Summer Camp is not all fun and games
There is a private post version of this that I am very open to sharing to my readers if you request the password and please don’t be afraid to ask because honestly I need people who can empathize with me to give me feedback and support.
Since it is a sensitive issue (to others), I can’t really go into major details here on this public post with a good conscious, but will post without showing the hidden content:
JUNE
The series of events from my perspective:
I was excited about both Kiddos being able to attend Summer Camp this year. My main focus was on The Younger because I was really concerned about his anxiety. Here is the email exchange between me and the church addressing this concern and asking for confirmation of the program’s structure:
Date: Wed, Apr 9, 2008 at 10:16 AM
Subject: RE: day camp
No there are 3 separate classes for Day Camp. A 3 year old class, 4 year
old class and a 5 year old class.
[signed]
—–Original Message—–
Sent: Wednesday, April 09, 2008 5:50 AM
Subject: day camp
I meant ask u yesterday ab this. Is there only one 3,4,5 class? I don’t want
The Elder and The Younger in the same classroom. I have them on the waitlist at [The Local Church of a Different Denomination] but I thought I better make sure first before I committed there. You
can reply to this so it will go to my phone.
Thanks!
jen
I was very pleased and was also glad that I didn’t have to enroll them in 2 separate programs. How convenient!
At the last IEP revisiting meeting before school ended, The Elder was granted an ESY, extended school year, for the summer for 2 hours of ABA support – that ends up being a half hour every other week during the summer. The Teacher specifically told me to talk to the director and teachers to let them know that she was not there to observe or evaluate them or the program, but the purpose was to ensure The Elder was maintaining the skills through the summer. I paid a visit to the director and teachers of the summer camp to do just that. The conversation went like this:
Me: I just wanted to let you know that The Teacher will be coming to observe The Elder this summer according to his IEP. She wanted me to make sure that you understood that she is only here to make sure The Elder maintains his skills and not to observe the teachers.
The Director: Oh I’m familiar with the process and so is [The Day Camp Teacher] since we were both educators in the school system. She will be used to that.
Me: Ok great, I left The Teacher’s phone number with [The Day Camp Teacher] in case she had any questions.
The Director: Yes that is why I placed her in his classroom.
Me: Oh thanks! I really appreciate that.
Again I was very pleased with the open and receptive attitude that each seemed to have in regards to having The Teacher there for The Elder. I really felt like this was a huge step in the right direction to calm my fears in being judged and ostracized there. I really felt like this was a huge step in the right direction to calm my fears in being judged and ostracized there. People, especially those who think they are your friends, try to minimize that fear just because they don’t judge or ostracize you (or at least they don’t think they are). This makes makes me feel even more rejected because now, my friends don’t even really understand what me and my family are undergoing. I am left feeling like my problems are trivial compared to theirs, that these behaviors are typical “boys will be boys” behaviors.
JULY
I receive an email the night before The Teacher’s final observation for the summer.
I was so in shock, so confused, so hurt, and so angry, all wrapped into a single panic attack. I had totally been blindsided (mind you that this happened about a month prior to The Younger’s incident at a different church). I stayed up late typing out a reply. It would have to be in the morning before I could contact The Teacher to let her know before she arrived. Fortunately I was able to reach her before she left her house and I asked her to meet me at Starbucks instead. I shared with her both the email I received from the church and my reply:
This email was later forwarded to both The Teacher and The Super Doc. When The Teacher and I met at Starbucks, I had her do all of the talking first, she didn’t know why she was meeting with me as opposed to going to Day Camp for her last observation. I had a few questions I wanted to ask her before I told her so her answers wouldn’t be biased. Some of them being:
- About how long were your observations? (no longer than an hour)
- How did The Day Camp Teacher and The Director respond to your visits [Please request password to Find Out What Jen Found in the rest of this section]
- Why did The Day Camp Teacher have to sign off on the paperwork and why didn’t I get a copy of it? (for her job, she needed the signature to prove that she was there, and she was going to give me a copy of all of it at the end of the summer, which I didn’t get a copy of all of it and she even came by the house the very next day to drop them off into my newspaper box.)
