Cas is extremely destructive

Cassandra has a syndrome called #SmithLemliOpitz, and part of the syndrome is possible self-abuse. Cassandra has a very severe form of the syndrome, so she harms herself on a daily basis.


It started when tiny and learning to crawl. If she accidentally bumped herself, she would purposely do it again. It became an everyday occurrence, so we got a helmet for her.

When 11 she crawled to the wall one night while we were sleeping, removed her helmet and bashed her head on the wall so severely she ended up with a #BrainHaemorrhage and lost sight in one eye. A few months later while in the car with her helmet on, she slammed her knee into the other eye and destroyed the sight in that eye. Doctors couldn’t save her sight, so Cas is #Blind.

Cas is extremely destructive. She punches herself in the head on a daily basis. First thing she does when waking up, is to punch herself in the head. Unfortunately, she can no longer wear a helmet. She discovered how to choke herself using the strap. Cas has to have a bed on the floor all padded up otherwise she will hit her head on the wall or floor. She is very flexible, so can fold her body in half and she kicks herself on the head.


It takes two people to dress her, otherwise she will punch herself non-stop. She is unable to walk, so when we pick her up she will immediately punch herself and head-butt us. She has terrible meltdowns and will pull her hair out, bite herself, and try throw herself off her bed to hit her head on the floor. The latest is gouging her face. She permanently looks like an accident victim. We have 3 layers of socks over her hands; so now not as deep; but still scratches her face.

We are unable to take her out as she will constantly punch herself. She has to be watched all the time, so we don’t get much sleep. Unfortunately, all medication to calm her has the opposite effect – even natural products. Although exhausting, we do our best not to let it get us down and we try to lead a fairly normal life. Also we have tremendous love, and support, from family and friends. That gets us through each day.


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