How Do You Know When It’s Time to StopBy Kelly Hafer
By Kelly Hafer
Another week down, and it’s time for me to refill the kids’ pill organizers. As I dispense med after med into my oldest son’s organizer, I feel sick. The pharmaceutical cocktail this child ingests daily is amazing. How did we get here? I thought Ritalin was a racket before we adopted the boys, naive and pretentious parent that I was. I would never have a child on medicine – it was a cop out; better parenting through modern chemistry, I espoused. And, yet, here I sit, almost five years later counting atypical antipsychotics, antiepileptics, antihypertensive, and Concerta (long lasting Ritalin). My view on medicating children has changed 180 degrees. Our sons’ lives have changed. But to what end?
Our descent down Big Pharma’s slippery slope began when our adoption was finalized, after 8 months of foster care. It was not an easy journey. Our oldest son, from the first moment he came into our home, was “a challenging kid.” He didn’t sleep. I know. People say their kids don’t sleep. Then you find out that maybe their two year old kid doesn’t nap any more, or that their toddler sleeps a mere 8 hours a night. Those people don’t know how good they have it. When I say our son didn’t sleep, I mean, he didn’t sleep. He screamed his blood curdling screams for 4 hours at a time. He was inconsolable. There was nothing we didn’t try, and nothing that worked. Then he’d take a break for food or a 30 minute catnap. And then he’d be right back to screaming. Round the clock, deafening, screaming. For eight months straight. It requires judicial approval to medicate foster children with more than antibiotics, so our hands were tied. For eight months straight.
After the adoption, we started melatonin. And I was able to catch some sleep. Finally.
In addition to our scream and sleep issues, his self-injurious behaviors and aggression rose to a level where action was required. Whacking his head on the walls and glass doors, biting himself, slapping his legs until they bruised, and attacking his little brother to the point where they could not be left alone together…our house became a war zone. He dumped his first bookshelf at two years old. Pulled a five foot high shelf down right over his head. The only thing that saved him was the position of his crib. Not long after that incident we started our first atypical antipsychotic. It brought the screaming episodes down from 4 hours at a time to 2-3 hours of hell. The breaks between rages gradually grew longer.
Due to growth spurts and losses of efficacy, a fast metabolism and side effect concerns, we’ve had to change and/or modify our med regiment countless times over these five years. And with every change, I would convince myself that this was it. This change would be the magic combination to stop the madness. And with every med change, and subsequent lack of improvement, disappointment would bog me down into despair.
Throughout several PCS moves, we’ve had many different sets of eyeballs on our son. We’ve had different schools of thoughts shared, and different chemical combinations, adjustments and plans. This is to say nothing of the therapies we dove head first into: PCIT, attachment therapy, ABA therapy, OT/PT, and counseling. And before anyone rushes to tell me of the glories of a GF/CF/SF bleach enema lifestyle, we did try GF/CF; no change. All of these efforts and such a minimum return. We’ve hit a plateau. His emotions still control him; the rage still runs his life.
My search for a panacea continues. My goal is to get him to the point where he is no longer a danger to himself or his siblings. We’ve seen incredible things from one antiepileptic – until the side effects led to a very drastic change.
And so, the number of white, blue and yellow pills is climbing.
As my husband recently said, even if we find the perfect med combination, he is still going to be autistic. He is still going to have neurological challenges. He will never be a typically developing kid.
So how will we know when to stop with the med changes? When will we hit the point where, behaviorally, emotionally, we realize that it won’t get any better from pharmacology? And will we recognize it when we get there? Are my expectations of what these meds can do for us unrealistic? I’m trying to keep him out of an institution, or out of jail. That sounds extreme. His rage is extreme. Our life is extreme. His meds are extreme.
I think I’ve accepted his autism, his neurology, his limitations and his differences. And then my husband will bring something to light that makes me question what I am trying to do.
I have no answers; only more questions. I am left feeling unsure, indecisive, and afraid.
Special needs parenting: it’s not for wimps.
Kelly is a Navy wife and mother to four children: a 17-year-old neurotypical (if you can say that about a teenager!) daughter, 6- and 5-year-old boys on the spectrum; and, since life was getting a touch boring, another beautiful baby girl. Kelly is the Vice President of Marketing and Public Relations for Military Special Needs Network. MSNN is a peer-to-peer support organization founded to respond to the needs of all branches of the military and of our Exceptional Family Members. We strive to provide family and emotional support and lasting friendships – See more at: http://