Wait for...Stealing Doah (Mahlou)
Peek into the future...and wait just a bit. Coming up some time this year is the publication of Stealing Doah, a new book by Elizabeth Mahlou.
The first time. Doah, a CHARGE Syndrome baby, at six months, was losing weight daily while in the hospital, where the staff was insisting in the kind of care that the mother and pediatrician and already determined would result in failure to thrive. Then, the hospital proposed surgery as the best approach, and the pediatrician, with a little research, learned that the suggested surgery had 25% chance of success and a pretty high risk of death. (Years later, research would show that most surgeries had a 35% chance of resulting in long-term dependence on a life machine and a poor prognosis.) The hospital decided to seek custody from the courts (without informing the parents). Elizabeth found out because she read -- and understood -- all Doah's medical records, and the doctors had left a trail. Propelled by gut instinct, Elizabeth stole Doah from the hospital at the precise moment the doctors were in court and flew with him to an out-of-state hospital that, it turned out, agreed with her. No dangerous surgery. Doah lived to grow up. Stealing Doah contains all the heart-stopping and heart-warming details!
The second time. Of-age Doah arrived home from school with an announcement: "I have a secret." Because he was sexually abused by a teacher (not proved because she left the school and the state before it could be), he had been taught that the meaning of secret was special information to be shared right away with his parents. The secret revealed that he had signed a document, stating that he wanted to be placed in a group home and attend school for another four years, two options not supported by his parents. After 12 years of schooling, he still could not read, write, or do simple math -- and the school had no plans that would provide him with an actual education. Parents and school had been at a standoff (the school stood to get quite a bit of additional funding if Doah were to stay in classes), but then, Doah, who was not conserved, turned 18, and the school asked him to sign his rights away although they did explain he would be moving out of his house as a result of the paper. Nonetheless, he signed an agreement that he could not read, let alone understand. A lawyer specializing in family affairs suggested leaving town since it would take several months to complete the paperwork and other requirements to establish a conservatorship. Off they fled in a rental truck up and down mountains along waterlogged roads and blinding El Nino rains. Stealing Doah contains all the heart-rending and breath-holding moments.
The third time. Ultimately, Doah did graduate from high school -- in another state, living with his uncle, and began a sheltered workshop program, moving into a series of group homes that finally brought him full circle to the area in which he had grown up. Although his parents saw him every weekend and interacted with the group home and workshop staffs, they never suspected what was really happening to Doah, who more and more often ran away from those homes the older he became. Finally, Doah was moved out of the area to group homes that were only barely aware of his runaway behavior. Some shady behavior was suspected when Doah's parents were asked to provide additional money every month for rent, when the group homes program was already receiving $240K a year to care for Doah, which the parents found out when they were accidentally provided paperwork that was supposed to go to the group home program, not to them. Where was the money going? Doah did not even get pin money! And, as the parents later found out, his medical and dental needs were being ignored such that he lost over a dozen teeth. When caregivers called to say that they had been fired for protecting him for an unimaginable situation that involved a shooting threat (with a gun involved) and that he was being left alone at a hotel, Doah's parents once again rushed to his rescue and fled home with him for the last time, during COVID lockdown. Stealing Doah contains all the panic-stricken and guilt-stricken details.
Doah is finally home. Permanently. And doing well as likely the oldest surviving CHARGE Syndrome adult in the world. That it was the third time is a charm and not three strikes you are out was a blessing, a relief, and a miracle. Long live Doah!
For more posts about Elizabeth Mahlou and her books, click HERE.
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