Imagine crying yourself to sleep at night and leaving your child in the hands of strangers. How would you feel?
This powerful story from a mother takes you on an emotional journey of a family’s love and desperation, telling how Chileda has been able to offer hope and love to not only their little boy, but also the entire family.
I want to express to you the saving grace you have been for our son, Sean, and our family. Sean entered your facility on September 12, 2017 – a day forever etched in my memory! Hands down – one of the hardest days of my life.
We tried countless avenues to improve Sean’s Autism Spectrum Disorder (ASD). Sean is mostly non-verbal and as time went on, he became more and more aggressive and violent. Sean would bang his head repeatedly on walls, doors, windows, objects, etc. many times each day. We had holes in most of the inside doors in our home, several holes in the sheetrock walls, and he even put his head through a glass clock on our wall. At least once a day, Sean would attack a member of the family. We had countless black eyes, scratched corneas, bruises, bite marks, etc. We looked battered, which we were, but who would have thought it would be from our own 7-year-old son – or brother?
We employed many, many people and organizations to help Sean, and help us help Sean. I kept a spreadsheet listing all the doctors, psychologists, psychiatrists, therapists, teachers, etc. that had been involved with treating Sean. It became more and more apparent that something had to change. We could not continue on this path of destruction. We could no longer keep our daughter out of harm’s way, and she was terrified of her brother. She spent most of her time in her bedroom with the door locked. Our worst fear, to be separated from Sean, was seemingly to be the only way to implement behavioral change – according to the many professionals advising us.
I cried my eyes out for hours, trying to imagine Sean not living with us. How could we possibly “drop” Sean off somewhere and leave him? But that’s exactly what we did. We didn’t want to do it, but when our in-home staff refused to come to our home because of Sean’s aggression and violence, we felt we had no other choice. What was best for Sean and us in the long run?
From the first time I called Chileda and spoke to Terry (the receptionist), I felt a little more at ease. She was so kind and listened to me, answered my questions, and waited patiently as I tried to catch my breath through my sobbing tears.
The night before we were to bring Sean to Chileda, I didn’t sleep at all. I prayed that we were making the right decision and that the people we were entrusting to take care of our son were, in fact, “good” people. The staff at Chileda were waiting for us upon arrival and were very sensitive to the situation and our broken hearts. We toured the facility and found Sean’s bedroom and placed his clothes in the dresser drawers and played outside with him on their playground equipment, and left about an hour later. I was hoping I would die on the way home from a broken heart so as to no longer feel the pain. I feared he wouldn’t eat, or be able to sleep.
However, when we visited him for the first time two weeks later, he was happy to see us. He didn’t look the same, but he didn’t look bad. He wasn’t upset when we left. While I still cried all the way home, I was glad that he was still alive. Slowly the guilt over our decision gave way to encouragement that the staff at Chileda was better suited to take care of Sean, and teach him new skills to reduce his aggression and violence. It is very difficult to come to that realization as a parent – i.e., that someone ELSE is more qualified to take care of your child.
Sean has now been at Chileda for a little over 14 months. He is 9 years old. We visit him often. While the visits will never be like it was at home, we walk away knowing he is well-cared for. Quarterly meetings with the staff indicate he is improving and reaching goals. I am no longer completely anxious while being around Sean. I don’t fear that he is going to hurt me. For some time, I would ask that a Chileda staff member stay with Sean and I in case I “needed’ their help. I no longer feel this is necessary.
Sean is comfortable at Chileda. He knows the routine and he knows the staff. While the staff in his house work with him on life-skills, his teacher and aides in the classroom work with him on educational skills, and they all work with him on developing skills to better deal with his frustrations and redirecting inappropriate behavior.
All the staff at Chileda are exceptional. They ALL know Sean. We don’t know all of the staff, but they know, and LOVE, Sean. They see the funny things Sean does and his little tricks. He wants their love and hugs, and they are happy to give them to him. What more could we ask for right now?
Friends of Chileda, I often refer to families like the one in this story as the “invisible people.” Kim’s family, like many families who have children with severe ASD challenges, live behind closed doors wishing and praying for someone to help. Many lack support systems to help and many live in isolation because all of their time and energy is spent trying to care for their child.
Chileda serves children and families who are often desperate for help. We provide hope when there seems to be none. We provide answers when there seem to be none. We provide support when there has been little.
In 2019, we would like to take a next step in our care for each family, improving each family’s experience when they visit our campus. Our current family visitation area lacks in size and hospitality. As you read Kim’s story you can imagine how important each visit can be for a family. We are planning a $90,000 renovation project to improve our building to better meet the needs of our families and create a safer and more hospitable area. This Christmas, would you please consider a gift to help us better serve our families?
We want to create the best possible environment for families like Kim’s and do our best to create a home away from home for each child.
Derek Cortez, PhD