturday.We taking the airplane tomorrow have to get some rest.I will see my family.We going to dilly wood tomorrow if it does not rain have some fun
– I had fun time. Not New York City. Next week we going to New York City. Lots of food and book store
– Thank you thank you mrs .H happy happy EasterI love jelly beans too
– I am happy to have my birthdayToday is my birthday,
– Mrs H will Be Jelous
(I don’t recall what she was so jealous about this time. That was all there was to the post)
– I love jellybeans too
– Have a Thanksgiving day. I don.t have work. i will have dinner With My Family. me and mom doug uncle scamp Aunt Lisa Erica I want turkey Leg
– Mom fell down blood over her I did not take picture she is ok
(we were out walking our CharityMiles)
– I did good work at the theater to day I liked the dream girls show. I m not tired
– Happy Birthday to alland to all a Good WishesHappy birthday DCTha;ts me
(It was his birthday. I think he was actually thanking people for the Birthday posts on his page)
– I am a ogre
– I am brave
(also storm related) and my favorite…
– Happy 153 birthday doug
This ‘boy’ puts a smile on my face every single day…..
Yesterday a friend of mine pointed out that I haven’t had a very easy “run of things” over the past month or so. This is true. Most of it has not been anything really major (aside from DC’s seizure, of course), but everything all at once on top of each other has really thrown the proverbial wrench in the works around here. I don’t normally like to publish back-to-back “fluff” pieces or back-to-back reruns, but right now “that’s all ‘she’ wrote”. So please bear with me through one more “fluff” piece, read some of the old posts with “musical titles” listed below and remember that I really did give you prior warning about the “Blog Title Series” 🙂
This is one of those posts that I put together and save to post later when we are away or when I am really busy and really don’t have the time to write. Like the “Blog Title Series” (Series? Yes, there’s more), they are very often off topic or “fluff”. I like fluff, sometimes fluff is fun.
From an earlier post and what I suppose would be called the first installment:
(The original title was “We may be crawling in the dark, but we sure do have some stories” – I thought is made the post sound too serious. I decided to include it anyway because……it’s my post and I just happen to like this song – no other reason)
we are all crawling in the dark at times – we certainly were back then and really still are to some extent – but there is always humor to be found
Once again I am heading back to an old website my friends and I used to run a good long while back. I have used some of the blurbs and stories from that page in two other posts: All the….. small things and We sure do have some stories, don’t we?The first was one of my most popular posts in the month of April, the second was relatively popular as well, so I decided to use the remaining stories/funnies in one more post.
“Some of the following blurbs are mine (DC was very young at the time) and some are from friends of mine but all of them show us that there is always humor to be found. We might at times learn something valuable – but most of the time it is just plain funny.”
Random Themes
A “Serious” Combination My girls hate vegetables. Being a good “mother” I insist that they have to have two vegetables during dinner. Tonight my younger daughter was sitting there pondering her meal and playing with the vegetables she is supposed to be eating. She quietly put a couple kernels of corn on her fork then added some peas along with them. She held the fork up to me and asked….. “WOULD YOU LIKE SOME PORN?” (Peas + Corn = PORN)!!! Several years from now, I will have to explain what my husband and I were laughing so hysterically about!
My son, who was non-verbal until he was seven, still uses his sign language often. He gave his sign language teacher and one of my friends an ornament of the “I LOVE YOU” sign as a Christmas gift. I – assuming that the “I love you” sign was pretty much universal, was surprised when my friend thanked him for the “Rock On!” ornament!
One day I had to take my son for what would be a very long doctor appointment. The parking area was one where you paid the parking attendant in the booth near the entrance to the building, not in the lot itself. It was pouring rain when we went in but we were in the office for so long, that the rain stopped by the time we came out. I was standing at the parking attendant’s booth counting change to pay for our parking before we walked to the car. As I was counting my son began to yell, “Hurry Up, Mom!” – I noticed the attendant laughing and I turned to see my son standing directly under a drainpipe – water pouring directly down on his head! He thought it was still raining! I said “*Bob, move over” – confused, he moved, put his hands out to check for rain and said “Oh”.
Children hear and remember everything (especially when you think they are not listening) When a teacher turns to her assistant and says “It’s so hot in here, I’m dying.” you can guarantee that at least one student will go home in tears to tell his/her parents that Mrs. Blank is dying. It was time for a Parent-Teacher meeting anyway.
When his “Step Dad” tells him jokingly “P.U. you stink! Time to take a bath”, please understand that you will get a note home from school the following day informing you that your son was telling everyone he encountered “P.U. – You Stink!”
