Touch my kid again lady and I'll set his TSS on you!

Yesterday Noah's TSS*, Jon, asked to talk with me.

Of course my first reaction was to sigh and feel a bit deflated. So often when someone who is involved with Noah wants to talk with me it is about something negative. Sadly, I've become a bit conditioned to react just as I did; like a balloon losing some air. Right back to feeling like I'm emotionally tied to the rail road tracks.

This time however it wasn't really about Noah. It was about how the staff at camp respond to him.

Yesterday at arts and crafts one of the specialists** (let's call her Mary because I have no idea what her name really is) became frustrated with Noah and made him leave the room. The problem is Mary made him leave the room by holding on to the back of his neck.

Jon saw this and (in his own words) went ballistic. He told her to get her hands off of Noah. And then they had words. And then the head of the specialists was called in, and the program director. More words were spoken. Differing versions of the event were given. Very 'he said, she said' it sounds like.

Jon was still upset and concerned when he spoke with me at the end of the day. He acknowledged he may have initially over reacted in how he told Mary to get her hands off Noah, but he felt strongly that she had crossed a line by holding on to Noah the way she did. He was also concerned with how she spoke to Noah earlier about the project he was working on.

Jon told me all this and my thoughts jumped back and forth between "wtf, you grabbed my kid you bitch" and "shit, just how upset should I get about this because seriously I'm not sure how willing I am to rock the boat considering our fear he may not be allowed back at camp."

Clearly I couldn't ignore this, nor did I want to ignore it. Jon has been awesome with Noah all summer, and after working with him for eight weeks, seven hours a day, he has a pretty good handle on Noah and his behaviors. Jon is also the first person to work this closely with Noah with the new understanding that attachment is the umbrella over a lot of his behaviors and emotional problems.

Jon also see's first hand how Noah and the camp staff interact. Something I don't get to see at all.

And most importantly? Jon has Noah's back. And as he put it, "not that many people do." Awesomeness yes? I mean awesome that Jon will stick his neck out for Noah in that way. Sad that so few people are willing to.

Once again we walk a fine line. Noah is a special needs kid at a regular camp. Just how much can I realistically expect the camp to "change" for Noah. The administration has shown over the last two years that they are willing to work with us. But how far can I push it?

I know Noah can be a PITA and that he often appears to people that don't know him as a bratty, spoiled kid. I just didn't expect that reaction from the counselors and specialists at camp because I thought they were informed of his "special needs" and what role Jon is there to fill. I'm not sure how much more "informing" I can do. I meet with the owner of the camp prior to the start of camp. I document on his application form his diagnoses and things to look for. I spoke with his bunk counselor on the phone and at the pre-camp visitation. And I've had regular talks with the head counselor, Kim, throughout the summer.

I spoke with Kim yesterday, and then with the head of the specialists, Martha, today. Both conversations were productive, although I still don't have a very clear picture of how it all went down and Mary insists it didn't happen the way Jon is portraying it.

As is often the case in situations like this, you are more likely to believe the story of the person you know/trust the most. I trust Jon. I lean more to believing what happened unfolded as he describes. The camp knows and trusts Mary, they tend to believe her side.

Fortunately, Martha has life experience, and she knows, as I do, that when there are two such differing stories the reality is often a combination of the two.

So yes, today I had a good conversation with her (the first conversation I have ever had with her). I'm sure once she realized I wasn't "that mom" that was going to make a huge stink about this made a big difference. She told me what she was told happened. (She took notes of the conversation she had with Mary and Jon yesterday, and then made them shake hands at the end. I thought that was awesome.)

The short version is that Noah has been rude and bratty during arts and crafts all summer (I'm sure the fact that Noah drew guns and shooting on one of his craft projects during the first week didn't help, since it freaked out all the adults) according to Mary. Yesterday he continued to be rude and difficult to work with and Mary had had enough, so she told him he could leave and join the half of his bunk that was already outside. Apparently he refused to leave, and that is when she "helped" him by guiding him by the back of the neck. Mary said she did not know Noah was a special needs kid or that Jon was there for him.

Martha acknowledges that if what Jon said is all how it really happened she is concerned, and what Mary did was inappropriate. She applauds Jon for sticking up for Noah.

She also expressed concern that this is the first time she has been told that Noah has been a "problem" in arts and crafts all summer. And that Mary had no idea who Jon was and that he was there for Noah.

