Lilly is in a Good Spot

 Chasing Lilly, Life's Difficulties, RAD parenting  Comments Off on Lilly is in a Good Spot
Feb 102019
 

Canva -Boerboel-Peanut-Bulldog-Ballotade-Dog-Beast

Just a few months ago I was at the end of my wits trying to figure out where Lilly could live safely. She had quite a year as far as bad events go.

She was accepted at one of those $600 a day facilities, paid for by taxpayers, of which I am one. No place was working out safely. I am grateful she is still alive -that’s how dangerous things have been.

She was eventually able to get into the place because we hadn’t adopted her. If we had, it would have been way more difficult, if at all. That’s unfair if you have an adopted child in the same situation unless you have a caseworker and/or a team of people working to help you. I think we had about five people on the team who were alarmed by the constant calls, emails, and MUI’s (Major Unusual Incidents), and that is SO different from one or two parents struggling on their own.

I feel for you if you are in that group! It would be so nice if there was a questionnaire/scale that would be a way to evaluate who gets to be accepted into the residential environment, rather than money or insurance. The mental health system needs fixed in a big way. If there was an admittance scale, and data submitted was documented by professionals who worked with your child (regardless of insurance), then the people who really qualified would get the help they needed.

Many more facilities would have to open to provide care for them, because many people have been left without treatment because of our broken system. The government is trying to save money by closing many of these residential centers, but it will cost society in other ways if these folks don’t get help.

I don’t know exactly how long Lilly will be allowed to stay…We heard a date, but with Lilly’s behaviors it could go past the date. They can say, “We will approve a three (or six) month stay,” but what are they going to do with her at the end of that time period if she isn’t stable? The last “three month stay” turned into twenty months.

So as long as it lasts I will rest, (in my mind at least), and know she’s in the most capable hands there are (other than God’s).  And no, that’s not Lilly in the picture if you were wondering, but it conveyed what I was feeling.

-Nealie

P.S. Remember to tell your friends who listen to Amazon Audibles that Chasing Lilly is a book on Audibles. The narrator did a fantastic job!

Oct 052018
 

(So many of you really care about what happens to Lilly. and although I can’t give too many details, here is an update.)

Lilly’s employment in the resale shop hasn’t yet happened. Nobody working for the County knows the location of her Social security card and original birth certificate, and she needed both to get the required state I.D. for employment. So that has been delayed, and multiple hospitalizations in the last two months haven’t helped the process along much because of the interruptions.

Lilly hasn’t been able to maintain in the group home environment yet again. Surprise, surprise. I think this was at least the fifth group home in the community that we’ve tried.

The community doesn’t like my kid. Lilly breaks their mailboxes and smashes their lawn ornaments. Let’s see, I wondered recently did she break something like a flamingo, or a statue of Mary or Jesus? I asked her, and she said, “Mom, I would never break a statue of Mary or Jesus. You know that.” Yes, I knew that. Silly me, lol!

This group home experience has been a smash-up (literally), and Lilly is in the hospital after pushing a neighbor (who was objecting to their mailbox destruction). I don’t know if it’s the same neighbor whose yard she was in a couple weeks ago, but that man told her to get out of his yard. She told him she’d break his windows and kick his butt, so he called the police.

You all understand me. It’s really NOT funny. When Bruce and I went to see her in the Psych ward recently, she was calm. Almost relieved. Lilly feels safer when she is in an environment where she can’t hurt herself or others, and she has therapy and things to do. And that makes sense. Remember what the guardian told me (in Chasing Lilly)?

She said, “Now don’t quote me on this, because I NEVER said it. Sometimes –and it is rare– sometimes we need to give a child the freedom to be a residential or institutional child. Some children cannot make it in a family, period, and feel better about themselves when not in one, but still cared for, naturally. These are the most severely damaged and abused kids that can never be what they need to be in a family for any length of time. It is actually freeing for them to be out of one.”

