Nico

A 12-year-old boy had many inpatient hospitalizations and residential placement for mental health challenges, before returning home to attend a private special education day school.

Child & Family Background Information

“Tina” has a 12-year-old son, “Nico,” with a complex diagnostic picture, as well as multiple family losses. A private neuropsychological evaluation suggested developmental delays, ADHD, and a mood disorder; however, his school qualified him for an IEP based on a social/emotional disability because they viewed his challenging behaviors as most impacting his ability to learn in school. When Nico was 8, his parents divorced and his father moved across the west coast. Nico’s behaviors became worse after that time, making life that much more challenging for Tina and her two daughters (one younger and one older than Nico). Nico had his first inpatient psychiatric hospitalization at age 9 because of aggressive behavior toward his mother and sisters, including hitting, kicking, and threatening them with a knife. Getting Nico the help he has needed has been difficult, in part, because his challenges were not well-understood. Some professionals viewed him as more developmentally delayed/autism spectrum disorder, and others viewed his primary challenges as stemming from a mental illness. By the time he was 11-years-old, his emotional and behavioral outbursts were so severe that he had received 10 psychiatric hospitalizations! Tina does not feel that any of these provided more than a temporary band aid, at best. “He was in and out of the hospital and school so much, and he wasn’t learning anything.” She advocated for him to attend a residential school so that both his educational and therapeutic needs could be met by staff and teachers trained in managing children with complex developmental as well as psychiatric needs. However, the process of obtaining support from the Department of Mental Health (DMH) and getting both his school and DMH on board for a residential placement took a long time.

How the Placement for Residential – then Day – School Occurred

“What finally made the difference is that I was diagnosed with cancer!” As a single parent who had other children at home, her son’s team knew she could not manage the severity of his needs while coping with her medical treatment. “I am still angry that my son – and his two siblings - had to struggle and suffer for so long at home before he got the services he needed.” For Tina, the journey was not over. She was shocked to learn that DMH wanted to discontinue her son’s residential placement once she completed her radiation treatments and was back on her feet. Tina felt torn: she wanted her son to be at home with her, but she was scared about it too. She wasn’t sure if Nico was ready – or if she was ready - and worried that the old behaviors would return. She sought consultation from an educational advocate, who recommended that she obtain an updated private neuropsychological evaluation to clarify his diagnosis and educational needs. Doing this helped their public school to redefine his educational needs in order to account for all of his challenges: developmental, learning/attentional, and social/emotional/behavioral. His public school could then create a stronger IEP with services he didn’t have prior to his placement. In-home therapy was set up to help Tina manage the challenges her son presented at home. For the first few months, things were rough. “There was one day when he became noncompliant about everything I asked him to do – homework, bedtime routine, you name it. I could see him getting more and more angry. He started throwing things and threatened to hurt me and his siblings.” Tina called their DMH crisis team, and they helped Nico avoid a return to the hospital. Along with Tina, the team helped him become calm and use the strategies he learned to express himself, instead of resorting to unsafe behaviors. Tina knows she and Nico are not out of the woods, but she feels more confident with her ability to articulate what her son needs. She plans to make sure that his complex needs are thoroughly addressed in his IEP, which includes the educational placement that is right for him at any given time.

Most beneficial part of the placement

“Finally Nico was at a place he could learn skills to manage his behavior and emotions. It really took the 24/7, round-the-clock teaching for him to make any real progress. After he was more stable and calm, then he was able to focus on his school work too. He caught up to his grade so he didn’t need to get left back, which was a risk when he was at public school.”

Most difficult part of the placement

“Nico had so many short-term placements and came home before he was really ready, that I worry that his current placement won’t last for as long as he needs it. Now that he’s in the day school, every time the phone rings, I’m afraid it’s his school calling to say he had another explosion and he can’t stay there.” Tina’s worries focus on both the short-term and long-term challenges for Nico: will he really get enough of what he needs now so that he can keep up with what kids his age should be learning, and what will his future look like. Parents of children with mental health issues often live with the uncertainty and anxiety about when the next shoe will drop. Their children’s conditions may go through periods of relative calm and stability, alternating with times of crisis and intense chaos. For children in private day schools, parents worry when their child’s next outburst will occur and if it might risk losing the placement. Or, parents worry when DMH, the public school, or other agency will discontinue recommending the placement.

Advice for other parents

“If your child has a mix of learning, developmental, and mental health issues, make sure that all of their challenges are clearly spelled out by the professionals and in the IEP. I wish I had not let my son’s emotional and behavioral problems dominate his IEP. I wish I had made sure that his problems with attention and learning were equally addressed. Then maybe he wouldn’t have been in danger of being held back in 5th grade. And maybe he wouldn’t have taken so long to get a more specialized school placement that could meet all of his needs. It was too easy to just focus on his out-of-control behavior as the main problem.” Tina also encouraged parents to find support among people who “get it.” There were many times she felt isolated and alone. “After my husband left, I felt like I had the plague. Then I got cancer, and the support came flowing in! My refrigerator was filled with meals from my church, my neighbors…Then when my son was placed in a residential school, it was like I had the plague again!” Tina’s story highlights the isolating aspects of having a child with serious special needs–as well as stigmas about having a child with mental health challenges and living in a residential placement.