- What were her observations of The Elder and how did she interact with him?
This is longer than a parenthetical.
She explained that she pointed out certain behaviors that they need to recognize. For example:
Her concern which she made The Day Camp Teacher aware of was that he is regressing in the self-regulatory skill and that she needs to limit the number of crayons that he gets to use. Simple enough right?
Her point was to make sure he had visual cues. Even though the sign said “No Parking” the sign was a visual cue of his boundaries.**Those were the 2 examples that stood out because they both involved self-regulation which was obviously what the rest of this post is all about.
I could tell she was getting a little uncomfortable so I went ahead and told her what the deal was. She was shocked. I could immediately sense the offense and hurt from her although I don’t think she would ever admit to that. She kept saying that she was sorry for me that I had to go through that and that they owed me an apology. I retorted that they owed her an apology! [Please request password to Find Out What Jen Found in the rest of this section]
I didn’t initially think that but after she said that I started crying right there in Starbucks in front of her because there was too much truth in it. She gave me some tips for Plans of Action. I’ve taken none. I wasn’t sure if it was worth it. I did request a meeting with specific people in the church, but I haven’t had that privilege and we still haven’t The Meeting yet.
The following email was prompted by the fact that when I picked The Kiddos up from the Day Camp that afternoon, I got zero eye contact from any of the adults in the classroom when I arrived. I continued to act as if nothing happened and got the boys. On our way out, they got their backpacks and I went to pick up their crafts. I got The Younger’s and asked where The Elder’s was (since they did everything together though I specifically asked them to to be separate).
[Please request password to Find Out What Jen Found in the rest of this section]
I was hurt and angry. I immediately called The Teacher and told her what happened. What if I hadn’t asked about the craft? Would they have let me leave without telling me all of that??? So here is the email I send the next morning:
That Thursday before and the following 2 days (Monday and Thursday, and the final days of camp), there were apparently some behaviors that occurred that I was not notified of until Thursday. Well, I was notified before that but via email but didn’t get it until then (and no follow-up call was made to me either to make sure I got the report).
The first ‘live’ notification I received was very abrupt. I remember the conversation verbatim and I remember exactly how I felt.
[Please request password to Find Out What Jen Found in the rest of this section]
Hmm. How nice. Should I just assume that it is The Elder, because she wasn’t specific. I didn’t have a chance to ask any clarifying questions due to the amount of time I was allowed to speak.
I immediately called The Hub and then called The Teacher, more to calm myself down than anything else. I knew that if I went there in the state I was in that I would totally make a fool out of myself (not that I didn’t any way). But I finally got composed enough to ask The AP to come with me to pick up the kids (she missed her class because of this). On my way to the church which is literally 5 minutes away from my house, I got a two calls on my cell phone from them. I didn’t answer the first one because I missed it while I was trying to tell The AP enough for her to understand the urgency of the matter (though I was taking my time since I knew that The Elder was safe and no one was getting hurt). The second one I was able to answer.
[Please request password to Find Out What Jen Found in the rest of this section]
I was fine until I was shown “compassion” in the most misunderstood fashion. There is nothing worse than having someone console you on a feeling that is not consolable by them because the feeling is towards them. That didn’t start the impromptu meeting off to a good start.
Before I go into The Talk, I want to be fair and present the other side of the coin
The series of events from the church’s perspective:
First, they didn’t realize that the ABA support was on-going throughout the summer, despite the fact that I specifically went to THREE separate people to let them know. “Oh I’m familiar with this process” didn’t appear as condescending at the time. It was more of willingness and openness to have some help with him.
They don’t understand that “This is my angry face” doesn’t mean that I’m angry at him. They also didn’t understand that that is a review session with him that what he was doing is not acceptable because it makes people angry. If he concludes that it makes me angry then oh well. Why couldn’t they understand that what I was actually doing was showing them how to handle him? A loving pat on the back as I was “training” him just reinforced that they just didn’t “get it.”
