Kerstin with family; son with Aspergers and Schizophrenia; Lack of youth and school services

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Speak Out For Mental Health Care Access

family profile_kerstin with familyKerstin struggled to get services for her son because neither his school nor their local hospitals would accept his clinician's diagnosis of schizophrenia (Massachusetts).

When Kerstin and her husband decided to adopt Jacob, an orphan from Ukraine, they knew it would be a challenge. He was developmentally delayed and hyperactive. Kerstin first assumed that his ramped-up behavior was just a gender difference because her six-year old daughter played quietly or read. "But Jacob just ran and ran," says Kerstin. He also threw tantrums and had no tolerance for frustration.

Kerstin put Jacob into a no-cost early intervention program called "Birth to three." When he aged out shortly after enrollment, Kerstin struggled with both public and private school placements. Despite having weekly speech therapy sessions, Jacob's frustration at the lack of being able to grasp the English speech led to him "tear up his room, move his furniture and pull his mattress out into the hall," Kerstin explains.

Jacob continued to struggle when he started regular kindergarten, but school officials insisted he was fine. Kerstin tried getting Jacob into new counseling centers but was told that without an emergency, there was a six-month wait. Even Jacob's pediatric doctor, who was familiar with children from Rumanian orphanages, told Kerstin she was stuck and to wait until "Jacob would either pull himself together, or fall apart."

Kerstin felt encouraged after enrolling Jacob in a local study for children with ADHD or bi-polar disorder. He was diagnosed with the latter, was given medication and became suddenly calm and happy. This honeymoon period, however, was short lived and his tantrums again worsened. Since he was growing, he was harder to contain. At the age of nine, he beat Kerstin's husband with a baseball bat and Kerstin actually recorded the incident, which was something they were thankful for weeks later.

Kerstin struggled to find continuing care when the study ended and ran into the same six-month waiting period problem when she tried to find a therapist. Desperate, she "told the clinic Jacob was violent and a danger to himself. Suddenly, they had an appointment available," Kerstin explains.

Though Jacob began seeing a therapist once a week, and was on medication, he didn't improve much and started describing self-harm and suicidal ideation. The psychiatrist recommended they take Jacob into an emergency room immediately, but even there, Kerstin found little hope. "It took four security guards to hold him down. Finally Jacob fell asleep and when the crisis team came to assess him, they only saw this peacefully sleeping boy. They told me he was fine and insisted we take him home," Kerstin says. The next morning the psychiatrist insisted Jacob should return to the hospital, but he awoke in such a relaxed and calm mood that the doctors again said he was fine and sent them home. Frustrated, Kerstin's husband played them the footage of Jacob's violent behavior that finally convinced them to hospitalize him.

The next day, the hospital psychiatrist told Kerstin that Jacob was profoundly depressed, switched his medication and determined he was ready to go home after 3 days. "We were scared to death," says Kerstin. "But we took him home."

Kerstin discovered she could get respite care through the Department of Mental Health, which provided her with a small one-hour break per week. When Jacob was finally assigned a new clinician, "he was the first person to really tell us that Jacob had no distinction between fantasy and reality," says Kerstin. "He never came out and said 'schizophrenia,' but he leveled with us."
Towards the middle of the school year, Jacob became increasingly violent and started threatening Kerstin. Frantic, they called ahead to a nearby psychiatric hospital for children, adolescents, and adults, and were told to bring him in. The psychiatrist diagnosed Jacob with Asperger's and kept him for additional evaluations.

After two and a half months, the insurance company refused to pay anymore. The hospital prepared to discharge him, but Kerstin and her husband refused to take him home. They knew he couldn't return to public school, but school attorneys engaged in a legal proceeding to deny Jacob a residential school placement. After painstakingly gathering 16 pages of documentation to prove Jacob needed help, the attorneys gave in. "They knew they'd lose," says Kerstin. "So they granted a residential placement."

Jacob is now 14, and Kerstin believes his diagnosis of schizophrenia is finally an accurate one. Kerstin credits the residential placement program with Jacob's continued progress. Jacob comes home on weekends now, is more peaceful, and enjoys doing yard work, yet she grapples with that desire to have him home .

For now, Kerstin aids other parents by sharing her difficulty in getting access to mental health care and services. She serves as the current chairperson of the Special Education Parent Advisory Council (PAC), a group that acts as a liaison between parents and school personnel. "Every school district in the country is required by law to have a special education PAC, so I urge parents to call the school and find out who's in charge," says Kerstin. Though Kerstin had to discover much of what she has learned on her own, she is working hard to save other families the grief she experienced.

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