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Now he knows what family is

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The call about five-year-old Ethan* came five years ago from the Department of Child and Family Services in South Carolina to a home in Boston, MA. 

We have removed Ethan from his home, the voice on the other end of the line said. And his four foster care placements thus far have all failed.

We know you adopted his half-sister Grace years ago, the voice continued. We also realize that Ethan is no blood relative to you. But would you be willing to take him anyway?

“How could I say no,” says Ana, the woman who took the call that changed her life.  “How could I say no to Grace’s half-brother?”

An exhausting five-year journey

Yet the next five years have been a physically and emotionally exhausting journey for the 68-year-old old grandmother of four who works in housekeeping at a local hospital.  It is a journey that is now showing increasing success – and made possible with the help of a wide range of intensively coordinated social services from the Italian Home, community-based providers, his school social worker, and his doctors and medical team.  

Ana had become guardian to Ethan’s half sister when she was two months old.  Grace is the daughter of one of Ana’s two sons, who lives in the family’s home as well.  Now 16, Grace is a delight, doing well in a local charter school that she attends six days a week, and working a part-time job at a nearby grocery store. Confident, graceful, and supportive, she does well in school and hopes to pursue a career in nursing some day.  She has been an amazing role model for Ethan and an amazing daughter, Ana says.

In contrast, when Ethan arrived at Ana’s neatly kept Cape Cod style home on a quiet tree-lined street, he was suffering from a panoply of emotional and physical problems.

Wouldn’t sleep for three days

“He was so scared to go to bed,” Ana recalls.  “He was having hallucinations. He didn’t sleep at all sometimes for three days and nights. He was so hyper and aggressive that he’d demand to play loud music, dance and play in the backyard at 1 a.m.  I would put Ethan in the car at night so others could sleep, drive around, stop at McDonald’s to get him breakfast – anything to keep him occupied until it was time for him to go to school.”

Ethan had endured a lifetime of abuse at the hands of his and Grace’s mother, and his own father.  Mom had bipolar disorder. Ethan’s Dad had schizophrenia and died by suicide. A long series of his mother’s boyfriends had also physically and emotionally abused him. 

“He would bite his mother, so his mother would bite him back. He cried all the time. They would put pictures of monsters in his bedroom window at night to scare him to keep quiet,” she said.

Ethan has been hospitalized 15 times for his emotional problems since coming to the Bay State. Three times he has been placed in a community-based acute treatment program in hopes of helping to regulate him without a full hospitalization.  At one point, Ethan tried to harm himself 57 times in a two-hour period by doing such things as biting, hitting his head against the wall and poking and hitting himself with objects.

Contending with rare genetic disease

As if this weren’t all to contend with, when Ana agreed to take Ethan, she also knew that he had Shwachman-Diamond syndrome, an extremely rare inherited condition that affects many parts of the body, particularly the bone marrow, pancreas, and skeletal system. Ethan’s body has trouble processing foods, he’s severely prone to infections, his bones won’t grow at the rate of other children, and he has cognitive delays because of the disease.

“Because of how his mom raised him, he always wanted soda, and junk food, and wouldn’t eat anything good for him,” Ana recalls.  There were major battles over food.

“Luckily there is an expert in Shwachman-Diamond here in Boston at the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center,” says Rebecca  Hartman, an in-home behavior therapist from the Italian Home, who has been working with Ethan and Ana for the past year. Rebecca has been instrumental in setting up structures for Ethan at home to help him adjust to living a more normal life.

“Ana never gave up on Ethan”

“Ana never gave up on Ethan,” Rebecca says.  “That’s the most important thing. Today Ethan is very lovable, and strives to make people around him happy.  He’s like a butterfly coming out of a cocoon these days.”

The road to turning Ethan’s life around has focused on bringing together a very strong team of professionals from multiple agencies including the Italian Home to get Ethan and Ana the supports they need.

Until this year, Ethan was going to a public school, with limited success. This year, thanks to his team’s hard work and advocacy, Ethan attends a therapeutic school for kids with special needs – and is thriving. 

In home services were game changers

Rebecca helped collect data on Ethan’s patterns of hallucinations and sleeping – data that was vital in helping to get his medications more regulated and effective.  “He had difficulty separating fantasy from reality,” says Rebecca.  “He was fighting ghosts, terribly fearful, getting actual life and death feelings and an adrenaline rush from his hallucinations.  He had night terrors every night, multiple times per night, and couldn’t go back to sleep.  He still has the night terrors, but maybe only a couple of times a week, and he can get back to sleep now.”

Transitions to school in the morning were another major hurdle to overcome. Rebecca and an Italian Home co-worker went to the house for a week at 6:15 a.m. to help Ana get Ethan ready for school, providing Ethan with a clear, step-by-step routine of what he needed to do, and a reward system similar to a sticker system so Ethan gets positive reinforcement for achieving each tiny step in the process of getting out the door After the first week of intensive work, they continued their efforts once a week, coaching Ana and Ethan to help Ethan increase his independence and decrease the frequency with which Ethan attempted to hurt himself.