Additionally, The Day Camp Teacher has been dealing with some personal issues with sick elderly which why she was acting a little discombobulated, and as for the other Kiddos, it was those Children’s last week of Day Camp because of being out of town the following week. Of course I didn’t know any of this until after I had The Talk. But I can see where they were coming from as far as conclusions that were drawn, but I can’t explain the lack of communication other than the lame “uncomfortable” excuse.
Me: We need to talk, right now.
It would take forever to type up The Talk verbatim and the post is already over 6000 words! But I’m afraid if I don’t cover it it wouldn’t justify my boycott. Here are some pertinent quotes from The Talk:
“Well, I think what needs to happen here is that you will need to pretend that we are clueless. We’ll will have to just have a meeting and set up an IEP but just not call it an IEP for us to follow at the church.”
It was one of the best ideas I had ever heard. I wish I had come up with it. But if I had I’m not sure I would have made the suggestion. We set the date for August 10th after church and before school started and we would never get a good time to sit down with The Teacher. I wasn’t comfortable sending the kids to church after The Talk, nor was I comfortable going myself and feeling like I had to explain why the kids weren’t there (if I was even asked why) so I sent The Hub to Sunday School class and stayed home with the kids. Unfortunately The Meeting never happened. Probably because of too much time passage and the fact that was the weekend that I learned that The Elder was starting Kindergarten and the following day was the day the whole ordeal with The Younger happened. Neither I nor the Children’s Ministry have contacted each other to reschedule the meeting. This tells me that it wasn’t a priority to them, nor me. But what am I supposed to do? Just pretend that I wasn’t frustrated that they don’t ‘get it’ and then try to work things out so that I may or may not be disappointed? I have friends at that church…real friends. I love my church…my pastor, my pastor’s family, my Sunday School class, etc. Do I continue to go there and send my children somewhere else?
They were simply looking at him through a “typical” filter. I honestly think that they perceived themselves being supportive. As doing what is best for The Elder. But in the end, instead of learning what is best for him from The Teacher, they assumed that they already knew what was best for him. I in no means think that these are bad people, bad teachers, bad parents, or what not. They were simply looking at him through a “typical” filter. Now if I can understand their perspective and forgive them, why can’t our family receive the same respect? Or is it just easier to turn your head, move on to something “easier” and more familiar. To pretend that it is a non-issue. To act as if nothing happened. To not follow-up or even realize that I have boycotted the childcare since then? I actually didn’t begin the boycott until I realized that The Meeting wasn’t going to happen, which was about 2 weeks after The Talk.
First Day of School
The Hub: (in the most urgent voice while still arising from the dead) Jen, wake up. It’s 6:35!
Me: (dazed and confused) What day is it?
The Hub: It’s the first day of school and we wanted to be ready by 6:45!
Shoot! Blankets go flying off the bed. Why in the WORLD did the kids oversleep of all mornings? Usually they are jumping in our bed and whispering as loud as the possibly can that they want to go to the kitchen. But nope. Last night was The Elder’s Girlfriend’s birthday party so they had way too much fun and were totally pooped out. (Despite all that The Younger still woke up dry! yippee skippee!)
So Yes, today was the first day of school at the Primary School. This has been the most hectic week. We met his Kindergarten Teacher on Wednesday and got it all straightened out. Yes, you read that right…Kindergarten. Confused? Well you should be. I just got un-confused today.
Let’s see…I’ll do a timeline…
- Early February 2008: Don’t know where The Elder will be next fall. Don’t know what school or what grade or what program, if any of that. I did know the ideal situation. Here is the letter I wrote to the School Board. Since I can’t import all my posts, I have to link you to my blogger post.
- Late February 2008: We have his follow-up with The Child Psych who tell us HIS opinion of what we should do about school, which is kinda opposite from the transition class mentioned in the previous bullet’s link. (You’ll have to scroll down to the Doc’s Results to get to what I’m talking about, but the quotables are hilarious so you might want to take a tangent and be entertained a bit.)
