A Whiney Self Indulgent Puke Post

It’s been a suckass week beginning with six hours of violent vomiting Sunday, rising to a mid-week farewell to my Sailor Boy, and culminating with Little Guy’s fist in my stomach Friday afternoon.

My illness triggered the avalanche, my slow recovery and Sailor Boy and his precious Love’s departure AGAIN, kept the boulders tumbling. My adopted kids do not cope well with me being anything short of vivacious. For them, any show of weakness is a warning that I may just disappear completely. The slide into their primal brains where they know only flight or fight is quick and easy and I wasn’t able to throw out any rescue lines from my nauseated puddle on the bathroom floor.

Little Guy has been aggressive and uncooperative at school and Little Sister has been honing her thievery and demolition skills while not sleeping EVER and resultingly becoming increasingly irritable. Throw in lingering nausea, malaise, and a teething baby and welcome to my week. Did I mention that it sucked ass?

I thought things peaked the morning Little Sister decided to chew up her fish oil capsule and spit it all over me–nothing like the smell of fish oil mixed with someone else’s saliva  in your hair to soothe an upset stomach–herself, and the kitchen then throw a fit in an effort to avoid going to school and facing the music for getting caught stealing the day before.

I was wrong.

Earlier this week, Little Guy had his Nintendo DS privileges revoked for being aggressive at school. He was told he could earn it back with three days of good behavior. The third day came and he reported all was well. In fact, his teacher had taken the time to write “Great Day” on his behavior log. I returned the DS, went to check the log and the festivities began.

Turns out he had failed to mention a physical altercation with a classmate the day before. I confiscated the DS and he attacked. He came at me with closed fists and seething rage. He screamed for half an hour. I haven’t seen him act like this in almost two years. It shook me. It hurt my feelings and left me wallowing in self pity.

It’s dark in this place at times, but I’m not supposed to talk about that. At a recent training with our Foster care agency, I was asked to comment on working with children diagnosed under the Fetal Alcohol Spectrum Disorders, but was quickly shut down when I mentioned the static nature of these kids’ issues and the need to change the environment rather than trying to change the child (because in most cases of FASD it is not possible.) That doesn’t fit into the sugary sweet rescue model and heaven knows we wouldn’t want to frighten the new families with, well, the truth.

I’ve attended trainings focused on the need for respite and assistance to prevent secondary trauma and compassion fatigue to caregivers of special needs children.

Lovely sentiment, but these services do not exist.

I can’t even find an occasional babysitter for my infant foster daughter and in 2.5 years, I have never been able to find respite for my 8-year-old with FAS. My attempts always yield responses, but said responders slink back into the night when I begin to talk about the issues.

The neurologist is sympathetic and validates my woes as I let down my guard and weep in his office, sharing that his other parents of children with an FASD describe all the same behaviors, he pats my shoulder tells me that I’m doing a good job, and writes out prescriptions that we both know will likely do no good.

I subscribe to a Facebook support group for families parenting children with an FASD. Our stories are all the same. We are in chronic crises. We are exhausted. Our other children are suffering. Some of us are being physically abused by our children. There is no solution and outsiders often undermine our efforts. Just this week, my daughter had a teacher lie to cover for her after she stole school supplies from another teacher. The second teacher claimed to have given them to my daughter even though my daughter confessed to having stolen them. The teacher who was the victim of her theft failed to require my daughter to make amends with a service or chore, as I directed, for reasons I cannot explain. She hasn’t responded to my requests for a team meeting so that we can all revisit her IEP and make sure it’s being followed–as required by law.

It is a never ending battle on every front. Usually I’m a mighty warrior, often even enjoying the quest for victory, but this week when my internal forces came under attack, as well, I was defenseless and threw up the flag along with my guts.

I’ve cried. A. Lot. I’ve been unforgiving. I’ve been angry. I’ve confronted my family about their failings. I’ve asked “why me?” I’ve cursed every aspect of this process that has often left me lonely, afraid, powerless, and at the receiving end of blows from a child who I would give my eyes to save. I’ve been pissed off at their birth parents, their workers, a system that runs on deception, a lack of services, a lack of understanding, uneducated educators, inept practitioners, and the fucking rain. I allowed myself a long overdue meltdown.

