Navigating the Minefield

The last two weeks with her have been torture and I am feeling defeated.  I no longer believe that my adopted daughter will ever attach to our family and the misery of the effort is becoming unbearable.

We’ve been dealing with escalating behaviors that nobody wants to hear about, but I’m going to talk about anyway.

imageShe hates me. She hates our family. She hates herself. I can’t say that I’m her biggest fan right now, either. Her internalized sense of worthlessnes manifests as rage. Her brain damage keeps her from recovering. Too many moves, too many broken promises, and a brain damaged by in utero exposure to alcohol and narcotics have broken her.

This is where most people want to offer encouraging words about love and time. Please don’t.
Fetal Alcohol Syndrome results in static encephalopathy. Simply stated: unchanging brain damage. It is not going to get better.

Ever.

Throw in a heaping dose of Reactive Attachment Disorder (RAD)–mental illness caused by a breakdown in early parent-child attachment–and the already gloomy picture darkens. In her recent Yahoo News story about adoption dissolution “Giving away ‘Anatoly Z.’ author Lisa Belkin called RAD and FAS “the twin land mines of adoption.” I couldn’t have said it better myself.

She’s gone and she’s not coming back. In fact, I can only realistically expect her behaviors to worsen as she ages. The general consensus is that despite usually normal IQs, kids with an FASD (Fetal Alcohol Spectrum Disorder–an umbrella term for all diagnosis related to in utero alcohol exposure) tend to operate at about half their chronological age. This means an ever widening gap. Most have learning disabilities and deficits in executive functions. They have problems with impulse control, self regulation, memory, judgement, cause and effect, and abstract concepts. This translates into a child who is measurably “normal” exhibiting out of control behavior, is academically delayed or stagnant, and never learns from past experiences. There is a need for someone to always act as an external conscience because they never internalize one.

For many there is also a hypersexualized element surfacing at a very early age. There is an expression in this bizarre world in which I now reside that summarizes the outcome-“The boys get locked up and the girls get knocked up.” We already must keep constant vigil with my 8-year-old to prevent inappropriate behavior with boys and men–including her own brother.

Although kids can sometimes recover or at least improve from RAD with therapeutic parenting, those with the dual diagnosis FASD/RAD usually do not. There are exceptions. They are few and far between. The norm is thousands of families living in crisis with children whose behavior is difficult and strange at best and dangerous at worst with no hope of ever getting better.

I live with it everyday and I hear the stories from others on the support boards I belong to. Every time I begin to believe we have made some progress, I am slapped in the face with a reminder that things are actually worse than I thought. Although her overt raging tantrums have subsided, she simply traded them in for more subdued and more disturbing passive aggressive behaviors. She’s becoming more skilled at dysfunction.

I empty the pencil shavings and shredded paper she hoards from her pockets and pillowcase. I keep constant watch. I can never leave anything unattended within her reach or she will break/shred it as soon as my back is turned. I must send her to her room and set the alarm so that I can use the restroom. I must ration toothpaste and soap or she will fingerpaint all over the bathroom with it. I can’t leave a toilet brush in the bathroom or she will use it to play with her feces. She spits and urinates on the bathroom floor. She steals school supplies and hair clips from her classmates. She raids my purse. She discovered that if she opened and closed her bedroom door quickly enough, the alarm wouldn’t sound long enough to wake anyone and was prowling the house at night. I discovered this when I found a video on my phone she had made of herself singing and acting seductively. That was pretty disturbing to watch.

I regularly “flip” her room to find scissors and countless other stolen items and rotting hoarded food wrapped up in clothing hidden in her drawers. I also find the shredded remains of items destroyed by said scissors under her mattress and mounded in strange piles in the corners. She never expresses any concern or remorse when confronted about these transgressions. I feel like I live in a prison.

Save the other families who live in this world, we are alone. Many of our kids are master manipulators and we deal with an ever shrinking circle as those within it buy into the performance and become convinced that we are either lying or crazy. The concept of mental illness in children is so disturbing that we’d rather call it anything else and blame the caregiver. I rarely talk about any of this to anyone but her therapist because I really can’t handle the empty future projections or judgement.

My daughter’s personality is so fractured that she can become a completely different person with a change in audience. She is the master of doe-eyed feigned helplessness in the presence of other adults, a controlling bully with her peers, and wildly extroverted and sassy with older kids/young adults. A favorite behavior of hers is to follow me around at a gathering making repeated requests for me to get her food. After the fourth or fifth time when I tell her “no more” she’ll wait for an audience and ask again so she can appear to be the victim of the heartless mother who won’t feed her.

This was especially delightful when at a recent gathering round the fire, she stood to make sure she had everyone’s attention and said in her best polite innocent voice, “Mommy, may I have a kiss?” She was talking about a Hershey’s chocolate kiss and had already been told “no more” after several servings, but the shocked response was palpable when I told her to sit down. I gotta admit, it was a pretty clever tactic and we all had a chuckle when I explained. Later, at the same event, I had to physically move her after she nestled up next to an adult male friend.

Our efforts to protect other people and property from our children who lose all control when unsupervised is perceived as fanatical and controlling. I watch my daughter always and her IEP requires constant supervision at school. This is for her protection as well as other children’s. She cannot control her impulses when unsupervised and is also very easily led. Although not inherently aggressive, another child convinced her to throw a rock at a classmate on the playground last year. FASDers are rarely the masterminds behind the crime, but are easily convinced to drive the getaway car.

We live with locks and alarms. Some are afraid of their own children–the boys, especially, but also many girls tend to be aggressive and I’ve read countless stories of parents and siblings being seriously harmed by their children/siblings. I’m talking broken bones. Some parents sleep with weapons bedside.

Our lives are full of acronyms like ARD and IEP. We can’t find any resources for help (because except in tiny corners of the planet, they do not exist.) Therapists fire us. Knowledgeable practitioners are rare and overbooked. My daughter has waited nine months for her three month follow-up with the neurologist because his schedule was full. I made 29 calls and spent hours on hold before I could find a pediatric neurologist an hour away who accepted her insurance and was accepting new patients to begin with. In the time that we’ve waited to see him again, her sleep medication prescription has expired twice and I was never able to get them to call in a refill the second time. I now have a sleep deprived mentally ill, brain damaged child under my roof. It’s very bad.

It’s not going to get better. As all parents of children with an FASD eventually do, we are about to venture into the world of psychotropic meds to try to mitigate some of the behaviors. Most of our kids wind up on a cocktail of a sleep aid, stimulant, and mood stabilizer after much trial and error and often worsening symptoms. Even when a workable combination is found, it is ever changing as children grow and meds cease to be effective. Always a proponent of an unmedicated approach, it is with deep sorrow that I find myself here.

Her sleep deprivation and resulting foul mood, the unpredictable holiday scheduling, and visitors creating a parade of new audiences has had her spiraling out of control. She has told me point blank many times that she does not want to be here and is doing everything in her power to break my will to make her stay. As I worry about her treatment of my younger son who was also adopted, but is attached and thriving, see her glare at the new foster baby who just joined us, and look down the endless road to nowhere, surrender seems more and more the rational decision.