When Lilly is in a group home, she is usually there as the lone occupant, or sometimes with one other person. There’s not a whole lot going on, and if she doesn’t like her one staff person or has a disagreement with them, then she gets into all kinds of trouble. In contrast, the residential type setting has lots of different staff, other clients (and their distracting drama), and activities and structure. If she decides to run off, she’s got five or six people chasing her immediately, and she knows they’ll catch her. It’s reassuring to her in a strange way.

-Nealie

 

 

 

 

 

 

Mar 162018
 

Bruce and I were in a Burger King when Lilly was about twenty. While we waited in line she had her thumb in her mouth, simply because strangers were all around and she was nervous. An old gentleman was watching her and he said, “You know you shouldn’t have that thumb in your mouth. You’re putting germs from everything you touched in your mouth. No sir, you shouldn’t be doing that.”

Lilly removed the thumb. It’s a good thing for him that Lilly wasn’t agitated or he could have had a fist in his mouth, LOL!

When Lilly is disregulated, she doesn’t realize she’s sucking her thumb. When fearful and in public, I use a hand motion that brings what she is doing to her attention without embarrasing her. Other people don’t notice, but she takes the cue and removes the thumb. If she is agitated, I never tell her to stop the thumb-sucking, because we don’t like to see her get even more agitated and possibly out of control.

If you’re addressing a bad habit that your child has be careful that you:

Don’t ask them to accomplish something they are incapable of because they don’t have another way to cope.

Don’t address the bad habit during a time of duress. It’s pointless.

Don’t ever embarass them in any way.

Work on a secret signal between you and your child that is barely noticeable to others, and only use it when your kid is not greatly agitated.

I’d be interested to hear from other people about their situations and what they have successfully (or unsuccessfully) used.

 

Love my readers! -Nealie

 

Feb 162018
 

Yes-No-Syndrome-Nealie-RoseI’ve seen enough of a syndrome to give it a name! One of Lilly’s new doctors called me and asked what her diagnoses were. I rattled them off and added, “And there’s one that I made up, but it affects everything Lilly does.”

I give the doctor kudos because she could have ignored me. This curious doctor actually asked what it was!

I replied something like, “I call it the Yes/No Syndrome. When everything goes well, and Lilly gets a yes everytime she wants something, the world is a lovely place. But when she gets a no, the world can be an ugly place for everyone around her. She doesn’t take no’s well. (Remember the tossed dresser and a broken window in Chasing Lilly, because I told her she had to wait for a brownie until after dinner?)

The Yes/No Syndrome exists because she doesn’t have all the resources she needs for coping. She has legitimate anxiety and discomfort when she hears a no. And it can be overwhelming to her.

I spoke to Lilly’s therapist the other day about my made-up diagnosis, and asked if there was a way to help Lilly get used to taking no’s. I mentioned that the last time Lilly was at my house she saw a tiny peppermint on the counter and asked if she could have it. I could easlily have said yes, but didn’t because I thought maybe we should practice, and begin really small. 🙂

Lilly was surprised I said no to the mint, and she was uncomfortable for a few seconds but was able to get past it. I would never before have said no to a tiny mint. We’ve all been told to “pick your battles,” so we gave Lilly a yes whenever possible.

Lilly’s therapist is terrific and said she would begin to work with Lilly on accepting no’s as a type of conditioning.

I’ve told Lilly that we are going to practice this, and she recognizes that she has a problem with accepting a no, because of concrete examples, such as, “Remember the time you got mad because of this particular no, and you broke the TV? How could it have been different if you accepted the no?” (Answer: I would have had a TV.) I don’t think it would be good to give many examples, because we have to stress that kids like Lilly are not bad people because they can’t get their act together, and they need to know that.

Ending on a funny note, Lilly’s new doctor called me (laughing), and said, “We are seeing the Yes/No Syndrome, Mrs. Rose!”

Love my readers, -Nealie