“Ana needed help getting Ethan to get ready for school by himself so she could get ready for work,” Rebecca says.  “We saw that when he was hospitalized Ethan did really well with structure. Routines increase predictability. So we developed a step-by-step system he could follow for things like taking a shower, getting dressed, getting on the bus.” The step-by-step system for taking a shower, for example, is a one-page laminated sheet with simple words and pictures that reminds Ethan to wet his hair, shampoo his hair, brush his teeth in the shower, and how many times to wash different parts of his body. Ethan earns tokens for doing the various routines well.

For a long time, Ethan couldn’t vocalize his wants and needs.  His inability to communicate was a barrier.  He couldn’t connect with others, look them in the eye or read what their eyes were saying – which made him incredibly frustrated because he wasn’t being heard. All of this led to more aggressive behavior.  Again, the home-based teams worked to help him say what he wants, rather than pointing or simply becoming frustrated.

Advocacy yields big results

Through a hospitalization at Children’s, the team learned that Ethan could soothe himself when he was getting distraught, over-anxious or over-stimulated by using very large, five-foot-tall pillows called  Yogibo.  Ana and the team wanted these to be available for Ethan at home – but at $250 per pillow, the cost was beyond Ana’s means financially.

“The team advocated for Ethan, and got the Department of Mental Health (DMH) to pay for them,” says Rebecca.  Now Ana can tell Ethan to go play with the pillows, and he will do so, calming himself.

Similarly, the team learned through an inpatient hospitalization that Ethan would sleep better with a weighted blanket, which provided a sense of safety. Again they advocated, and DMH paid for him to have one at home.

“We assess what behaviors we want to increase or decrease, and figure out what we think will change behaviors and what the family can actually do,” says Rebecca of her work. “We’ve found ways to expand his food repertoire while not agreeing to his demands to drink soda all the time, for example. He used to call “Mae” (his name for Ana) hundreds of times per hour, so we found ways to get him comfortable playing by himself.”

Rebecca’s role with Ana and Ethan has involved about 6-10 hours per week – and is ending because of the successes that have been achieved. But Rebecca says the experience will stick with her forever.

“I am so proud of the progress Ana and Ethan have made,” says Rebecca. “When I joined the treatment team Ethan was in a very bad place and we were not sure that he would ever be safe enough to live at home. Ana was stubborn, though, and refused to give up on him. We had to get creative and meet the family where they were at, which was difficult because Ana had no experience with special needs children, never mind a child with needs as severe and complex as Ethan’s.

“She had no idea what she was getting herself into when she agreed to take Ethan,” Rebecca continues. “She did not knowingly choose this journey, but once she realized that raising Ethan would be very different from her other children, she owned it and worked hard to get him the help he needed. From a clinical standpoint, nothing about this situation was ideal, except for Ana’s openness to learn, Grace’s amazing commitment to be a role model for Ethan and to do everything she could to help, Ethan’s amazing potential, and the team of providers that cared so much for this little boy.

“One of the many lessons I will take from this family is that children are incredibly resilient,” Rebecca adds. “When children feel safe and loved, we can then begin to teach them adaptive skills so that they can overcome their struggles. Ethan knew that we would always come back. We were not deterred when he had a hard day or severe behaviors. He knew that we genuinely cared and believed in him, so he worked hard to reach his goals. “

“You have to persist,” says Ana of her experience with Rebecca and the rest of the team of professionals who have worked to improve Ethan’s life. “I thank the doctors and everyone for telling me to stick with Ethan. He is so much better than when he came here.  He had never had a birthday party, never celebrated Christmas. 

“The first time he said ‘Mae I love you,’ I cried,” Ana says. “For nearly five years I didn’t get that.  Now he says ‘I love you more than anything.’

“Now I can ask him why he does things, and he can say why,” she continues. “He doesn’t fight back like before. He tries to control himself. He tries to figure out the right things to do.”

“This is the best thing for Ethan,” Ana concludes. “He goes to church, and to school and can enjoy being with other kids.

“And most importantly, he knows what family really is.”

 

Editor’s note:  Ethan’s name, and the name of his sister and grandmother as well as some other details have been changed to protect confidentiality.  Organizations involved in Ethan’s care included the Italian Home, South Bay Community Services, North Suffolk Mental Health, Greater Malden Behavioral Health and Children’s Hospital Boston

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“How could I say no,” says Ana, the woman who took the call that changed her life. “How could I say no to Grace’s half-brother?”

1

A long series of his mother’s boyfriends had also physically and emotionally abused him.

2

“Ana never gave up on Ethan,” Rebecca says. “That’s the most important thing. Today Ethan is very lovable, and strives to make people around him happy. He’s like a butterfly coming out of a cocoon these days.”

7

For a long time, Ethan couldn’t vocalize his wants and needs. His inability to communicate was a barrier. He couldn’t connect with others, look them in the eye or read what their eyes were saying – which made him incredibly frustrated because he wasn’t being heard.

5

Ana did not knowingly choose this journey, but once she realized that raising Ethan would be very different from her other children, she owned it and worked hard to get him the help he needed.

3

“One of the many lessons I will take from this family is that children are incredibly resilient,” Rebecca adds. “When children feel safe and loved, we can then begin to teach them adaptive skills so that they can overcome their struggles. Ethan knew that we would always come back. We were not deterred when he had a hard day or severe behaviors. He knew that we genuinely cared and believed in him, so he worked hard to reach his goals. “

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