- April 2008: TWO months later, we catch word of some sort of (vague) news.
- May 2008: We find out that The Elder was accepted to be in a transition class! Yet we still do not know what kind of a program, nor which school he will be attending. He was approved for ESY and ABA support during the summer! (oh, which leads to another topic completely but I’ll get to that later)
- July 2008: Again, TWO months later, at The Kiddos birthday party. Rumor had it that all the kids in the classroom (7 of them in this HFA classroom) were going to be transferred to the special ed program at the school downtown, which was not an ideal situation. There was a lot of fear of regression and all the parents agreed that our kids had come such a long way in the past year. There was a lot of preparation among the parents to fight for the kids to be transferred to their zoned schools, which was good and bad. Good because it is where they would go to regualr school, but bad because we would be breaking up the band. Fortunately, The Elder’s Girlfriend lives in our subdivision and he can see her whenever he wants (she did not get placed in our zone because of her age).
Well, now that we know The Elder is staying in preschool, I can call The Kid Doc’s office to have his appointment changed to a regular well check-up. I did go ahead and get part of his shots taken care of. He just didn’t pee in a cup.
Before the end of the month (July 25th to be exact), I got an unofficial call from The Teacher leaking that The Elder would indeed be at our local, zoned school, and would indeed be in a CDC Preschool Classroom there. I was soooooooooooooooooooo excited. (No post to link to because I had gotten lost in cyberspace somewhere by this point.)
Keep in mind this whole time that we know that the first day of school is August 11th.
- August 4, 2008: I get a called from the County School System officially announcing that The Elder “will be at the Primary School in a CDC classroom with Kindergarteners and 1st Graders. He will have a new case manager, but they working out the rosters right now. It will be one of 3 people,” and she rattles off their names (except the guy’s name because she couldn’t remember it. nice.). “Someone should be calling you sometime this week with more details, but definitely before Friday.” Great! seeing that Monday is the first day of school, it would be helpful to know the details by Friday.
- August 7, 2008: I get a call from one of The Elder’s classmate’s mom. We are zoned to the same school so we were hoping to get in the same class together. Her message went sorta like this. “Hi, just wanted to check in with you to see if you liked the teachers. I didn’t see you at the meet and greet so I assume we didn’t get in the same classroom.” There were other details to but I got stuck on “meet and greet.” What meet and greet? Did I miss something here? And by the way, when is the new teacher gonna call me with the details that I obviously needed to be filled in on??
- August 8, 2008: I actually spend the whole morning (until about 1pm) sitting with a friend at the courthouse. And since cell phones are not permitted in the courtroom, I just left it in the car. On my way home, I check my messages and I get one from the school. Yay!…not so fast. The message went something like, “Hi, this is your son’s Kindergarten Teacher. I just wanted to make sure that next Friday would be good for his stagger day.” Wha-wha-what?!?!? Kindergarten? Stagger day? And who is this lady who is neither a guy, nor have either of the ladies names that the School System gave me for who might be his CDC Teacher. I was so confused. I left a message for The Teacher. I left a message for The S/L Friend I have who used to work at that school. She called me back. First, she said I lucked out because we got an awesome teacher. Second, it sounds like The Elder is going to Kindergarten, because where the special ed classes begin on Monday, the Kindergarten students stagger in the first 2 weeks so that it isn’t so overwhelming. (Geez, when I was in Kindergarten, we were dropped off at the curb by our parents and headed into the unknown).
I was afraid to call The K Teacher back because I didn’t know what to say. Eventually, while in the parking lot of Wal-Mart (we were buying underwear for The Younger because he woke up dry AND he pooped in the potty 2 days in a row!), I got a call back from The Teacher who confirmed that was indeed enrolled in Kindergarten but it was a MISTAKE. They looked at his age a because he was 5 years old they assumed that that was where he was being placed.
I’m so confused! And a tad bit stressed out. Ok a LOT stressed out.