As all this was being explained to me I realized that I was less concerned about the actual incident. (I spoke with Noah about it last night and he didn't seem at all traumatized by it. If anything he was confused that all the "big people" were talking and said he felt sad for Mary because they were all talking to her. Perhaps some empathy on his part, since it's usually him they are talking to or about.) I'm very concerned however that the arts and crafts staff went eight weeks thinking Noah was a pain in the ass and had no idea he was one of the special needs kids at camp. So clearly none of the information I gave the camp initially was filtered down to the staff.

The good thing is that Martha came away from her conversation with Jon and Mary yesterday with the same concerns. So at her morning staff meeting with the specialists today she asked them if any of them knew which kids had a TSS and what their job was. One person said he knew there was one TSS there. There are in fact three children there with a TSS.

So what we have here people, is a failure to communicate.

A failure on many levels apparently. The camp administration needs to do a better job educating their staff if they are going to continue to allow special needs kids to attend and insist they provide their own TSS. The TSS should have their own mini orientation and need to be introduced to the rest of the staff. And the TSS have a responsibility themselves to make sure they introduce themselves to the counselors and support staff as well.

Jon's role is to intervene when necessary, to hep redirect Noah, and to teach the camp staff how to better interact with him. His job is not to be his "buddy" or his one-on-one personal counselor. The goal is for Noah to have as normal of a camp experience as possible, and that means that the camp staff work with him just like they work with all the other kids.

Martha told me that she is going to make sure that this doesn't happen next year and that her specialist staff are given information about the special needs kids and the role of a TSS during their pre-camp orientation. I told her I'd be happy to come in and be part of that portion of their orientation and that I could bring in Noah's BSC to talk too.

While it's a crappy thing that happened, and upset a lot of people, I think we can turn it into something positive and use it to make Noah's (and the other special needs kids) experience at camp even more positive next year.

*therapeutic staff support
**any of the camp staff that aren't counselors but work with the kids in drama, archery, sports, swimming, etc.

Fucked myself right good with that post, didn't I.

Ha!

Ha, ha, ha, ha, ha

and fucking HA!

Did I actually type those words last night that Noah hasn't been kicked out of camp yet?

OK, well, technically it is true, he hasn't been completely kicked out of camp. Yet.

But today I did get a call at work around 9:45am from the head counselor, telling me Noah had pushed (or hit, I'm not exactly sure now) another camper while in line to go to the first activity. So I was asked to come pick him up, since they told him the last time this happened he would have to go home.

I get there to pick him up and he walks up to me head hanging low. You could see he was upset with himself, and probably with everyone else.

I asked him what happened but didn't get a clear explanation from him, other than the other kid was irritating him.

And then I saw an almost empty bottle of Gatorade in his backpack side pocket. I did not send him to camp with Gatorade. In fact, I told his counselors that he should never be allowed to drink Gatorade, so not to let him get it from the soda machine. And I purposely never send money in with him so he isn't able to buy it, even if he wants to.

Apparently I forgot to tell his TSS that we thought Gatorade, like red dye, was irritating to his brain and negatively impacted on his behavior. Fuck me for that oversite.

And yes, the incident did happen after he drank the Gatorade. I'm not blaming it on the Gatorade, because Noah has to learn to control his impulses no matter what, but I do think it is interesting that it happened after he drank something we know is problematic.

It turns out he went to camp with a pocket full of change this morning (not sure yet where he found it, but I'm sure somewhere in the house is a busted piggy bank). He wanted a Coke, but his TSS said no. And of course since I hadn't told him, why would he think Gatorade would be a problem, especially since it wasn't red. Oh well.

So we are both home. He's spent a lot of time in his room. I told him no TV, no computer. He looked at me and had the nerve to say "but what am I going to do?"

Not my problem kid, not my problem. I have real work to do that I'm not able to do at my office, since I had to leave work because of your behavior. (OK, I didn't say any of that to him.)

I hope this is the most boring day he has ever had.

Emotionally tied to the railroad tracks

Here we are, cruising along into the third week of summer camp! I saw the head counselor of all the intermediate campers (Noah's camp level) last Friday evening when we took the boys out for dinner. She said Noah was doing great as far as she knew and that she hadn't heard anything indicating there were problems.

We saw the owner of the camp at a picnic on Saturday and he said he hadn't heard of any problems either. No news is good news as far as he's concerned!

