I laugh now, but at the time it was terribly traumatic. My son, Daniel, was days away from turning age 18. Guardianship! The issue was here; there was no more time – or so I thought. My husband and I had known for quite some time that our youngest son, diagnosed with autism, would need extra support and help during his adult years. Unfortunately, I had not listened to and taken to heart the advice of others that told me I needed to go to court to obtain guardianship. I was shocked to hear this – what foolishness! Or so I thought at the time.
After all, I am the mother. So, I did nothing, believing in my complete and eternal rights of parenthood.
Then, right before my son turned 18, I finally started to research guardianship in more depth (as time allowed). What a surprise I had! I had been wrong about everything I thought I knew about guardianship. Yes, I did indeed have to file papers and go through a court process. Yes, the court must first declare your child “incompetent” before a guardian can be designated. And no, considered alternatives to guardianship would not work in our situation.
While scrambling to get the proper paperwork done, I was shaking in my boots because I really wasn’t sure how to proceed. I dutifully filled out the application and necessary paperwork for guardianship and tentatively turned this in to the special proceedings division court staff. The staff were helpful and nice; they provided me some directions and patiently explained parts of the process to me. However, as they repeatedly pointed out: they do not give legal advice. In fact, they are forbidden by law to give out legal advice.
For many parents, the decision to consider guardianship is an emotional and troubling process. The word incompetency itself is a legal term that must first be applied to your loved one. This harsh word is often a huge barrier to many parents when considering their options. No one wants to think of or so label their child in this way. Many other states use the term incapacity, but incompetency is a legal, not medical, term that NC courts use. This term is determined only by the judge in the guardianship hearing – not by the parent, the medical provider, or any other professional.
The staff, once my initial documents were accepted, assigned a hearing date along with a guardian ad litem (GAL). The GAL, an attorney, acts as the advocate for your child during the guardianship process if you do not have an attorney of your own. As I saw my paperwork cross the clerk of court’s desk with all the different boxes checked (Guardianship Capacity Questionnaire) and information written out in black ink explaining all my son’s limitations and challenges, a very strange thing happened. Seeing it in stark print was different than just “knowing” it. The finality of it suddenly hit me and I burst out crying – buckets. I was so absolutely floored and embarrassed by the sobbing sounds that I could not stop. My reaction actually surprised me far more that it did the staffers around me. I am not one prone to cry in public, though I will admit to shedding a few tears while watching Shirley Temple movies.
How could this be? I was well-versed in my son’s challenges. I had homeschooled him for a few years and knew exactly what he was and was not capable of at this point in his life. I had gone through umpteen IEP meetings in the public school setting and attended other goal-setting plans throughout the years. But the emotions that welled up and spilled out in tears were gut-wrenchingly similar to the emotions I experienced the day I heard my son’s initial diagnosis of autism. I was absolutely not expecting or prepared for that. The staff kindly handed me a box of Kleenexes and shared warm words of encouragement and kindness, and then I was through the first part of the process.
Later, the assigned GAL visited our home. Each time she asked my son a question, such as, “How are you?” and “What do you like to do?” Daniel would then turn, look directly at me, and ask, “What do I say?” Our interview concluded shortly afterward.
After a week or so, a sheriff’s deputy knocked on our door one morning to serve my son a copy of the guardianship petition and notice of the impending guardianship hearing. Daniel did not understand the significance of the papers handed to him. While I tried to think of how to explain this situation to my son, the young officer spoke up and said, “This is a way your mom is trying to help you.” That satisfied my son, and the officer then shook Daniel’s hand and went on to his next duty call. Immediately after the patrol car left my driveway, I got several phone calls in succession from excited neighbors. They had seen the police car and were worried someone was sick, or we had an emergency of sorts or maybe I had turned outlaw.
Life is good. I still work on building skill levels and providing opportunities for my son. Daniel makes his wishes known about his life as much as he can manage. He has the support and love of his family. Although his life’s path has not been one of total independence like his siblings, he is an amazing young man: talented, hard-working, and a blessing to all our lives.
Here is what I have learned from the experience:
- Do your research.
- Don’t assume.
- It’s not just our kids with disabilities who must learn to get comfortable with being in uncomfortable situations.
- Even if you don’t have all the details and answers, you can get through it.
- Guardianship does not happen without a court process.
- The earliest you can start the adult guardianship process in NC is when the individual is 171/2 years old.
- Documents for guardianship are now available online or you can request a packet of all the necessary forms from the court.
Learn more
- Call or email an Autism Resource Specialist for more assistance
- Watch ASNC’s online webinar: Guardianship: What You Need to Know
- Read the article Is Guardianship Right for Your Child? on pages 6-7 of the Spectrum magazine, summer 2016
- Read the guardianship materials from Disability Rights of NC
- Read about the responsibilities of guardians in NC
Jan Combs can be reached at jcombs@autismsociety-nc.org or 919-865-5081.
Tags: ASNC, autism, autism advocacy, autism asperger parenting tips, autism guardianship, autism resources, autism society north carolina, autism society of NC, Autism Society of North Carolina, Autism spectrum, Autism Spectrum Disorder, Autism Spectrum Disorders, autism support, guardianship