I was there once. When my first child, Emir, was born and his diagnosis of Down syndrome confirmed, my initial reaction was to learn as much as possible, attempting not to miss any opportunities to help him grow. Three years later, when my daughter Ayelen was also diagnosed with Down syndrome at birth, I learned the most fascinating lesson: I learned to unlearn. Thus, I learned to see my children as individuals, focusing on their unique personalities instead of the typical prejudices that, twenty years later, still prevail, telling us who our children are and what they are supposed to become.
I used to believe I needed to know everything about the diagnosis so I could be ready to address any situation promptly. I believed that the more I knew, the better I would handle challenges. I believed it was a never-ending fight to overcome external limitations and prejudices, until I realized I was also fighting my own.
It’s interesting to look back and realize that I once believed limitations were solely societal impositions placed on my children, limiting their opportunities to belong and learn. I didn’t realize that the limitations were also my personal impositions to make them achieve my goals. Everything I have done for my children has been, without a doubt, out of love, but let’s be honest: love also makes mistakes.
Now, at this point in my life where I feel wiser and more centered, my children still surprise me and remind me of the importance of unlearning to relearn and accept. Emir is graduating next year with a regular diploma as the first student with significant disabilities fully included in a regular classroom. Watching him grow, overcome, and find his place has been amazing. He opened the doors for Ayelen, who is following behind. However, this is where unlearning takes place. Ayelen isn’t interested in following Emir’s steps. She wants and needs a different placement, where she can spend more time in a smaller setting with more supports and less pressure. She doesn’t care about grades or a regular diploma; she wants to have real friends—her classmates are not her friends.
After discussing her struggles with the school team, we agreed that she would spend 40% of her day in the special education classroom and the rest in the regular classroom. She is thrilled about this, and I will be honest: for someone who has dedicated her entire adult life to fighting for academic inclusion and appropriate supports, this is a tough pill to swallow. I can’t blame the system, complain about her teachers, or most importantly, diminish or ignore her decisions and needs. So once again, I had to unlearn to open my mind to relearn and open my heart to accept that I’m not in control, her happiness comes first, and she knows what she needs and wants.
I’ve been thinking a lot about this, and gradually, I’ve started to get excited about it. I want to see how things go because I trust her, and also because I know that by unlearning and relearning and challenging my own belief system, I am growing, evolving, and moving at the pace and direction she wants to go.