I spoke with Noah's behavior specialist, who oversees his TSS, last week, and she said it sounded like everything was going great!

You know where this is headed right?

Yeah, yesterday Noah had a melt down at the end of the day in front of the head counselor. The intensity of his reaction definitely freaked her out. 

So now we find out from his TSS that he's been having problems all along.  The typical Noah problems with not listening and refusing to acknowledge redirection, but more concerning to me is that he is still being physical with the other kids, although I still don't have a good feeling as to how bad it is. He's also having more problems socializing with the other kids than I was expecting. I really thought the aggressive behavior had significantly improved, now I'm not so sure.

It's not that I thought Noah was miraculously cured when I wrote this post. I knew we were seeing big improvements, but I knew it was improvement, not that we suddenly had a perfect child. He's certainly acting better at home, and more in control of himself most of the time, but he still struggles. We are, after all, having to use the new behavior techniques we learned a few weeks ago.

I fully expected there to be at least some issues at camp. Really, I did. 

But at the same time when I heard from his TSS last night that there have been problems all along I felt like I had been hit over the head from behind. 

And there I was riding the roller coaster again and plummeting. Because my emotions are so tied into how Noah is behaving that I feel like the old-time damsel in distress tied to the railroad tracks by Snidely Whiplash. 

Only I know there is no Dudley Doright coming to rescue me (or Noah). Even though my rational brain knows it isn't true, my emotional brain feels like I am once again failing as a parent. It is so hard not to find myself falling into that abyss every time Noah struggles.

Even though I know I handled Noah like a master parent yesterday after hearing this. Because despite his meltdown at the end of the day (which may have had a lot to do with them giving him his medication two hours late), he did awesome during archery, and was the star student during karate. So I took him out for water ice (you can imagine the shock value in that!) to celebrate how great he did in karate and archery, instead of taking him home and punishing him like I would have done in the past. And we had a great talk about how he was feeling about things at camp. And I had a chance to talk to him about why he has a TSS and why he gets in trouble more than the other kids, at a time that his brain was open to hearing it. 

So even though my emotions are still tied too tightly to how Noah is doing, I'm going to keep reminding myself that we are winning more battles than we are losing lately. And that what we gained a couple weeks ago was hope, and you can't take hope away that easily.

I just need to learn how to untie the ropes faster!

Yeah! For summer camp! part 3

Week three at Knee Path Day Camp* and everything is going well. If you actually read** the last two very long, drawn out, posts I figured you deserved a very short, but positive, update.


We had a "team" meeting last week and everyone was able to let go of the problems from the first week and get on the same page. Noah is doing well with his new group and counselors and M seems to be fitting in well with them.

I'm impressed with the camp and the commitment they have made to working with us and Noah. Impressed and grateful!

Noah is having a great time there and is excited to go every morning. He's coming home tired and dirty every afternoon, which is exactly how he should come home!

Yeah for summer camp!


*Not the real name by the way. If anyone lives in my area and would like to know the real name just drop me an email - mommyneedstherapy @ gmail dot com

**I don't blame you one bit if you didn't read them btw! It was far more an exercise in venting for me, than necessary for anyone else to read.

Yeah? for summer camp? - part 2

*cue campy soap opera music here*

Setting: Knee Path Day Camp (KPDC) - 27 gorgeous acres of fun in the sun!

Cast of characters:

Noah - our adorable six year old and lead character. Must have impish grin, be missing both top front teeth, have big brown eyes and lashes to die for. Must have enough energy to power a small city indefinitely with occasional impulse control and aggressive tendencies. Occasionally known to bite (note missing top front teeth).

M - Noah's Therapeutic Staff Support (TSS). His "one on one" charged with heading off his misbehavior and redirecting his energy so he uses his powers for good, not evil.


P - Noah's Behavior Specialist Consultant (BSC). Supervisor of M. Determines Noah's treatment plan. General go to gal to help deal with any and all problems dealing with agencies, insurance companies, camp, etc.

S - senior counselor of Noah's bunk, the Lions

E - head counselor for preschool thru 1st grade, supervisor of S

D - Program director at Knee Path Day Camp

T - senior counselor of the Panthers, Noah's new bunk

Announcer: When last we left you Noah was set to start summer camp at Knee Path Day Camp after a long battle fighting insurance companies and agencies to receive TSS hours.

