I have to admit that I have mixed emotions about this day. I am so relieved we have done it, because now our son is protected; we can continue to do what we need to do for him without any legal conflict.
In reality, though, it involves a concession of sorts. It's an admission of defeat...in a way. After all, we are to raise our kids to be self-sufficient adults who can stand on their own in the world. We knew the day might come when we would have to provide legal protection for him in his adulthood because he could lack the judgment to properly care for himself, and I tucked it into the back of my mind while I frantically and desperately tried to help him prepare for that responsibility. We want, as parents, to think that is a realistic expectation for our "high-functioning" kids.
Sadly, we don't always have that control, no matter how hard we work to achieve it. A lot depends on our child's capabilities, resources, and our ability to follow through with recommendations and services, and some of it is just...how it ends up. I know my son has made tremendous progress, and his development is not done with him yet. I am often asked if I ever see him as being able to (fill in the blank). I have always said I don't know, but I hope so, because I have been assured by so many autistic adults that, at barely 18, he isn't even close to where he'll be in 10 years...or even one. I remember being the same way. I know we have different issues, but no one could have predicted when I was his age that I would be where I am in life now. I know better than to impose limits...but I also know how important--how crucial--it is to put into place proper protective measures to ensure he has the best possible chance at living a happy, healthy, productive life. I'm fortunate to be in a state that allows for a great deal of flexibility with guardianship; it can be as limited or as strict as is necessary, and it can be adjusted over time, according to his needs and abilities.
So, why is legal guardianship so important for a cognitively disabled adult? I wish I didn't have this story to use as an example, but it's a personal one, and it illustrates the need in a hauntingly frightening and convincing manner: I know someone whose 20 year old son thought his one shunt surgery in infancy had cured him. He got married. He went into shunt failure, and he died, because his wife had no idea what had to be done for him and why it was necessary to take immediate action. Because he was considered an adult in the eyes of the law, his pleading mother could do nothing. She had no legal power to do so. Believe me when I tell you how that has haunted me over the years, and how I came to realize how necessary it was to pursue guardianship as soon as possible once my son approached adulthood. I'm sure there are a lot of other equally terrifying scenarios, too. What if your 23 year-old has to have an infected tooth extracted and refuses? What if he buys a car and can't eat for the next several months because he has no more money? What if she falls in with the wrong crowd? These are all good reasons to have that power to make and enforce the necessary rules our kids may need as adults because they lack the judgment to avoid such situations.
Do all developmentally disabled adults need to be under legal guardianship? This is a delicate question and one best answered by asking yourself the questions above. Also, ask yourself if your adult child would oppose your seeking guardianship. Is there an "I'm 18; I can do whatever I want" attitude? I know a lot of "typical" young adults think this way and make mistakes, but most learn from them. If you know that your adult child lacks the ability to appreciate cause and effect--on any level--seeking guardianship is something to consider. Your child's doctors and a Guardian ad litem, appointed by the court, will help determine whether or not guardianship should be recommended. Any evaluations you have, especially a neuropsych eval, is also a good thing to have.
Lastly, how difficult is it to obtain guardianship? If your child is not objecting to living with you and having you oversee all aspects--or even just certain important aspects--of his life, and if the doctors and Guardian ad litem are in agreement, it shouldn't take much time. At our hearing, once it started, we were in and out within minutes. It also depends on all the above factors I just mentioned and how busy the court is, but hearing from the court within a week or two of the hearing is typical unless there are complications.
What complications can arise? If you or your spouse/significant other has a criminal history of any sort, you may have to go through additional screening. There is a background check to determine prospective guardian fitness and ability, but it's generally easy to pass if you have lovingly cared for your child and obeyed the law.
Last bit of advice: Breathe. I was so sure it would be a grueling process. It has not been, and if you are doing it, the court will likely see it as an indication that you want the best for your adult child. This is a legal step that is often necessary, but it feels good to have done it, too, because we can keep doing our job as parents, helping our children live their best possible lives.
