Jude attended college with his revised 504 Plan accommodations and executive functions coaching access. We worked together to have these set in place, through his college disability department. He drives. He manages his own bank account. He has a rich social life.
My brother is twenty-seven years younger than me. Jude was born four months early via emergency cesarean section, weighing in at just over one pound. He started life as a special-needs child who was developmentally and physically affected in many areas. He was in the NICU (Newborn Intensive Care Unit) for the first three months of his life. Afterward, he continued to be administered medications and treatments for his impairments. He was protected, nurtured, supported, and accommodated by a village: his mother, his father, and his adult sister, me. Subsequently, when he was eleven years old, his mother died after two years of rehabilitation with intensive medical treatments, physical complications, and living struggles post stroke. This left my father and me and him now with this huge gap.
He was accommodated at home and in school for acute asthma, executive function disorder, and dysgraphia. However, his emotional needs weren’t being met all the way, without long-term counseling and therapy. It was like any counseling or therapy was taboo. I could see that he needed interventions. My brother knew that he needed help. He was suffering and depressed. This manifested physically with his dramatic weight gains then dramatic weight losses over the years. Another way is that he would hide food everywhere and then lost his appetite. He was self-starving and extremely thin much throughout his youth. He was grieving and mourning. It was impacting his self care and his academic achievement. Yet our father couldn’t accept that outside counseling was needed for Jude as even he slipped into his own depression and medical issues following the loss of his wife.
The severity of our aging father’s medical issues meant that Jude, now a teenager, needed me to intervene as much as I possibly could. So, here I was with a multi-exceptional, gifted family of my own, knowing full well that if my father died, I must take in my brother. I actively tried to help and work with him during his life as a high schooler. His transition from an adolescent to a teenager was challenging given the huge loss of his backbone and biggest supporter and best friend, his mother. We not only talked; we spent time away, leisurely, to just be.
I would visit him at their home, with Dad present during some of those occasions, to go through his backpack and homework assignments. Dad paid for him to receive tutoring help from places like the Sylvan Learning Center, and he would receive free after school help with peer students and his classroom teachers. Still, his weaknesses impaired him in the areas of memory, planning assignments, tracking their due dates, completing and submitting them on time, and organizing his tasks in ways which could help him help avoid the cycles of missing assignments.
Dad would have to regularly meet with his school counselors and teachers to obtain the missing and incomplete details. Then Jude would have to double down on his current assignments and those he would have to turn in late, time and time again. So, I took him with me to buy him several work planners; together we would weed through the loads of disorganized paperwork he brought home so he could make sense of his work timelines and track when his work was due. I also would pick him up and take him to my house so we could work on areas he needed help in such as reading comprehension, literacy, language arts, and writing assignments.
Jude not only amazed his teachers with his strengths, but he amazed me with his immense, creative artwork. He had amassed portfolios and folders of varied sketches, drawings, paintings, multidimensional and complex designs, and beautiful graphic art. His writing on paper was pronounced, but in an oppositional way: chaotic, untranslatable, and undecipherable.
He and I could discuss philosophy and writers such as Sartre and Nietzsche. He nailed down ideas such as existentialism, rebirth, life, death, faith, and spirituality whenever we had downtime together. We shared our perspectives commentaries on the asynchronous books and stories we had read.
The co-ed Youth Group meetings at church helped him further in his social skill weaknesses and to enrich and broaden his deep horizons. Up until then, he had had a core group of mostly male friends he had known since elementary and middle school. In this environment, he met creative, artistic, and talented peers with whom he could discuss spiritual truths, teachings, and complex life matters through the lens of adolescence and diverse family relationships. He even met his second girlfriend there. Yet, when it came to his written execution of serious topics, the output was a paradox of giftedness and disability. This affected him and lent itself to numerous bouts with imposter syndrome which he stills battles with today. Even he couldn’t make sense of the disparities between what he was thinking and seeing in his mind’s eye to how those same thoughts and visions could not translate legibly once he wrote them down on paper.
I took these years as fuel to advocate for him, but to also help him learn how to self advocate so he could grow to take care of himself physically, academically, mentally, and socially. I regularly lent him my ear, emotionally. I supported his intellectual gifts and disabilities. Therefore, he had begun to grow as himself and as a burgeoning, young, twice-exceptional man.
Now aged twenty-two, some of his work has been featured in art shows and exhibits. I helped him get published, as well. Jude attended college with his revised 504 Plan accommodations and executive functions coaching access. We worked together to have these set in place, through his college disability department. He drives. He manages his own bank account. He has a rich social life. He still has far to go in his adulting and the work, independence, self-sufficiency, and responsibilities which come with that.
Given the fact he spent his young life fighting to be understood, challenged by his maternal heartbreak, and struggling with adversity since he was a baby, I have to give him kudos and well-earned credit for making it this far in life. He has told me I am the closest version of a mother he has had in the eleven years since she passed away. That chokes me up inside knowing he has spent exactly half of his life with her and half of it without her. I stand by him indefinitely