“I think it’s normal for most siblings to fight over silly things. For Megan and me, we fight over whose lap Mark gets to sit on or who gets to give him a hug first when he comes home. While most kids our age are normally spending time with their friends, the normal for Megan and me is to drop off, pick up and take care of our brother.” – Michelle Puthota, 21.
Michelle is referencing her sister, Megan, 16, and her brother, Mark, 9. Her sentiment would be touching in any circumstance, but it is even more heartwarming when one realizes that Mark has autism.
Mark, who requires 24-hour-a-day care and support, lives at home with his family and is supported by The Moore Center’s In-Home Supports (IHS) program. He receives assistance and training with basic daily living skills, such as communication, socialization, health and personal safety, and physical functioning. Thanks to IHS, Mark’s parents, Josephine and Thomas, are able to hire companion sitters they have selected to care for Mark when they are at work. According to Josephine, those sitters include two people she selected after a thorough search process, as well as her two daughters, who can be paid for the care they provide through the IHS waiver. And while the money certainly is helpful to the family, Michelle said she and her sister are simply happy to help.
“To be sisters of a child with autism means every day is crazy and stressful, but Megan and I couldn’t have asked for a more loving, adorable and handsome little brother,” said Michelle.
According to Josephine, she started to notice delays in Mark when he was about a year old. He was diagnosed with Pervasive Development Disorder when he was two, and he started receiving Early Intervention services through The Moore Center at the day care. A short while later, he was diagnosed with autism. “The word ‘autism’ was new to our family,” said Josephine.
Amy Tremblay, senior IHS family manager for The Moore Center, coordinates Mark’s program. She is the family’s contact person within the program and has oversight over home and community safety, personal care and community mobility. Amy said the Puthota family is always looking to do what is best for Mark and what will provide him with the highest quality of life. Being able to have family involved in his care is certainly wonderful, she said. “Mom is a great advocate for Mark,” said Amy.
Josephine returned the compliment. “Amy is one of the most compassionate people I’ve ever met. I can approach her with any questions and concerns and she gives me the impression that Mark is her only client, which I certainly know is not the case!” She praised The Moore Center’s staff and encouraged others who might need similar assistance to reach out to the agency for help – something she herself initially found hard to do. Having moved to the United States from India 20 years ago, she said, “Because of our culture, we were always hesitant to ask for help.” In fact, when The Moore Center first offered her assistance through IHS, she turned it down, hesitant to seek assistance, and not knowing what it would entail. She is certainly glad she changed her mind.
“The Moore Center knew exactly how to help Mark. It was amazing,” said Josephine. “I used to think that only families with special needs children understand what we go through. I have to say that The Moore Center understands us, too. I don’t have to explain a whole lot to the staff at The Moore Center. They get it. They get what we go through and what we need.”
Josephine said not only was the agency able to assist them with additional funding for Mark’s care and for activities such as his swim lessons, but perhaps as importantly, they provided a sense of relief and of knowing that they could hire someone they trusted and who would always put Mark first. And the benefits went well beyond just Mark. “In-Home Support Services has improved our family’s quality of life,” said Josephine. “My own quality of life has improved as I am able to take time for myself, something that was impossible before. I want to be healthy for Mark, and The Moore Center is allowing me to do so.”
The Moore Center is also allowing Mark to reach goals set by Josephine with the assistance of Amy. Said Josephine, “Mark works really hard on achieving his goals. I never realized that teaching a child to brush his teeth can take more than a year, but he is making progress.”
According to Josephine, raising a child with autism is not easy, but with the support of family and the assistance of organizations such as The Moore Center, life can be wonderful. “The Moore Center is there when I need it the most. I can always rely on them,” said Josephine. “The Moore Center is going to be part of our life for a very long time.”