Camp, Old Friends and a Little Bit of Anxiety

Posted by TakingItAStepAtATime

Yesterday was the first day of summer camp for DC and Salli. DC has talked about nothing else since I told him he would be going on Thursdays and Fridays for the summer. I did not tell him too early because…….

enough said.

He was excited, to say the least.

Not only would he be going to camp but his his favorite ex-group leader, “Giselle” (everyone is named for a Disney character or Princess) would be taking the head position in the after camp program this year!

What you need to know about DC is that no matter how much he wants to go somewhere or how much he is looking forward to going, there is always an element of anxiety that hits him when he arrives…. I like to call it “Arrival Anxiety”.

This anxiety is not anything new with DC, it just seems to be a little more intense, and dare I say, loud since he has been on his seizure medication. It is as if someone flips a switch and there it is. It can be brought on by anything or nothing at all. It just “is”. It also takes him a little bit longer to shake it off now-a-days. For camp drop off, this means a big production until the switch gets flipped back and I am able to leave.

My other concern was that DC, as soon as he heard he’d be going back to camp, began asking for his friend Ron (see story below). Ron had moved out of state a few years ago but still came up to visit his aunt (who was the camp director) and volunteer at camp each summer. With his aunt stepping down as director I was not sure that Ron would be volunteering any longer.

I tried to prep DC ahead of time, just in case Ron was not there this year. He seemed to understand, but with DC one never knows if he is “getting it” until he’s faced with whatever I was hoping he was understanding.

I saw that flip switch before we even left the house.

“Please DC, don’t do this today. Try to calm down and breathe before we get there”. Yes, I know that I can’t just talk someone out of anxiety, but still one can hope.

By the time we picked up Salli, he was “roaring and growling”. It wasn’t looking good.

Somewhere between Salli’s house and camp, he turned a corner and he was just the happy, goofy guy he had been before he went ’round the bend earlier at home. It stops and starts just that quickly, with no warning and often no explanation.

I did not know what snapped him out of it in the car but I was relieved for the moment. I knew that this did not necessarily mean it was over as we hadn’t actually “arrived” yet, but I was hopeful.

Still holding my breath, we pulled into the driveway and got out of the car….. and there was Ron!

ALL HAIL the the Spirit of Chief Gotchabagollie (it’s a camp thing, don’t try to figure it out)!!!!

They hugged each other and DC announced something like “It’s a beautiful day” – that was not exactly what he said, but I knew what he meant and his day was now made.

As DC would say; Phew!

More about Ron and DC (from 2015)

Best Camp Ever!

Yesterday was DC’s last day of camp. The last day is also always “Awards Day”. When DC came home I asked him if he got an award. He said he did. He didn’t have anything with him so I asked him where it was – “At the camp”. (I don’t know if he actually won an award). I asked him what award he won…..
“Best Camp Ever!”

I am sure he did not win an award for “the best camp ever” although he reported it that way to more than one person. I do know that he was really excited about camp that day.

Feeling bad that he had to miss so much of the little bit of time he was scheduled to go to camp this year, I arranged for him to attend on the last two days instead of just his scheduled Friday. It did not make up for the rest of the summer but at least he would be there two days in a row during the last week.

When I called to ask if he could attend the extra day the director let me know that her nephew *Ron would be there volunteering that week. Ron is one of DC’s favorite people at the camp. Ron has been around and volunteering for quite a few years. Like most of the volunteers, he spent a good part of his summers at camp.

DC really, really likes Ron and when DC likes someone – he really LIKES them, to a point that he really needs to be reeled in so as not to frighten the subjects of his admiration. DC really does not understand that not everyone wants to be hugged, not everyone wants him right in their face all of the time. He gets so excited over these chosen few that I really worry that he will end up pushing them away. You have not experienced fear until you see this guy come barreling at you at full speed. Even though at this point I know he is running to give me a hug and even though I know he will be able to stop before mowing right over me, as he is coming at me and in the moment, I am still convinced that he is going to knock me into the next town.

The friends that he sees often are used to this and because he sees them often do not always get the in-your-face DC…… not continuously, anyway. There are a chosen few that he does not get to see all that often, that really get the full DC-experience. If I know we may be coming in contact with any of these people ahead of time, I do try to have a conversation with him before we arrive.