Camp day 1 (Monday): Noah is so excited! We visited the camp the day before and met S, his counselor. He had a chance to play on one of the playgrounds and couldn't wait to come back. I dropped him off in the morning with his swimsuit on, full backpack and a big smile on his face. Mid afternoon I texted M, his TSS and asked how things were going and she said great. Yeah! A huge relief!

Camp day 2 (Tuesday): Still having fun and excited to go! At pickup though M is starting to express some concerns about how things are going. She says things are pretty unorganized and the counselors aren't exactly welcoming her. Also, Noah is already being targeted as "the problem child" so if something happens that he is involved in he is getting in trouble without them trying to find out what happened. The camp seems unsure what M's role is supposed to be and M feels like they are expecting her to act as Noah's personal counselor, which she isn't.

M tells me that there are other kids in the group that have problems, and one in particular is getting in Noah's face quite a bit. The counselors aren't stepping in to redirect the other child and M is feeling a bit unsure how to react, because it isn't her job to work with the other kids and she is afraid of overstepping her role.

M tells me that in the afternoon S gave her assistant counselor and the CIT's the information sheets on all the kids in the group to review. Day 2 and this is the first time they are actually talking about the kids and seeing their information. Way to work as a team guys!


Camp day 3 (Wednesday): Kiel's had a cold all week and I wake up not feeling well. I worked half a day and came home about 1pm to sleep for a few hours.

2pm the phone rings and it is M to tell me that Noah bit the kid she was telling me about on day 2. Noah was going down the slide (a tunnel slide) on the play ground and the other kid was crawling up the slide. He tried to stop Noah from going down the slide and grabbed his head/hair and pushed it against the slide wall, so Noah bit him. There was blood, and freaking out, and lots of finger pointing at Noah and M. M stuck up for Noah and insisted they find out the full story. S wanted to know why M wasn't on the slide with Noah (Hello! That's not her job! Why wasn't anyone stopping the other kid from climbing up the slide?) and says that if he does that again he'll be kicked out of camp. It's becoming clear to me via M that the lack of structure and organization in this group is continuing. I think at this point M had some uncomfortable words with the supervisor of the counselors, E.

3pm E calls me to introduce herself and let me know what happened. She expresses concern about Noah's behavior and M's role at camp. She does say though that the child Noah bit has been a behavior problem as well and they recognize Noah isn't the only one at fault, but, because it's biting, it is very serious. I ask if they would like to have a team meeting to make sure everyone is on the same page about M's role there and how best to handle Noah. E says that its difficult to find time for something like that and she doesn't really think its necessary. I expressed some concern that M felt there was a lack of structure and consistency and E says that they can't have a TSS coming in and telling their staff how to do their job. I left it at that because I really didn't want to make any waves and have a huge fear that Noah will be kicked out.

Camp day 4 (Thursday): Noah has a great day according to M. M says she spoke with S and with E and smoothed everything out. She feels more comfortable and I'm not worrying as much. Noah is having a great time and is actually talking about camp and what he is doing there. He rarely did that with school.

Camp day 5 (Friday): Rich has been away since the day before and I am home with Kiel. His cold is worse and his eyes are all goopy so I take him to the doctor. Double ear infection and pink eye. Guess who else has pink eye? So nice of Kiel to share with me.

12:30pm the phone rings. It's E.. There are problems, but not so much with Noah as with M. But, parents have started to complain about Noah, including the father of the child he bit. And M isn't fulfilling the role they think she should be. They don't feel she is being proactive enough and preventing Noah from doing things. According to them M is being very defensive and not doing what they ask, continually saying "that's not my job."

I'm perplexed. This doesn't sound at all like M. I tell E that we think very highly of M and that she's by far the best TSS we have ever had. E says that camp is different than school and so are the expectations. E wants to know how to reach P. I give them her number and then text P to warn her.

Thirty minutes later P calls me to tell me the camp wants a meeting with her and M and they need M to be more on top of Noah, which P explains is not really what M is there for. The camp basically rejects the idea that M is there to help teach them to deal with Noah, and want M to just deal with him herself.

I end the call with P and immediately the phone rings and it is E. She and the directors have talked and they feel it would be a good idea to move Noah to a different group. This group is slightly smaller and doesn't have any "problem" kids in it and has male counselors. They think everyone needs a fresh start. I said go for it. E says they are going to talk with M and try and get everyone on the same page.

