By the time my son John was 17 years old, it was clear that he was going to need help managing his life as an adult. He has multiple disabilities, both physical and intellectual. His Admissions, Review, and Dismissal (ARD) meetings took hours just to go over all the services in his Individualized Education Program (IEP). He took part in all of those meetings, but he wasn’t ready to navigate his services and adult life on his own. So when we started talking about transition planning, his school started talking to us about guardianship.
At that time, there was no legal option for a Supported Decision-Making Agreement. I’m not sure that a set of powers of attorney would be valid for him either because we aren’t sure that he understands what that kind of legal agreement means.
Doing nothing wasn’t going to be a safe option either, so John’s father and I decided John needed to have an appointed guardian.
When we began petitioning for guardianship, we considered where John was going to need someone to speak for him and where he could probably manage things for himself. I knew it would be essential to have someone talk to doctors and insurance companies for him. I suspected he wasn’t ready to make educational decisions for himself. Looking ahead, I knew that we were going to have to make decisions about his living situation when he graduated from school. But we also wanted him to have as much decision-making power as he was capable of managing.
In the end, we decided to ask the court to give us guardianship of John in 3 areas: housing, school, and medical decisions.
We also had to decide who would be John’s guardian. Since his father and I are divorced, we couldn’t share guardianship. Deciding between John’s father and me was a tough choice.
In the end, we agreed that John’s father would apply for guardianship when John turned 18 years old. At the time, John and his father lived in the same town, his father was very capable, and I thought it would be good for their relationship. It was hard for me to make that decision, but I thought it was best for John. And I trusted John’s father to keep me in the loop.
John’s father hired an attorney who specialized in guardianship to fill out the application and work with the courts. It took about 4 months to go through the whole process.
We spent a lot of time talking to John about his guardianship even before we began the process. We explained that, by having a guardian, he would always have someone there for him. He really wanted that.
We also talked to him about the attorney ad litem. This is a lawyer that the court assigns to represent the person who might go under guardianship. The ad litem interviewed John 3 different times, looked over his medical history, and talked to his school. He asked John questions to make sure that John wanted the guardianship. He took his job very seriously. I’m glad that he did. The court relies heavily on the ad litem’s recommendation.
Even though it was emotionally hard to ask a court to assign a guardian to our son, John’s guardianship hearing was a positive experience. The judge agreed with everything in the petition.
When John turned 21 years old, he graduated from school and we knew he was going to continue to need support. At that point, I was living in the same city as John and his father. We all decided it was time for me to take over guardianship, and then we went through the whole process all over again to have me substituted in as John’s guardian.
Having John under partial guardianship has worked out well for everyone. He still gets to decide who his roommates are, whether he wants to go to secondary school, and what type of job he might have. And even though I don’t have financial guardianship, John hasn’t been interested in managing that part of his life on his own. So I’ve been able to work with his bank and manage his finances without any trouble.
It takes time and resources to go through the guardianship process. Every year, an investigator from the court comes to make sure John is being taken care of. I fill out a guardianship report each year and send it into the court. I love doing that job because I include lots of pictures to show how happy John is with his life.
John is 27 years old now, living with roommates in a house that I manage. He likes having me as his guardian and knowing that I am looking out for him. I sleep better at night knowing that I have the legal tools in place to make sure his needs are met.
What happens if traditional respite doesn’t work for us? How do we, as caregivers, still find a way to recharge? Sometimes respite looks very different from one family to another.
Breast milk is liquid gold and everyone is aware of the many benefits it provides babies. There are a lot of moms that either can’t produce any, enough, or maybe their baby cannot tolerate breast milk. These moms are doing the best they can and we need to stop shaming moms for not breast feeding and support each other.