Susan's Blog

Thursday, December 6, 2007

Rotten Form(s)

Sunny days that I thought would never end
Lonely times when I could not find a friend
— JT

Please excuse the rant. I am at my limit. I have nowhere to go with this except my blog. I have tried and tried. Sometimes people ask, “How do you do it?” Well, I’ll tell you. I don’t always do it. Some days I just don’t. Some days are just cold barren wastelands, like my iced-over backyard. Even if the sun is shining.

My lawyer calls the guardianship a “fairly simple, logical process.” But it is not. I get inconsistent information from every single party I talk to. I have no forms. I have no affidavits. I have no court dates. No one gave me them. I have to find a way to get people to get me the right stuff and make it all go legally correctly, and all I can think is, “Why is this so hard, so stupid, so rotten? all I want is to be able to make Natty’s decisions for him for the rest of his life.”

And actually, I don’t want that.

Ned is in endless meetings and is not really involved with this. Nevertheless, I need someone to share this with.

There is no one. Everyone’s got their own lives to scramble through, their own maze, their own black holes to climb out of.

Sometimes I just want to let go of the rope and see what happens.


We’ve got similiar problems, but with a twist. I’m worried that my husband thinks that the ideal existence for Jared with him at our house, forever. I’m more inclined to look outward for other options. I couldn’t be a bigger fan of my parents, but I would rather be chased by a crazed turkey than live with them my entire adult life. No offense Mom.

Jared is still very clear that he does not want to go to school. My husband is going into the classroom with Jared and they to their songs, circle time, and other tasks until about 11:00. Jared is participating and behaving, as long as my husband is with him. Holy interdependence, Batman. Holy – how do I support two households on one salary?

Forms are never fun – but if it can add a new dimension to Nat’s life – you would walk through burning coals. I’m filling out a detailed application, social security forms, and notifying OCDD that our needs have changed and we’d like that waiver now.

Buck up little soldier, you are still leading this charge.

Oh, and Happy Hanukkah

— added by Lisa on Thursday, December 6, 2007 at 12:35 pm

Misery loves company. I’m not you, and your problems are not mine. You’re not me, and my problems are not yours.

Keep fighting, Susan. Even if you don’t think you know how are doing so well, you are.

Go bake a huge chocolate cake and eat it. That solves everything.

— added by Don on Thursday, December 6, 2007 at 1:07 pm

Nothing much to offer here except a sympathetic ear and a shoulder to lean on. I’m so sorry it’s a rough process.

— added by Niksmom on Thursday, December 6, 2007 at 1:54 pm

Sometime I can help myself by writing out the improbable worst case scenario and the probable worst case scenario. When I see it on paper it seems more manageable. What will happen if this does not get done in the next couple of weeks or even months?

— added by VAB on Thursday, December 6, 2007 at 4:01 pm

I cannot say that I know how you feel, because I don’t. However I am on the outside trying to understand everything I can. I do not have a child on the spectrum, but I am a big autism advocate. I have been reading Autismville on and Judith mentioned your Blog. I am hooked and just ordered your book. I look forward to understanding more about autism. Thank you so much!!

— added by Anonymous on Thursday, December 6, 2007 at 9:14 pm

When I have days like this, I go to this wonderful book I have called Making Peace with Autism. There is actually a checklist in the book that walks you through dealing with overwhelming times. The author really knew what she was talking about … by personal experience I suppose…. 🙂

Seriously, I’m so sorry this is such a pain in the ass. It is so incredibly unfair … Please just know that there are so many people that you have touched and helped because of your own experiences and the gift you have of sharing them …

Hugs from Dover,


— added by Judith U. on Friday, December 7, 2007 at 11:13 am