Thirty minutes later E calls again to tell me they spoke with M and it did not go well. She says that M was very defensive and kept saying "that's not my job," "you guys are ganging up on me," and "I don't feel safe." E says she got so frustrated she had to walk out of the meeting.

Frankly, I'm shocked to hear this about M and it makes no sense to me. This is not what I have experienced at all. I trust M and have no experience to base any trust on with the camp staff. Yet, when I talk to the staff they sound very reasonable and like they want to work with Noah and have him there for the summer.

E says that they think it is best that M not be at camp until they are able to have a meeting with her and P to clearly define her role. They suggest that Noah go to camp on Monday without M, join his new group and spend the next 2 1/2 days without a TSS since we can't all meet until Wednesday.

I tell them I think they are a little crazy, but if that's what they want to do go for it. Just know what they might be getting in to. And that if they can't work things out with M I don't think I can find another TSS for him to cover the hours, so they need to know the risk. They continue to say M is being defensive and unreasonable.

I also spoke with the program director D who sounds incredibly nice and expresses that they want to work this out, but M clearly can't do it until P is there. He also makes it clear that they want this to work out for Noah and he hopes that the meeting Wednesday can make M comfortable and put them all on the same team.

P and I text and email a few times and agree we are both a bit confused.

I get to camp at 5pm to pick up Noah and am a little (pleasantly) surprised to see M is still there. I had assumed they were going to tell her to leave for the day. I guess she said she wouldn't leave, but they wouldn't let her back with Noah. She told me she had been separated from him for most of the day.

Apparently the problem started that morning when one of the fathers of a kid in Noah's group came up to Noah during the regular drop off time and started talking to him about bullying his son and how he better stop. I'm a little unclear as to what exactly was said, but I guess Noah knocked over this kids water bottle on the first day (I'm still not sure if it was an accident) and then said he was going to do it every day. So M saw the father approach Noah and told the counselor that was sitting there that that shouldn't be happening. The counselor didn't know what to do so he went out to get another counselor. M didn't feel it was her position to intervene with another child's parent but she also knew this guy shouldn't be talking to Noah. By the time a counselor came in to handle it I guess the dad was gone. I'm still kind of unclear on what exactly happened.

So this seemed to set off a chain reaction of events which involved M being in tears several times, lots of finger pointing by S at Noah, the counselors in general not interacting with him, and S whispering with E several times. M called P at this point because she didn't know what to do, and then got in trouble because she wasn't supposed to be on the phone and that she wasn't watching Noah.

I'm beyond confused at this point. M is telling me things, which I have no reason not to believe, and I'm getting frustrated that this camp is basically not wanting to interact with my son. That I'm paying for him to go, and providing him with full time support, so they just feel they are supplying the grounds. Yet, talking with E and D they made it sound like they want Noah to be successful there.

I get home and email P, who then calls me and we agree that it must be somewhere in the middle of what camp is saying and what M is saying. We are both surprised by what they are saying M is doing/saying, but it has to stem from something. We agree that a new group for Noah is a good idea and have hope that this will work out for everyone. We also think they are a little crazy for wanting to try Noah without a TSS but figure they must know what they are getting themselves in to. I kind of feel that E and D have both verbally committed to keeping Noah there for the summer, even if M doesn't work out.

I really feel bad for M. She's a single mother working on her bachelors degree. She is very committed to Noah and is very much his advocate. She's not going to let herself get pushed around and she isn't going to let that happen to Noah either. I know her intentions are good and I hate that this is going on, for her sake and for Noah's sake. I don't want her to hate coming to work every day, but I also don't want to risk Noah not having her there.

Saturday: Ironically we have a family picnic at the camp for our karate classes. Noah is excited to show us everything and I'm a bit nervous because I know it is inevitable that we will run in to the camp owner. We do, and we talk for a few minutes and I thank him for working with us. Rich and I both express surprise that this is going on with M. We all agree that we hope the meeting on Wednesday smooths everything out.

Later that afternoon Noah's new counselor T calls and we have a good talk. I feel good about him and that he will be consistent and fair with Noah.


Announcer: stay tuned as we begin week two at KPDC. Will M and E resolve their differences? Will T be the answer to our senior counselor prayers? Will Noah keep his mouth shut and his teeth off the other children? Will Mommy keep her sanity or delve deeper into the wine cellar?