I’m done now. My appetite returned on Friday relieving the weakness I had felt all week. By Saturday I was able to resume exercising. After a meltdown of his own, Little Guy was overcome with remorse and eager to regain my favor. I’ve never been able to resist his charms long and we are good again. We forgot to set the bedroom alarm last night, and Little Sister raided my purse in the night to which I responded unemotionally accepting this is a product of her disability and not a personal attack.

It stopped raining.

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.

A Dark Day

All I want to do is slump over head in hands and weep–deep mournful heaving sobs from the depths of my soul. A cold front rolled in last night, the sky is grey, and my heart is hurting.

Last night as I tucked her in, Little Sister informed me that she wanted to leave our family and go back to the last family because they gave her candy filled Easter eggs. It’s that simple for her. To pick up and go to another home for the purpose of acquiring meaningless objects–never mind the fact that said family asked for her removal after four months because they recognized early what took me longer to see. I felt like I’d been kicked in the teeth. I just got up and walked out.

It had already been a bad day. She announced proudly at school pick-up, that she “only” got two behavior marks today. She’s made zero progress behaviorally at school and is in no way bothered by this. She has even informed me that she likes upsetting her teacher. We had some errands to run which gave her opportunity to flirt with strangers, wiggling her fingers in a little wave under her chin, tilting her head to the side while grinning doe-eyed and everyone who passed by. It’s a behavior that makes my blood boil and sickens her siblings.

She’s ever ready for departure. She packs emergency bags. She lines up her belongings for quick access in a sudden move. She shops for caregivers everywhere she goes. She purposely annoys others for the thrill of seeing their distress. She fancies herself the center of the universe and is disruptive or sullen when others don’t share this view. She demonstrates no attachment to our family. Most of the time, I cope without taking it personally. I’m not doing that so well lately.

I’m up to my chin in academic and behavioral assessments as we work to find a system that will help her reach her full potential. We waited six weeks to get in with a specialist for FASD (Fetal Alcohol Spectrum Disorder) evaluation only to have her wake with a fever on the morning of the appointment and have to reschedule. We now wait another six weeks. I’ve filled out a mountain of paperwork for school assessments and go in for a third round of meetings this week.

I recently attended a webinar on Attachment Disorder where I explained her history and asked the lecturer–an expert in the field whose name is escaping me at the moment–if it were realistic to expect my child to heal. His answer:

“No.”

At every turn I am informed there isn’t much hope for this child. We’ve already been “fired” by one therapist who said she wasn’t making any progress. We have another who is supportive of me, but offers a dismal prognosis. Add FASD to RAD and we’re looking a lifetime of management of a disconnected being whose behavior is often downright hurtful, and whose judgement, and moral compass are so skewed that they will certainly lead down dangerous paths. All the markers of a more successful outcome were missed. Early diagnosis and intervention are the key and even then the future is not bright. I am afraid. I am lost. I am hopeless. I am angry.

I’m angry at her birth mother who drank during pregnancy and failed to take parental responsibility. I am angry at the system that took her from her birth family only to toss her around from placement to placement for years systematically destroying her ability to form a normal human attachment. I am angry that despite the fact that an estimated 70 percent of kids who come into foster care are affected by Fetal Alcohol Exposure, there is no system for serving them–simply finding a knowledgeable practitioner is a battle and add the need to find one who accepts medicaid and you’ve got a full on war. I’m angry that it has been a never ending uphill climb. I’m angry that I can’t get any help. Although Post Adoption Services will help fund respite care, it is up to the family to find a caregiver and then ask said caregiver to submit to FBI criminal background checks. As you can imagine, people aren’t exactly lining up to help you when you treat them like criminals. I am angry that this effort to do good has done my family so much harm. I am angry with myself for not being stronger, kinder, better. I’m angry that I’m angry.

So I asked Little Sister this morning on the way to school as she chatted cheerfully with no awareness or concern that she had hurt me, “Since you don’t want to live with us, perhaps I should find a sitter for you when we go on vacation?” “I wouldn’t want you to be stuck in the car all that time with people you don’t want to be around.”

Her eyes grew wide, suddenly aware that she may have misplayed her hand and risked acquiring some “thing,” and she quickly responded, “Now I do want to live with you.”