He is supposed to ask permission of the person before hugging, unless of course it is someone we have already established does not mind being on the receiving end of that back crushing hug. Normally when I have to make a rule, DC is good about adhering it. This particular rule seems to give him a bit of trouble. He just gets too excited to think about the rules.

He has had a few experiences where someone was absolutely NOT happy with DC’s attention. In one instance it caused a schoolmate to have meltdown. This upset DC for days. He doesn’t understand. It is not clear to him why he can hug some friends and not others. Some just try to avoid him, a few put up with it because they understand and others do not mind at all and actually are happy to see him. Ron is in the “happy to see him” group.

A few years ago, Ron moved down south with his family. DC continued to look for him at camp and every camp event throughout the year. As soon as he was aware that a winter camp activity was coming the very first question would be about Ron. It took a good long while for him to understand that he had moved far away. I am still not sure that he quite understands ‘moved away’ but he does finally understand that Ron will not be there all the time as he once was.

Ron does come back on vacation to visit his aunt during the summer and comes to volunteer while he is here. In case you missed that…… He spends his vacation volunteering at the camp. Impressed? I certainly am.

DC was so happy to hear that Ron would be there and I am so glad I opted for that extra day. Ron doesn’t seem to mind having DC all over him all day. He is very good with him and I don’t feel as if I have to give DC too many instructions beforehand because I know Ron can handle it.

Halfway through the last day of camp I received a text from the assistant director with this photo.

I know that DC did not win “The Best Camp Ever” award. I am sure he was telling me that he had the best day at camp ever – and a good part of that due to his friend Ron.

*****

*Name changed

Best Camp Ever!

Posted by TakingItAStepAtATime

Yesterday was DC’s last day of camp. The last day is also always “Awards Day”. When DC came home I asked him if he got an award. He said he did. He didn’t have anything with him so I asked him where it was – “At the camp”. (I don’t know if he actually won an award). I asked him what award he won…..
“Best Camp Ever!”

I am sure he did not win an award for “the best camp ever” although he reported it that way to more than one person. I do know that he was really excited about camp that day.

Halfway through the last day of camp I received a text from the assistant director with this photo.

When my friend Tonya brought DC home that afternoon (her turn to drive) she told me that a couple of kids asked her to take a picture of them with DC. She didn’t know their names but she would send me the picture later that day.

It was a another picture of Ron. DC was thrilled to have these photos. They are now the wallpaper on our computer, so he can look at them every day. I can not say enough about Ron. He made DC’s last days at camp so much more fun and happy.

I know that DC did not win “The Best Camp Ever” award. I am sure he was telling me that he had the best day at camp ever – and a good part of that due to his friend Ron.

*****

*Name changed

*** The other friend that asked to have his picture taken with DC has been cropped out only because I do not know his name so I could not get permission to use his photo.

If wishes were horses……

Posted by TakingItAStepAtATime

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.

Before he left the school system at age 21, he was able to attend every day for 7 weeks each summer. Now that he has a “job” year-round, 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.

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. “

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!”

If wishes were horses……

*******

**Names changed

A year later……..I know we can’t have it both ways, but….

Posted by TakingItAStepAtATime

While driving DC and his friend to their first day of camp this summer; hearing her giggle in the back seat and watching DC “happy stim” in the front seat – both so excited to get to camp to see their “Camp Friends” again, I thought about the post I wrote last summer on their first day.

A year later, I feel exactly the same way. They were so excited to go and I felt sad that they can no longer spend their summer at camp as they used to because they are adults, out of the school system and in a work program. They have to use their vacation time to be able to attend camp for a couple of weeks every summer.

DC has attended this camp since he was 5. At first only a couple of days a week, with support because he was non-verbal at the time, and then when I noticed that he was much more responsive and receptive on the days he attended this camp than the days he attended the “main-stream” camp, I decided to let him attend 5 days a week. Because DC would rather just sit and read a book than get involved, and this, of course is easier for the main- stream staff, that was what they let him do. My reason for sending him to camp in the first place was to keep him occupied and involved, so he did not regress during the summer months. The main-stream camps were not providing enough support to keep him from regressing. They weren’t making an attempt to get him involved with any of the activities, whereas this camp did.

My intention today was to write a new post about the first day of camp, but after re-reading last years post I discovered that there was nothing different about the feelings I had last year and the feelings I have right now. I thought I would be used to “adulthood” at this point.

