The musings and rants of Julie Marie Miller, Special Needs Specialist, Parenting Expert & Mental Health Caregiver
  • Julie Marie Miller

When you fuck up your own day

Someone's drowning, flailing and thrashing well below the water's surface. You jump in to save them but they grab your ankles and they're pulling. So instead of aiding them to the surface for air, you're being pulled below, too. Every few minutes, their grip loosens and you get just enough air to keep screaming for help. But all anyone else hears is a faint whisper, offers empathy while asking if you want another life vest they can toss to you safely from the shore...because they're absolutely confident you're an excellent swimmer.

Sunday, January 27, 2019

"Elliott Jean's fifth birthday party"

That's all that was on my calendar that morning. But you can't be too far away - certainly not an hour and a half from an emotionally unstable, dependent person you love (PYL). After one of the most difficult weeks (I gotta stop saying that <---), she was stable. She awoke calm. Then came the manic. I blew it. I FUCKING RUINED HER DAY. Why can I comb her hair and rub her brow when she's depressed? Why can I feed her, help her get ready when she's overwhelmed but needy? Why can I handle every fucking bill, schedule every appointment and search every corner for resources....? But I can't accept and BE ACCEPTING OF THE WHOLE HER - including the Manic. I spent the whole morning cleaning - that's what I do when I'm stressed - through snot and tears and Lysol and Mop & Glo, I sobbed, snot and all. Julie - IT'S ALL PART OF THE ILLNESS. Learn to FAIL BETTER!!!

Five suicide threats this week. No help to be found.... to be continued.

I wrote the above in January; three days before we took her to the Emergency Room, which we would not leave until five days later. It was saved in my draft blogs because interruptions of tasks is my normal; laundry can wait, dishes can wait, dog walking can wait. Blog publishing can wait.

We've had a couple of days like this since I wrote this, including today. We call them good days. But wait... McDonald's got her food order wrong again - twice. Lost cause for what began as a "good day," just 48 hours off the meds.

I know what she needs. I know it in my heart and soul. Unfortunately, no one accidentally dropped a few million dollar bills in the gymnasium parking lot we spent today watching her little brother play basketball....

One of her biggest triggers is food; we've abandoned all privately owned restaurants for chain establishments only (and they still fuck up her orders).

Another trigger is boredom; easel, paints, ice skates, hair dye are just a few of the additional expenses this week.

Another trigger is being a burden and not having space to be alone; 24/7 supervision and "do not operate machinery or a vehicle" are warnings we prefer to heed.

Another trigger is looking in the mirror; no amount of makeup or hair dye helps reduce the side effects of weight gain at the rate of a pound increase per day.

Another trigger is getting dressed; see reason directly above.

I know how to fix this; while the mental health system tries to "fix" her....

1. Personal chef

2. Dietitian

3. Music room with every instrument (she's taught herself how to play them all)

4. Painting studio

5. Aviara and horses

6. Sensory room full of beanbags, swings and trampolines

7. Ice skating rink

8. People who love her no matter what; well, she has number 8. And that's free.

My newest thing is wanting to move her to the UK after having a fellow SPED mom sending this article, I can't solve her problems by up and moving, can I? (What about the 11 year war you fought for her little brother to get private school through IDEA?) I can't sacrifice one for the other - parenting.

I did receive some good news today, so it hasn't been an all good or all bad day; a phone call a from the organization that denied her services with the news that they are reopening her case after years of not being "autistic enough," which was denied and taken to Fair Hearing back in 2004; a reconsideration of a closed case. Thanks for my 8-inches of records contained in two 4-inch D ring binders. (This might be a good time to mention my D-I-Y Binder book is available for download at Hold My Beer Foundation. (ACCESS PASSWORD: DIYSPED, blog readers) The application was submitted back in August 2018 and one furious phone call to a very kind social worker when they tried to deem her incompetent.

Four to six weeks. Four to six months. As the winds change here every 4-6 hours....

So what do I do to solve life's problems? Start a nonprofit.

What would you do?

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