- August 11, 2008: No school today like I had originally planned. No school this whole WEEK like I had originally planned. The AP was leaving on Tuesday for Florida for vacation and I was banking on The Elder being in school and only having The Younger during the days. I ended up having to cancel a few things, and move a LOT around, and down right drop the ball on other things and unfortunately I don’t know which balls I dropped to know which ones to go find. Hopefully I didn’t drop them and just passed the ball to The Hub or The Asst.
HOWEVER, I had a message on my voicemail from like 7:15am from the bus driver who was trying to find our house. Wha-wha-what??? What bus? We get bus service even though we are in our zone? And even if so…why was she coming today? Kindergarten doesn’t start until Friday, right? I think. I hope. Boy that would be bad if The Elder missed his very first day of school.
(Insert story about The Younger and School that totally ruined the rest of the day. Grrr it makes me angry just thinking about it! Details soon. It will make you livid when you read about it. I sent a text msg to The Super Doc who did her best to fit me in but I wouldn’t have had time even if she could have. I send her a lengthy email instead.)
- August 12, 2008: I had to meet with a client Tuesday morning so I wasn’t able to return any calls. I had like 3 messages from The K Teacher, 2 messages from The CDC Teacher, 1 message from The Special Ed Supervisor for the County, needed to call The Teacher, and needed to call The School Psych. I didn’t get home until around 1pm so I got on the phone right away. The Hub had to totally take up the slack in other departments of life during the day for me to just sit in a one spot in front of the computer and just try to comprehend everything that was going on around me. I was pretty useless. I was able to call everyone back and take copious notes and verify, with much repeating on my part, as many of the details I could nail down regarding my child’s school status…in the middle of the first week of school. I mean we didn’t even have a Kindergarten Physical specifically because he wasn’t going to Kindergarten. Well, so much for planning anything in advanced. (I was also able to make a few calls for The Younger and the Parenthetical Insert above) The really scary thing was that no ONE person really had the fully story. Each person paused with surprise, shock, or confusion at least twice as we shared details amongst ourselves.
- August 13, 2008: I missed my business network meeting at 8am. I missed my dentist appointment at 10am. I had a huge migraine/tension headache and probably could have stayed in bed for another 2 hours. But I could NOT miss the 2:45pm meeting at the school with The Teacher, The K Teacher, and The CDC Teacher. Well, it was close. We got stuck in the pick-up line. First week of school obviously had everyone a little chaotic when it comes to pick up. We couldn’t have been luckier to have had The Teacher there and really advocate for what The Elder needs in the classroom. I personally am excited about this little blessing in disguise. I think he will really do well. He still gets CDC support of course. And then in October we are going to review his IEP at the official IEP meeting and that should give us enough time to set some new goals in this new environment.
- August 14, 2008: The Hub took The Kiddos over to The Gma’s house to hang out with her so I could sleep in. I woke up at 10ish to an empty and quiet home. I didn’t know what to think. So I went back to sleep. (The poor bus driver tried to come get him again that morning. We were just all confused on this!) Once The Hub got The Kiddos, he took them on a school supply spree, seeing that that was YESTERDAY and school started TODAY. Then The Hub (I should call him The Super Hub) took The Kiddo’s a birthday party (The Elder’s Girlfriend’s). When I got home from my meeting last night (9ish) they were conked out! I went in there and laid down next to them and watched them sleep for a while. After all, I hadn’t seen them ALL day pretty much. I missed my little guys.
- August 15, 2008:
The Hub: (in the most urgent voice while still arising from the dead) Jen, wake up. It’s 6:35!
Me: (dazed and confused) What day is it?
The Hub: It’s the first day of school and we wanted to be ready by 6:45!
Me: (to The Elder) Wake up. It’s time to get ready for school. The bus is picking you up today.
The Elder: (looks at me with a crinkled forehead, stands up, heads down the hall, and sits at the kitchen table. without saying a single word…or to stop to pee)
I sat by the window with a phone ready to call the bus driver if she wasn’t there by 7:15. We all waited patiently. Well, some more patiently than others. Here are some snapshots:
The Hub: (in the most empathetic script) So, are you ok with having a Kindergartener?
