Rohan

Parents of “Rohan,” a 13-year-old boy with severe autism, describe their journey toward a special education residential school when he was very young.

Child & Family Background Information: How the Placement Occurred

Rohan received early intervention for his developmental delays and was diagnosed with autism before he turned 2. Challenges with finding the most appropriate educational placement began around age 4. His first year at his public special education preschool did not go well. His IEP team was in agreement with his parents that another school would be a better option for Rohan given that he was not learning or making progress in their program. They recommended other local public school programs in nearby towns and preschool collaboratives. His parents, “Fatima and Kamal,” brought him to visit these programs. The first was a disaster. Fatima said, “he completely destroyed the room, tearing through it like a tornado!” There were two teachers in the room, and neither could manage him or the other children in the classroom. “It was complete chaos.” Every program that they visited was not equipped to manage Rohan. The program directors and Rohan’s parents were in agreement about this. Their local school team then provided his parents with a list of several private schools to visit. Melissa did most of these tours (this time without Rohan for the first visit!). She had stopped working full-time, as Brady had proven too difficult for daycare or babysitters to manage since age 1. He was asked to leave several daycare settings and babysitters never lasted more than a few weeks or months. Fatima selected one school that had stood out to her as being a good fit for Rohan. She was impressed with how professional the teachers and office staff were. When interacting with students, they were very skilled and treated each child with great respect. After this school reviewed Rohan’s history and had one visit with him in their classroom, they made their shocking recommendation: residential placement! Fatima and Kamal felt a mixture of strong feelings: validated that this school seemed to understand the seriousness of their son’s disability, but also dismayed that their 4-and-a-half-year old son would learn best in a program where he could not remain at home. “We struggled with this a lot, and we still struggle with it now that he’s 13,” Kamal said. What helped Kamal and Fatima agree to the recommendation for residential schooling when their son was so young was the support of the residential school and how clearly they articulated his need for it. They reminded Fatima and Kamal that Rohan has always needed constant 1:1 assistance, and that parents cannot run a household AND raise other children when one child needs 24/7 supervision. Although it was painful to hear how severe his challenges were, they appreciated the honest, professional opinion. Fatima and Kamal took some time to think over the recommendation and eventually realized that “if Rohan was to have any self-dignity or a chance at anything in life, we had to give this to him. It wasn’t about us. We had to put our feelings aside. This is what he needs.” Over time, Fatima and Kamal say that they still feel sad, cry from time to time, and miss Rohan a lot, but that the tears are less frequent than they used to be. They take comfort in knowing that he is at a school where he is loved, well-cared for, and will help him live to his fullest potential.

Most Challenging Part of Residential Placement

“Rohan is not here with us at home. Sometimes it feels like a death. Even though we are seeing him on weekends and using FaceTime to speak with him at school, this situation still feels so painful, like such a big loss for our family.” It has been difficult for Rohan’s siblings too. Fatima said, “I remember when my daughter worried that if she misbehaved, then she would have to leave home and go to another school too.” Fatima and Kamal have taken great care to check in with their other children from time to time and talk about how they are all feeling about Rohan and his being away at school.

Benefits of Residential Placement

“It has saved our marriage!” Both Kamal and Fatima agree that going through this has brought them closer together as a couple and as a family. When Rohan is home, they make more of an effort to spend time together and plan activities that they can all enjoy, because that can’t happen as often as it might if Rohan lived at home. An important positive outcome for this family is that this experience has helped them realize what is truly important in life. “Some kids get upset when they lose a baseball game, or adults get stressed out about having their homes look perfect…but what does that really matter in the long run?” Another gain is the incredible progress that Rohan has made. They can now go to public places with Rohan when they couldn’t before. This was an important goal for the family, so they made sure it was included in his IEP. When he is home on visits, Rohan has difficulty relaxing and tends to walk in circles repeatedly, tear old magazines into tiny pieces, or loudly open and close doors in the house for hours at a time. Fatima said they prefer to go places together. Sometimes she is amazed at how well he can now behave in public and is even helpful on errands! Another example of Rohan’s gains is his ability to tolerate dental work. Fatima explained that her son’s school has a dental chair in the nurse’s office, which is used to help children practice this experience and decrease their anxiety about it. “Rohan had some bad dental experiences when he was little, but now he is a good dental patient!” Also, he is learning the steps to take a shower, use the toilet independently, and use a communication device to express his needs. These are skills they could only dream he might do someday.

Coping with Challenges of Residential Placement

One challenge involves maintaining a positive relationship with Rohan through regular visits. Kamal and Fatima live over an hour away from Rohan’s school. They wish they could see him every weekend, but together they realized that visiting so frequently would not be possible. Kamal and Fatima worked hard as a family to try to figure out what worked best for them. They balanced how much they miss Rohan, alongside their whole family’s energy and resources. At first, they had Rohan come home every weekend for one day, but this was tiring for a child who does not like long car rides, and also exhausting for a parent who spends over 4 hours in the car during the trip back and forth. The family learned that Rohan’s weekend visits felt more like a burden (for all of them) than a time to enjoy one another’s company. “We decided to have him home every other weekend for an overnight visit, so we spread the driving across two days. On the weekends we have Rohan home, we do not plan anything else if we can help it.” They arrange carpools for their other children’s activities. The entire visit is centered around keeping Rohan safe and busy with productive activities, rather than his repetitive self-stimulating behaviors. They make sure Rohan is getting what he needs. Fatima and Kamal admit that “we are pretty tired by the end of the visit!” Parents of children with special needs are human and have a finite amount of energy before burnout occurs. Rather than creating a situation where the family was resentful of their time with Rohan, they found a way to maintain a positive relationship with him while giving him the family connection he needs and deserves. Fatima added, “It is not a perfect solution, because we still miss him and wish we could see him more than just twice a month. It would be nice if the school were closer so we could even take him out to dinner on a weeknight once in a while.” Another challenge common to any residential school is keeping track of your child’s belongings. Melissa copes by trying to keep the meaning of lost or misplaced items in perspective: “Sometimes Rohan will come home wearing someone else’s shirt or shoes, but I try not to be too picky about things. Some things are worth talking with staff about and some things I decide to let go of, even if it bothers me a little bit.”

Advice for Other Parents

“I recommend that parents educate themselves about different schools if they are uncertain, and then have trust in their own judgment.” For example, in the early years Fatima did not always agree with the professionals who diagnosed Rohan with autism. She read a lot and asked a lot of questions. Ultimately, Fatima decided that she didn’t have to agree with them 100%. "Early on I didn’t think he met all the criteria for autism to qualify for the diagnosis, but I kept Rohan involved in services I thought would help him. I always respected what the professionals had to say, but never considered it the final word. Like the recommendation for residential placement – they said it, but we thought it over and made the decision to do it, but we also know we could have chosen not to do it. We knew we had the right to do what was best for our son and our family.”