I’ve been smacked across the face, shoved, had my hair pulled, laundered urine-soaked sheets and scrubbed floors covered in the breakfast that was back handed to the floor the minute it was placed on the table … and it is only 6:30 am.
This is the direct result of autism, anxiety and a complete lack of bodily control, which is exponentially worsened when a medication must be adjusted or changed.
Watching either of my children suffer is probably my most helpless experience as a parent. Add to that a child who is unable to communicate his feelings, needs or thoughts in any way and I become overwhelmed with worry and uncertainty of how to fix it to make his life better.
Over the years, countless medications have been prescribed for Skyler to help minimize his ‘negative behaviors’ and calm his agitation. Some have been helpful while others have wreaked emotional and physical havoc on not just Skyler but our entire family.
Because he is unable to contribute to the conversation and explain his actions, each appointment with Skyler’s clinicians requires that I recount every detail and make assumptions as to why his reactions and physical responses at school and home are what they are.
The challenge that comes with any prescription, particularly when no feedback is given by the patient, is not knowing whether the medication will ultimately be beneficial or harmful to his mood or overall functioning. Skyler’s inability to express with words or gestures the way his body feels when taking these medications continuously leaves me guessing as to their impact.
We are forced to interpret that every demonstration of agony – sudden raging, irritability, refusal to eat or sleep and complete disappearance of his beautiful smile can be blamed on either side effects or insufficient dosing.
As always, I see some initial benefit with each medicine, but it rarely lasts. Switching from one medication to another is the hardest part. To make adjustments properly and safely, a slow downward taper of the current medicine and an equally slow initiation of the new medicine is required, which almost always forces Skyler’s anxiety into overdrive until the correct dosage is established!
In addition to the crippling anxiety, Skyler was diagnosed with Ulcerative Colitis and Esophageal disease which cause horrific pain, chronic constipation and poor digestion. Based on his erratic level of calmness, it appears Skyler is living in a constant state of discomfort leaving me wondering if I’ll ever be able to accurately figure out what he needs and how to help him.
So, when the property destruction, physical aggression and self-injurious behavior ramp up both at school and home, I remain determined that I will eventually decipher his repetitive clues and figurative cries for help.
Is his discomfort due to a gastrointestinal flare up? Perhaps he’s expressing anger due to a change in routine, exhaustion or sensory overstimulation? Could it be just a simple headache, toothache or another body part hurts – how would I ever know? Do I increase the focus and treatment intervention toward his GI, mental health or something else?
I’m always reminded of the age-old question, “which came first, the chicken or the egg?” Except in our situation, the chicken and egg are replaced with Skyler’s pain and frustration. I never know if his increased banging, hitting and hair pulling are because his stomach badly hurts or the loud, physical outbursts and negative responses are less to do with pain and are more illustrative of the frustration and irritation Skyler feels from being unable to communicate or be understood?
Trying to be thorough during these times of obvious chaos within Skyler’s body, I contact both his Gastroenterologist and his Psychiatrist so we can team up to unscramble the mysterious riddle behind Skyler’s daily panicked expression and apparent misery.
Every morning I pray that I’m doing right by Skyler… that the array of pills carefully chosen for him are providing some relief and will finally calm both his mind and body.
If I’m being honest, I also pray that one day soon, he will have the ability to let me know how the medications impact him – whether it has been a partially positive or mostly negative experience. I’d actually prefer that he no longer need another prescription or injection for the remainder of his life.
I wish so badly for Skyler to finally be free of the internal struggles, which keep him from advancing his skills and abilities and the external outbursts, which give the false impression that he just doesn’t care if he hurts himself or others. He deserves to enjoy life – smiling and laughing instead of stressing and suffering.