You can NEVER anticipate what will come out of their mouths! While in line at a crowded grocery store, your child decides to recite a line from a favorite movie (something he does on a regular basis) – “Please don’t send me back! I like it here!” (Disney’s Summer Magic)
It is never too crowded a place to announce anything regarding bodily functions: While shopping at the Disney Store, your 12 year is asked by his “Step Dad” if he would be able to wait a few minutes to go find a restroom. He proceeds to yell at the top of his lungs “POOP!” ……………I guess that would be a “no”.
My son wrote “baby” on his Christmas list to Santa. Thinking he wanted another baby doll this year, I asked what kind he wanted “BABY FOR MOM” (I let that go). Later I noticed he added “GIRL” to his list.
My Daughter came home today and told me that she had to do a writing prompt – the subject: What do you dislike? Her opening sentence (a grabber for sure) was: “Do you get hit everyday? I do, and I don’t like it.” I could just envision the school calling DCF immediately! All I could mutter was,…..OH MY GOD!…………………. Then she proceeded to tell me that she wrote about her Special Needs brother’s habit of hitting because he thinks it is funny, which was partially her fault because she would let him do it to make him laugh. She understands that he can not help it and she still loves him very much.
That, right there is the best way to end any post.
DC’s best friend, BB is a big oldies fan and has been from the time he was very young – Elvis being THE ultimate favorite. I once asked his mother where this came from, he was definitely too young at the time to really know who Elvis was. She had no idea. His love for Elvis led him to the Beatles and oldies in general. He listens to the oldies station and the DJ’s, before the station changed format, would always take a phone call from BB.
DC is always open to do anything BB likes – they do have quite a lot in common to begin with, namely their love of musicals, but DC never really had much of an interest in concerts, other than the Wiggles (kill me now).
He has been to plenty though. Most were outdoors where we were free to move about.
6 years old -blondie-better than ezra-our lady peace-echo and the bunnymen-mighty mighty bosstones k’s choice-local h-moby
BB’s love of the oldies opens up another door for DC, away from the realm of Disney. If BB wants to go, DC is open to it and will almost always end up having a good time. I am always on the lookout for oldies concerts. DC and BB have been to quite a few Beatles cover band concerts, one with an Elvis impersonator as the opening act. I never have to try to “relate” these concerts to anything for DC – BB likes it so that is good enough for him. Of course Elvis was easily relatable to Lilo and Stitch, but that was just a bonus. We’ve been to a “Happy Together” concert and even Chicago. BB of course loved all of them and DC really did enjoy himself too, even though he really did not know any of the music.
When my brother offered me Eagles tickets back in March for my birthday, BB was my first thought. Keeping it a secret from him for 3 months was not an easy task for BB’s mother. Much like DC, we can not tell BB about these events too far ahead of time. One of the last times we were planning on taking BB with us somewhere – he went snooping found it written in his mom’s calendar. He always seems to find out ahead of time – a true detective indeed. This time I told her to write it in as “Bird Watching” (yes, I crack myself up). That is exactly what she did…… We did actually manage to keep it a secret for possibly the first time ever!!!!! When we came to pick him up, he still had no idea where he was going. Impressive!
And how did the boys do……………?
BB was certainly surprised and excited when he found out where he was going. He was a little bit overwhelmed by the crowds. I don’t think he was expecting quite that many people – The ‘Beatles’, Chicago and Happy Together shows were all at much smaller venues. At intermission while standing in the massive crowd, he asked me if this was what ‘the’ concert was like in 1971………. (sigh)…………..
I explained to him that I while I did not go to many concerts in 1971 because I was ELEVEN….. this is what a concert was like and is still like now. He had just never been to a large concert venue before. Because the Eagles were talking a lot about 1971 while going though their history, he had it in his head that all of these people attending were there as a reenactment of a 1971 concert. I don’t think he realized the amount of people who attend concerts in large venues.
DC found it necessary to nap during the “mellow” first part of the show. He caught his second wind for the second half and I do believe they both had a very good time – crowds, naps, bird-watching and all.
I had a dental appointment last week. Years ago, I requested never to be scheduled with one particular hygienist. The first time I saw her, I left there feeling as if my mouth had been ripped apart. As it turned out, she has a child with autism. I made the mistake of telling her that DC also has autism. Mistake? Yes! Mistake! This was the most uncomfortable and painful appointment I have ever had! Painful – because the more she talked about her son the more aggressively she cleaned my teeth. Uncomfortable – because the stories she felt compelled to tell me about him were just unbelievably inappropriate (in my opinion) and very uncomfortable for me.
