One of the many amazing aspects of Neema House is that they take on challenges that many others would shy away from. Not only is their acceptance of HIV + children commendable, they have also recently taken in a little girl, Irene, who is severely mentally handicapped, and her brother, Emmanuel, who has many behavioral issues. It is unclear the specifics of Irene’s disability and I believe this is what makes her such a challenge for the Mbithi’s and for the Neema caretakers. It seems that they simply don’t know what to do with Irene -- as much as they want to love and help her, they don’t know how. Emmanuel, or Manu, seems to struggle with similar things that Irene does, although in a much milder form. He can be a real sweetheart and is very smart but, as if a switch is turned on, he often switches over to a very aggressive and mean little boy. The house mom seems to believe that Manu’s aggression is not simply a toddler acting out but a serious problem as Irene’s is.
Interestingly, Irene and Manu’s father, who is living in Eldoret and is HIV +, wants the children back. He is very poor but has promised that the children will be fed and will go to school. The Mbithi’s would like for them to go back to their father as they believe he is a good man and, ultimately, if possible, want the children to be at their homes. They are still waiting for evaluations from the social workers to determine if Irene and Manu will be able to return home. Unfortunately, Kenyan government doesn’t give disability money like ours does and Irene gets no support for schooling and care. A daily dose of Irene’s medicine is 7,000 shillings (about $100 US). This is extraordinarily expensive for Kenyan standards and is very hard for the Mbithi’s to pay. While they want her to go to school, whether she stays at Neema or returns home, the tuition is impossible for them to pay. The first term alone would cost 70,000 shillings and each consecutive term costs an additional 40,000 shillings.
Currently, Irene spends almost all of her days in a high chair. She has hit children before and has knocked over one of the caretakers so, for the safety of her and the children, they must restrain her in the chair. Irene is very strong and because she, understandably, doesn’t like being in the chair, she stands up and rocks the chair back and forth with great force. It is terrifying to watch and Joshua believes that if she were to fall, which could happen at any moment, she would die on impact. Upon seeing this the first time, Annie and I have been wondering and discussing a safer place for Irene to spend her days that would also allow her a little more freedom. When she is allowed out of the chair, which requires one-on-one care, Irene seems to be so happy. She dances around and has a big smile on her face. She loves Phillip, the house dad, and has the cutest giggle when he tickles her back.
Irene needs somewhere where she can giggle and be happy but remain safe. Do you have any suggestions? We’ve been looking into play pens but they are very hard to come by here. We want to talk to a builder but need to make sure the structure is as safe as possible for both Irene and the other children. We would also like to try to have Irene, and possibly Manu, assessed by a psychiatrist, as her last diagnosis was autism. I am no psychologist, but it seems to me that Irene’s disability is much more than autism. Do you have any suggestions or questions that we should ask the doctors? It seems that with the proper diagnosis, and consequently training for the caretakers about her specific needs, Irene could lead a much happier, healthier life.
Suggestions, ideas, and thoughts for Irene and Manu would be much appreciated. Joshua and Miriam, and the caretakers, worry constantly about Irene’s safety and, ultimately, her future. Annie and I are hoping to figure out a way to do our small part to give the caretakers some peace of mind and Irene a small portion of happiness.