Wednesday, June 20, 2012



I must confess, I'm a little tired.  It seems like this week, I'm having to Battle extra hard for my "special needs kid" and really, I'm getting kind of pissy about it.  I did not sign up for this.  Can't I just sign up my kid for the same stuff that everybody else gets to sign their kids up for in the summertime? My sweet boy wants to go to Camp. This is the first year he's eligible for Church Camp, for the 6 year old crowd, they do a half week, 3 nights/4 days.  I saw this a couple months ago, and I contacted the guy on the website to discuss Chris's needs, his flushes, can I talk to their nurse?  I got an email back, "We've never had a kid like that, contact XYZ".. grand high pooba of lutherans outside.  I didn't contact him. Frankly, I didn't want my son to be the Experiment.  This week, a friend of Chris's from church, only a month older, went to the camp.  I'm so jealous I can't see straight, and I want to cry.  I want my kid to go swimming in a lake, I want him to ride horses.   I thought I was ok with my decision to ignore church camp this year, in favor of sending Chris to Day Camp, and having him ride the special therapy horses.  We were going to get a deal after all. Only, we didn't get that deal.
Instead, I got told on the second day of Day Camp that they hadn't filled out all the paperwork, turns out we had been getting 'free services' and that to do so we needed a prescription for services from my doctor.  The third morning, as I loaded my kid up for Camp, I got a call saying they Couldn't take him until we they got a script from my doctor.  I hung up, Fuming, then had to deal with my child's freak out when I told him to get back out of the car.  After he watched some cartoons to calm down, while I called the doctor's office, to apologize, apparently I needed that script RIGHT NOW.
You know that quote you see floating around, "Just because it's an emergency to you does not constitute an emergency for me."  I felt like I was driving around town constituting emergencies, and apologizing, for the neglect of others.
When I ran the script to the office, I was told that I needed original diagnoses paperwork too.  Seriously.  From Riley Child Psych. Fine. So I called them, their machine told me they'd get back to me in 3 days. Yeah. And living in the unknown for the next few days made my kid (and me) flipping Nuts, and Eric's grandma died in there. So Friday morning, the gal from Riley wakes me up at 7.  She tells me that she needs me to sign a release for the diagnosis paperwork.  She can't email it to me.  But she can fax.  I don't fax.  So I can come in. So I get to drive downtown to sign something only to wait 2 more weeks. And THEN once I sign it to release it to the Camp, I get put in the queue for up to 2 weeks while they process my request.  I burst into tears, slowly recovered and explained the situation.  Apologizing profusely for the camp's mistake.  So I asked, since I'm coming in to sign the release, can you release the paper to me?  She said, we have to check with the doctors involved, but I can email them.  Praise the Lord!  So we kidnapped my husband for lunch and to run downtown to Riley, so I didn't have to unpack yahoos to get the papers. I turned them in Friday afternoon to the gal, then heard nothing.  Sunday night I'm stalking them, wondering what's up?!  She offers me 2 hours of services, 9-11, Freebies for Monday, Wednesday, and Friday.  Which handily, enough go exactly around when we'll be gone for the funeral.  But then Wednesday morning, she asks to bump it to Thursday, good times.  That bumps us out of the 7 weeks required, that we needed, in order to sign up for the horse therapy.  We were at 7 because of summer camp only being 8 weeks long, and we were planning on pulling out for VBS for one week, bringing us to 7.  Gone one extra week for this faldarall, and we're out of the program.
TV calmed the savage beastie after that meltdown. Does the camp not Understand the kid has behavioral issue (Which is by definition Ironic since it's a Special Needs Behavioral Camp) he doesn't do well with transitions, and needs to know the Plan?!  And if you were wondering where he gets his extreme dislike of unprepared change of plans, it would apparently be from me.  Because I've been livid for weeks. The camp had told me the turnaround time for the insurance company approval etc. would be 2 days.   So we finished the week, and 5 is more than 2, so I was all, see you Monday!
In addition, while he was watching tv on Wednesday, I got a call from Sam's old preschool.  We had registered Chris to attend the VBS there next month.  He has participated there for the last two years because it was Emily's old preschool too.  And the Deaconess was calling me to tell me that they don't feel prepared to have him (don't want him because he tends towards the Crazy) UNLESS I  can tag along.  I say, he's a lot more mature than last year, he's been in full day kindergarten, he'll be fine.  But the Deaconess insists the teenaged helpers can't handle him.  I don't remember her saying, but I know it was some powers that be, over her, making her call me.  She was fine with Chris, but she's got special ed experience.  Heck, last year, he was madly in love with her. Surprised and shocked, I agreed to do it.  Simply just agreed. Under the understanding, that A. I'd have Sam with me the whole time, and B.  I would need at least one or two days off, I had "plans".  Frankly I drive all the bloody way up there to visit with my friends, not to chase my child or anyone else's all over a different church.  If I wanted to chase children all day, I'd chase my own in my own house, not drive 1/2 hour each way. Ugh.  Now that I've been chewing on it, I'm kind of (a lot maybe) pissed, and disinclined to even allow Christopher to participate.  But what does that say?  OK, so they are woefully unprepared for a special needs child.  Should I show them how just like regular kids he is?  Or should I just leave him happy at special needs camp where he's probably one of the healthiest kids, so he is happy?  I don't know.
Walking this line sucks.
So then Monday morning,  I found out at 9 a.m. (Again.) just after I'd gotten Chris dressed, that they still haven't heard anything from the insurance company, he's still not allowed back at Day Camp (Again.) yet, and the person that gave him a few 'special' hours last week is in training is Just Saying No.  (Again.) 
So I tell Chris, AGAIN, we're not going to Camp.  His lower lip starts to quiver, he starts to lose it, then he sighs and asks, Can I watch cartoons?  Yes honey, absolutely Yes!  What kind of crap is it that my son has to get used to this kind of disappointment?  
But my son is Tough.  

So that's him. Making due with the costumes given.   A Pirate perhaps. Playing with Daddy. Chris lost his Captain Hook's hook on Monday , enlisted Eric to help find it. Chris says to Daddy, " I think we'll find it faster if we split up. Daddy, you're with me." They laughed for a bit then they were off running around using swords as walkie talkies, until they found the hook, then it was, "Turn the sword over daddy, now I'm Captain Hook!" And off they ran, pausing only a moment for me to snap a pic of his toughness. Today was his first day back to Day Camp on the normal schedule, he was thrilled, happy to be back on the bandwagon, packed his lunch and his library card, and off like Gangbusters.  And he fits so well, it's really got me upset, sad, mad, and wondering, what to do now? 

I feel like Cho Chang.  

Hermione Granger: Well, obviously, she's feeling very sad, because of Cedric dying. Then i expect she's feeling confused because she liked Cedric and now she likes Harry, and she can't work out who she likes best. Then she'll be feeling guilty, thinking it's an insult to Cedric's memory to be kissing Harry at all, and she'll be worrying about what everyone else might say about her if she starts going out with Harry . And she probably can't work out what her feelings towards Harry are anyway, because he was the one who was with Cedric when Cedric died, so that's all very mixed up and painful. Oh, and she's afraid she's going to be thrown off the Ravenclaw Quidditch team because she's flying so badly.

 Ron Weasley: One person can't feel all that at once, they'd explode.

 Hermione: Just because you've got the emotional range of a teaspoon doesn't mean we all have.

 But why does he have to be tough? Why do I have to be the Advocate, trying to get him into this program and that program. Which is better, to go and babysit him all the way through a VBS that I'm not even sure really wants him, or just leave him at the day camp he loves, now that he's back in it. ARGH!