Jan 112019


First I will say that Lilly never lies about everyday stuff (like what, when, where), for a normal routine day. She states the facts.

Next, I will concede that she enjoys telling new people made-up and entertaining things. (Like she used to be a drug addict or that I raise pet skunks.)

Then there are stories that she tells me about things gone awry in her life. Sometimes I don’t know what to do with what she tells me. I ask myself did that really happen? If I reported everything she said, nobody would take me seriously. This balance is so hard for me.

Most of Lilly’s stories are true, but it’s so hard to tell sometimes. Can anybody relate? One time she told me that someone sat on her because she was acting out and injured her. I listened, and decided it was an exaggeration because she was mad at a caregiver.

I was wrong. We later found out (after a few days of complaining of pain and an x-ray), that Lilly had a broken bone. I should have reported it at the time she told me.

And then there is also one more type of fact vs. fiction that we run into with Lilly. There have been some times where she was in a manic mode and didn’t realize what she did or broke, and vehemently denied doing what she clearly did, because she didn’t remember doing it.

I would never classify Lilly as a liar because she is mostly truthful, but there certainly are times that require mental sifting and deliberation.

Love my readers,








Jan 022019


When we saw Lilly on Christmas, she handed us this letter:

happy holldays

Mommy i am

so so so

sorry For

Not going

shopping For

you guys.

i still Love

you guys

and i am happy

that you toku

your time

out oF

your day

Just to see


By Lilly

to mom And dad

🙂 Now I ask you, who doesn’t like to get a thank you? 🙂 -Nealie


Dec 202018

Canva - Cocoa, Hot Chocolate, Cookies, Marshmallows, Mug, Blue

Hi Readers,

Today I spent over six hours sorting through papers to organize Lilly’s past few years of living. That’s a lot of papers! I totaled up thirty-six times that she has been moved since she was 3 years old.

Thirty-six. Makes you want to cry, doesn’t it?

Lilly doesn’t do well in the community. Never has. That’s why she’s had to move so many times. Lilly needs a residential facility where she can live, work at simple jobs, and leave to go on (earned) outings. They are kind of like little cities, and they serve a need.

The problem is the cost. In Chasing Lilly, I mention that they cost over $200 a day, but inflation has changed that to almost $600 A DAY! No wonder Lilly has to be a repeated danger to herself or others to be admitted. Nobody is willing to foot that bill, so it’s always the last resort. And it’s always temporary.

Santa, we really need more of these places to open, and more people to be able to utilize them. There has to be a way to bring costs down and make them an actual place to live long-term.

Get your red thinking cap on.



Positive Stress

 Chasing Lilly  Comments Off on Positive Stress
Nov 222018



Postitive stress is a term I learned from Lilly’s therapist. Here’s how the subject came up, and how it could apply to you and your child…

One time Lilly was here and played with some neices and nephews, ages six to thirteen. She is in her twenties, but it was her favorite type of  playing, (crawling-around), and she laughed more than I had heard her laugh in a long time. It was a great afternoon. So wouldn’t that translate into a great rest of the day?

The positive stress was too much for her, and things quickly went south.

After Lilly returned to the group home where she was living, her mood turned dark. Lilly locked herself in a room and threw something heavy through a window. She cut herself while staff were trying to get the door unlocked and call the police.

And then she was hospitalized. Talking to the therapist later, I said that I should have seen it coming.

Was there a way to prevent the tragic second-half of the day? Nothing prevents everything all the time with people like Lilly, but here is an idea. We can stop all the fun way before she has to leave, and insist on a rest from playing while providing something quiet to do. There’s no guarantee that will fix things, but it might help.

Lilly really misses people in the family, yet her reactions and interactions prevent her from being around them much. We have to limit who she sees, when she can see them. We must be careful about activties taking place that might cause her to be unable to regroup from the positive stress the visits bring.

Hopefully we’ll all have a low stress Happy Thanksgiving!