I’ve been thinking about this story for a little over a year now. It has taken me time to digest and process that my son is an adult man, yet in my eyes, this blue-eyed boy will always be a child. And I don’t say this because he has Down syndrome or because I think he’s sweeter or touched by the famous chromosome that many attribute with infinite love. I say it because he’s my son, and that’s how parents love their children, regardless of the labels we choose to attach to them or allow the world to place on their foreheads.
And I begin with this question of whether you celebrate or get frustrated when your children tell you no or have different opinions because for 18 years, I made decisions in his life. I chose his food, had an influence on his style, and definitely shaped the part of his personality that was influenced by my parenting style, one that I learned through trial and error and with a lot of consciousness and effort. Because before becoming a mother, I didn’t know how to be a mother, and I never pretended to be a good mother until I committed to becoming the best mother possible for him and for her, my daughter.
It’s a mix of emotions because with typical children, you expect typical things, and with children with Down syndrome or any other diagnosis, you preach your whole life that you’re working to build these moments. But when they finally happen, you can feel a bit confused because, whether we like it or not, deep down in our hearts, we often feel that we know more than they do. I’m not generalizing, of course. I’m describing my personal feelings, and undoubtedly, there are millions of stories that don’t resemble mine, and parents who don’t feel the way I do.
But, getting back to the topic, over a year ago, exactly six months before Emir became an adult, we both talked and decided together to go for guardianship advocacy, which is a support guardianship that essentially puts me as his guide and legal support for decision-making in adulthood. There are much more intense options that give parents absolute guardianship, and parents retain complete power over their children’s decisions. But in this case, he is legally considered capable of making decisions and gives me permission to intervene.
Getting here was wonderful for me because these options didn’t exist before. It wasn’t a big deal for him, but he chose me, which I think was obvious considering that I’m the person who has always taken care of everything related to his medical and educational plans. And the big day came to meet with the lawyer before the appointment with the judge.
We both prepared to look good on camera because we were still in the post-pandemic era, and everything was still online. When the session started, the lawyer asked me to leave the room because it was a private conversation. I stepped away from the camera and stood in the background. The lawyer repeated that I should leave the room, and well, I had to leave.
Emir was very relaxed and confirmed his choice and had a brief conversation according to his abilities with the lawyer. On the day of the appointment with the judge, the lawyer confirmed that his client chose his mother and recommended that I be given the authority to support him in decision-making. And so it was.
Anyone would think that this wouldn’t change anything and that everything would stay the same, but everything changed, and Emir’s first demand as a self-sufficient adult was completely unexpected but at the same time very logical. He let me know that he had decided to eat in the school cafeteria and that from now on, he would have breakfast and lunch at school. Suddenly, my high-nutrient, organic, sugar-free, and gluten-free diet crumbled into pieces. I asked him if he understood that nutrition had been key to keeping his skin challenges and allergies under control, and he replied, “Let’s see what happens.”
It’s been over a year, and I’ve been learning all this time to stop assuming and to consult and confirm with him before speaking on his behalf. It has been an empowering process, and although he is still my little boy, he is actually a self-assured and incredibly self-sufficient adult. His initiative is the foundation of his success as an individual, and it’s what makes him shine and feel fulfilled.
We’ve dealt with changes in his skin and adjusted his allergy medications. He uses his creams and oils regularly. There have been adjustments, and it doesn’t necessarily mean that things are more difficult, just different. The other day, he woke up with a series of red hives, and I told him we needed to rethink his diet. He looked me in the eyes and said, “Really?” and it truly made me look at myself and realize that it’s not necessarily related to his diet but to the fragments of control that are still stuck within me.
Are his decisions the best in the world? Well, I don’t know, but every time this question arises, I self-question myself, “Are yours the best in the world?” And then my mind says, “But he’s different.” And then it returns to the tranquility that replies, “And so are you.”
