Lilly’s Countdown to Community Living

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Jul 202018

Canva-Freedom-Chasing-LillyHi Friends,

Lilly has a court hearing this week, and after the hearing she will be released into the community. Sounds scary if you’ve read her story. (And it is scary!)

She will have 24/7 staffing and be in a house with a few other disabled tenants. The things that swirl through my mind are about how she will get along with her staff and fellow house people. And the neighbors -yikes, let’s not forget the neighbors. And will she stay put?

Lilly has a lot of apprehension about this because she previously hasn’t been able “to succeed in the community,” as DD guidelines call it.  The rule book words it as “the least restrictive environment.”

The “least restrictive environment” wording has changed so much in the lives of many Developmentally Disabled people. Some changes are for the good. Others are awful. I feel that one important word is missing, and that is the word SAFE. The guidelines should say, “least restrictive SAFE environment.”

Lilly has been anything but safe in her community placements up to now, and that’s why we all have misgivings going into this weekend. I am hopeful and talking positively with her, but nervous inside. If you have a DD son or daughter, you know exactly what I’m talking about.

Prayers appreciated, Nealie

Jul 092018


I had two grandchildren with me when I happened to see Lora. She has a 12 year old daughter with RAD (Developmental Trauma). Before we parted she said, “You make it look so easy.”

I kept thinking about that. We had lots of hard times with Lilly for years. Lilly is being cared for now by full time professionals, and she does not live with us, as told in Chasing Lilly. It wasn’t easy!

Things look different now. Lilly isn’t in my home, cannot hurt me physically, cannot run away from home, cannot hurt pets or break my windows.

Is life easy now? I still talk to her at least once a day, often listening to rantings, and sometimes she hangs up on me. That’s fun. I have multiple emails and meetings concerning Lilly, and we visit her.

When she is doing well, and I feel safe, she comes home for 4 to 6 hours for a visit. That’s all I can handle, and it’s hard not to be anxious while she is here. I find myself going over things in my head like:

Did I put away the knives and scissors? Are medications that were in the bathroom put away? Where are the cats? Will she take a “no” in a good way, or will it set her off? Will she run away while she is here? Where did I leave the candle-lighter? Should I check her pockets?

Almost every time she comes Lilly asks me why she can’t stay the night. I tell her she is too old to spend the night, and grown daughters don’t do that. I don’t tell her she can’t because I wouldn’t be able to sleep with her in the house. She’s told me too many times about a dream she’s had of killing me with a knife. But I think she knows why she can’t stay over without going into it.

Yes, I make it look easy, but it must be because I’m in a safe spot in my life now. I pray all my friends with RAD children will get to a safe spot eventually, and that they will have more success healing trauma in the lives of their children. That’s what needs to happen. Healing.




Happy Fourth!

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Jul 032018


July brings a memory with Lilly…

In Chasing Lilly, I wrote,

By the start of that first summer, Lilly had been with us about six weeks. Cold weather and spring rains kept most of the crazy incidents invisible to the neighborhood. I knew neighbors could see her when she was standing in the big picture window looking out, because they told me that she’d line up her small toys on the windowsill and frantically wave at every passing person who glanced her way. It was reported that she would give the middle finger to anyone going by who didn’t smile back at her!

There’s another July incident that I didn’t write about. (There are probably hundreds!) But Bruce and I had Lilly in the back seat on our way to an electronics store. We pulled into the parking lot and parked next to a car with a couple guys in it who appeared to be mad at us. Did we park too close?

Uh oh, they are coming over to my window….

I lowered the window and Bruce leaned over and gruffly said, “Can I help you?”

The bigger guy accused, “Your little girl there just flipped us off.”

Bruce sighed and said, “Okay, thanks.”

I raised my window and looked at him. So what were we supposed to do about that? She was about seven or eight years old, wasn’t raised by us, AND she knew she shouldn’t do it, BUT she always got a reaction when she did.

I doubt she knew what it was supposed to mean (and still doesn’t), but if something works well at getting people mad, she perfects it –even to this day. 🙂

It’s the same with certain words #*&%$#. Bottom line is whether it’s another driver or a little kid, don’t let a gesture or a word ruin your day. You can’t know what’s behind it. We just think we do.