Apr 062018

Hi Readers,

We see Lilly weekly, talk to her daily, and take aspirin in between. Just joking -life isn’t that bad, but it is more than interesting!

Lilly is our daughter -a heart adoption, and we love her so much. Eighteen years and counting.

Good things are happening, and some changes are coming to the blog.

It will be biweekly, with one week devoted to talking about all things Lilly. Two weeks later I’ll post a partial chapter from Chasing Lilly so that new readers to the site can get to know her. 🙂

My focus now is the Audibles book being completed, as well as you connecting with Lilly as much as possible. So many people can learn from her.



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




When Your Special Needs Child Goes to Jail

 Chasing Lilly, General Information, Life's Difficulties, RAD parenting  Comments Off on When Your Special Needs Child Goes to Jail
Feb 022018

Jail-Photo-Chasing-LillyI never intended to share this, but Lilly has been to a county jail three times now. Some things we’ve learned might help other parents in a similar situation.

You may ask what she did, but that’s private. I will tell you the first time she was in for three days, and it didn’t phase her! A year later it was for thirty days, and it was tougher. They can have bedbugs in jail, and she had lots of bites. She couldn’t eat the food and lost twenty pounds in thirty days. She was in isolation almost half of those thirty days for behaviors. There is no reading material or TV in isolation. Just when I was about to become a basket case over all this, she was released and sent to a government facility, so things eventually turned around for the better.

Fast-forward a couple years and she got her swagger back and thought she was invincible. Again. Lilly was in jail this time approximately four months, and if she had been a regular person, I would say she deserved it. But Lilly is anything but a regular person. (Read Chasing Lilly!) Maybe two weeks in jail at the most to make an impression might be okay. But that’s my opinion for Lilly; I can’t possibly know about your grown child, and what would be okay for them. To keep someone who seriously needs mental health services in jail is very detrimental. This last time, she gained about thirty pounds in four months, because the jail gave her cake three times a day. Cake with breakfast, lunch, and dinner. I am not making this up. And no bedbug bites.

It’s not easy staying connected when someone is in the county jail. Phone calls cost money. The jail visitation that you see in the movies, where you can put your hand on the glass to “touch” the prisoner’s hand on the other side is now history. The inmate is on a screen, (like Skype), and you have to make an online appointment at least 48 hours ahead of time, so you can do a Skype-type twenty minute visit.

I know this may be a downer, and I don’t have many answers, but here is what I learned that may help if you find yourself in a similar situation:

  • Look up your county’s jail information to get a general information number.
  • If you don’t know the assigned attorney’s phone number, call the “Registrar.” They have that information.
  • You can go online to see the court docket and the charges, etc. Go to the county’s Clerk of Courts web page. Do a records search. You will be able to view everything that has been posted. Write down the inmate number. You will need that.
  • Make sure you note whether it is Municiple Court or Common Pleas Court, and the judge’s name.
  • If your child is being evaluated for “competency,” that means competency needs to be established by a doctor (chosen by the court). This doctor decides whether or not your child is competent to understand what is going on, as well as the charges. Lilly was sent out to another facility for four to six months to have “competency restored.” That was almost funny, but it got her out of jail. During that time, a psychologist evaluates your child before he is sent back before the judge for a sentencing determination.
  • If your assigned attorney will not return calls, (which is what happened to me), then call the Probate Court that appointed you the Guardian. (Your Guardianship paper has the name of the judge and phone number on it.) Ask for the Magistrate or the Court Investigator. They will call the attorney and say something to them that will cause them to call you back. It worked like magic for me. Your biggest help (if you need it) will be from the Probate Court that appointed you Guardian. Do not call them over and over. Do your research so you don’t ramble on. Make your calls count if you need their help. Note:  I made a call to Probate Court and asked what you would do if you are a parent, not a court-appointed Guardian. From what I gathered during that call, if your child turns 18, and you have an expert opinion that he/she is not able to understand or make decisions, then a parent CAN become a legal Guardian. I was told the drawback is that in doing so, is this takes your child’s rights away.
  • Keep in touch with your DD case manager if you have one. They seem to basically put your case on hold while there’s a jail term. They have big case loads, and the case worker doesn’t have time to do this stuff. I think they assume their client is safe for now. (?) Would love to hear from a case manager on the other side of this equation. 🙂
  • Keep your therapist updated as well. You don’t want to lose your spot with them!
  • I am Lilly’s Guardian of the Person, (which means I have nothing to do with her finacial matters), but as far as I understand, Social Security payments stop when a recipient goes to jail. If you have a payee, and there is money in the account, you can ask them to mail a check to the jail to be used for phone calls and necessities. Or maybe you can mail a check instead of going online to pay. Check with your jail.
  • Send cards and letters to fill in the gaps between video/skype visits and phone calls. Any cards with glitter will not be accepted.
  • You will have to load money onto a “card” or account for your child inmate. From that, phone calls, chips, pop, soap, toiletries can be purchased at high prices. The jail’s Inmate Services phone number will have the number for you to call to do this. You cannot drop off anything at the jail.
  • Be aware that there are two divisions in the jail. One is the regular population, and the other is the mental health division. Make sure that your child is in the mental health part. They should have a phone number for the Director of Mental Health Unit. This person is employed by a psychological services company, to work with inmates at the jail. They don’t do counseling, but they oversee the unit.
  • There is also a position called, “Forensic Specialist,” and this person is a liaison between the jail and any hospital that an inmate would be sent to for competency. They work for the Alcohol, Drug, and Mental Health Board. (ADM)
  • I know this is a lot, but I hope it helps if you ever need it.

If you haven’t read or recommended Chasing Lilly to a friend, this is a good time.  -Nealie

(All of the info in this article is based on my experience in the Ohio court system.)