I was 9-years-old and struggling to breathe, as my little body was being squeezed mercilessly by my older brother. He had me in a classic scissor hold, trapped between his legs, gasping for air. As if this wasn’t humiliating enough, my loving brother topped it off by grabbing my own hand and forcing me to hit myself in the face.
“That was odd,” I commented at the time.
As Elise's parents, we have always worried about what the medications ultimately do to Elise as a person. Over the last several years, as her medications and doses have increased due to escalating SIB as well as uncontrollable seizures, we have definitely noted the sad fact that Elise's personality has taken a hit. The twinkle in her eyes has faded to a point. This is a definite situation where you have to weigh the pros and cons. Is it worth getting back some of that *twinkle* in her eyes, if she is determined to knock them black and blue? Regaining some of that younger personality she had would be great, but could it really show through if she couldn't stop screaming, biting her hands, and splitting her lip open? It's a trade-off... one of many heart-breaking, but necessary decisions that we have made for her with her best interest in mind.
(Ok, so, before I go any further, I want to let you know that I've heard all of the jokes there are about this product. I've even told a few. So, just take a moment to clear your mind of any silly thoughts and let's get on with it!)
We also provide Elise with plenty of personal, hands-on, "in her face" time. This is HER favorite solution to controlling her SIB! Most times that she is given up-close and personal treatment, she stops the hitting, biting, and hurting of herself to just enjoy being the center of someone's attention.
This girl can feel the slightest change in her health, and this is how she deals with it. Unfortunately, hitting herself only creates more pain and discomfort. This is a cycle not to be understood by Elise, so if WE don't stop it, SHE would continue to hurt herself to no end.
#2: Lack of outside stimulation. In short, she can't see what we see, hear what we hear, or use her body in the ways we do to create our own stimulation. Like twirling our hair, chewing gum, tapping our fingers on a desk, bouncing our leg/foot, and all of the other stuff we do daily to regulate ourselves.
OK, so maybe there's not really a "brighter side" to this aspect of Elise's life, but I have a hard time ending on a note that isn't at least a little uplifting. How about this...