Friday, May 25, 2007

What Normal Isn't

Just a little melancholy... Derek's at work, Des is at her mom's for the weekend, Hunter's back in Wisconsin, and Allie's at the group home. I am alone, save for the critters -- and their fur. (I should vacuum, but that will wait.)

I am spending time reading all the family member blogs and looking at Destiny's Flickr page. It both helps and hurts to see all the kids there...


Allie turns 18 on Wednesday.

This is likely what all the fuss is about in my head. I told Derek I'd blog it out, but now that I'm here I am still resisting. It's hard to let go and just talking about it all makes it more real.

I know that most parents freak a little when the kids grow up and move out. Empty nest syndrome and all that. But this is different.

Allie is Autistic, and when you parent a special needs kid you are far more hands-on. Even at 5 days away from 18, and living away from me, I am more involved than most parents are with their kids who are say 6 -- or maybe even 12. I don't know. I don't know because I don't know what normal is in parenting.

Destiny's life is complicated. At nearly 11 she's dealt with more than the average divorced kid. She's got not one but two siblings with Asperger's. (Her half-brother and her step-sister -- boy do I hate those terms.) Her mom is a nut-job. And I'm not just saying that as the new wife talking about the old wife. I can't get into it all here... Or can I? But it needs to be said, spoken somewhere outside of Destiny's counselor's office. So let's just say that along with abandonment issues from her mother (and a few other incidents) Des has intimacy issues. Intimacy issues at 10? Yeah. That's true. Sad, but true. And her mom likely has Munchausen's Syndrome (and I'm not the only one to suggest it). Destiny's got complications, not normalcy.

Hunter, well he lives with his abusive father. (And there's documented proof of that.) Hunter's been safe physically so far (:knocks wood:), but emotionally, that's another story. It breaks my heart. Nearly 7, he's got to deal with transitions and problems past normal divorce as well as with his two complicated sisters. And a mom who lives so far away.

What's normal?

So when I contemplate Allie turning 18... Well, it's not just about her age, or the 18 years of work. It's about guardianship. Guardianship which is not mine.

Guardianship is an icky thing in general. It's not like when I first held her I fantasized about her future with others making final decisions for her. It's not like I rocked her to sleep (as best one can with an Aspie baby) with visions of her never marrying or having her own children in my head. Guardianship is horrific. Guardianship isn't normal. Guardianship is necessary.

But that doesn't mean I have to like it.

It's not that I don't want to be her guardian, but in long talks with the professionals in her life it just seems that the best thing for Allie, especially in the long term, is to have another person do this. Not just another person, but an agency.

The decision rested, finally, on three points:

A) When I die, Allie will not need to transition to a complete stranger. (The likelihood of both myself dying and her requiring a switch in guardianship staff is really slim -- even for a paranoid mom me.)

B) When I die, neither Derek, Destiny nor Hunter will be burdened with Allie's pleas to take her home with them. Hopefully the guardianship will buffer them all from the guilt as well as keep them, especially her siblings, from stopping their lives to take her in. (I'm hoping they'll all be family and visit each other, but no one should have to not have their own families because they've taken on the care of a sibling.)

C) This agency is well-connected and versed in legal and other practical matters which Allie will likely face. Housing will be an issue again at 21, and then there are the matters of Allie signing contracts -- contracts she legally may not sign, but which others may sue over or try to enforce. That's clearly above my head, but part of a professional guardian's regular experience.

The other professionals in Allie's life seem to think that having another guardian will make the relationship between Allie and I easier. I'll no longer be the 'bully keeping her from doing what she wants,' and just be mom. More like a friend. More like the independence most grown children experience from their parents.

I have no idea how that will work.

I mean I have that relationship with my parents, but to imagine Allie as independent? Independent from me? I have no idea what that would be.

While Allie no longer lives with me, I'm the first person she calls -- for nearly anything. I'm also the person school, the group home, the counselors, the doctor etc. all call. I'm deeply entrenched in her life...

And while there have been days, days I'm not proud of but will admit to, when I've resented my place, my role, the duties -- and the unfairness of this all -- I've never not been the go-to-girl for all things Allie.

When she moved out, when I no longer had the daily grind of parenting, I was uncomfortable. But between all the phone calls and the time spent with Allie, I still have that connection, that sense of, well, guardianship. Now, in less than two weeks, that will end. Or rather I should say that it's supposed to end, but I suspect it will shift somehow.

I imagine that the counselors and other professionals, and the school, will still call me. And I'll have new calls from the guardian. But my voice will not be the final one, The Law. After nearly two decades of advocating, fighting and explaining, of being the voice they must listen to (or making myself be taken seriously, as the case may be), I won't be it anymore.

That's a big adjustment for me. And right now I'm trying to help Allie with it, explaining what's going on and why, even if I've not processed it all yet myself. That's often the job of a parent, to help the kids first and then work through it on your own.

So at least that part's normal.
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