DEATH, TAXES, AUTISM, WEDDINGS (all of my favorites)

I'm feeling particularly icky this morning..............Anybody want to guess why. Autism/Wedding combo!

I'll give you a quick run down of the last few weeks. We are one of those earned income credit families. We make enough not to be technically below the poverty line, aka no food stamps or government cheese but not enough to handle an emergency car repairs or save for college. So every year we wait with baited breath for our W-2's to file for our big fat tax refund. Anticlimactically, we usually need it to pay bills.

This year we'd planned spending it on our long awaited wedding, the one I so elegantly bitched about here: http://autismspewage.blogspot.com/2012/04/im-sick-of-being-autism-poor-and-i-want.html. This year, of course, is the year we're broke into a new tax bracket. We also claimed the kids on the W-2's so consequently we less got taken out all together which didn't help either. So we got back less than half of what we expected, epic fail :(

What does all this equal? It equals huge fights over even HAVING the wedding, gulp! Even after I've essentially cut our budget for the wedding in half, took on most of the duties myself (which was exactly what I didn't want to do), spent TOO much money and time on the things we have done, I was having a hard time convincing DH that we should go through with it. You see someone (hopefully I never find out who this person is or their eyeballs may meet with my kitchen forks) began telling DH to go to the justice of the peace and have a big party at our vow renewal in ten years.

Then I get this phone call:

Jonathan's Teacher: "Hi K, I have something I want to talk to you for Jonathan. I think we should retain him. The school is losing the upper inclusion classrooms next year."

Me: "What, why, that is exactly why we placed him there!" (we wanted the inclusion classrooms and knew he'd be held back this year).

JT: "There's no money and the gap between the NT kids and IEP gets wider as they get older. He may even need to go into  a full time ESE class."



That is the painfully paraphrased conversation I had two days ago. After that I couldn't help but think of my old boss who had an Autistic low functioning son who was turning 18. He was fighting for his son's guardianship rights. He said to me: "Why do they want so much paperwork so I can take care of my son?". I still feel the pang of heart break even recalling that poignant moment. Stripping his son's legal rights so that he could care for him was clearly heartbreaking but necessary.

Jonathan is seven, in ten years he'll be seventeen going on eighteen. In ten years we may facing the same heartbreaking choices my boss was making two years ago. Call me crazy but the idea of planning the grand vow renewal in the midst of that doesn't sound appealing. I know that is a possible outcome (one of many) and far off but the reality is we don't know where we're going to be in ten years. Whether I'm helping him fill out his college applications or applying for his guardianship we just can't know.

God help me, this wedding has got to get DONE!

Utopia, my personal hell

I must admit, I worry about the end of the world. Not in a train-in-the-dead-of-winter, stock can goods, Doomsday Prepper kind of way but I would be lying if I said those scenarios it didn't haunt my consciousness.





As evidence of my subconsciousness activity, last week my fears played a staring role in my nocturnal picture show. I had a dream about after the apocalypse (unspecified in nature). My family and I were living in a concrete high rise horticultural structure, utopia right?

In the dream Jonathan and I were strolling through the roof top greenery. As in any good utopia fantasy we are wearing whiten linen, he is hugging me and giggling while I poke him in the ribs for a good tickle. Suddenly a blaring alarm sounds and he runs from me panicked. I frantically try to catch him on his panicked descending route. He is a mere fingers breadth beyond my reach when I realize "the colony" is trying to separate us. "The colony" is trying to kill Jonathan because of his disability. I'm a reproductive female and he is a resource suck, thus the separation and his subsequent murder. Thankfully my dream abruptly ends before the anticipated ended leaving room for the hope that I reach him in time to forestall his execution. Maybe I've seen the Postman one too many times but this fear for my family is real.

I awoke from this dream horrified and reminded myself to listen to my mommy instincts. I guess my point is Jonathan vulnerability is terrifying to me. In even in my dreams I'm shielding him from himself and society. Living in Florida we have to worry about the typical tragedy of hurricanes, flooding, Forrest fires and the general craziness that living in Fl. entails (think ballot counting, retiree driving, and face eating zombies).

I've seen Jonathan become a mess from eating a (yes, singular) chocolate chip cookie. How hard would SCD/organic  food be to come be in a week long power outage? How long would my personal sanity hang on without ABA therapists or school to cage, I mean captivate my children?

Now that I've got the yuck out of my mind I'm going to bed, thank you Internet for being my captivate audience.