“I mean it’s been life-changing. It’s hard to not say that without tears. It’s been that amazing for our family and for him.”
Christine and Stephen Jack have been involved with the Aces for Autism community for four years, after entering their adopted son Jose into the program.
Now fifteen, he was adopted from Guatemala at the age of two. His parents had been told something was different about Jose when doctors first thought he had cerebral palsy.
“We showed the pediatrician the videos that we had, and she called us one day and said that her colleagues and her thought it was worse than CP. I said ok good we’re still going. She said I’m not trying to change your mind. We got on an airplane and went.”– Stephen Jack, Jose’s father
After realizing the severity of Jose’s condition, they moved from West Virginia to North Carolina. There they worked with a team of UNC doctors to figure out a diagnosis.
After multiple genetic tests, the doctors determined that Jose is missing two one-hundredths of a chromosome. This puts him as one in ten children in the world with this kind of disorder.
Although working with Jose proved to be challenging at times, his diagnosis was a breakthrough for the family. However, where they lived proved to not have the proper treatment that he needed.
“We were just winging it. Trying to make it through life, trying to understand him, and him understand us. He was just an emotional wreck. So one night I just got online and I just thought ‘lord lead us to something seriously’, and ACES for Autism was just like the first thing that popped up.”– Christine Jack, Jose’s mother
Jose and his parents began traveling to Aces three times each week, putting in over 6 hours of driving, and 300 miles to get him the help he needs.
Since starting at Aces, Jose can now calm himself down, is using more words, is more self-sufficient, and understands social cues and boundaries.
His mother spoke of his achievements stating, “When he first started at ACES like I said he was kind of all over the map. Always wanting to hug and grab people…sometimes inappropriately like around the legs. So now he’s learned now you ask, and if you do hug it’s ‘3,2,1 back off’. He’s learned his boundaries and his level of understanding. You can sit in a room, you can watch him, and he can somewhat follow conversations…he kind of gets it. If somebody makes a small joke sometimes, he giggles. I mean it’s those little profound things.”
Jack’s family says they hope by continuing their work at Aces, Jose will eventually live a somewhat independent life.