Other families often ask me what the future looks like for us and our boys. There are many things that I think about when I think about the future with my boys.
-What would happen if something happened to my husband and I?
-What do we want the future of the boys to look like, period?
-How can we influence changes now that will positively affect their future?
-What about financial obligations and benefits for the boys as they age?
These are huge questions, and they warrant huge answers. We approached them one at a time. The first several years of the boys lives were filled with a lot of anxiety on our part, and uncertainties. There were numerous nights with little or no sleep. One reason the sand man would not grace us with a restful night was the fact that we worried about "unknowns". One of those was, what would happen to the boys if something happened to us? Well, after many years of worrying about it, we decided to do something about it.
In all honesty, the whole idea of doing a Will stemmed from an invitation for me to speak in Paris, France. What an opportunity! My husband wanted to go, but could not face the idea of leaving the boys. We talked about it and decided that some resolution could be achieved by doing a full Will and Trust. We researched and asked other families about an attorney in our area. Soon after, we met with the attorney. He asked us to complete a full packet of homework, including naming who would be the boys' guardian and who would be the trustee. The best piece of advice that this attorney gave us was "This is modeled using information from today. Do not think about 10 years from now because we can always modify the document later on. Complete the information based on what you know today." This was VERY helpful information for me because all I worried about was later! How could we possibly predict the future? We couldn't! In the end, we created a Will to take care of our immediate issues, then we created a Special Needs Trust that would protect the boys' benefits offered by the State. Naming a trustee puts any materials or financial posessions in the trust and not in the boys' names. The trustee is responsible for alloting money to requested things, and keeping track of financial assets. We could have named a bank or other institution, but we personally named a group of 4 people in succession (if one has passed away by the time it's needed, then it moves to the next person). Then we named a Guardian. This person would be responsible for the day-to-day care of the boys. It doesn't mean they have to be the one to do the hands-on care, but they are in charge of whoever does. We decided to also follow the 4-person structure for that responsibility. We obtained permission from each and every person named, and made sure they felt comfortable with this responsiblity.
One fairly unusual thing that we also did all those years ago, was to decide that our current house would be home-base for the guys. When we learned that there is a waiting list of more than 18,000 people in the State of Colorado for housing options, we knew we had to do something independent of that. So, we made the house part of the Trust. Over the past 20 years we have worked little by little to develop a list of physical things that we needed to modify in the house, and we've plugged away at making those changes. Today, we still have a list, but it's much shorter. As the boys grow we are more able to see how they use each space and to know what they are capable of doing on their own. It is also more clear now on what things they will need assistance with. This has really helped with detailing their adult plans to fit their needs.
Most recently, we installed a fence around the entire property with a key-code lock. This lock can be uploaded to a laptop and one can see who is coming and going according to individual PIN numbers assigned to every person. This will be especially helpful when we are not in the home anymore. From a remote location I can log in and see the activity into and out of the house. Another nice thing we did was to install a thermostat controlled water heater. The controls are in the main bathroom so that whomever is doing the "setting up" for shower time can adjust the water temperature to one son or the others' preferences. We have made numerous other changes. It is our hope that when we retire, we can phase out of the environment and another person or persons will phase in.
All of these decisions were difficult. All of them were full of worry. But, in the end it has allowed us as parents to sleep well knowing that, no matter what, the boys will have a place to call home and the means to live there. Being proactive is so empowering!!! Here's to a good nights' sleep!!!!