On a good day, parenting will test the integrity of your character. On a bad day, parenting will test your will to live. Parenting children with trauma histories will cause you to test the integrity of everything and everyone you thought you knew, for the rest of your life.
~J. Skrobisz

Thursday, June 16, 2011

Ill prepared

New IFI supervisor said, "off the record? i don't know about any of this stuff and I feel ill prepared to help but if you're willing to teach me, I'm willing to learn and work with you."

And I said, "off the record? I don't want you here, you're only here so I have a safety net in case she rages and someone wants to report me to CPS. But I'm glad to teach you and share any leads or contacts I get." Then I handed her five business cards of area doctors that work great with challenged kids.

Then we shook on it.

She said that I was probably the most educated parent she's ever dealt with. That half the problem is dealing with parents that are clueless and unwilling to do the work and added that some of my frustration with the system might stem from the fact that the system is used to working with reluctant, uneducated parents. We talked about the broken system, which she is equally appalled about. I told her we need day respite. She says she can't find any for ANY of her clients.

She called tonight to say she's not coming in the morning, APS hasn't approved IFI services yet. *roll eyes* Then she asked how it's going. I said, "well, Sissy is still doing ok, no rages yet but I'm having trouble transitioning, which is new for me and catching me off guard."

Sissy was yellow twice for behaviors (disrespectful and hygiene) but has stayed on green otherwise [1]. And it's not that she's being bad, it's just that after 97 days, I'd forgotten how much RADishes talk, as though they're afraid of silence. And good God, she doesn't talk about ANYTHING just babble babble babble about random, unrelated things. Oh, and the last word. Crap me a brick, this kid has to have the last word about EVERYTHING, even in a conversation she isn't a part of.

I'm keeping my "ignore it all" blinders on but it's hard to not want to go crazy or pull my hair out by the end of the day. It's Chinese water torture. Worse, the other two have been at VBS every morning this week so it's just been me and her in the morning which I thought would be a good thing- you know, bonding and all.

Shoot me and put me out of my misery. She doesn't know how to self-moderate or actively engage without direction, redirection, encouragement, focus, rinse, wash, repeat, ad nauseum. At the Y pool today, she was babbling, babbling babbling and I just swam away under the water to the deep end because if I didn't, I knew I'd have gone crazy on her.

And the supervising. I'm exhausted! WG and AB were self-contained. They would play or get along or whatever without the need for me. I can't take my eyes off Sissy for two seconds. Showering? Crapola. I haven't had a chance to shower until The Dad comes home every day because I'm so tired I'm sleeping through my alarm and then he's gone to work and I can't leave them unattended for the ten minutes to shower. Not kidding, infants are easier to manage! Literally drove me to a panic attack yesterday evening from all the noise and babbling and supervising.

The sewing machine has gathered some dust because by the time they're all in bed, I'm beat. Check email? pbft. Facebook? Blogging? Ugh.

Plus all the phone calls and appointments and paperwork and faxes and what not trying to get Sissy situated back in our care. STILL don't have school records. I may be driving up there next week to sit in protest until I get them. Oh, and our new IFI supervisor didn't know what CBAY is. So we haven't even started that. Ugh. Explaining all this to the IFI super, fun times.

But here's a funny at least. Sissy emerged from her room this morning looking like a clown. I swear, RADishes do it on purpose. They put on absurd outfits for the attention. Well, I didn't give her any beyond, "bra, deodorant, hair" when I looked at her. Didn't flinch, didn't let my face betray any emotion. Then, in the parking lot of church almost an hour later, taking AB and WG in, she exclaims, "I LOOK LIKE AN IDIOT!!!!" Still, I said nothing. Didn't even acknowledge she spoke. But she changed some of her outfit when we returned home. And all I said was, "please put away your shoes." Which she did. Without protest.

Oh and another funny, I forgot how much RADishes are in pain. She must have hollered "OW!" about thirty times today. Everything just kept hurting her. Still, I didn't flinch, didn't speak, didn't acknowledge. Occasionally when she didn't see me, I'd look to make sure she wasn't bleeding or bruised. But if an outsider was looking in, I'd have appeared as a callous, heartless fiend and she would have been a klutzy, bumbling fool. Of course, we all know the truth is she's a RAD and I'm her therapeutically parenting mom.

The not so funny is that we were having a candid discussion about some of the behaviors and illnesses she saw while at the hospital. I nonchalantly brought up the subject of hearing voices, noises, talking to people that aren't really there. Her interest was piqued. She said things like "maybe the voices are actually angels." and "maybe they really ARE there and other people just can't see them."

I explained that it's a brain playing tricks, that therapy and medicine can help and that it's nothing to be ashamed of or scared of, that if it should ever happen to her, she should always feel safe to talk to me, her doctor or her therapist about it. She denied, denied, denied, averted her eyes, tried to change the subject with an injury on her toe and then I asked her pointedly, getting her eye contact, "Does any of that happen to you?"

"NO!" but her pupils dilated as she said it. Big as saucers.

So I added, "well, just in case, I'll never make fun of you, I'll just try to help. You know that, right?"

And she was off on a deflect tangent, fiddling with her toe and complaining that the staff at the hospital didn't take care of it like she wanted them to, blah, blah, blah. I said, "that's a sneaky little trick."


"Changing the subject because you don't want to talk about something."

"oh. yeah."

I got up and fetched her a band aid for her toe (it actually was a little sore) and dropped the subject.

I think I'll reiterate what her IFI super said, "off the record? I don't know about any of this stuff. I feel very ill prepared to help."

[1] we're following the hospital's model for color levels based on behaviors. if you'd like to know more about it, email directly from my profile page.


Ashley said...

I have an e-mail in to my SW about sibling support stuff for you- I haven't forgotten! Sibling workshop didn't run, but she said she'll get me some resources- Thinking of you!

kisekileia said...

Hey, so I saw this article on the New York Times website about a case with an adult who's a lot like Sissy in that the system never seemed to be willing to provide him with adequate care and supervision for his severe mental health needs on a long-term basis, who snapped and killed a worker taking care of him. I know you're swamped right now, so I wondered if you'd be interested in having me see if I can shoot off an email to the author saying "Hey, this doesn't just happen to adults in Massachusetts. There's this kid who's going to do something like this someday if she doesn't get care that the system in her state is refusing to give her," and link to your blog.

Do you want me to do this, or do you want to do it yourself? If you want to email the author yourself, click on her name and there's a link to "Send an email to Deborah Sontag." If you'd like me to send the email but want to give me some further information to help (e.g. real names), you can email me at kisekileia at gmail dot com.

I may not be able to do this until Monday because I'm going to be out of town for the weekend, but I'll do my best to do it ASAP next week if you want me to.

waldenbunch said...

Was just thinking about you and praying you take deep breaths and don't think too far ahead. You are awesome and you are a survivor. Your kids need both.