It turns out that I am not……

From July 2013 – We can’t have it both ways…. but it’s still a little bit sad.

Today was my son’s first day attending day camp this summer. He has attended this camp since he was 5 – he’s 22 now.

Every summer he was able to attended camp all summer long, even staying after until 8pm for a special after camp program they hold twice a week. He loves it there.

Now that he’s 22 and aged out of the school system, he is in a work program, year round. When I started looking at programs for him I was shocked that they didn’t get the summers off!

Of course they don’t, they are adults and have to do their job every day, just like we do. But it was a rude awakening for me at the time.

Everything changes after “school-age”. He’s aged out of Challengers baseball. Seventeen years of baseball….over. No more February vacations, Spring Vacations or Summer vacations. He’s “working” now, with 3 weeks’ vacation, holidays and some sick days, just like everyone else. This was probably the hardest transition for me so far. I have to think to call “work”, “work” and not “school”. It takes a minute, when I panic that I haven’t set up anything for February vacation – to realize that there is no February vacation any more. Becoming an Adult may actually be harder on me that it is on him. It’s just such a huge change.

Yes, I know we are moving into adulthood and working toward independence; as much independence as his capabilities will allow. Yes, I know this was the goal all along, but on the other hand, he’s still so much a child. He’s still watching “Barney” (22 years of Barney! That’s a Support Group I need to form, anybody?), he’s still reading and watching Disney and is not embarrassed to hug and kiss his Mom. On some level, for me, as much as I always work and hope for more progress, I love it, it’s nice.

This should be a happy time, and of course it is. He is an adult. He is in a program that he loves, but when summer comes around and it’s time for Camp to start, it’s a little bit sad that he doesn’t get to spend a fun filled, happy-go-lucky summer at camp as he used to. He only gets his two weeks.

Because…..he’s an adult now………

“Please allow me to introduce…..”

Posted by TakingItAStepAtATime

(This post probably qualifies as more of a facebook status, but it made me laugh, so a blog it is!)

Pleased to meet you

DC loves to make introductions. I don’t believe he really understands the point of introducing people. He notices people making introductions in the movies he watches and in the books that he reads. It doesn’t matter if the people he is introducing already know each other. It doesn’t matter if he knows they already know each other, when he gets to urge to make introductions, he does. He is usually very formal about it as well –

“I would like to introduce my mother, Vickie Lastname”

“It is my pleasure to introduce to you, my mother, Vickie Lastname“

or (my favorite)

“Please allow me to introduce my ‘lov-er-ly’ mother, Vickie Lastname“

Recently we attended a pasta dinner fundraiser to benefit the summer camp DC has attended since he was 5 years old. We purchased enough tickets for DC, Doug, my mother and myself and we sold a few more to friends and family members.

Seated with DC and I were,

– My mother (DC’s grandmother)

– Doug (who was also pulling DJ duty)

– DC’s grandparents on his Dad’s side

– DC’s Dad – Tracy

– DC’s stepmother (I generally do not use the stepmother title to describe her because DC is so very much into Disney that there is no explaining to him that all stepmothers are not evil) Karr-ee-anna – in DC-speak

-DC’s Aunt K

-Her husband R

– My friend Tonya

– and DC’s friend, Salli

Due to the crowd, Doug’s father and sister had moved over to the next table.

DC was very excited that everyone was there at the same time. He sat at the table as if he were “holding court”. He then decided that introductions were in order.

Turning his attention to his father, Tracy:

“Tracy, this is my mother Vickie Lastname”

and

“Vickie, I would like to introduce you to my father, Tracy (same) Lastname”

~ Insert Dramatic Pause ~

“Um…….”

“we’ve met”……………………..

Dc and Friends Dancing the night away! Photo Credit: “Tonya”

We can’t have it both ways…. but it’s still a little bit sad.

Posted by TakingItAStepAtATime

Today was my son’s first day attending day camp this summer. He has attended this camp since he was 5 – he’s 22 now.

Every summer he was able to attend camp all summer long, even staying after until 8pm for a special after camp program they hold twice a week. He loves it there.

Now that he’s 22 and aged out of the school system, he is in a work program, year round. When I started looking at programs for him I was shocked that they didn’t get the summers off!

Of course they don’t, they are adults and have to do their job every day, just like we do. But it was a rude awakening for me at the time.

Because…..he’s an adult now………