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At the age of 18, children become legal adults, which means that you – as a parent – are no longer your child’s legal guardian, even if they have Fragile X. In order to continue helping your child take care of his or her self, make decisions in your child’s own best interests and handle their assets, you have to initiate a process of assuming legal guardianship of your child. My husband and I went through this experience with our son, Ian.

Arranging guardianship for Ian was not as bad, or as difficult as I thought it would be. Here is the approach my husband and I used, which I’ve turned into a series of guidelines for you to consider. (Disclaimer: We are not attorneys and do not pretend to be. This is what worked in our state and in our city, Boulder, Colorado, earlier this year. Some, or all, of the guidelines below may differ in your own jurisdiction.)

  1. Gather information. Call your local Arc or your local disability office to see if they offer classes on guardianship. Also, talk to any friends who have gone through the process. You can also search for your state-specific information on the Internet. Search for “guardianship (your state).” Every state is different.
  2. Ensure you have a complete set of the latest forms for your state. You can go down to your local courthouse and pay for the forms, or you can download them from the Internet.
  3. Get a handbook, or set of guidelines, that lay out the process and responsibilities of all the parties in your state. This will help you, and it will help you help your child.
  4. Call your local courthouse to see if there is access to free attorney time. You might not need it, but it is nice to know if it is available.
  5. Begin filling out the forms and use some sticky notes for places where you have questions. Then if you take it to the attorney, you can go right to your questions.
  6. Complete the forms. Note that some must be notarized, and there are timelines for distributing copies to “interested parties.” (This is in case someone “objects” to your guardianship.)
  7. Turn in the forms at your county courthouse and keep a copy for yourself. You’ll pay a filing fee (we paid $175), and you may have the option of purchasing copies of the approved guardian papers. We bought two at $25 each.
  8. Prepare for a court visitor, who contacts you soon after filing. This person comes to your home to meet you, your spouse if you have one and your child. If your child lives with a care provider elsewhere, the visitor will go there, too.When the visitor called, we asked what kinds of questions she would ask. She said they would be about what Ian does during the day and about us becoming his guardians. When I said I didn’t think he would understand the part about guardians, she said she might ask, “Do you want your mom and dad to keep helping you make decisions?”
  9. Prepare your child for the visitor. Tell your child there is a process that parents have to complete in order to keep helping their children. Then ask, “Do you want your mom and dad to keep helping you make decisions?” When he says yes, tell him a person is coming who will ask that question (or something like it). Say: “If you want us to keep helping you, then tell her yes.”
  10. When the court visitor comes, he or she will ask you why your child needs a guardian. Prepare a list ahead of time that reflects your child’s routine, which might include help with things like getting up in the morning, personal hygiene, wearing appropriate clothes, getting to/from work, money management, making/attending medical appointments, taking medications, getting to activities and the fact that reminders are needed for almost everything. The visitor may also ask, “Why should you be guardians and not someone else?” I summed it up by saying, “We know him better than anyone else, love him more than anyone else and want the absolute best for him.”
  11. You might ask the court visitor about getting your child’s case early on the docket. The visitor should have the name and phone number of the judge’s clerk. Call and tell the clerk that your child has a disability, specifically noting behaviors that may affect his ability to sit for prolonged periods of time, and that you would appreciate it if your case could be early on the docket.
  12. Make sure you send out the notices/paperwork required to all “interested parties.” There is a deadline.
  13. Prepare your child for the court visit. These are some things you might want to mention, maybe a day or two in advance:
    • We all have to go to court – you, Mom, and Dad – to see a judge, who will ask, “Do you want your parents to keep helping you make decisions?” You will want to answer “yes.”
    • At the courthouse, you have to go through security like at the airport.
    • You will then go to the courtroom. There will probably be other people there, doing the same thing you are.
    • You have seen courtrooms on television, and they all pretty much look like those.
    • Right before the session starts, a person will come in and say, “All rise.” Everyone stands up, and then the judge walks in right after that and says, “Please be seated.” Then everyone sits down. The judge could be a man or a woman.
    • The judge will have a black robe on. The judge does have regular clothes on under the robe.
    • The judge will call your name because the case is in your name. You’ll walk with Mom and Dad to the front of the courtroom. The judge will ask the names of the parents. Then she will ask you the question about us helping you make decisions. The judge will say that all the paperwork looks to be in order and then sign the approval. We will pick up the paperwork, everyone can leave the courtroom, and it will be done.

An annual report has to be filed. You will be given a date, for which you will not receive a reminder. It is similar to what is on the application, and the purpose is to see if there are any changes in your child’s life. You can mail or turn it into the courthouse. You are now the guardian of your child. Others have recommended to me that I carry an original of the guardianship papers wherever I go. Keep a copy in your car and always take a copy when you travel.

Those are the basics. Now for part of our story:

Ian arrives home the day after the court visitor comes to our house and says, “Jack (Ian’s provider) says I have to go to court.” We had not told Ian about the court part yet.

“Yeah, you do,” I said, “but we all have to go – you and me and Dad. It’s no big deal. We go in a room, and there will be a person called a judge, and the judge will ask you if you want your mom and dad to keep helping you, and you will say yes, and we will be done.”

Ian says, “What’s the court look like? Like any other room?” I’m not sure where he’s going with this so I say, “Uh, yeah, pretty much like any other room.” And he says, “What does the judge wear? Just regular clothes?”

“Uh, yeah, I think regular clothes. Why?”

“Because I’m not going,“ he says.

We are a week out at this point. I cannot believe his care provider told him about the court this far out because I know Ian is not just going to worry about it, he is going to WORRY about it. Every day for the next few days, I hear, “I’m not going to court,” and he walks off.

The afternoon before the court date, Ian stomps down the steps in our house and announces more distinctly than I have heard before, “ I AM NOT GOING TO COURT!”

“Ian, it’s really not a big deal.”

“I’M NOT GOING.” He then throws his glasses across the room. “Ian,” I start to say.

“I’M NOT GOING.” His cell phone flies across the room. Calmly, but quickly, I say, “Ian…tell me why you don’t want to go to court.”

His voice becomes very sad, and it starts to crack as he says, “Because I don’t want to go to jail.”

I stop, feeling that wave of “Oh wow” rush over me, and then every court scene Ian has ever seen on television runs through my mind – you know, the scenes where a person goes to court and then goes to jail, and ever so slowly I say, “Ian, you do not have to go to jail. You will never have to go to jail. This court is different. I promise.”

Ian walked out of the courtroom the next day, gave me a big smile and said, “Mom, I did it.” I smiled back, “Yes, you did.”

Good luck and let me know how it goes!

Jayne Dixon WeberJayne Dixon Weber has been a member of the NFXF team since 2007 and currently serves as the director of education and support services. She has two children—one, an adult son with fragile X syndrome, the other, a daughter who is an occupational therapist. In addition to assisting with the development of the NFXF’s Adolescent and Adult Project, Jayne authored the book Transitioning ‘Special’ Children into Elementary School and is the editor for the book Children with Fragile X Syndrome: A Parents’ Guide. She is also the co-leader of the Colorado Fragile X CSN group. Jayne likes to read, enjoys photography, and goes for a walk every day.
Feel free to share your stories with me at treatment@fragilex.org. I’d love to hear from you.