Hello everyone it has been years since I've been on the HD lighhouse website. Hope you are all doing well. I hope this post don't offend anyone with HD. I'm in desparate need of help. My name is Amber and Jace(ex-husband) has huntington's disease, we got divorced two years ago. Jace really hasn't had any involvement with his three children, then a lady decided to help him get visitation with his children. I don't believe Jace wants involvement and has lost emotional gait. When we went to court they gave him supervised visitation two hrs a month. He had guns in his home with threats of hurting us, so I didn't take the kids to his home for these visits. When his helper took me to court I was found in contempt. How he got away with this.... the judge asked if he has guns and he said NO! Then started taking them again and Jace's appartment had cockroaches and he was refusing to get his appartment cleaned. I called APS and there was nothing done about it. I told him I was not coming back. I was taken back to court again and found in contempt. The crazy thing about this is I didn't know about filing a motion so I could explain the problems with Jace he can barely walk doesn't see a doctor , not on any medication. There is much more to this story and a chain of events that are extremely frighting. I have a lawyer who is extremely lazy and just sucking money from me left and right. We have have not been to court since I got a lawyer, but he is not doing much. Told me to go to the visit this weekend and I am scared. Has anyone had these problems? Why is it that no one listens to huntington's ITS ANNOYING!!!! Any advise would be awesome! Take care and thanks for your time-Amber

Amber,

I had the same issues, way back in the day, before I even knew about HD. I took my kids and fled, went into hiding for a period of time and my ex took off for parts unknown. I have never known whatever became of him but my kids safety came first. The courts don't get it...they just don't. I feel for you and your kids. I've walked in your shoes. For years after I escaped, I would live in fear that he would find us. His last words to me were "if I ever lay eyes on you again, I will kill you" I believed him.

Carla

Thanks Carla it's really horrible what is happening to my children and to think that they are at risk makes me sick. I did move 3 hrs away for my children to have some sort of normal life, but apparently not far enough.

Amber, it's so good to see you again, but i'm so sorry for how things have turned out, and what you're going through now...hd really does take a horrible toll on families, hang in there hon

Hello! I am so sorry for your troubles; simply can't imagine. I have seen my sister(HD+) struggle in court over custody of her kids. I first, applaud you for seeking out truth and understanding on Huntingtons. My sister's ex denies the disease, believing that her actions are all her fault. I wish he could be as open as you to try to understand the disease.

First, you have to protect your kids. I would do whatever you can to get those visits supervised by the local DHS(Department of Human Services). Second, CPS(child protective services) needs to be alerted. You should call the CPS in your ex's county first, your county second. I suggest both because the more people you get involved, at this point, the more of a possibility of getting someone to listen. Third, you need to call CPS for your ex. It's called adult protective services. If he is not being taken care of, safe, psychologically safe: you have the right to call for his benefit. In my county, the adult protective services hotline is the same as the child protective services hotline.

Maybe you have already done all of this and you are still in this situation.... I will pray for you, I can't imagine the stress, anxiety, pain, you must be going through. Sometimes the legal system just does not get down to the truth; it can be disheartening and seemingly hopeless. Can you contact any of his family? Maybe focusing on getting him help; then in return it will benefit your children??? If he is taken care of... IDK

I apologize; re-read your post and see that you have called APS. So sorry...

I have not called CPS to alert them of the situation, but I will do so. Thanks for the advise it just sucks and I didn't ever think I would say I hate anything, but I HATE HUNTINGTON'S.

Amber, is there a shelter for battered women in your area? If there is, I would call the nonprofit organization that runs it and tell them your story. They will know the ins and outs of the legal system and should be able to give you advice.

Can your lawyer ask for the supervised visitation to be held at another site? Does your community have a visitation center?

Hello, I am in nearly the same situation as you are. I just got lucky in the first round of court when he didn't show up. I had a lawyer but she didn't think anything could be done. I told the judge I was afraid for my child and told him about the HD. Of course he had never heard of it. My ex moved away and has recently moved back. I was as friendly as could be but he still thinks he needs unsupervised visits. I think the best thing for us both to remember is that we are the MOTHER!! We know what is best for our child. My ex was also in Iraq and I worry that he has PTSD along with the HD. He also has guns in the house. He has never actually threatened me but I know he has threatened his sister-in-law. I don't know where you live. I live in TN. If you need to run somewhere, I have extra room.

Dear Amber,

I just thought of some other things.

1. Keep a log book of every time he has contact with you or the children. I keep a monthly planner and I write down every phone call, when it happened and how long the call was. I also write down every visit, what time it started, what time it ended. This will give you a hard copy, evidence of any erratic behavior. The courts love evidence!

2. Fire your lawyer. Ask the court if they can help you. Also, try to find out who the Guardian Ad Litem(spelling?) is for your county. This person is supposed to be the advocate for the children, not the parents. You may also be able to find a lawyer that will take your case for free. I live in a very small county (5,000 people in my town 20,000 in the whole county) so I have no problem calling the court house to ask questions and advice.

3. You have rights! You can make requests of the court. Another thing, try to get your ex to meet you in public places. If he really wants to see his kids, you could meet him at the zoo or a park or something. That way, they wouldn't be in his house.

4. I think most counties have a safe place where supervised visits can happen. The visits are supervised by a social worker. After the Josh Powell thing, I think (I hope) most courts have second thoughts about visits in homes.

5. I think the most important thing is to document everything. Learn all you can about HD and child custody. There is a report in the Journal of Pediatrics about the higher instances of child abuse in HD families. Find that report (I just did a google search for child abuse and HD) and have that entered into the record.

6. Call child protective services, ask for help from anyone you can.

I feel for you!! I am praying for you.