A few nights ago, I took care of a 47 year old man with Prader-Willi Syndrome. He mostly slept for me as I took care of him during night shift but in the morning I met his mother who shared many stories of what it was like raising a special needs son. She told me that although many people love his gentle presence, he can be a bit hard to manage at home. She stated that she is a recent widow and it has become harder to take care of him by herself. She is tired and is having her own health issues to deal with. His sister, who has her own family gets very short and impatient with him although his niece seems to know how to calm him down and take better care of him. She shared that in her absence she worries about his care and placement and wonders if her daughter will take care of him as she has hoped.
Once she sent him to a summer camp for people with intellectual disabilities through AbilityFirst, a program I am interested in sending Luki at some point in time in the future. When speaking to camp counselors, he stated that his mom hits him at home. She adamantly denied this and I believe her because I saw how tenderly she took care of him at his bedside in the hospital. This revelation prompted a whole child protective services investigation and he was whisked off to foster care late at night when social workers whisked him away in an unmarked car.
What a scary thing to happen. I wonder why he told others he was getting abused at home. Could he have been ill-treated by his sister but mistakenly blamed it on his mother? Or, due to frustration at times, she spoke and treated him harshly and he took her words and actions out of context?
Out of frustration when Luki is being very difficult, I have had to be stern with him only to find him cry in the saddest way possible that my heart ached for him. His eyes would fill with tears and he would give me a big hug as if to convey an apology. It breaks my heart when he does this and I know his tantrums are not of his choice but a discomfort? pain? fear? that I know nothing about and can't fix. It's a hard life sometimes living with Dup15q.
I came away from work that morning having learned a lesson from this man with Prader-Willi Syndrome and his mother. I vow to be more tolerant of Luki when he is having a fit and I hope to never have CPS involved in our lives.
On another note, I spoke with Venus, a self proclaimed "telepath, empath, all the clair's" to get a peek into Luki's head. I like to consult Venus every so often to find out what his really happening with Luki. This is the closest way I have of "communicating" with him as he is still nonverbal. Whether it is true or not, I really don't know for sure but it gives me much comfort and greater insight about him and for that, I am grateful.
In this reading, received on her radio show, January 16, 2020
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