We are visiting the very last house at the very end of the very last road in this remote campesino community. Secure locks are in place on the gates, not because there is anything of value inside to protect, but to deter the two special needs sons living inside from getting out. Fear in the community ostracizes the family and excludes them.
Road back into campesino community
The 19-year old and 21-year-old non-verbal sons are “on the spectrum” or what we used to label as severely autistic. They have been excluded from school their entire lives, excluded from any interventions such as speech or behavioral therapies. Their parents have never received any support on how to parent them or manage their care, nor have they ever received any respite care for themselves.
Consequently, these men have grown up physically without ever learning to communicate or deal with their frustrations. They become aggressive toward one another. They have wandered into the community on occasion, frightening folks who do not understand people with special needs.
Their parents wish to participate in church but must take turns in order for one to remain home with the young men at all times. There are girls in the family also. We talk with the beautiful, petite woman with twinkling eyes and smiles, their mother. She is so appreciative of the young pastor assigned by the Lutheran Church who comes weekly to lead the church worship service and pastor its members. He has shown understanding and compassion and has even used his own funds to help the family construct a separate living area adjacent to the house where the young men can comfortably be trusted to stay overnight and for short periods when needed. They like having their own space. On his weekly visits to the community, this pastor builds Legos with the young men, which they enjoy, as he builds a relationship with them.
Community worship services were once held here
I think about all the therapies and techniques that these two men would have received in the U.S. if circumstances were different and they had been born here. No doubt they would have been involved in early intervention programs as soon as they were identified – at least by the preschool level. No doubt a speech clinician would have used sign language and/or a PEC program (picture exchange communication) to help them communicate, which greatly reduces behavioral issues. They would probably be speaking by now or using electronic devices to communicate. Likely they would be enrolled in some kind of job training and perhaps living in group homes under minimal supervision. The fact that the special needs are not provided for in the Salvadoran educational system at this time robbed these boys of a future. Their family is burdened with their care and receives no support.
I ask about the availability of group homes or care facilities in the country for special needs folks and am told there are very few. Although there are psychiatric facilities, these boys do not fit that criteria. I am told there is a facility for challenged young people in San Salvador which will extend the care when they become adults. I have not checked to verify this hearsay.
At any rate, the family must devote their lives to caring for these two difficult young men who grow older and more difficult to handle. Their community probably feeling helpless and ill-equipped to know how to help them shuns them. What we don’t understand we tend to avoid.
The country is only beginning to address its educational issues for regular education students who attend classes only half days. It may be years until the rights of the special needs students are addressed. I remind myself that even in the States it wasn’t until the late 60’s and 70’s when the state institutions and state hospitals were opened and care of patients became a responsibility of the local care providers that communities were forced to find options within their jurisdictions to serve the diverse needs of those who had never before lived among them. It has been a growing and learning process for all of us to accept, treat, educate, and give dignity to an unfamiliar group of people with diverse, unmet needs.
Without sidewalk curb cuts, persons in wheelchairs are forced to be among heavy traffic
In the meantime, our pastor friend is setting a fine example for the rest of the community. He visits the family, finds ways to interact with the young men while giving the parents short breaks, finds ways each parent can participate in church, and provides a safe environment for the men.
What we don’t understand, we become skeptical of and shun away from out of ignorance. Learning to live with those with challenges is a process for all involved. It takes much time and patience.