Age 18 seemed so far away for so long for my firstborn. Yet, a few months ago my daughter blew out 18 candles on her birthday cake. The banner behind her declared her 18th birthday as well, in case I needed another reminder. This birthday marked her change from childhood to adulthood.
Though an adult, my daughter needs help with her many medical interventions each day. She requires assistance showering and with other typical daily activities. She likes to shop and hand money to the cashier, but I have to help her throughout the buying process. She’s an adult by age but not mentally.
At 18, she sleeps with her four baby dolls, which are all named after her favorite cousins. When we watch movies featuring young children, she will often point to the child and say, “That’s me!” It seems she still pictures herself as a youngster. Honestly, it’s hard for me to picture her as an adult too. I have taken care of her for so long. Not only that, but she’s also short and looks younger than her age. Still, her age required me to look at her differently, whether it was easy for me or not.
In preparation for her transition to adulthood, my husband and I pursued guardianship with a lawyer through our local court system. During our guardianship process, I learned my husband and I had to take an online course. When I first heard about it, I was aggravated. I have been raising my daughter for 17 years, and I did not see the point in the class. I thought that nothing would really change in the process. It was just paperwork allowing me to do what I have always done for her. Little did I know the class would lay a much-needed foundation for me.
Image from @spantax on Unsplash
One thing the guardianship class stressed is that we should be making decisions based on what my daughter would want. In some ways, I already do this. I know her preferences in clothing, music, and free time. However, I do not know that my mindset has always been focused on my daughter’s preferences. As a wiser, more experienced person, I have often made decisions based upon what I think is best and my own opinions. The class made a point to specifically say guardianship and parenting are two different things.
A couple of weeks after turning 18, I told my daughter that she needed to grab her coat for school. A short stalemate occurred. She didn’t want to bring her coat. Finally, I said, “You’re 18 now. I’ve told you what I think you should do.” I gave up the fight knowing that she wouldn’t freeze. Guess what? The next day, she wore her coat when I offered my humble suggestion. This is a relatively insignificant example, but it’s one that shows how I am trying to let go a bit.
The switch that occurs at age 18 is something I am still adjusting to. I’m no longer just her parent; now I’m her guardian. Not only do I have to consider more carefully what my daughter wants, I do not have the same rights that I have had for all her life. This was evident the first time I took her to the doctor as an adult.
The receptionist at the clinic window asked, “Do you have guardianship of her?” This was followed up by, “Do you have a copy of the paperwork with you?”
Though nothing really changed at home. She’s still in the same house with the same routine. Her life hasn’t transformed much after turning 18. Yet, on paper it matters to all the agencies and offices. Now, I carry a copy of the paperwork in my purse. This came in handy when I had to rush her to the emergency room when she recently developed pneumonia. I was ready to present my papers in order to help guide the health care personnel to the right decisions for her medical emergency.
With only a few months under our belt with an 18-year-old with a disability, my husband and I are trying to navigate our way through the proper way to be a guardian for our daughter. We do not want to squash independence when it can be developed. We also do not want harm to come to her when it’s in our power to prevent it. We have loved her since day one and want only God’s best for her. We’re now trying to figure out how to do ensure she does have her best life while we are helping in the shadows.
Our minds have been programmed for years to take care of our child. It has not been easy to flip that switch and see her as an adult that she has grown to be. We’re trying to learn our new roles. It’s going to take some time to do it well. However, we can be assured that God will be with our family as we carry on with this new phase of life.
Evana is a wife and mother of two children. Evana is a pediatric speech-language pathologist and serves children with autism, feeding disorders, and other developmental delays. You can connect with Evana on Twitter, Facebook, and her blog, A Special Purposed Life. You can also read more about her family’s story in her book, Badges of Motherhood: One Mother’s Story about Family, Down syndrome, Hospitals, and Faith.
Source: Special Needs Parenting- Key Ministry
