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Parent Story 4: “Nico”

“Nico,” a 12-year-old boy with a mood disorder (bipolar) and mild autism spectrum disorder, received a range of placements for his complex challenges: (1) multiple inpatient psychiatric hospitalizations, (2) a one-year residential placement at a school for children with psychiatric and developmental difficulties, and (3) a private special education day school after returning to live at home.

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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 when he was 5 suggested a mood disorder, attention deficit-hyperactivity disorder (ADHD), and developmental delays consistent with an autism spectrum disorder (ASD). His public school qualified him for an IEP under the category of “Social/emotional disability” rather than ASD. They viewed his difficulty learning in school as a function of his mood disorder, weighing the school’s own multi-disciplinary evaluation results more heavily than the family’s private neuropsychological test findings. Tina was unhappy about this at the time but felt Nico would still be getting most of the services he needed, so she accepted the proposed IEP.

When Nico was 8, his parents divorced, and his father moved to the west coast. Nico’s behaviors worsened 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 aggression 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, particularly those at Nico’s public school, viewed his primary challenges as stemming from a mental illness, while others considered his ASD to be primary. Tina recalls feeling like she was constantly advocating for additional services at school. By the time Nico was 11, his emotional and behavioral outbursts were so severe and frequent that he had required 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 that agency and his school on the same page to recommend a residential placement took a long time.

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How the Placements Occurred

“What finally made the difference is that I was diagnosed with a brain tumor! As a single parent who had other children at home, they knew I couldn’t manage the severity of Nico’s needs while coping with my medical needs. I am still angry that my son – and his two siblings – had to struggle and suffer for so long at home before my son 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 he 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. The combination of the updated evaluation and the residential school’s recommendations helped their public school to redefine his educational needs 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 sisters.” Tina called their DMH crisis team, and they came to the home, helping Nico avoid a return to the hospital. The team and Tina helped him become calm and use the strategies he learned to express himself, instead of resorting to inappropriate or unsafe behaviors.

Tina knows she and Nico still have a rocky road ahead as he approaches his teenage years, 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, including the educational placement that is right for him at any given time.

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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. They could also make changes to his medications since they could observe him all the time. After he was more stable and calm, then he was able to focus on his schoolwork 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.”

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Most Difficult Part of the Placement

“Nico had so many short-term hospitalizations and came home before he was really ready, and I worried that his residential placement would kick him out too soon too. It was a relief that they had staff who were trained to manage him. 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? 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 – and funding – the placement.

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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 when he was in elementary school. 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 recommends that parents “make sure to get a lot of emotional support for yourself!” After the divorce, she felt like her friends avoided socializing with her since she was no longer part of a couple. “Then when I got a brain tumor, the support came flowing in. My refrigerator was filled with meals from my church, my neighbors. I realized how alone I had been. But then when my son was placed in a residential school, it was like our family had the plague again!” Tina’s story highlights the isolating aspects of having a child with serious special needs, and perhaps the stigma of having a child with serious challenges. There may also be the additional stigma of having a child who is not able to live at home.

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