Me: (relaxed and confident) Oh, yeah. He’ll be fine. It was not knowing if I had a Kindergartener or not that was killin’ me!
At the end of the day, I got to spend one-on-one time with The Younger, I survived the pick-up line, and I got out of taking The Elder to The Kid Doc to get the rest of his Kindergarten shots thanks to The Hub.
Final Statistics:
The Elder is attending a Regular Ed Kindergarten Class with 18 students total.
Today was his first Staggered day of 6 students. He will have another stagger day next Friday and then he will go full-time, 5 days a week, 7:45-1pm starting August 25th.
He will continue to have CDC support, and I need to verify he will continue to get S/L since it is on his IEP. That one slipped my mind.
Please comment on the original post
Random Thoughts
OK, I was inspired to have a discussion with myself so where else would I turn but to my blog. When we first found out about the prospect of a diagnosis for The Elder (and subsequently The Hub), I can frankly say I was clueless with a capital clueless about the autism spectrum. I was not a blogosopher and I didn’t watch TV other than PBS, Playhouse Disney, or Nick Jr (come to think of it, the latter is still true. Actually now we don’t watch any TV because we disconnected the cable – just the wire from the wall) so I wasn’t aware of all the Autism Awareness things that are so prevalent in the media. The only experience I really had until that point was my nsd’s son (and only through stories, not because I’ve met him) and 2 of my neighbor’s friends and again only through hearsay at a later time because at the time when I met their children, they didn’t say, “Meet my child, he’s autistic.” So when I did find out later that their children were on the spectrum I was surprised, I guess because of my then preconceived notions of what autism is. I was even more surprised to learn less than a year later that I have been living with autism in my home for 11 years and hard-core the last 4 years.
So where am I going with this? (I’m asking myself that…oh yeah, I remember now…) I had a really hard time in the beginning of my research of accepting that it is truly Aspergers, and then of understanding exactly what Aspergers is and what it meant to be on the Autism spectrum and what the difference was or even if there was one. I went through a phase where I didn’t feel like I couldn’t relate to my friends with neurotypical children of the same age as The Elder, but I also felt like I couldn’t relate to the parents at the ASA meetings, and I didn’t really know how to relate to my girlfriends and their spouses/spices. It’s like I heard scenarios and had to stop and think, “does that apply to me and my situation? can I really give an opinion?”
When I finally came to terms to the fact that Autism will always be a part of our lives, it felt so terribly awkward to say that Autism will always be a part of our lives. And though I did say it because I knew it was true according to textbooks, there was always a feeling of uneasiness. I don’t think it was on MY part and MY acceptance. I think it was a self-imposed feeling based on what I thought other people thought and THEIR acceptance of it. I have had so many people look at The Elder at first glance (even special educators) and question his diagnosis. And we don’t really tell anyone (other than in the freedom of blogging) about The Hub’s diagnosis, because they both do appear so typical and at those times, I, not wanting to make a mountain out of a molehill, immediately start to question everything myself, even though, textbooks aside, I know in the very core of my being that the diagnoses is the link to every issue we’ve ever had as a family and couple, therefore also the link to the solutions. So I am eternally grateful for their diagnoses because I cannot say where we would be without it.
This random self-discussion was spawned from this post at Asperger Square 8, and a post that she links to at NTs are Weird about prejudice of HFA/LFA, and then JER’s post about Billy the Kid. And I think my post was materialized from a fear. All I know is what I know and have experienced thus far, and because I know very few people who have children with Aspergers between the ages of 4 and 36, I don’t know what to expect for The Elder in school years, adolescence, college. And even if I did know other people, doesn’t mean it will apply to us, huh? My biggest fear is that I’m getting ahead of myself. My second biggest fear is that I’m not planning ahead. What if I won’t fight for something because I don’t even know that he needs it? Talk about being hidden! Sometimes I shock myself when I have intuition, but I have been discovering it more lately. I guess I just need to give myself more credit than I do.
Sorry if this was hard to follow my train of thought here. Just had a journaling moment…