I have friends and we do feel relatively comfortable talking about our many issues with our children, but never, ever would I speak of these things with a stranger or here in this blog. Her stories went above and beyond anything I could even imagine. In general, I am usually willing to talk with anyone about autism. I am no expert and can only speak to DC’s autism, but I am always willing to talk about it if someone feels the need. It did not take long for me to realize that she was not looking for someone to talk to, she was just really looking for someone to shock and this conversation was not just for my benefit, it was for the benefit of the entire office.
When I arrived for my appointment last week I discovered that they had scheduled me with her again. I couldn’t ask them to switch because she was standing right there. She didn’t remember me, and I specifically did not mention DC…. but it didn’t matter – she had just gone through a divorce…….
sigh………
I left there with my mouth torn to pieces.
This appointment and the memory of my first appointment with her reminded me of a post I wrote a few months back which was written about what I will share or not share. Everyone has different ideas about what they feel comfortable sharing, but there are some things that I, personally am not comfortable in sharing here – that’s just me. I am sure there are people that think that I share too much and that is fine too – I am comfortable right where I am..
Today is DC’s first full day at camp. He has attended this camp since he was 5 years old. He loves it. Before he left the school system at age 21, he was able to attend 9 to 3 every day for 7 weeks each summer. Now that he has a “job”, he normally uses some of his allotted vacation time to attend for two weeks of the season. He does and has always been able to attend the twice weekly after camp program.
He attended when he was at the camp full time and still attends now after work. Because we took an extra vacation this year, he was not able to take an extra two weeks off to attend camp as he usually does, so I opted for him to go one day a week on Friday in addition to the two “after camp” sessions that do not interfere with his work schedule or his time off. This works out well because I am off from work on Fridays for the summer and I don’t have to figure out and schedule how he will get there each day.
The camp has what they call “Special Days” (more about that in an upcoming ‘Everything is Related’ post) listed on the calendar. Because of DC’s schedule he has missed one of his favorites, Hat Day (or “silly hat day” as DC likes to call it) for the past 3 years. He still has every single construction paper award that he has ever won for his hats on Hat Day and he is very proud of them.
Today happened to be Hat Day. As soon as DC discovered that he would be at camp on Hat Day, it was all that I heard about. We went through his collection of silly hats and he chose the cheeseburger hat.
We arrived at camp and he got himself situated. Although the director and assistant director are aware of his seizure, I wanted to stress again the fact that I really believed it had to do with the heat and the all-around stress of the day we had that day. I also wanted to talk to his group leader personally.
We were a bit early so the staff was still in their morning meeting. DC decided that he had to use the restroom. He came right out and informed me that there was no toilet paper.
(for someone who was so uncomfortable writing a post about toilet paper that I had to use a code word – ‘paper towels’, I do get that it is odd that I am writing a post about it again)
I got him a big handful from the ladies room and he went back in, no problem…. or so I thought. When he came out, he would not let go of the fact that there was not toilet paper in the men’s room, even though he didn’t need it any longer, it wasn’t there. I told him that I would let the director know as soon as they were finished with their meeting – but he would just not calm down about it.
When the meeting was over he came with me – still ranting – to talk to the director. First I explained to her that what was going on right then was because there is no toilet paper in the rest room. She immediately called to one of her staff to replenish the supply. This did not do a thing to calm him down. It was too late. This coupled with his normal ‘arrival anxiety’was too much and even when I showed him the new rolls, it didn’t matter, he was too far into this now. It went on for awhile.
When he finally did calm down about that, he moved right into his normal routine of obsessing about me.
“I’m sorry, calm down now. I’m sorry. Not ‘crappy’ anymore “- (DC – speak “crabby”).
As many times that I have told him over the years that he has nothing to be sorry about (and as many times as I told him this morning), this is what happens. If we are home together, this could and has gone on for hours. If I am dropping him off somewhere, I try to just get him calm enough so that I can leave, because if I am there he will continue to perseverate on me.
I was worried and having seizure flashbacks because it was hot and now he was upset, so I was afraid to leave when I normally would have. He finally did calm down to the point where I felt comfortable leaving – not to say I feel comfortable leaving him anywhere since the seizure, but as comfortable as I can be now-a-days.
As I was leaving he moved on to obsessing about whether I was going to come back and when I was going to pick him up. This is his regular obsession – I do not know why – I have never been so much as a minute late in picking him up anywhere, ever, but it has always been a thing with him.
Now that he had moved on to “Mom is coming back”, his regular routine, I was sure it was safe to leave.
I hope his anxiety this morning does not ruin “Hat Day” for him. Fingers crossed that he comes home with that construction paper award today, because that will most certainly fix everything.
“and history someday will rave…….”
