35th Anniversary Edition
A Journey with Grief
Patxi takes a break from a rugby game.
Beginning about eight years ago, we had a series of deaths in the family that really affected Patxi. I didn’t realize it would be such an impactful emotion for him and he’s coming out of it now, but it has taken this long to find the resources to help. Trying to find a grief therapist and a psychiatrist took a long time.
My mother died, then my brother-in-law. Patxi saw my mother decline due to illness, but my brother-in-law died suddenly from a heart condition and Patxi didn’t get to say goodbye. Later, my father moved back to Panama and my daughter went to college, so those were losses, too. And two years ago, we lost our dog, Bosco, who we had for 13 years. Patxi was extremely close to his grandparents. They lived with us and before we moved to Washington, D.C., they lived next door. My mother would read to him in Spanish every night. He’s now 20, and is in a special education environment, no longer the inclusive education he had through 8th grade. He’s doing well and his teachers just got him a communication device that he’s taking to. We’re still learning, but we’ve already seen him express his emotions a little more. His personality is coming out again. Already in that funk of grief, he had a really difficult time during the pandemic, but he’s getting out more now and participates on a unified rugby team and goes bowling and takes acting classes. Those all help with social interaction and emotional regulation.
We’re looking at some college programs, day programs, and some employment possibilities for the future. Moving into the adult system of supports has been a challenge and we are hopeful that with his assistive technologies he’ll be able to move at the pace he needs.
Following Patxi’s Lead: A Child-Centered Journey of Learning and Language
Excerpted from Impact, 2013
By Monica Sanjur
My son, Patxi Uy, was diagnosed with Down syndrome two days after his birth. He confused the medical staff by passing his Apgar tests and breastfeeding right after birth. It wouldn’t be the first time he was underestimated. Our family’s journey to find the right educational setting that would nurture Patxi’s abilities has been a long road. In addition, the external limitations that he has faced as a child with a disability growing up in a multilingual environment has had its challenges. Fortuitously, our path led to a public charter school in Washington D.C. that meets his needs and more.
My husband and I are immigrants. We negotiated two languages and served as interpreters while our parents learned English. My children are growing up in a multi-ethnic home. They hear Spanish, Tagalog, and English on a daily basis, however, Spanish was their first language. And, in the case of my son, he learned it simultaneously with basic American Sign Language to convey his needs.
Patxi received early intervention speech therapy and immediately we faced resistance to the use of two languages. Based on his perceived cognitive limitations, professionals felt it was “too much” or “too confusing,” and that we should create an “environment for success.” This reasoning did not concur with information I had based on current research that emphasized an inclusive attitude in the home as key to creating an environment for success. The child with Down syndrome should not be excluded from activities and habits typical to the family. Our expectations were very clear. We expected Patxi to communicate with his extended family. Coming from a bilingual upbringing, we understood the cognitive advantages this choice could provide our son. Language was not up for negotiation.
We sought professionals who respected our choice and would work with us on our terms. And Patxi flourished. He was an engaged, emotionally connected infant with speech delays who responded with basic signs to requests in both Spanish and English. His first words were in Spanish, but he was cognizant of the other languages in his world. His awareness of languages was built around the relationships he had with his important people. He played with his father in English, addressed my parents in Spanish, and babbled Tagalog sounds with my mother-in-law.
This came to an abrupt halt when he started school. We struggled in the first private preschool, but he advanced. At three, he started to read a few sight words and recognized consonant-vowel-consonant word patterns. Then he stopped. Stopped learning, stopped connecting, stopped communicating, and the anxiety started. His first two private preschools failed to meet his needs; he attended the special education public preschool, then two special education kindergarten classes. By age five he had been to five schools. Displaying significant regression, he didn’t connect to peers and had lost interest in learning. The school assessments were devastating, especially the psychological evaluations, casting doubt on what I knew as Patxi’s mother. I admit, it got to me and I stopped speaking to him in Spanish.
In his second kindergarten year, we insisted on inclusive time in the school’s dual language program. One hour a day in that setting sparked his interest. However, Patxi was removed from the dual language program after his first-grade year. The IEP team’s decision to change his placement from a dual language classroom to a co-taught classroom (an English-only setting with a general education teacher and a special education teacher) drew on the belief that he would have greater access to the curriculum with the concentrated support available in this setting. Patxi would lose a language in order to get services.
Patxi’s co-taught class underwent six staff changes. The inconsistency amplified negative behaviors and he became self-aggressive. A placement that had not been fully developed, staffed, or conceptualized had huge repercussions for Patxi. He donned a coping attitude, which we called his “stoic mask:” non-verbal, glaze-eyed, non-compliant, and when challenged too far, disruptive, or combative.
Independently we researched other avenues to access learning. Then we started Floortime™ sessions at a therapy center and, almost immediately, we saw increased interaction and communication. Floortime™ meets children where they are and builds upon their strengths and abilities. During each session you follow the child’s interests, strengthen an emotional connection, and then challenge the child to be more creative, which promotes intellectual and emotional development (see http://www.stanleygreenspan.com/about-floortime/ ).
Sanjur-Uy family.
Coincidentally, at that time we also learned of Creative Minds International Public Charter School (CMI), a newly chartered school in Washington D.C. that intended to apply Floortime™ to its program and that was opening in fall 2012. CMI’s mission is “to offer students a rigorous education plan that provides them with the skills required for successful participation in a global society” (see http://www.creativemindspcs.org ). CMI was designed to be inclusive while implementing the International Primary Curriculum, which uses 6-8 week curriculum units that are thematic and combine several subjects in project-based, art-infused activities, with language instruction and cultural awareness.
We uprooted from our Virginia suburb and enrolled Patxi in CMI to great success. The thematic units extend instruction of subject matter, which provides more repetition and review – something Patxi needs to acquire new material. Also the presentation of information in diverse arts-infused forms afforded him non-threatening access to the curriculum. But, the major success in reaching Patxi is the wholehearted belief in the Floortime™ child-centered approach.
It was fundamental that Patxi feel not only comfortable in his environment, but also feel that his choices were valued and heard. When given ownership of his school day, Patxi felt safe and nurtured, and he was able to take ownership of his learning.
Music and movement have always been favorite activities for him. So, songs are built into his day, with proprioceptive activities for awareness of his body positions (for example, jumping on a trampoline) and vestibular activities for awareness of movement and direction (for example, swinging) to help him regulate as well as address several of his needs. Songs help with memorization, sequencing, articulation, turn taking, and creativity. Patxi receives language instruction three days a week. Maria Alejandra Rivas, the Spanish and drama teacher, quickly understood that Spanish was an area of strength for him to draw from. She perceived it as not just a comforting reminder of home, but also a place where he can shine and feel confident among his peers. Spanish-speaking adults at school speak Spanish to him throughout his day. Finally, true home/school collaboration and communication exists with additional support through school-produced blogs and newsletters full of curriculum information, materials for home, and pictures and videos of the school day.
For the first time in his young life my son enjoys school. And he can tell me about his day, and has made meaningful human connections outside of his family. Every day his communication becomes more descriptive and engaged. He is willing to challenge himself. I see the boy I knew and I speak to him in Spanish again.